This space was created to document our lives since 2020. It is a collection of Dave's and my own photographs, our thoughts and reflections in the form of a diary. It has become a space for self-therapy in the context of our isolation. It is a permanent tribute to Dave, my partner, my love and best friend. 


Ever since Covid-19 became a pandemic, life has changed irreversibly for many of us. Living under lockdowns, the temporary (or, for some, permanent) end of a working life, a drastic reduction of human interaction, mental and physical illness, the loss of loved ones - we have all lived through this unprecedented time and still the disease may be here to stay.

Living in Tower Hamlets, one of the poorest boroughs in London, I have seen how the wealth gap matters in a pandemic. I have witnessed that the economically and socially disadvantaged are suffering a lot more, both physically and mentally. If you were economically and socially isolated before the pandemic, your isolation would most likely have tripled during it.

Not least in our borough, but across the country, ethnic minorities are more prone to catch the disease - many of them being front-line, low-paid workers enduring high infection risks working in the NHS, care homes, catering, hospitality and other industries. Covid deaths are higher among ethnic minority Britons than among their white counterparts.

When the government asked everyone to clap for the NHS, what was never talked about was the marginalised people, unable to access healthcare like most Britons. The NHS, like the rest of society, is ridden with structural inequalities and deep-seated prejudices which have been exposed during the pandemic. These inequalities in healthcare and other services are particularly prominent in a sharply class-divided neighbourhood like ours.

Throughout 2020, my partner Dave and I struggled living under the Covid outbreaks and lockdowns. We both had symptoms which indicated developing health problems, which led us to request tests and scans from the NHS. It was an unnecessarily long process, made doubly painful by the pandemic. At midday on the 10th of November 2020, after waiting and pacing up and down for two hours at the Royal London Hospital, we were given the news that neither of us was prepared for: Dave was diagnosed with stage four colon cancer.

"Oh dear, I am sorry," Dave said as he turned to me, as if to apologise for the prospect of his shortened life. I was shocked into silence. The news felt unreal. "Let me wake up from this nightmare," I screamed inside. When the consultation was nearly over, I burst into tears. As we left the hospital, we cried together in the street.

Dave's diagnosis crushed us and sent us into places where we had never been before, where we were led along by the randomness of fate. "I don't want to die. I want to be with you," Dave said to me one night. Heartbroken, we went into a cycle alternating between denial and despair. How do you live your life when you are told there is an end point coming sometime in the near future?

But over time, during 2021, we managed to find hope, because we desperately needed to hope. We discovered new strengths - and developed the strengths that I never knew we had. We have learned to deal with the multiple misfortunes that seem to rain down on us; we learned to drastically change the way we lived our lives - yes, we take long walks every day and have turned ourselves into healthy-eating freaks. Apart from Dave's chemotherapy, we explored various treatment options and sought advice on surgery.

Then, in February 2021, after a long process of demanding scans and waiting for results, I was diagnosed with an illness, too. Unlike Dave, I am an introvert and have chosen not to talk about my illness and its medical details in public. Suffice to say the problem was caught early enough and I'm going to live - as long as it doesn't come back.

What happened since 2020 has taught us so much about ourselves. It has truly been a self-discovery process for me. In adversity, I have learned to understand what's important in life and have become much closer to family and friends. I have regrets about things that I should have done in the past - visiting my family and spending more time with them, and talking more to friends. I've realised that I could have given more time to many good people around me...

I'm turning my many regrets into action for change. We have re-established our relationship with our neighbourhood and our local area, and got to know it a whole lot more. Strange to think that all these years when I had been away for work, we had forgotten that there is so much to discover about the East End where we have lived for many years...

Here, I'm creating a photographic diary of our lives in the East End (2020 onwards), during which we struggled with the pandemic and battled with our illnesses. What we have and what we do in our local area have kept us going all this time. 


2020-21

July 2020

Covid-19 conceals deepening privatisation of the NHS

The Government's Covid-19 response has accelerated private outsourcing – and the race toward a disastrously fragmented health system



'The NHS is collapsing, just as many predicted it would, and it is doing so because of the machinations of politicians over some four decades. Between 1980 and 2010, many politicians took decisions that weakened the NHS. They introduced an internal marketplace, they loaded the service with outsource debt, and they fragmented it into tiny parts, thousands of which have been outsourced and are run by non-NHS providers including private companies. And having weakened the service, politicians since 2010 have reduced budgets hugely, so that we entered the pandemic in what was already a very precarious situation, with over four million NHS patients on waiting lists [This number was to rise to over seven million for England alone in a couple of years as she wrote later]. The pandemic then cause huge number of operations to be delayed and cancelled repeatedly, as well as severely affecting the provision of much specialist healthcare.'   - Dr Julia Grace Patterson, Critical: Why the NHS is Being Betrayed and How We Can Fight for It


10 November 

We didn't expect the worst. I thought Dave had probably early-stage cancer and it would be treatable. When the consultant sat us down and told us that the cancer had spread to the liver and there were quite a few lesions, I felt as if the world just collapsed in front of me... A deep, dark hole just opened up under my feet...

The consultant said that a surgery would be difficult. The only option right now is chemotherapy - with the aim to control the cancer and hopefully shrink the tumours. Dave hasn't felt any pain, and there have been no symptoms until recently. The consultant said the cancer could have started a couple of years ago... With no NHS colon cancer screening in place at the time, there was no way Dave could detect anything unusual. (The NHS colon cancer screening for those aged between 50-59 only started in April 2021 - too late for Dave.) 

I don't know how many times we held each other and cried... I said to Dave that we must fight this cancer and keep fighting it. He promised me that he will not give up. He called the hospital to try to bring forward the meeting with the oncologist. The chemotherapy is scheduled for within two weeks.

Early this evening Dave wanted to walk to Tower Bridge. He just felt like it and wanted to do it. On top of the Bridge, we caught the beautiful sunset...I couldn't help crying again.

"We will come here, again and again," Dave said to me, putting on a brave face. But I felt my heart break every minute when I thought of his terminal illness. How very unfair! Dave loves life. He deserves life. 


12 November

It's taking time to book an appointment with the oncologist - Dave's trying to ask him/her to respond via the nurse we met in the team. He called yesterday and again today. Still no reply. It is only after a meeting with the oncologist that Dave will receive chemotherapy. So any delay is bad.

Dave and I took our daily walk - to Brick Lane today. We had a little cry again... We were feeling so helpless. Then I spent the evening looking up information online about his cancer. We cried together in bed...


13 November

Dave's oncologist called and went through his case with him. The plan is to start targeted therapy next Friday. However, the doctor said that the liver doesn't look likely to be operated on. We have to wait till chemo has been under way for three months, to see if the condition is suitable for surgery. Ablation is an option, he said. It's extremely worrying, but at least the plan is in place and Dave will meet the doctor and chemo nurse team next Wednesday.

We took a walk to the city, photographing architecture along the way. Dave suddenly turned to me and said, "Maybe it's against nature that two people are in love with each other." Is his cancer some kind of horrible punishment for happiness?

 

15 November

Dave's brother Michael visited last night, bringing loads of bog rolls and printing paper to us. He came in and had a cup of green tea with us.

Michael has been exchanging messages with us all week, checking on us. Sometimes he tried to cheer us up by sending humorous memes... Last night he brought a series of Sweeney for us to watch - it was a comedy series in the 1970s that Dave and Michael used to watch with their parents.

Dave and I cried every time we thought about the prospect of being parted... I'm feeling so angry and destroyed inside. How are we going to carry on with life if we don't try to block the idea of the terminal illness out of our minds?

We tried to distract ourselves and watched Woody Allen's Life and Death last night... But as soon as the film ended, it was back to reality again. 


21 November

I've been reading the brochures about cancer and chemotherapy. Scary to read about the possible infections after chemo... At the moment, a week before Dave's chemo, we're trying our best not to catch Covid...

By now, I've done enough online research to know the meaning of Dave's prognosis…I want to cry each time I look at him. I feel his fear and my heart never stops breaking for him. At the same time, I must keep his hope up and encourage him to keep fighting.


26 November

Couldn't help crying at the thought of Dave's suffering. He couldn't help crying when hearing me cry. Despair runs our lives. But we carried on consoling each other and said we will fight it with all our strengths...

I'm dealing with my own health problems at the same time. This morning, I saw that my two referrals were overdue (no booking yet), so I called the GP surgery. The receptionist said the system was down and "call back tomorrow". I was furious. "If someone needs help, you're going to tell them to call back tomorrow?" She said quite firmly, "Yes."

My e-consultation request yesterday was useless - the surgery replied by text saying someone will call me on the 30th, which is 4 days' time.

Feeling ill all day - belly ache, feeling like vomiting. Didn't go to the A&E because I didn't want the risk of catching Covid. I have to make sure there's no risk when Dave's going to chemo tomorrow morning. Prepared fruit and a sandwich for his first day. Dave packed his trousers and two books, to take with him to Barts.

treatment at Barts, photo by Dave
treatment at Barts, photo by Dave
NHS lunch, by Dave
NHS lunch, by Dave
friendly "sandwich lady" at Barts, photo by Dave
friendly "sandwich lady" at Barts, photo by Dave

27 November

Got up at 6am to prepare for Dave's pick-up at 7.30am. He's got his lunchbox (a sandwich and an apple) in his rucksack. It was so sad to see him get on the ambulance alone...I wasn't allowed to go with him because of Covid risks. (Later, we started to walk to Barts instead of using the ambulance.) 

A lot of tears this morning...especially when he sent a picture of him with a face mask in the chemo ward on the 7th floor of Barts. I don't want him to be alone. I can only keep praying that his treatment will go well today and he will be strong and get better...

Dave sent me many texts just before 9.30am when he was supposed to start the procedure. Then he was kept waiting in a room, with thirty other patients. I started washing and chopping all the veg after 10am, to prepare for dinner. We continued to exchange texts. After midday, Dave was still waiting. The ward was hopelessly inefficient. It was extremely insensitive to keep cancer patients waiting for so long... We were going to find out the severe problem of staff shortage later on...

Michael texted to ask if I have eaten. I said I'm going to have my Special K... He said I should eat something with more protein, like eggs. Then, to cheer me up, he sent me a picture of Mokey, his cat, sitting on his computer.

Dave finally got called in, and was given anti-sickness drug at around 3pm. Then half an hour later, he was given his first chemo infusion. He said his tummy felt funny but overall it was fine. Then at 4pm, he was given a second infusion. He then relaxed and started reading. Then the third infusion to take home. Dave called it a pickle jar... The nurse will come on Sunday to pick it up. There are also the anti-sickness drugs to take for five days and steroid for two days...

When Dave was dropped off by the ambulance and came home, he was tired but had quite good appetite. He had the whole plate of dinner that I prepared: cod with ginger and garlic, mash potatoes, asparagus, cabbage.


7 December

Dave's oncologist at Barts brought some good news - good news in the middle of a horrible situation... Dave's test results have come back – the type of his tumours were OK for him to use Cetuximab, an important targeted therapy. We were so relieved to hear the news... 

His next chemo will be on Friday, and then on the 24th, to be confirmed. There are no major issues with his response to chemo, apart from the diarrhea.


12 December

Dave was picked up just after 7.30am to go to Barts for the second chemotherapy.

The session started around 9.30am. He was given an anti-nausea drip, then straight onto the new drug, Cetuximab. Following that, he was given Irinotacan and then 5FU. They also gave him two anti-cramp injections - cramps seem one of the side effects of Cetuximab.

Dave had the avocado and chicken sandwich I made for him, and on top of that he had an egg and mayo sandwich from the hospital trolley...and an apple and banana.

I prepared salmon and beans, plus a variety of dumplings for dinner...Lots of protein. Dave seemed to like the dinner and ate everything on the plate. He seemed to respond well to the chemo today and didn't feel too tired. In fact, he was feeling more cheerful. He told me about his day in the hospital…

15 December

We walked via Cable Street to Tower Bridge, and watched the boats against the sunset. This is one of our favourite old routes... Many memories, many photographs to remember them by. We walked back through Wapping, like we always did. We chatted and joked about the idea of living in a nice flat near the river, to spend our last days.

My parents and family have been worried about our situation and we talk and message each other regularly. My mother and sister have been praying for Dave... This evening I received a present from my brother, sister-in-law and the children. It was a winter blanket, fluffy and warm... And there were three cards in the box: one card from the family, one from my nephew Hong Hong which he drew himself, and another one he made from last year. He wrote the heart-warming words "I love you" inside...

My brother wrote these words, too, on the family card to me. I know that it's not easy for him to express emotions - or at least that was what I knew ten years ago...I remember the time when he used to stay with me in East London, he couldn't bring himself to say "happy birthday" to me, but bought me a really lovely wallet and handed it to me... These words I received today made me feel that, deep down, he's still my little brother, despite all the changes...


22 December 

The Covid situation never ceases to get worse...We have 3,913 cases in Tower Hamlets today, a frightening increase...The new Covid variant seems to spread fast and there's no stopping it...14 countries have now banned flights from Britain. So exhausted with this whole pandemic. 

by Dave
by Dave

1 January 2021

We are glad to see the back of 2020. But very sadly its impact remains with us...and we'll never be able to recover from it.

Dave has been feeling very tired in the past couple of days. He has some belly cramps and no appetite. It is worrying but these seem to be the predicted effects of the targeted chemo drug...Seeing him dozing off on the sofa worries me.

One of the Taiwanese oncologists' advice online was that, during the treatment, it would be ideal for a patient to develop a good and close relationship with the doctor. That will enable the patient to feel more informed about his/her own situation and more confident about recovery. Sadly, this kind of relationship with an oncologist does not look likely here... 


3 January 

I cooked mackerel with garlic, ginger plus turmeric and a bit of paprika, adding sundried tomatoes. Dave mashed up the potatoes from the other day...With salad, it wasn't a bad meal, which Dave ate up... Improvement from yesterday when he didn't have any appetite at all.

Michael came to visit. To follow the rules, we didn't meet him indoors. We stood around the car park, walking up and down with him. Chatted about Christmas and Dave's treatment... It started to rain, so we stood holding our umbrellas, socially distanced, and carried on talking.


Greenwich, May 2021
Greenwich, May 2021
dining during Covid (we were only watching, not dining!)
dining during Covid (we were only watching, not dining!)
we went to a cafe in May 2021, for the first time since pandemic started
we went to a cafe in May 2021, for the first time since pandemic started

Patients in limbo after cancelled cancer surgery as Covid delays NHS care


18 January

Dave's oncologist called. He brought some good news. Dave's tumour markers have fallen by 25% (up to the 6th of January)!

Dave asked him about the changeable moods and anxiety. The doctor said that was the effect of steroids. 



22 February 

The lockdown will be lifted in several stages from the 8th of March. So far, over 17 million people have been vaccinated.

Thinking more of the advice from Taiwanese doctors to cancer patients: Change your environment. If we have the choice, we'll be moving out of the country!


March 

Johnson wants to move on from Covid - 125,000 deaths shows why we need an inquiry


9 March 

Dave decided to take only one steroids tablet today, so that he will have one to take tomorrow as well (instead of two today). That made him much more tired today... We took a slightly shorter walk from Stepney to Limehouse.

I've been talking with my family regularly. My brother sent a message today, saying, "I know that you must be under huge pressure right now. If you'd like to talk, please let me know. I'm your family." It really moved me. We had a little chat then...


12 March 

Based on cousin Sarah's advice, we went to London Bridge Hospital to see consultant Mark George, to discuss treatment options. Mark George looked at Dave's medical reports and scan results, and concluded that the NHS treatment has been positive and working well. He said Dave should continue with it, of course... He also said that other stronger drugs like Avastin can be added along the way.

However, he made it clear that a liver surgery is not possible. Nor an ablation. This is because there are too many lesions in the liver. A colon surgery, he said, will be pointless because the liver is filled with cancer... A colon surgery will weaken the immune system and any complications will have to disrupt the treatment for the liver. Then Dave asked about liver transplant. Mark George said it's not possible because the immune system will have to be suppressed which will help cancer to grow.

The key is to carry on with the current treatment and try to prolong life, he said. He recommended that Dave sees a liver expert at the same hospital, which we will do soon.

So sad to be given little hope...Yet we both thought this might be the outcome of the meeting. It has come to a point where we are taking things as they come... Feeling mentally drained on the walk back home. Dave felt particularly tired today, as it was his 7th day after chemo.


8 June 

We went to London Bridge Hospital to see a liver specialist and surgeon this afternoon. I was very nervous and didn't know what to expect from him... I was happily surprised. The surgeon told us that he's very pleased with Dave's scan results, both CT scan and MRI. The MRI of the liver shows that the size and number of tumours have reduced significantly. Some have even disappeared. Dave has responded very well to treatment.

The surgeon said that this means that Dave will be able to have surgeries. The liver is operable, he said, contrary to other doctors' opinions. All Dave needs to do is have a PET scan to evaluate further, he said. This means Dave will have to stop chemo for two weeks in order to have the PET scan. And after that he will need to stop 4 weeks' chemo before the surgery.

The surgeon thinks that the surgery needs to take place earlier than later - as soon as can be. July is his estimated time when all's ready. 

Dave will need to talk with the NHS oncologist, about the surgery within the NHS so that it will not cost him anything. This private surgeon actually works in Kings College within the NHS, too. He said "please tell the oncologists that you are ready for the surgery".

We are so thrilled. We want to believe he's correct. This is the best news we've had since last autumn...


12 July

Dave got a call from Kings College team saying their decision is NO to his surgery. It might have much to do with what they see in the PET scan...details of which they will talk about on Thursday when we visit the team. Feels like destiny is taking us where destiny goes... We feel we're losing control...


15 July 

Feeling so sad for Dave. He was still trying to think positively even after the "No" from Kings College. I feel that we've been pushed into a way of thinking that anything will come our way and there's nothing we could do about it... Helpless, and feels like hope is running out. My whole body seems to be responding to all this... Feeling dizzy and unwell this afternoon...Had to lie down even when talking on the phone...

When I finally regained my energy level, I dragged myself out for a walk with Dave in the early evening. I'm going to keep trying my best, keep up the good diet and exercises - all towards the aim of getting a surgery for Dave in three months' time.


29 July

Dave called his nurse and asked more info about the Royal London meeting in which we will continue to discuss the surgery option. She said that the team thought a liver surgery should happen first. But the risks are too big for them to consider at this stage. They said Dave should simply continue with his chemo. She booked an appointment for Dave to meet his oncologist face-to-face in early August. His oncologist always gave me the impressions that he was never ready for the consultation...

Went with Dave to have our regular pre-chemo blood test at Royal London. Then I went home and cooked a veg stew and chicken teriyaki. 


10 August 

Walked over to Barts with Dave for his meeting with the oncologist who just came back from holiday. He asked Dave not to be too optimistic about the outcome of King's College's considerations for his surgery in three months' time. "It's not so black and white, so don't get too upset if they turn it down again," he said.

He encouraged us to look at it more in terms of shades of grey...He said that there is always the possibility of tumours coming back even after surgery. That will mean returning to chemo. And that's what the King's College team was concerned about...

At this moment, all that Dave can do is carry on with chemo. The PET-scan will be scheduled for the end of September.

We are getting used to this pattern of news...Trying to live with misfortunes is a strange thing. You learn to negotiate and bargain with a very bad situation... All we can do is to carry on and be as strong as we can be.

    Photo by Dave, at the end of our walk (masked-up) with John, Olga & friends, 3 September 2021


16 September

For Dave's birthday this year, we weren't able to organise a birthday meal with friends because of Covid risks. I invited Michael for a three-person dinner and he was free this evening. I got us delicious Greek food for a celebratory dinner: A range of meze dishes followed by lemon chicken for us and beef and chips for Michael. Plus sweet sponge and strawberries and peach for dissert. Now that's just a warm-up for tomorrow - Dave's actual birthday!


17 September

Got up early and got ready to open the door to delivery of various treats for Dave's birthday! He received many cards and good wishes from family and friends. He also chatted with cousin Sarah for a while. Yuren and my parents called to give Dave their good wishes. My parents were singing happy birthday, which cheered Dave up... Yuren chatted with us for a while. Les also kindly sent his birthday wishes. 

We waited for the nurse to come change Dave's dressing. Then we walked to Shoreditch for a celebratory tapas lunch which Dave enjoyed a lot.

Celebration continued in the evening, with more pressies from me! 

18 September

We went to Brighton for the day, to continue Dave's birthday celebration. Lots of sunshine, a beach festival, and many good people around... We walked about twenty miles today! 

 


                                        Photo by Dave, on our day out in Hastings, 21 September 2021


4 October 

Dave got a call from the nurse at Kings College Hospital. They had had a meeting discussing his case. His latest MRI and PET-scan show that the tumours aren't shrinking further. And in fact, one of them seems to be lit up in the PET-scan, indicating being active.

Dave will need detailed explanation from the surgeon in the team in two days' time. But the gist is that surgery is not being considered by them right now. They might be suggesting change of chemo drug...

Feeling depressed all day. 


7 October

Dave's King's College Hospital surgeon (the one we met at London Bridge Hospital) called this morning to explain to him about their decision. The latest MRI and PET scan show that there are two to three lesions increased slightly in size and there are two or three new lesions in the liver. There's also lymph nodes enlargement. All indicating a slight progression of the disease. He suggested a second line chemo but this needs to be discussed with the oncologist on Monday.

All very depressing. But we're trying to carry on as normal. Still keep on with the exercise - and trying to do more. We're doing around 15 hours of low to medium level exercise per week. Also an extra hour before bedtime.

We walked through Victoria Park to feed squirrels... Dave picked loads of chestnuts and fed them to several cute little squirrels...

11 October

Dave's Barts oncologist called to discuss the scans and treatment. He doesn't think the progression of the disease is as bad as what it might sound a few days ago from Kings College hospital. Because the MRI doesn't show a worse trend (and the disease is stable generally). So he thinks Dave should carry on with the same chemo for the moment... Whether or not Dave will have a different chemo drug will depend on how he's doing in the coming weeks and months...

The oncologist also said that Dave should stop thinking about reviewing for surgery every three months because that will be too stressful for him and he will suffer from it... "That doesn't mean you can't think about that later," the oncologist said.


12 October 

We walked ten miles to UCLH, for an appointment with Dr Hsu, for a second/third opinion. He discussed Dave's scans and treatment with us. He went through the liver MRI with us and also talked about the lymph node enlargement in the colon. If the progression continues (it's not clear whether it will), then Dave will change drugs - Dr Hsu suggested Folfox, with the addition of Avastin. But all this will have to be discussed with Dave's oncologist at Barts, too.

Surgery will no longer be the aim for now. The focus will be about what kind of treatment/drugs to use, to prolong Dave's life...



13 October, Dave's update to family and friends:

"Welcome back to our fortnightly update.

Today was my chemo number 22 at Barts. My session was completed in a record breaking 4 hours, with no delays at all and everything working, which is rare.

Since I last wrote, I had a second review of my suitability for liver surgery at King's College Hospital after being turned down three months ago. Unfortunately it was a "no" again, as, in the last three months, my tumours have not been responding as well as they have been before that. Although disappointing, this is a good demonstration of why I was turned down 3 months ago. If I had been given surgery then, my chemotherapy would have stopped and I would be in a more difficult position now, being in a weakened post-operative state and unable to fight back with chemo.

I have run over the situation with my liver surgeon at Kings, and my oncologists at Barts and at UCLH. For now, I won't be chasing surgery again, but trying to stabilise things.

As you probably know, chemo treatments start to be less effective as time goes on, usually within a year or so. It's the bad cells that survive the treatment that are the ones that carry on growing, thus causing the problems. It's like the Domestos slogan "kills all known germs dead" and wondering what Domestos does with the unknown germs.

I'll be able to tell you more over the next few weeks, but in the meantime, there are no changes to my treatment and I carry on as (new) normal, including a check on my bone density next week and hopefully some overdue top up Covid jabs.

We hope you are enjoying Autumn and remain safe from C*vid. HH [Hsiao-Hung] and I continue our 10 thousand steps a day regime and did 10 miles walking to and from UCLH yesterday!"


10 November 

Dave's tumour marker score went down to 4.3 this time. This is the lowest ever... We were so glad to know this. But it's still uncertain what it means in the long term... We will see in December when he has the scan.


25 November, Dave's update to family and friends:

"Greetings from East London. Hope you are OK and keeping warm. It's been very cold in London and we hope this isn't a trend for winter 21/22.

I had chemo session number 25 at Barts yesterday which went pretty well and I got out whilst it was still light(ish). This is the 1st anniversary of my first chemo (but you could have worked that out by dividing 52 weeks by 2, silly me!)

I eventually got the results of my bone density scan last week, and am happy to report that I am not suffering from chemotherapy induced osteoporosis. My GP explained that I'm just suffering from degeneration caused by my age! I've been prescribed calcium and vitamin D supplement tablets and have noticed that the pill packet is marked up with days of the week and am/pm to prevent me getting confused!

My toes continue to be sore, but I have now received (and am using) a cream called (I kid you not) "Udderly Smooth." It is not called that because it's made from cows, or cow products, but because it is based on a product that is used on cows' with sore udders (I kid you not x2).

…Apart from that, we have been pretty quiet with non-medical activities, apart from our regular daily walks. After HH cut my hair a few days ago, I made the foolish decision to "add some finishing touches" when she left the room. This resulted in me giving myself a number 1 crop and becoming an extra from Fight Club…

HH and I have also been taking advantage of some dining experience gift vouchers that we received 2 years ago from Michael and have been unable to use because of the p*nd*m*c. Last week HH and I has a lovely socially distanced lunch on top of the Gherkin and on Tuesday we are repeating the high dining experience in the Duck and Waffle restaurant on the 40th floor of the skyscraper in Bishopsgate. With my new haircut, I hope I will still be allowed in and not rejected as an undesirable.

Winter is definitely here and once we hit December I hope we are all able to enjoy the season, as far as is possible."




12 December


We met with Larry in front of Blind Beggar this afternoon. I hadn't seen him for the whole year because of the pandemic and the illnesses. Larry looked so much thinner and frail. I think he was taken aback by the way we looked, too. 

He said he hasn't been doing much during the pandemic apart from the walks in the neighbourhoods. He hasn't been back to do any more work in Bangladesh after his back injury.

The three of us walked into Bethnal Green Park. Dave and I fed the squirrels and persuaded Larry to do it, too. Then we walked over to the gallery cafe, and Larry had a banana cake and latte. We sat out in the garden and had a long catch-up for two and a half hours...I don't think Larry ever stopped talking! We updated him about our situation. He told us all about his ideas for future work... During our conversation about politics, we still had lots of things we disagreed about, just like we always did in the past. The pandemic certainly didn't change that! 

When we said goodbye, Larry said it was lovely to meet and talk. He said he has missed this. We both enjoyed it, too. "Let's do this again soon," I said to him. He said he will organise a dinner party in the new year. We waved at him as he crossed the road and disappeared into Cambridge Health Road. That moment, I had a strange feeling that I couldn't quite describe. The goodbye felt like a last goodbye. I shared this thought with Dave, like I always did with my "sixth sense". 


by Dave
by Dave
by Dave
by Dave
our Christmas card 2021
our Christmas card 2021
during the ten-mile walk on my birthday
during the ten-mile walk on my birthday
doing our own Christmas
doing our own Christmas
dinner with Michael on boxing day
dinner with Michael on boxing day

24 December 2021, Dave's update to family and friends:

"Well goodness gracious me, it's actually Christmas!

Sorry about the late update, it's been a busy run up to Christmas and I completed chemo number 27 on Wednesday… I had some MRI & CT scans to allow my oncologist to review how I'm doing with my current chemo treatment which I've been having unchanged for a year. I think some changes may have to come next year and I'll let you know, when I know…

We hope you are keeping safe. As a salutary lesson, we pulled out of our only Christmas meet up last week and then heard it had been cancelled anyway as the hosts both had caught Covid. What is worrying is that they were both double jabbed and had received the booster 2 or 3 weeks ago…" 


25 December 

What a lovely day! Spent the morning writing messages to family and friends and received messages from them, too... So many lovely kind wishes from everywhere...

Dave was in charge of the cooking today because I'm not good at roast. He started roasting the chicken and veg around midday when I was busy checking and reading the proofs sent to me by my publisher in Taipei. My book Ciao Ousmane has been translated and the translation is excellent.

Dave's Christmas dinner was absolutely delicious and we enjoyed it so much - not having had roast dinner for the whole year... I loved the parsnips and stuffing especially and asked for more... Then came the vegan Christmas pudding and mince pies, and even the the custard is vegan!

Dave enjoyed watching me open the pressies and seeing my response to each one... He also liked the coffee maker and espresso cups I got him, and especially the lounging suit, jumper and a East End history book... It was so lovely spending the day together. We managed to think about nothing but enjoying the day...


Boxing day, Vicky Park, photos by Dave


In the new year...

town hall, Cable Street
town hall, Cable Street
WE GOT MARRIED!
WE GOT MARRIED!
despite chemo side effects, Dave continues to enjoy our daily walks
despite chemo side effects, Dave continues to enjoy our daily walks


Photos by Dave (see below)

sunset, Vicky Park
sunset, Vicky Park
our shadows, Vicky Park
our shadows, Vicky Park
Whitechapel streets
Whitechapel streets
we're up to something in the town hall...!
we're up to something in the town hall...!
walk in the churchyard afterwards...
walk in the churchyard afterwards...
drinking non-alcoholic wine
drinking non-alcoholic wine
Vicky Park in the spring
Vicky Park in the spring
Bethnal Green squirrel
Bethnal Green squirrel
Dave loves feeding them...
Dave loves feeding them...
our loyal friend
our loyal friend
watching people at Vicky Park
watching people at Vicky Park

4 January 2022

We walked to Barts for Dave's appointment with his oncologist, to discuss his MRI and CT scan results. Not good news: One of his tumours in the liver has grown from 16mm to 29mm. Also a lymph node near colon has increased in size. This shows that Cetuximab has ceased to work so well. The oncologist decided to change drugs for Dave. He will be on Folfox (which includes 5FU and Oxaliplatin) and Avastin. Oxaliplatin will be for 12 cycles. Avastin has to be paid for.


10 January 

Walked with Dave to Barts for his chemo this morning - he started using new chemo drugs today. He wasn't given Avastin today but will start Avastin in the next cycle. From this chemo, he won't be taking steroids.

It seemed to have gone well. And his tumor marker this time is 6.7, which has gone down from last time.


13 January

A sunny day. We went to the town hall and got married! (See pictures above) We chose to stay low-key about this, given our circumstances. We had only two witnesses (Eammon and Michael) there and didn't invite any guest. We walked around the churchyard after the simple ceremony, and then went home and had fish and chips and some delicious non-alcoholic wine. Dave got us both a nice ring each, for the fun of it... 


14 January

After our meeting with Larry before Christmas, I've had some strange thoughts... Because he would normally send me a message or two after our meet-up, especially after Christmas. But this time he was silent. I was wondering what he was up to... 

Then I received a message from Larry's daughter Melissa today. She told me the shocking news: Larry has died two weeks ago, on the 29th of December. She said he died of a heart failure and it was sudden. He was alone in his flat. Was it frightening for him? Did he feel alone and helpless? It's unbearable to think about his last moments like this...It saddens me so much.

I thought back to the time when we met with Larry before Christmas. Although he was looking frail, he said he was feeling well and sounded hopeful for the future. He was looking forward to working again when the pandemic was over. 

On hearing his death, I wish we had visited him during the pandemic... Did he feel lonely and maybe depressed? Our illness prevented us from visiting people...and I do regret it very much.

Dave and I took a walk to the river today. I was thinking about Larry all the way - of our meetings and conversations all these years. 

I met him for the first time at a Unite meeting in the mid-2000s. He was a brilliant photographer and was working with the hotel and catering branch of the union. I was doing research with migrant workers there. We became friends and he used to come round to many dinner parties in my place in East Ham at the time. We started to work together sometimes - he was the photographer for several of my articles. I also helped him with talking to people in Chinatown for his photography project there. 

When I moved to Whitechapel, our friendship continued. I remember back in 2012 when my book Scattered Sand was published, Larry kindly organised a house party for me, to celebrate the publication. He cooked a lovely buffet dinner. He was always generous and kind to me. I wish I had done more for him.

Larry Herman's obituary

Some of Larry's work


25 January, Dave's update to family and friends:

"Greetings from St Bartholomew's Hospital (oncology suite, room 4) as I type this in the middle of chemo session number 29. I'm now on my full 'new' chemo regime which involves me having the private chemo drug Avastin on top of my new standard chemo treatment which I started two weeks ago.

As the treatment is new, the nurses are introducing it slowly, which means I'm in here for 5 or 6 hours, until they are happy about my reaction and next time they can pump the stuff into me more quickly…

So far, the side effects of my new treatment are as expected, with the only weird one being the avoidance of anything cold as it is painful to touch or drink for 5 days. Warm things are fine, but cold things physically hurt and if I drink anything too cold my throat spasms and I can't swallow, which is bloody disconcerting. I hope this isn't a bad sign, but both my oncologist and my specialist cancer nurse have left at the same time. I'm not taking it personally (unless I get some really weird side effects like growing an extra arm).

We were lucky enough to get a 4th Covid jab last week, which is the second booster dose needed by the clinically vulnerable… HH and I have been promised that if we test positive for Covid we are first in line to get the anti-viral pills which should prevent us needing hospitalisation. This sounds OK, but the only way to know if it works is if we catch Covid - which now seems increasingly likely as all restrictions and safeguards have been removed. If anything really bad happens to me, I will personally be haunting Boris Johnson.

All the best from the E1 two. Hey! That's a good pun, I must use that again."

8 February 2022, Dave's update to family and friends:

"Greetings and a belated happy lunar new year from HH and I.

I'm just having chemo session number 30.... Goodness me, that's a lot!

Whatever is in the sachets of liquid that get pumped into me over 5 hours, it's strong stuff. The Avastin infusion comes in a plastic sachet the same size as a packet of stir fry sauce (although it's a hell of a lot more expensive), but it still takes 90 minutes to be pumped in. The other main infusion is Oxaliplatin (and that contains platinum, woo hoo, I'm rich!) and this takes 2 hours. This is the chemical that causes the cold reaction and I'm now having to sit and wait for my yoghurt to get warm before I can eat it!

Apart from the cold reaction, the only other side effect I've had with the new treatment has been feeling really tired and creaky. I would prefer to have the acne I had with the previous treatment rather than feeling so washed out for a week, but this is what 'real' chemo feels like and I've been lucky to have avoided it for a year. I still believe that no longer being prescribed steroids has contributed, as they kept me feeling really perky during the past year, although I bet it's not a good idea to use them for too long…"


8 March, from Dave:

"Today, you find me doing chemo session 32 at Barts. Who would have thought that 2 weeks ago, Ukraine hadn't been invaded and things hadn't yet gone strange.

It's a lovely crisp 'nearly spring' day here and I've got a window seat for the next few hours...

My new treatment is chugging along and I have a scan in a week's time to see how the tumours are responding, so have fingers crossed. My side effects of being tired and creaky continue, so I now look at this as practice for when I'm 90... 

We are both watching the C*vid situation with a mixture of trepidation and interest. Cases are going up, but it's not a big jump, thank goodness. Our fingers remain crossed and we remain very careful, as we hope you all are…"

22 March 2022, Dave's update to family and friends:

"Greetings from Barts chemo session 33 (in bingo parlance "All the threes/dirty knee/fish, chips & peas" © Mecca Bingo).

It's definitely spring now and I've got the window seat whilst being infused with various cytotoxic chemical cocktails!

…I had a scan last week to check how I am responding to the new chemo and will get the results when I meet my new oncologist next Monday. That means fingers have to remain crossed for several days. It's been 2 months since I've seen an oncologist, which isn't very impressive, but the nurses check on me every fortnight…

We continue to watch incredulously as Covid case numbers rocket and the government appears to be cheating with the statistics, by stopping surveillance testing as well as removing any requirement for people to report self-testing results. Scientific estimates of infections are well in excess of 300,000, whilst the government claims less than a third of that. I suppose this is OK as long the infections are mild, so the critical numbers these days are hospitalisations and deaths. However, infection numbers are an indication of what could be happening in a few week's time..."

28 March, from Dave:

"We are just back home after a rather stressful afternoon at Barts. We turned up and my appointment appeared to have been cancelled, despite my specialist nurse arranging it. After a bit of a wait, they fitted me in and I eventually met my embarrassed oncologist.

Good news....

The CT scans from a couple of weeks ago showed that the new treatment has held my tumours in check and they haven't grown.

Not so good news....

Unfortunately, one of my chemo drugs, Oxaliplatin, will have to be dropped as I am starting to suffer from nerve damage and if I don't stop, I will lose feeling in my hands and feet..."


3 May 2022, Dave's update to family and friends:

"I'm just having chemo session number 36 after a bit of a delay as things are rather busy here at Barts. Things are so busy, I'm lounging in my executive chemo chair in a side room, on my own. It's a bit like going private, but the sandwiches are the same…

I had my 5th Covid jab last week (my third booster) and this time I had the Moderna jab. Give me 6 months and I will have had the full set of UK vaccines and get a free t-shirt.

The change to my treatment is certainly producing different side-effects from those in the past year. My main problem is feeling profoundly tired. After doing our daily steps, I now need a good rest and if I do anything else (e.g. some simple tidying in the garden for an hour or so) I feel as weak as a kitten and have a snooze in an armchair (like father, like son!)"



17 May 2022, from Dave:

"I'm writing this having walked home with HH from Barts following chemo 37, on a marvellous sunny, almost summer, evening. It's good to have some proper weather at last, although my Jonah effect could herald snowfall by Friday. The chemo started later than normal and there were a few delays as the ward was short of several nurses.

I continue to work through my fatigue problems, but people keep pointing out that I look well, which is very kind as I sometimes feel like I'm 95 when getting up and down from low level lounge furniture…"

14 June 2022, Dave's update to family and friends:

"Finally summer has arrived and I've just come home from chemo session 39 at Barts after a much earlier start than usual…

I had a CT scan last Saturday and will be discussing that and my tumour marker scores with my oncologist next week. That same week, I'm scheduled to have the PICC line in my arm removed and replaced with a port on my chest under my skin, so it's all go hospital-wise here!

We are still trying meet people before we go away [to Taiwan]. Last week we had a lovely meet up lunch (and historic East End stroll) with my cousins Sarah and Rachel and brother Michael. There will be other opportunities coming up and we'll be in touch! My tour-guide rates are very reasonable.....

Whilst doing the research for the walk I discovered a fascinating fact. The leader of the mutineers from the Battleship Potemkin, Afanasi Matushenko, stayed with anarchist writer and activist Rudolf Rocker in Dunstan House in Stepney Green 100 yards from where we live, back in 1905. If you want some more history like this, you'll have to come to visit. You'll see where Lenin used to have his lunch, and Stalin lodged on Jubilee Street, also round the corner from us.

Talking of "Jubilee", the East End "diamond" jubilee celebrations were pretty muted, as there aren't many monarchists in E1, although there was a large street party on Jubilee Street organised by the council…

All the very best from E1, the home of anarcho-syndicalism in London (see Rudolf Rocker, above, and Monty Python)...."


28 June, from Dave:

"How are you doing? We hope you are taking advantage of the good weather, be it gardening or ukulele playing....

I'm afraid this update is a whopper!

Treatment session 40 at Barts has been completed, christening my new 'port' which was fitted last week and starting my new, tablet and infusion based treatment (more on both of these later on). To celebrate the 40 chemo milestone, I was presented with a golden catheter which I then stuck into the new port in my chest (instead of having a small plastic tube permanently coming out of my arm and catching on the furniture).

Talking of 40th anniversaries, next week, brother Michael celebrates his 40th work anniversary at the same company! There are only 3 other people who have been there longer, and 2 of them have been locked in the basement since the 2008 banking crisis.

What now follows is mainly medical stuff, so please take some notes as I'll be asking questions later.

My recent scan results were a mixed bag. My oncologist has been off sick for some time (which doesn't bode well), but HH and I got an upgrade and saw a nice professor instead. From the scan, the radiologist's report and my raised tumour marker scores (graphs are available), it was clear my chemo treatment was not holding my liver tumours at bay. If you remember, my treatment was modified in March when its main active component was removed as I had started to lose feeling in my hands.

We discussed the next options and I agreed to go onto an new chemo regime immediately (Lonsurf, which is no relation of the washing powder, plus the Avastin I pay for already). The regime is tablets morning and evening over 2 weeks, followed by a 2 week rest period, with Avastin infusions every 2 weeks. This means I no longer need to have to take home a chemo pump full of poison, which is a bonus. However, it does mean I will now have to take an additional 10 tablets a day, so I can genuinely claim to rattle when I walk.

If this treatment doesn't work, there are various other options available, including restarting the use of the chemo that I stopped in March, since having numb hands is still better than being dead.

Last Wednesday, HH and I went to Barts at 7:30am for the fitting of my new chemo port (and the removal of the PICC line from my arm). The process was pretty involved as I had to spend an hour in the operating theatre under local anaesthetic. Highlights of the morning included having the jugular vein in my neck sliced open (a la Dracula), and during the procedure the surgeon reassuring me "it may feel like my fist is in your chest, but it's just my finger!" How we both laughed.... To be honest, it wasn't too painful, just unpleasant (as I had adopted the chicken approach of saying "yes" every time the anaesthetist asked "does that hurt?".) Ironically, the most painful part was at the end when the nurses pulled off all the sticky surgical tape which had also stuck to my body hair, thus providing me with a free chest wax along with the port.

One interesting feature of my port, became clear today when it made an audible click (like a press-stud fastener) when a needle was inserted, which was both satisfying and a little disconcerting. However, I'm now able to have a swim, bath and 4 less district nurse visits each month because the port (unlike me) is low maintenance and doesn't even require a dressing as it's under the skin on my chest, thus saving the NHS money.

The upshot of all this medical shenanigans has meant our trip to Taiwan is still going ahead, on or around the same date, as long as the new chemo works, but it does mean we'll only be there for a month or so...

I have just received my (not) sexy black surgical stockings, after being checked to ensure the blood pressure in my arms was more than that in my legs, so I don't over inflate (I think that's what the nurse said.....). Whilst being prepared, I was weighed and my height taken and I appear to have shrunk by over an inch! I was told that this is because I'm getting older (and you shrink) and my collapsed vertebra from last year. At this rate of shrinkage, HH will be taller than me in 8 years.

In further symptom news, apart from my brain fog, I've noticed that I don't feel the heat when everyone says it's too hot. At last I have a chemo effect that will be useful in Taiwan. Because of the brain fog I can't remember any new symptoms, but I'll let you know if I ever do remember them.

With my reducing height, brain fog, not feeling the heat, muscle wasted limbs, compression stockings and aches all over, my transition into a little old lady is nearly complete.... (Or do "I identify as a little old lady"?) Now where's the blanket for my knees?

In other E1 medical news, up to early this afternoon, HH was due to be having keyhole gallstone surgery next week which had been delayed for a year by C*vid. I was just going to say that the NHS got there in the end, but whilst she was waiting to pick me up from hospital today, she was called by the Royal London Hospital and told the operation had been postponed to early August and she will now have to fight to get an earlier slot if there is a cancellation. Grrrrr.

My Jonah/Jinx effect hasn't been so successful lately, although the weather is holding up nicely. I'll continue to predict snow and add that Boris will be cleared of all accusations against him…

As they used to say on Hill Street Blues in the 1980s 'Let's be careful out there.'"

13 July, Dave's update: 

"Time flies when you are having fun! Treatment session 41 at Barts was completed without too much fuss, yesterday.

2 weeks ago, it was sad to hear that Dame Deborah James, fund-raiser and campaigner, had died of bowel cancer that evening, aged 40. She was diagnosed in 2016, so I hope to continue my cancer fight for many years like she did, although adopting the nickname "Bowel Bloke", dressing in a poo costume and doing a podcast is unlikely (although dressing as a podcast and doing a poo is definitely possible....)

I have settled into my new chemo regime, and haven't had any major side effects, not even rattling with all the pills inside me. I am now on my monthly 2 week "rest period" and waiting for my tumour marker scores to see if the new treatment is working, so please cross fingers.

This all means it's still "all systems go" for the trip to Taiwan, as long as the new chemo is shown to be working and my oncology team say it's OK. I'm lining up the continuation of my treatment at a hospital in Taipei so everything should be seamless (like my surgical stockings)…

Last week HH and I had a lovely light lunch and a Thames stroll with our friends Mick and Sharon and their lovely dog Apollo, who is an absolute darling (just like Mick and Sharon).

Well, that's all for now folks!

I'll leave you with a fascinating fact from Smithfields, which is next to Barts Hospital in London. It popped up on YouTube yesterday and no, I don't know how the algorithms work, but it must have guessed I'd be interested.

Smithfields was the main spot where the executions used to happen (being next door to the Old Bailey and Newgate Prison). It's the spot where lots of martyrs were burned at the stake and William Wallace (Braveheart) was hung drawn and quartered (and there's a plaque outside Barts to that effect). In 1532, Henry the Eighth sentenced Richard Roose, a cook, to an unusual method of execution, he was boiled to death in a giant cauldron.

There, you learn something new every day.

Don't get boiled in the sun!"



September 2022

A short, long-awaited family visit, delayed by the pandemic. It was so lovely to stay with my parents in Taipei... 


17 September 

It's Dave's 59th birthday! We had a lovely walk along the river in the morning. Then a Japanese feast was organised by my family (my parents, brother, sister and sister-in-law) for Dave's birthday celebration. We presented the beautiful cake made by the local bakery (see video below). My two nephews enjoyed presenting their cards to Uncle David! 

Birthday boy coming down the stairs! (see video)

Then in late September, we had a beautiful few days in sunny Kenting in the south of the island, where we celebrated my parents' birthdays...


The last few days in Taipei...



Autumn, back in London...

Vicky Park once again, photos by Dave

10 November


Two years after Dave's diagnosis, there are fewer and fewer treatment options remaining... 

Dave received a call from Prof. Gerlinger during our walk. The blood test results that we've waited for two weeks have come back. Devastating news. The test showed that he has various tumour DNA mutations (KRAS and MRAS) which have developed in the past two years. (The cancer cells with these mutations are resistant to chemo treatments).

This means that Dave can't start using the planned targeted therapy Panitumumab, but has to resort to using a less good option which will give him various strong side effects such as neuropathy...

It feels like fate is just going to swallow us up...regardless how hard we fight... We came home and talked some more. Then I cooked wholegrain pasta with aubergine and onions in tomato sauce. We carry on doing the normal things, eating, doing the dishes and sorting things out... We have no intention of giving up.  

 

14 November


We went to consultation with Prof Gerlinger this afternoon, to discuss Dave's treatment options. The forthcoming treatment will be a 21-cycle chemo of both Capox and Avastin. The infusion of Capox and Avastin will be followed by Oxaliplatin tablets for two weeks and then a week's break. How do we handle the side effects? The doctor had little clue but said cold gloves might work when we mentioned the idea to him...

In the next two weeks we'll be doing research to find out what more we can do apart from ice gloves and socks that may help reduce neuropathy symptoms in the hands and feet...

The doctor decided to start with 20% less dose of Oxiliplatin to reduce Dave's side effects. If Dave responds well, then he'll increase the dose.

This new round of drugs may last around five months. A frightening thought... What comes after that?



16 November


We walked over to the Museum of London today - It's going to relocate in two weeks' time. It will be moved to the site of Smithfield Market and re-open in 2026. Dave said that it could be his last time to see the museum. We spent a couple of hours in there. Dave got a painting of city of London as a souvenir.

Sadness fills my day everyday. These visits to places don't make it less sad but more real that Dave might not be with me for a very long time...

This afternoon, Dave insisted on getting a winter coat and a pair of shoes for me. We went into M&S for the shopping.


22 November


Walked over to Fleet Street on our daily stroll. Stumbled across an area where all the barristers and lawyers are located. From there, it was five minutes' walk to the river. The sun was out and it was beautiful and soothing... I tried to get my daily vitamin D from the late autumn sunshine! The song Waterloo Sunset came to mind as we watched the boats... Nice little gulls came by, making lots of noises...It was funny to be able to focus my camera on two of them for more than a couple of minutes before they flew away... Dave enjoyed this walk a great deal.  

Fleet Street
Fleet Street
building up strength
building up strength
me, by Dave
me, by Dave
Les visiting us
Les visiting us
A gaslight outside Charterhouse
A gaslight outside Charterhouse
St Barts the Great church
St Barts the Great church

25 November


We've been doing "morning sessions" every day - we have our coffee and talk about how Dave feels (and how we both feel)... It's been useful for him to discuss his emotions and also good for me to think about how to cope better... Some of Dave's friends wondered about his optimism and his downplaying of his realistic situation... Through these conversations, I knew that Dave wasn't in denial about the prospects of his illness, but was simply dealing with it in his own way... He calls it "shock and freeze" where he becomes numb to what's happening...because he feels he has had little control over the illness. This is why he doesn't appear terribly upset to the outside world and doesn't seem to be in a panic state... It might puzzle his friends and family sometimes, but it is his own way of coping. The important thing is that he is fighting on, and not giving up. He lives with the hope that things could still improve...

We went for a long walk in the afternoon, all the way to Russell Square. Visited London Review Bookshop.



Walked past a Christmas fair at Charterhouse near the Barbican and Barts hospital (See below). Strange to be amongst all this upper-middle-class comfort and festivity that is a world away from our thoughts and fears right now...

St Barts the Great church
St Barts the Great church
Always trying to stay hopeful...
Always trying to stay hopeful...
despite the pain
despite the pain

1 December 


Went to Barts with Dave in the morning for his whole day of chemo. Oxaliplatin/Capeox with Avastin. This is the first time in more than a month, and each fusion took about two hours, plus time to flush it.. By 3pm he just started Avastin.

The cold gloves and socks were painful to wear. So bad that Dave had to take off the gloves for a while... Never saw him suffer so much from the chemo. The gloves gradually warmed up over two hours. Dave said he will get used to them in the end...

The CEA isn't good - 107 this time, double of the last CEA. Very worrying, but in front of him I didn't show my panic...

We were sitting by the window all day. Looked dry out there. Some blueness in the sky...but I feel so depressed.



late December

After Dave's first three-week cycle of his new chemo drugs, we're hoping that the ice gloves and socks worn during treatment have been working. So far, there have been no side effects of him losing sensation in his hands and feet. The ice gloves and socks are not NHS-tested and so oncologists aren't always pro-active in recommending them to patients. Dave's oncologist is keen to find out how these would work on Dave and whether they could potentially help prevent neuropathy... It made us feel hopeful when the oncologist sounded hopeful, saying Dave seems to be responding well to treatment. With this hope, he will keep using the gloves and socks in the next chemo session despite the pain they cause...

A sunny day, photo by Dave
A sunny day, photo by Dave
Kevin's pre-Christmas visit
Kevin's pre-Christmas visit
Roman wall in the city
Roman wall in the city
Hsiaowen & Mark visited and brought Mark's home baked ginger cake!
Hsiaowen & Mark visited and brought Mark's home baked ginger cake!
My birthday cake (vegan) from Dave
My birthday cake (vegan) from Dave
Cake enjoyment's nearly over...
Cake enjoyment's nearly over...
Michael's pre-Christmas visit - and he brought his own porridge!
Michael's pre-Christmas visit - and he brought his own porridge!
Dave always enjoys a mince pie
Dave always enjoys a mince pie
Opening present from Michael
Opening present from Michael
Our first Christmas tree
Our first Christmas tree
And another mince pie...
And another mince pie...
...and Christmas pudding with mince pie!
...and Christmas pudding with mince pie!
by Dave
by Dave

As you can imagine, there have been huge ups and downs in the past two and a half years, ever since our lives were changed by the illnesses.

To process each diagnosis properly and to be able to plan and rebuild our lives, I believe we need to talk about the illness and its impact on us openly. Dave and I have a "morning session" each day when we go through the medical (measuring Dave's body temperature, blood pressure and weight, and discussing any symptoms)... I have included the emotional side of things in our session and encouraged Dave to talk about how he feels...

We've certainly tried to seek help from various professionals. Dave had phone counselling for six weeks during the pandemic. We have got in touch with various charities, such as Maggie's, for support...

We understood from the start that in our situation, building support networks is important. Dave set up several WhatsApp chat groups with his family and friends and produces a newsletter for each of his chemo cycles to inform people of progress (or otherwise) of his treatment and how he is doing generally. Dave also has a very supportive old friend, Kevin - and purely by accident they started to write to each other every single day, as if building a joint diary/blog together... They also talk to each other every week on a one-hour video call, often talking as if they were ten again...Dave also enjoyed frequent chats with old school friends Andy and David. Dave's brother, Michael, and his cousins Sarah and Rachel are in constant contact...So are my parents and family. Michael comes to visit us whenever he can and he often brings the bulk dry goods we need - and in the height of the pandemic, he was our "bog roll man"!

Over the past few years, my friend Les has always been there for us, a much-needed source of support and encouragement. Although we didn't see him for two years during the pandemic until spring 2022, I enjoyed our phone chats... And our infrequent get-togethers always remind us of normality and the things we can still enjoy in our daily lives... His friendship is greatly appreciated.

I've had surprises from different corners of the world. I've had old friends suddenly getting back in touch with me, like Catherine who I knew thirty years ago. Thirty years, that's like a lifetime...This gap did make us strangers, and it felt strange (and lovely at the same time) to know her again - as if from scratch. She wrote long letters to me, sharing details about her life and the political situation in France...Once, she sent me a recipe. Reading her emails always lifted me.

In the past two years, there are friends and colleagues who regularly send kind messages, many of which simply said, "would you like to meet up for a coffee?" Those coffee chats (and sometimes lunches, too!) were so lovely. I enjoyed those meet-ups with Catherine and Alexandra. It was kind of them to travel to see us in the East End. It was also lovely to see Catherine and Steve from Unite - and so nice to read Catherine's kind messages. And I very much appreciate Jeremy Riggall's emails and calls in these difficult times. I'm very fortunate to have known them.   

I've also received beautiful greetings from people who I've never met but got in touch because they found out about our illnesses. Richard Aston's letter was really moving.... Thank you, Richard.

Sadly, there are also a few people who have vanished from my life soon after our illnesses were revealed to them. But what saddens and angers me the most is seeing Dave being isolated in the neighbourhood of Coopers Close in which he has lived for thirty years, ever since he became ill. There are a small number of very kind neighbours who always offer help. But the majority have been silent. I understood that talking about cancer made people uncomfortable... But their lack of capacity to show minimum care to their neighbour in times of trouble is inexcusable. Then I discovered from the wider world of cancer patients that "cancer ghosting" is actually a thing! 


by Dave
by Dave

Christmas 2022 update from Dave:

"Many apologies for our delayed chemo update 49 that should have arrived on Thursday, but I fell asleep when we got back from Barts, and since then HH and I have been getting ready for Christmas, so I'm sending it on Christmas Day so you have something to read between mince pies.

The Thursday chemo session went well this time, although the day still lasted from 10:00 to 16:00. I used the frozen gel mittens and socks which HH got for me to wear throughout the 2 hour infusion of Oxiliplatin (the drug that fights cancer but gives you neuropathy). I also paced myself by removing my hands from the mittens when things got too painful, to give them a rest, before chilling them again. The mittens and socks are not provided by the NHS, but my oncologist is interested in whether they help me. We'll see over the coming months, as having permanent nerve damage is definitely not what I want.

Following the chemo, I have 2 weeks of tablets to take, followed by a rest week. The last course of tablets were OK with no unexpected side effects (although the expected side effects were a pain). I'm not anticipating problems this time round, although I appreciate the week's rest from chemo. My expected side effects include the skin on my hands getting very dry and cracked, blisters on my feet and mouth ulcers. As well as attacking the cancer cells the chemo tablets hinder the body repairing itself. These are relatively minor things and could be a lot worse, so I can put up with them.

My sensitivity to cold immediately after treatment is not too bad this time around, although I have noticed that I am hyper sensitive to chilli, and, ironically, toothpaste! In both cases the effect is a bit like what I imagine being teargassed is like.... Which can be a surprise, if you forget and eat a tortilla chip.

HH and I have explored other treatment opportunities with both my oncologist at Barts and my Taiwanese medical team by video conference. Both sides largely agree on the current course of action…

Merry Christmas one and all. Even the Department of Work and Pensions is feeling Christmassy, since they sent me a Christmas Bonus of..... £10. I immediately went out and spent my windfall on some wrapping paper to celebrate.


Have a good one!"

January 2023


Dave was delighted to be able to take a little break and go to Lisbon with me (my surprise Christmas present to him). We enjoyed exploring the city a great deal, until the third day there. Since then, Dave started to develop various serious side effects, much worse than ever expected. One of them was Palmar-Plantar Erythrodysesthesia, a syndrome which causes blistering, peeling and terrible pain in the hands and feet. When we came back to London, doctors confirmed that these are accumulated side effects caused by two of his new chemo drugs. They decided that Dave should take a week's break from his chemo treatment. We're waiting to see if he will be well enough to restart next week.


13 January


It's our wedding anniversary today - Dave reminded me by giving me a card! I'm embarrassed to say that I totally forgot about it...amidst all the things we had to do. We had a proper chat in the morning during our coffee "session". And a couple of mince pies in the afternoon to cheer ourselves up!

There have been a lot more things to do since Dave became ill with the severe side effects. It's been so worrying... The next few months won't be easy...but will do our best. 


13 January

Dave's update to family and friends:


Yet another apology from me for a delayed update on what should have been my 50th chemo. Unfortunately, that didn't happen, for reasons that I will go into in a bit.

HH and I are back from her surprise Christmas present to me, where we spent 10 days in Lisbon over the New Year. We did a lot of exploring and had a lovely time, but unfortunately, as the trip went on I started to develop various serious side effects to my new chemo treatment, completely unexpectedly. Amongst the "usual suspects" of loss of appetite, mouth ulcers and diarrhea, I developed my first syndrome.... Palmar-Plantar Erythrodysesthesia, which causes terrible pain in the hands and feet (which is a bummer, if you are exploring a new city.)

Upon our return to London, I already had a week's treatment break booked, ready for my next chemo session on Thursday 12th, but before then it was obvious that I wasn't getting any better. After a home visit from the Barts team and consultation with a specialist, my treatment has been postponed until I'm better recovered. As I write this, I am confined to barracks and shuffling around in my dressing gown. At least this reduces my risk of contracting Covid or flu outside.

We know of many people who caught Covid recently, including Hsiao-Hung's mum and dad in Taiwan, which was worrying because of their age. They are recovered now, thank goodness.

We hope you had a good New Year. All the best for 2023!

I will send you a proper "chemo 50" update, with better news, after actually having done the treatment, very soon.

God bless!
D&HH xx




26 January


Went to Barts with Dave at 12 noon for his 50th chemo session. We were kept waiting for two hours before Dave was called in. They said it was because the pharmacy delayed it...

As often happened, the staff greeted Dave without acknowledging that I was there. It depressed me to be treated as if I were transparent, not human. An invisible carer... But there was enough stress without having to worry about this. I had to ignore it.

Dave was given a flush, and then two hours of Oxaliplatin and calcium formulae which was meant to help reduce neuropathy. Then he was given Avastin. In the end, a pump of 5FU (to take home for two days).

During the last part of the treatment, I popped out and did food shopping for us. By the time I went back to Barts for Dave, it was 6pm. We left together around 6:30pm. Tonight, Dave wanted to prepare food with me - we had vegan burgers with lots of veg.

February 


In the past two weeks, Dave's oncologist has changed the chemo regime and stopped using the tablets that caused Palmar-Plantar syndrome. The results have been encouraging and he has had no side effects so far. We have resumed taking long walks - twelve miles on Sunday... 

9 February, Dave's update to family and friends:

"Chemo 51 has just been completed after 2 weeks on my new chemo regime with no bad side effects! My feet and hands are recovering well, but one rather sad side effect remains, my feet smell terrible! Checking with my oncologist, it's all because of the skin falling off in the past month and new flesh growing. Well, that's my excuse and I'm sticking to it!

My tumour marker score is still high, but is gradually creeping down after a small jump during my two week enforced 'treatment free' rest, which is a good sign.

As part of my recovery, HH and I had a rather interesting day last Sunday, when we accidentally walked 12 miles. We were going to travel to Lancaster Gate (from where we live in the East) to visit a friend. Since it is only 15 minutes on the Elizabeth Line, we were going to use the train, but the line was not working, so we planned to walk some of the way (2 miles or so), and take the tube for a few stops, for the rest of the journey.

We set out and were ahead of schedule when we got to the station we planned to use to join the underground, so decided to carry on walking and join at the next station.... This continued until we got to Marble Arch and realised we were practically there! HH bought us a lovely Persian lunch, and we strolled around and still felt fit enough to walk home, too…"

23 February

What happened to Mohamed, a Deliveroo driver, made my blood boil...



3 March


Dave and I walked up to Altab Ali Park, where trade unionists and activists gathered for the rally in support of Mohamad, the delivery rider who fell ill during work and was mistreated. He's still in critical care in hospital. Jeremy Corbyn made a speech.

  


March


Dave's chemo takes place every two weeks. In between his chemo sessions and other hospital appointments, we try to live life as normally as we possibly can. We spend time taking many long walks, visiting old and new places, enjoying exhibitions and special tours, rediscovering London... On top of this, we're planning travels in the summer. Living every day as an important day!

We went with our friend Les for a day out to Margate. This is Dave's review of the gallery there: "The Turner Contemporary Gallery was interesting (and built on the site of the boarding house at which turner stayed when he was gallivanting between London and Margate). However, it does not contain a single piece of Turner artwork... Maybe they sold any Turner pictures they had to afford building the gallery in the first place.... They did have an Antony Gormley man standing in the sea outside, though.... A twin one standing in the Thames in Wapping, near where we, and Turner live/lived." 

view outside chemo ward, by Dave
view outside chemo ward, by Dave
We Are All One, or We Are Alone?
We Are All One, or We Are Alone?
Cezanne exhibition, Tate Modern
Cezanne exhibition, Tate Modern
wholegrain bagel time
wholegrain bagel time
at the Curve, Barbican
at the Curve, Barbican
Yayoi Kusama’s Infinity Mirror Rooms
Yayoi Kusama’s Infinity Mirror Rooms
ice gloves and socks throughout the chemo session
ice gloves and socks throughout the chemo session
on the way to Tate
on the way to Tate
taking Dave to Gordon Ramsey's
taking Dave to Gordon Ramsey's
Petticoat Lane
Petticoat Lane
going to Margate!
going to Margate!
'Another Time,' by Antony Gormley, Margate
'Another Time,' by Antony Gormley, Margate
inside Turner Contemporary, Margate
inside Turner Contemporary, Margate
Even Marx stayed here at one point!
Even Marx stayed here at one point!
City of London
City of London
Barts hospital
Barts hospital
back to chemo
back to chemo

19 March

Dave shared this article with me: Chew slowly, keep moving, eat 30 plants a week

'We are not doing too bad," he said to me. 




April


Last week, just as we thought things were becoming more stable and we had started looking forward to some time away, Dave began to experience more chemo side effects, leading to colitis. As the the effects of the inflammation became uncontrollable, doctors decided that Dave should stay in Barts for a while, until they found the root cause of the problem. His chemo scheduled for this week was postponed. For the whole week, Dave has been prescribed a stream of meds and electrolyte infusions, and has been looked after so well by the nursing team...



4 April

A different doctor visited. She said all blood tests results are OK and negative. CT shows "no big issue." The colon inflammation isn't severe. So they are puzzled what the real cause is. It doesn't have to be chemo. To find out, they'll give him colonoscopy and other tests.

Dave was his usual humorous self and asked the nursing staff about the different colours of their uniform. What does the dark green uniform tell you about their role here? One of the nurses replied, "Slave." He went on to say how terrible he has been treated in his job. He said the doctors "lack interpersonal skills despite their career achievements"...

I brought two croissants to cheer Dave up. He also has his standard NHS lunch with dessert. Today's dessert was raspberry which he liked.

In the afternoon, we took a stroll in the hospital garden again. The sunshine was beautiful and we stood there letting it touch our faces...

Although I don't say it to Dave, I feel so sad, so depressed, every day. How I wish the situation were different and Dave were well and enjoying the day somewhere else... But Dave is so optimistic and rarely says a word about the misery he's in. He is still hoping and looking forward to getting better. However, I fear that things won't get much better from here... I fear deeply. I'm keeping that fear to myself.

 


5 April

Better news when I arrived at Barts this morning: Dave had no diarrhea overnight and slept well. His temperature was back to normal, 36.8. This is the result of yesterday's Occrotide, anti-diarrhea injection. He had Occrotide non-stop, on a drip. He will continue with it today.

We had lunch together by his bed. Dave didn't eat much of the hospital food, but enjoyed the croissant I got him...He was feeling better and talking much more today. In the afternoon we had our routine coffee - flat white with almond milk was Dave's favourite right now...

My depression always sets in when I am about to leave the hospital at night... Dave was enjoying watching the Sicilian series Mafia only Kills in Summer on his tablet and he laughed a lot with it today... We had to stop half way because visiting hours have ended. I kissed him goodnight.

The walk home from the hospital after visiting hours was the start of my feelings of depression and hopelessness every night...Watching Dave in such a shape, so frail and thin, day in, day out, is the saddest thing for me...It is killing me inside. Couldn't help crying every evening when I walked home. I'm feeling so angry. I'm fearing so much for him. There's no one around. I know I am alone. 

And for Dave, alone in his side room, the indignities of Colitis felt like "yet another kick in the teeth" as he put it...



6 April

Got up early again and went to Barts to be with Dave. He got himself ready for the colonoscopy. It was supposed to be around midday. But we were kept waiting till after 1pm. Finally the patient transport staff and a nurse turned up, and took Dave to RLH.

Over there, Dave was given enema, a very unpleasant procedure before the colonoscopy. Then he was put to sleep for two hours. By the time he came back to Barts, he was still sleepy. Dinner was brought to him but he didn't have much appetite and just had a few spoonful of the sweet and sour chicken with rice. He finished dessert in no time though...

Nurses have been so nice and working hard with Dave. They are brilliant. 

taking sunset pictures from the ward
taking sunset pictures from the ward
chatting and being with each other all day...
chatting and being with each other all day...
looking at names on benches...
looking at names on benches...
sharing fruit together every day
sharing fruit together every day
taking a stroll around the hospital during the stay...
taking a stroll around the hospital during the stay...

7 April

Brought Easter choc bunnies for the nurses. Distributed bunnies to everyone, nurses and a cleaner. It cheered everyone up... They're lovely people and have looked after Dave so well here. 

The first thing Dave told me was that he has just one tiny poo overnight and peeing more often. (We joked about this: poo becomes the centre of our conversation since he was admitted to hospital. We do "poo reports" every day.) He slept OK.

Then a doctor came and explained things: magnesium level normal, according to blood test results. Potassium a bit low, and she asked Dave to eat more bananas (although the other doctor said not to the other day!). Colonoscopy results still pending. She said Dave might be able to go home tomorrow, if another blood test shows all OK.

Dave seems stable and fine today. No longer on a drip, just meds. Good appetite - although hospital food aren't always appetising. Like the promise of fish and chips turned out to be a third of a plate of soggy chips and a few mouthfuls of fish pie. The tomato and lentil soup was in fact a small bowl of mushy stuff, and Dave wouldn't touch it.

Every evening, after I came home from the hospital, Dave would call me after I've eaten something, and we chatted and said good night.



9 April

Dave was finally able to go home. We thanked the nurses for their care, and walked home at 2pm.

13 April


Dave continued to feel tired and had no appetite today. Barely had anything to eat at lunch - had a few small vegan sausages with spaghetti. Then he called the Barts hotline and reported his symptoms: fatigue, no energy, etc. They probably didn't think it was very serious and hadn't got back to him all day.

I walked to Stepney Green to collect meds for Dave from the pharmacy this afternoon. Then food shopping. Feeling very low... Worried about Dave, and the future weeks we have ahead of us. 

 

17 April


Some positive news at last. Went to Barts with Dave for the consultation with Dr Pihlat, an oncologist in the team. She reported that the scan results show that liver is stable at the moment (no tumour growth). 

Dave's colonoscopy results show that there's mild Colitis. Doctors don't fully know what has caused the problem in the past few weeks. But they think it might be bacterial imbalance/overgrowth. Needing to introduce good bacteria to fight off the bad. She suggested intake of pro-bio drinks (good bacteria). And she prescribed antibiotics. She also said steroids should be taken for a longer time after chemo. 

Chemo is OK to go ahead. She also said it is fine to take trips like Valencia. She said that doctors encourage people to have holidays because these improve quality of life. Glad to be on the right track! 

We're very pleased with the meeting. On the way back from our walk, Dave had a chocolate milkshake, first one since the Taiwan trip last year. He really enjoyed it...



Late April


Dave's been feeling better this week, with the help of ample steroids. And spring is arriving, at long last...

Tower Hamlets' new town hall
Tower Hamlets' new town hall
Parasite, Hallyu (Korean wave), V&A
Parasite, Hallyu (Korean wave), V&A
Hallyu (Korean wave), V&A
Hallyu (Korean wave), V&A
meeting up with David and Andy
meeting up with David and Andy
(my pizza is vegan)
(my pizza is vegan)
lunch at Captain Kidd after the walk
lunch at Captain Kidd after the walk

20 April

Dave's update to family and friends...


I'm back in the saddle and just completing Chemo #55 after an extremely annoying two-week delay due to colitis, which I now believe is the polite term for "bad tummy trouble."

The doctors still haven't isolated what caused all this, and I eventually escaped from hospital on Easter Sunday. I am on a new 2-week course of antibiotics which should help my intestines encourage the growth of lots of good bacteria and fight off bad bacteria, which may have caused the problems. 

The drug documentation also says it may turn my wee red, which should be fun for the coronation. 

I'm also on extra steroids to help calm any potential reactions to my treatment and I know what to look out for if something bad starts to happen. It's also very useful being just round the corner from Barts to pop in, if it does.

My recent scans have shown that my liver tumour has been stable over the past 2-week "chemo holiday" which is a bonus. My tumour marker score has gone up, which is to be expected, and we hope it will fall after the latest treatment.

Lastly, because of my rather rapid weight loss, my consultant has suggested increasing my calorie intake to help me put on weight..... This has included the suggestion to start eating cheese cake.... I'm not arguing... 

Oddly, over the past 10 days after my stay in hospital, my body has decided I should be operating nocturnally. I seem to need to sleep in the afternoon and then wake up every two hours at night. Once I'm back on steroids I should be able to establish a more normal daytime routine, which doesn't include me being asleep on the sofa for three hours at a time, like a large mangy cat.

In some other good news, our planned trip to Valencia in May has been given the green light. The consultant positively recommends short trips like this to add to our quality of life. Having this OK-ed has been a big relief after a difficult few weeks, when, at points, neither of us thought I was going to get any better...

We hope you are doing well and had a good Easter break. Here in London, the weather still hasn't decided whether it wants to be Spring yet! Walking to and from Barts is still decidedly chilly.

All the best!
D&HH xx

Dave practicing Gangnam style
Dave practicing Gangnam style
group walk along the Thames
group walk along the Thames


May


We had such a great time in Valencia, enjoying long walks and exploring the city's contrasts of old and new...Sadly and shockingly, on our fourth day there, Les suddenly had a sore throat and then tested positive for Covid, which meant we had to part company. Due to Dave being clinically vulnerable, there was no way we could continue to safely stay in the same apartment with Les. We spent the last two days of the holiday on our own while Les was recovering...

Despite the panic, we were fortunate enough not to have caught the virus. We have tested negative for four days so far. This felt lucky because we had spent four full days in close contact with Les in Valencia. "Lucky" may be the wrong word here, because there are good reasons why we remain Covid-free: we have had seven Covid jabs so far and have been so strict with Covid prevention in the past three years... As Dave's oncologist said, he thought we're among the few who haven't caught it in the country.

Despite the Covid incident, we want to remember the sunshine and good times in Valencia... 

15 May


We met with Dave's oncologist Dr Gerlinger to discuss progress. He told us that Dave's tumour marker score indicates that the current treatment isn't effective anymore. Dave will have his last round of the current chemo this Thursday. He will then begin a new regime in mid-June. We fear that his drug options could be running out...


18 May

Went with Dave to Barts for his final round of the current chemo. 57th session. No more infusion after this. It was delayed for two hours because of the pharmacy. We didn't leave hospital till early evening.

The shortage of staff was severe. A nurse told me that four nurses are doing the jobs of nine. It clearly affected their morale. We're watching the NHS collapsing around us...

Dave's tumour marker score went up again, from 125 to 193 this time. Clearly the drugs have ceased to work. 



19 May


We know that Dave is gradually running out of drug options. We have asked his oncologist Dr Gerlinger again and again to put him on any possible clinical trials. So far, he said there isn't any suitable ones available. 

We went to an International Clinical Trials Day event this morning. It's organised by Barts Cancer Institute. We were the only patients. Everyone else was a doctor/healthcare professional. The talks were interesting. One of the speakers was an oncologist we know in the team. Dr Pihlat. We were looking for any information on clinical trials... But so far, more theory than practice.

We are still hoping to see suitable trial for Dave in the near future... Hopefully Dr Gerlinger will look out for us. We're not giving up.

This afternoon we received a box of face masks sent by my sister Hsiaolan.  

June


Before Dave had to start the new chemo treatment in mid-June, I organised a trip to Norway. I wanted us to have a good holiday together, and also to meet with a few people for my book research. 

We had a beautiful time in Oslo. Enjoyed the long walks and long hours of daylight. There were new discoveries every day. The most impressive on our first day, on the 2nd of June, was the Munch Museum, a fantastic structure and beautiful interior. Enjoyed Edvard Munch's works. Then we went up to the sky bar and enjoyed the view of the harbour from above, with cold ginger beers in our hands... Then I insisted on taking Dave to a delicious lunch downstairs in the same building. Dave enjoyed his mussels very much, and then dessert. We chatted about our travel plans this week, and for a short while, completely put aside our reality back in England. So glad that we were able to have these happy moments together...

We took a long walk along the harbour area, in the warm sun. Felt so good. There were so many saunas along the way. Norwegians know how to enjoy themselves... 

Woke up to another beautiful morning in Oslo the next day. We got ourselves delicious cinnamon buns and coffee as we walked down to the harbour again. Ran into a charity-run festival and stayed listening to the music whilst enjoying our cinnamon buns... What a nice start of the day.

We walked to the Museum of Cultural History several miles away. It took us more than an hour to get there. It was a huge space containing medieval and 19th-century farming villages of wooden houses, waiting rooms for stations, shops, and a stunning Stave church which took us some time to find... It was a truly amazing wooden Christian church built in the 16th century. Beautiful carvings on pillars. We were just stunned by it...

Then we walked to the Fram museum, which Dave happily found out that it was the Norwegian ship that reached the South Pole in 1912, same time as Titanic (beating their British counterparts).

Over twelve miles in all on this day. Dave preferred some comforting Italian food for dinner. So we went to a nearby Vino al vino which had delicious seafood risotto. Over dinner, Dave said to me, "I think I could live here." It was the first time he said so about any place we visited. "Me too," I said. We were both surprised how much we like it here and find it so truly relaxing and lovely.

Then we had another beautiful day, strolling around Vigeland's Park, a sculpture park filled with one man's works - Gustavo Vigeland, sculptor and creator of the Nobel prize medal. We spent the rest of the day strolling in the sun, with coffee in our hands, like we were young and carefree... Then we walked down to the harbour and watched the boats. The sun at 8pm was as strong as it was at 3pm.

I wish time could freeze and we won't ever have to return to darkness...

On the 6th of June, we boarded the Bergensbanen railway, to head to Bergen, the second largest city in Norway. The line is the highest railway line in Northern Europe. It was a 6.5-hour journey, crossing the Hardangervidda National Park and running over numerous highlands, then onto Hardangervidda, Europe's largest high mountain plateau. The peak was 1,222 meters above sea level, at Finse train station. 

Bergen is surrounded by beautiful fjords. As time was limited, we went on just one boat trip, to Mostraumen fjord, the longest one of all. We also loved the woods, the mountain views, and the tranquil public spaces in the neighbourhoods where people gathered and picnicked at weekends... We really enjoyed the laid-back vibe of the place and felt at home there.

sunbathing, Opera House
sunbathing, Opera House
"The Scream", by Edvard Munch
"The Scream", by Edvard Munch
Dave at the sky bar, Munch Museum
Dave at the sky bar, Munch Museum
view from the sky bar
view from the sky bar
seafront saunas
seafront saunas
on the walk to the Museum of Cultural History
on the walk to the Museum of Cultural History
open-air Museum of Cultural History
open-air Museum of Cultural History
Vigeland's Park
Vigeland's Park
Fram Museum
Fram Museum
watching boats at harbour
watching boats at harbour
Deichman Bjørvika library, photo by Dave
Deichman Bjørvika library, photo by Dave
Deichman Bjørvika library, photo by Dave
Deichman Bjørvika library, photo by Dave
Getting on the Bergensbanen railway
Getting on the Bergensbanen railway
standing at platform waiting for a train to central Oslo
standing at platform waiting for a train to central Oslo
"She Lies," by Monica Bonvicini
"She Lies," by Monica Bonvicini
Munch Museum
Munch Museum
Edvard Munch's self portrait
Edvard Munch's self portrait
lunch at Munch Museum
lunch at Munch Museum
Me photographing saunas, by Dave
Me photographing saunas, by Dave
seafront saunas
seafront saunas
Stave church
Stave church
Deichman Bjørvika library
Deichman Bjørvika library
during the first hour of the train journey to Bergen
during the first hour of the train journey to Bergen
during second half of the train trip
during second half of the train trip
On the way to Bergen
On the way to Bergen
Arriving in Bergen
Arriving in Bergen
in our flat in Bergen
in our flat in Bergen
Public library
Public library
by Dave
by Dave
by Dave
by Dave
Mostraumen fjord
Mostraumen fjord
by Dave
by Dave
Our neighbourhood, Bergen
Our neighbourhood, Bergen
Rose & Amelie, 1893, by Edvard Munch
Rose & Amelie, 1893, by Edvard Munch

On the 12th of June, after arriving back from our trip to Norway the previous evening, Dave and I went to Barts for him to start his new treatment. Dave is now on a three-week cycle of a targeted chemo tablets with a week's rest after three weeks. All the other liquid treatments and infusions have been dropped.

Dave's CT scan from the end of May was reviewed and that confirmed what we already knew, that Dave definitely needed to start a new treatment since his liver tumours were growing. The largest had grown to 9cm. Sadly, the scan showed Dave also had a metastasis in his lungs, and the largest tumour was 5mm that had spread from his liver. Dave's professor oncologist said that this was common and they'll keep an eye on it.

Adding to the impact of the bad news, we had to endure a three-hour wait at the hospital pharmacy, to pick up the chemo prescription. The staff simply said (and repeated) that "all the computers had stopped working." Computer says no, as the British joke goes. But this was not funny for the cancer patients waiting for hours. 

Over the coming months, Dave will eventually run out of the normal NHS treatments for his cancer, when they cease to be effective against his mutating cancer, so we need to find clinical trials onto which he needs to be assigned. We can also try repeating combinations of failed therapies in the hope that they may trigger a response again, or find alternative treatments, for example with Dave's Oncology Team in Taiwan.  


Late June


Dave shared an article on walking and yoga with me, to reaffirm that our habit of taking long walks is definitely a good thing. We carry on with this every day.


Jabed came to see us in London in late June. He was a 17-year-old kid when we first met him in Lampedusa in summer 2016. My first memory of Jabed was him walking around in bare feet. "They haven't given us shoes," he said to me. He came from a village in Bangladesh and vowed to change life for his family when he left home with two close friends in 2015. They survived the horrendous forced labour in Libya and then the treacherous sea journey on a small boat where they ran out of fresh water on second day and were rescued two days later... Eventually, they were sent to Lampedusa, an island of which name they'd never heard. Since then, they survived the appalling conditions inside the camp in Lampedusa and then the prison-like existence in another camp in southern Sicily. Jabed and his friends decided to do what many others did and ran away from the camp. They arranged to be smuggled out of Italy and into France, where they claimed protection as minors... 

Jabed ended up in a children's centre in Metz in western France. It was a long, difficult process, where he was interviewed ("interrogated" would be a better word) over and over again... They intimidated him. They asked him to tell them "what he'd been involved in"... Fortunately, in the end Jabed won a place in the children's centre. He worked hard at jobs that paid him less than half of the local wage, for years. He was finally granted permanent residency five years later and now able to travel. I'm amazed to see how well he's doing now, working as a sushi chef in Paris... 

Jabed was heartbroken to hear about Dave's illness. He said he will be praying for Dave and come to see us often. During his visit, we showed him around and took long walks with him. He also enjoyed playing cricket with his cousin's team. He got used to taking the underground every day, like a Londoner... We chatted a lot about the times in Lampedusa. He is now able to laugh about it all.



Dave's artwork, made from the paper cups used for delivering drugs during a hospital stay

Dave has had some side effects from the new chemo drug: night sweats, sore hand and feet with blisters, sore mouth, and increased fatigue (needing to take naps in the daytime sometimes). We are not able to travel far at the moment because of Dave's conditions. But we are keeping our diary busy as always, not letting the illness defeat us... We meet with friends and family, take part in events (as long as it's Covid-safe) and carry on doing what we love doing. In early July, we went to see the newly-opened Young V&A which used to be the Bethnal Green Museum of Childhood... Dave enjoyed looking at the old toys there... And many more exhibitions and festivals coming up soon!

We realised that we're in need of more support as Dave reaches a much more difficult stage of the illness. We need all the help we can get. So we went back to Maggie's at Barts and gave it a second try - this time, Dave joined the Living with Cancer support group and met with a small group of people in similar situations, along with a therapist who guided the sessions... They talked and shared thoughts and experiences, and Dave has found it useful. 


5 July 2023 marks 75 years of the NHS. This is while nurses aren't getting fair pay and doctors believe that ministers want to destroy the national health service. At Barts, many nurses told me how over-worked they are, due to many of their colleagues leaving the job, because of low pay and over-working. 

11 July, Dave's 59th chemo:

"You currently find me sitting at home with 3 small bottles of 84 pink pills which were collected from Barts Pharmacy yesterday afternoon and I started taking last night, up to 4 a day, for 3 weeks. This time [as the oncologist advised] we'll be having pills in batches of 3 or 4 to minimise the risk of unpleasant or unexpected side effects.

Yesterday's review session with the Barts Oncology team was interesting [difficult, in fact], as various treatments which were discussed all depended on the "KRAS mutations" in my tumours (and the various treatments only work on certain mutations, killing particular cancer cells with particular mutations and others without those mutations escaping.) My various mutations have been described as "a zoo", as there are several of them and to move forward, when my current treatment ceases to be effective, we need to be able to pick out the most "populous" mutations and kill them first (using various chemo drugs, if they exist).

A few days ago, we had a video consultation with my oncology team in Taiwan to run over further options when options in Britain run out... It looks like the Barts and Taiwan oncology teams have different approaches and I'll need to have some private tests done to see what the state of play with my mutations.... [The UK oncologist disagreed with the drugs recommended by the Taiwanese oncologist.]

During the first chemo cycle last month, I had a few side effects, which have reduced in severity once I went on my rest period last week (not taking any pills). I still continue to have a few effects that are most tiresome. Apart from any physical side effects, the "most annoying" example is that of my memory/brain misfiring from time to time. This might be remembering things, dates, times or something else (which I can't remember.....)

Last month we visited the Ai Wei Wei exhibition in West London. We turned up early, so I asked the doorman if we could still go in. The doorman said that this was fine, although I wasn't just 1 hour early but 3 days.... Oops. Bloody brain. We did see the exhibition, though. It had lots of teapot spouts in it, as far as I remember.....

We'll be in touch soon about more meet-ups. Today HH, Michael and I are meeting cousin Sarah and husband Rodney. I sincerely hope it's today and it's Sarah and Rodney, or my brain has screwed things up again.... 

All the best to you and yours. It's now proper summer, so let's get out there!

More news about this, that, and the other, provided I can remember it, next month!"




My sad dream had a soundtrack...

Last night I had a very sad dream, so sad that it woke me up. But as I opened my eyes, I instantly forgot what the dream was about. The only thing that remained in my mind was the music in the background. God knows why, it was a song called I Started a Joke, by Bee Gees. 

"I started a joke, and it started the whole world crying... And I didn't see, that the joke was on me..."

The song was played a lot, in the background, in my childhood and adolescence, when there was an influx of North American (and other Western) pop/folk music... Before I went to university, I used to play "campus music" on my guitar.  "Campus music" was like an reinvention and imitation of some of the North American pop/folk music from the 1950s and 1960s... 

No idea how this Bee Gees song got selected from the memory bank to go into my dream... 

22 July


Dave's feeling tired on most days, needing a couple of hours' nap in the daytime. It's been depressing because there's little we can do to improve how he feels physically... In early August he will be given a genetic blood test to see the situation of his mutations, so to find out what medical options are next. 

Dave has joined two groups at Maggie's: one is a support group, the other a structured course on issues related to living with incurable cancer. In the meantime, we try to live as normally as we can. Last weekend we met with friends and enjoyed the Italian festival at Clerkenwell, just down the road from Barts hospital. 

It was only when we became familiar with the neighbourhoods around Barts that we realised this was where the earliest Italian immigrants came to live in the 19th century... St Peter's Italian Church (the church in the picture below) opened in 1863 and is the oldest Italian church in London. It is still the gathering venue of the Italian community in this area. Two doors down from the church is Terroni, the first Italian delicatessen in England. You can be sure to get a proper cup of coffee in there. Its atmosphere reminds me of some of the bars in Sicily where we lived a few years ago...

This weekend we went to Mic and Sharon's barbecue in Enfield. They kindly prepared lots of vegan food... It was great to see Dave catching up with some of his oldest friends. Unfortunately we had to leave early because Dave ran out of energy by 6pm. His fatigue is something that we are still trying to get used to...   




24 July


We were both saddened by George Alagiah's death. People died unnecessarily because the NHS was not providing bowel cancer screening for those aged between 50-59 until April 2021. Too late. Too bloody late! 

Dave sleeping on trolley, A&E, Royal London Hospital
Dave sleeping on trolley, A&E, Royal London Hospital

3 August


Things have gone from bad to worse in the past month. Dave has become so exhausted everyday that he can no longer take long walks. He has developed pain in the belly that doesn't go away, even with the painkiller Oramorph. So the medical team who visited him decided to send him to Royal London Hospital for a CT-scan.

The results have been upsetting: Not only the "slight" infection in his lungs two months ago – which the oncologist said to ignore – hadn't gone away. The worst news we were told today were that Dave's lung metastasis has grown and that there's cancer spreading to the lymph nodes in his abdomen. (At this point, nothing was said about the further growth of liver metastasis.)

We all know that the NHS is over-stretched and hospitals in Britain are always short of beds. There seemed little we could do when the A&E department left Dave sleeping on a trolley in a side room overnight, in pain. We've been fed the idea that somehow we must accept what we've got with the current healthcare system. "Mustn't grumble", the British way – Dave never chased up a response or put any pressure on any staff member about needing a bed to sleep on, or having morphine soon enough, so he didn't have to suffer the pain every minute.

"Mustn't grumble." So Dave kept quiet when the A&E department kept him waiting for a bed, for the entire evening on the 3rd and nearly the entire following day. He endured the pain all day, asking for morphine every few hours by pressing the alarm button next to his trolley. Each time he was ignored, up to an hour. Each time, I saw the staff members simply looking at their PC screens.

In their eyes, I saw heartlessness. The heartlessness that is so characteristic of the British society I've known for thirty years…

At 17:40, enough is enough, I thought. There came the time when I had to refuse to "take it." I went out to the staff area and asked them to listen to me. I pleaded. "Dave is in pain. He needs morphine." They carried on looking at their screens. One of them turned and said to me: "We are busy with other things."

"We waited for the whole day for a bed. And we waited for morphine each time. Is this how you treat patients?" I said, loudly, for the first time.

Perhaps they didn't ever expect someone with an East Asian face to speak up. My words angered one of them. She accused me of "screaming" at them. Clearly, this white English person has never been challenged by a foreign-sounding patient. She was so used to us just "taking it".

"If you carry on, I will ask security to send you out!" she said to me. I've never been spoken to like this by a healthcare "professional" before.

"Go ahead," I wasn't backing down. Of course, she was not going to "get the security." Dragging a patient's family out of the hospital because the hospital couldn't provide a bed for the patient and the staff couldn't even respond to patient's request for morphine?

Within two minutes, someone came with a wheelchair and asked Dave to sit in it. They were taking him to a ward on the 11th floor where he will be given a bed! God knows at what time this bed that was given to Dave was already available – but no one at the A&E department bothered to inform us and arranged for Dave to be taken there. The neglect and lack of care was disgusting.

I was glad to find that the nurses and staff members on our ward on the 11th floor were helpful and professional. They took care to make patients comfortable and welcome. One of them pulled a chair for me when I was talking to family on the phone in the hallway. At that moment, I wanted to hold onto this rare kindness… This is what this place, this city, this society really lacks.

After I left Dave for the night to return home, I burst into tears on the escalator going down to the underground… It was all too much that day. The stress and anguish didn't stop for Dave in the ward. He had a bed to sleep on from this evening, but was disturbed by the cries and noises in the ward through the night.

6 August

Two days later, today, Dave was still on the 11th floor of the Royal London Hospital. One of the doctors, Michael, who came to see Dave, said that the CT scan shows the liver tumours have grown, too, making liver swollen and bigger in size, therefore putting pressure on the lining around the liver (the capsule). This causes the pain in the abdomen. (This was the first time that the full progression of cancer in the liver was explained to us, several days after the CT scan.) This added to our understanding that the disease progression has caused the persistent pain. Now we could be certain that the pain isn't a side effect of the chemo treatment.

Dave will continue to be given morphine every hour and also steroids for the liver, to reduce swelling.

We had lunch and dinner together by Dave's bed, as we did every day in the hospital. At least his appetite improved slightly because the pain has reduced due to the hourly supply of morphine. But Dave hasn't got well enough to leave hospital, nor to have chemo drugs this coming week. We started to worry about the likelihood of this deteriorating situation delaying Dave's birthday party in September… We were aware that it could be his last birthday celebration with friends and family. The thought of it being postponed or cancelled made me want to scream. How bad could this get?

At one point, desperate patients' noises in the ward made Dave cry. It did the same for me yesterday. "Is it going to be like this from now?" Dave asked me.

7 August

We weren't expecting the very worst that happened next.

Dr Gerlinger called at 1pm today. He confirmed the CT scan results a few days ago: cancer is growing in the lungs and particularly in the liver. That explains the pain, as mentioned above by another doctor. Cancer is also found in some lymph nodes in the lower abdomen. This means that Dave's current chemo drug is no longer effective and will be stopped.

Very sadly, Dave's DNA testing results are not good, said Dr Gerlinger. It showed multiple KRAS and NRAS mutations. All of Dave's resistant mutations developed from two years ago have remained. As a result, Dr Gerlinger said that there is no available drugs inside or outside of the NHS that will work for Dave. He also said that the drugs recommended by the Taiwanese oncologist wouldn't work – Specifically, he explained that the Sotorasib + Cetuximab drug only works against tumours that have KRAS G12C mutations and it wouldn't be successful in this situation where multiple other KRAS/NRAS mutations are present.

As the terrible news of "no further treatment" was confirmed to us, Dave asked how long he had got to live. It was something that doctors don't usually want to discuss with patients if they're not asked to, and it was never raised with Dr Gerlinger before. He said that according to his experience, patients in this situation will live from four weeks to three or four months. These words were said loud and clear on the other end of the speaker phone... We were shocked dumb – for me, it felt like that day, also at this hospital, when Dave was given his diagnosis nearly three years ago. It was really difficult for me to process the information. The idea that Dave will not be here with me anymore was just too overwhelming to take in... I suddenly realised that we had held on to hope, so tightly, for a long time…

But everyone is different, I thought. I'd like to think that these figures from the oncologist are just stats... The shock was followed by a kind of denial… I felt I had no choice but to question this reality presented to us. How are we going to get through if we accepted this?

We had a cry and a cuddle. We reassured each other to be strong…We told each other that these figures from the doctor were just for reference… I tried to push Dave to eat some lunch so he can build up energy. He had a few spoonful, about half of the food on his plate. We talked some more. We remembered the past three years and how we coped... Painful memories of the first days of Dave's diagnosis. It broke our hearts to have these memories refreshed at this moment of the worst news... Dave talked about the death of both his parents. He shed more tears.

Later in the afternoon, Dave called his brother Michael to tell him the news. He was holding back tears on the phone. I walked over to the window as they spoke, and saw the blue sky out there, with an orange glow laid over the familiar streets of Whitechapel two hours before sunset. The sky still so blue, I thought, but the blue sky doesn't belong to us.




For the whole week, Dave and I spent every evening watching our favourite old films...It was as if we knew time was running out...

Dave now has to use a walking stick to be able to walk anywhere. He made it to Apulia restaurant where he had a three-hour lunch with his close friends, Mic & Sharon and Jim. They all enjoyed it tremendously.  

For the entire August, Dave was trying his hardest fighting against this evil cancer since all chemo drugs were stopped by his oncologist and he was discharged from Barts' oncology department. His conditions got worse by the day. The disease was causing him a lot of swelling and pain. His ascites caused a bacterial infection in his abdomen. He was back in hospital on the 28th of August. His conditions declined fast during the twelve days in hospital, when he became weaker and more and more confused. I began to feel that I was watching him dying…


30 August

Spending another day with Dave on the 13th floor of RLH. Following his Ultrasound, they started to drain water out of him. It lasted the whole afternoon and finished around 7pm.

All throughout the day, Dave was no longer talking like himself. He misunderstood people and often misinterpreted nurses and doctors who came to see him.. He made fun of a few. He stared at the ceiling. He whispered words that didn't make sense and jointed up words people have said...

One thing he kept saying to me throughout the day was that he loves me. "I love you so much." "I love you with all my heart." "It's going to be sorted out, it's going to be alright, I promise you." I held back my tears so many times. He asked me to hold his hands. We held each other's hands for hours...Many times he fell asleep.

I felt that I'm losing him. I'm so, so scared. Couldn't take the immense sadness.

In the ward, in the following days, I was told by doctors and palliative nurses that it could be a matter of days before Dave's organs failed him. I was advised to prepare myself for the inevitable. Dave was suffering so much. He couldn't get himself out of bed. He asked me to lift him up from the bed every time he needed to use the toilet. It hurt me so, so much to see him struggle like this... "Please God help me. Please help us," he said with such desperation in his voice. It made me cry inside every time. I felt just as abandoned as he did.

I knew that Dave wanted to spend the remaining of his time in his own house, and I fought hard for the team to speed up processing the care package and get him home. Finally, Dave got back home late night on the 8th of September, after hours and hours of waiting for the ambulance to be organised to take us home. 

The morning when Dave woke up in his own bedroom, he said to me, "The room is so lovely." That was the first positive thing he said in weeks… Although he was more calm at home, he wasn't going to get any better. 


9 September


I sat by Dave talking to him most of the day. Before giving him the last morphine pill at night, I said to him that I love him very much, always... 

"Me too," he replied. "Let's go together." Did he mean heaven? Or traveling together like we used to? 

I kissed him again and again before saying good-night.


10 September


In the early evening, Dave suddenly felt running out of breath. Ambulance was called and they checked him and said his breathing was normal. They said he's feeling anxious and agitated because his conditions are getting worse... The medics called Royal London Hospital and checked with the team. The solution was giving him midazolam and liquid morphine. 

During the discussion with the medics, Dave kept calling my name. Then he fell asleep  soon after the drugs were given to him. 



11 September


Dave was in so much pain that I called St Joseph Hospice's medics to come to give him a further morphine shot (combined with midazolam). The medics said that tomorrow will be time for Dave to start the syringe driver, a constant pump of morphine. He would qualify for the morphine driver when he needs more than three times of injection within 24hrs. I sat with him for a while as he fell asleep. 



12 September

Once the syringe pump started, Dave woke up less and less.

One of the few people who were there for me during this time was my GP, Dr Aiyengar. She visited us one day and talked me through Dave's conditions. She kindly gave me the support I needed. 


13 September


I sat by Dave's bed every day. I tried to talk to him and give him something to eat and drink, even it was just a couple of protein shakes and half an orange and some grapes. He couldn't manage much more. This afternoon, Dave woke up from his deep sleep when I was playing some of our favourite music by his bedside. The music that we used to listen to a lot when we first met. He opened his eyes! I helped him to sit up. I kept talking to him and he mumbled words back, but I didn't understand.

"Would you like some raspberries?" I held up the box of his favourite fruit. He nodded instantly and so he had lots of raspberries, and an orange and some houmous. We had lots of cuddles and kisses. I massaged his back, which he really enjoyed. He leaned on me, kissing my cheek as I carried on with the massage… Then more cuddles. In retrospect, I'm so glad that we had those beautiful moments together...

Dave tried to sit there for as long as he could. He also took his daily meds that I gave him and drank some water. I took the opportunity and asked him if he'd like to take a little walk (just along the corridor). "Let's go for an adventure," I said with a smile.

He nodded, "yes," he said. But he didn't get round to do it. Too exhausted and drowsy, party because of the tranquillisers they gave him in the pump.

Then he looked agitated and sad. He looked like he was so drowsy that he was going to pass out, but refused to lie down in bed. It was as if he knew time was running out and he must grab hold of each remaining moment... I held him and repeated to him that I'll always be there and we'll always be together.

The nurse came to change his syringe pump later this afternoon and Dave fell asleep fast and sound.




14 September


Dave didn't wake up all day. No water or food. Couldn't respond to anything I said. In the afternoon he opened his eyes a few times, staring into space. I wasn't sure he was actually awake because there was a complete blankness in his eyes. I sang to him, and played music. He twitched.

In the early evening, Dave's breath became shorter. I called St Joseph's for help/advice (as they had been helping out with meds). Dave opened his eyes and stared at me, with water in his eyes as if he was gently crying. He still could not respond to what I said. I wiped away his tears and kissed him again and again. He didn't stop staring at me. It made me cry.

Then Dave's breath sounded shorter. So I called 111. They sent a team and had a look at him. They said he was short of breath because he was dying... and he may die in the next 24 hours – or even within a few hours. I was so shocked to hear this. I didn't expect it to be so soon.

When the team left, I sat by Dave's side, talking to him and holding his hand… Within ten minutes, at 21:45, Dave stopped breathing, in front of my eyes, with his hand in mine... I panicked, screamed, shook him and tried to wake him up. He would not wake up again.

I held onto Dave's hand and caressed his hair and his face. I continued to talk to him, for two hours, telling him how much I love him and how much I have enjoyed the last ten years of my life with him. I recounted the stories of our adventures together… He was my love and my best friend. He always told me that I'm his rock, and that's what he was to me. In the old days when I had trouble in my life, he would always say to me, "It's me and you together against the world." Two days before his passing, he told me in his semi-conscious state, "I'll be hanging around here with you when I die." But the moment he stopped breathing, somehow I knew he would be gone forever... I've never felt so utterly alone in my life. 

Dave passed away just two days away from his 60th birthday. The vegan caramel cake was already made, for his birthday celebration when his close friends would be coming to say goodbye to him. It is my deepest regret that Dave wasn't able to have his birthday celebration. In fact, I'm so angry that he was taken away so soon. 


15 September


I went to the GP to sort out Dave's death certificate. After that, I took all his meds back to the pharmacy. Then I felt I had to take a walk to St Dunstan's, for old times' sake. Two autumns ago, Dave and I were strolling here at St Dunstan's... We still had hope then. Those days felt like a century ago. Back then, we had prayed for recovery... On this walk after his passing, I pretended that Dave was still there next to me. I spoke to him about the things we used to see and the streets we used to walk… Maybe Dave will be with me for a while, before he goes to heaven – if there is a heaven.

I decided not to sleep at Dave's house at Coopers for another night. The memories of his passing on Thursday night were too fresh and painful… So I walked back to the flat where we recently stayed near Barts. I went past all the familiar places. I spoke to Dave again along the way. I took the sunset pictures like he used to...

Back in the flat, I started sorting Dave's belongings, clothing, and every object that represents memories of our times together… His camera, books, boxes of meds, his walking stick (which he started to use when he could no longer walk properly from a month ago), his cancer record notebooks… My heart broke each time I looked at them; it never stops breaking.


17 September


It's Dave's birthday today. I had booked tickets for the exhibition "capturing the moment" at Tate Modern for him. It would have been an enjoyable experience for him. I walked across the Millennium Bridge to Tate in the morning. Dave always liked this walk…I talked to him, saying "happy birthday" to him... After the exhibition, I went up to the viewing platform on the 10th floor. It was windy but I took a few pictures, like Dave would have done. Sat down for a coffee and a carrot cake, like we did before.

I was going to take him to a birthday lunch up in the Sky Garden, knowing how much he liked photographing the city from tall buildings... As part of his birthday presents, I was also going to take him to Rotterdam for two days. He loved wandering around continental cities. Our last adventure was in Oslo. He was still remembering it a month before his passing... 

Time has lost its meaning without Dave. "Please spend some time with me before you go to heaven, if you're going," I said to him. Sometimes in the past two days I felt he was with me. More and more I feel I'm lingering like a ghost (more so than he is)...having no aim or purpose in this world...

                from the viewing platform of Tate Modern, on Dave's birthday (would have been his 60th)




In Loving Memory of David Norman Barkway, 17 September 1963 - 14 September 2023 

Service held at South Essex Crematorium, Monday 2nd October, 2:30pm

It was attended by Dave's loving family and friends. The wake was held at the Huntsman & Hounds afterwards. 

It was heart-warming to see Dave being loved by everyone there. Tributes from brother Michael, cousin Sarah and Dave's friends - David, Andy, Kevin, Mick and Jim - were beautiful. It was so lovely that Dave's aunt Jean and cousins Andrew, Dan and Gill were all there. Andrew and Dan's dad Brian's funeral service six years ago happened to be on the same day as Dave's, making this day particularly painful for them... 

My parents, brother and sister also sent their love from thousands of miles away...

This is tribute from Michael [with permission to use in full]:

David was born on 17 September 1963 in Forest Gate Hospital. Eldest son to Norman and Sylvia Barkway and older brother to Michael, who was later born in 1966.

The family home was in Glenwood Drive, Gidea Park, a quiet suburban street ideally situated and close to everything you could want parks, schools and shops.

Our family environment could not have been better with mum, a full-time housewife and dad an accountant with Bunzl's, who travelled into London each day. Summer holidays were joyful times spent on day trips down to east & south coast resorts such as Eastbourne, Margate & Frinton or playing football in the park with Michael and a host of friends or other kids in the area that we met. I recall that seaside trips invariably resulted in the two brothers always competing into who could stay in the water the longest and the furthest out when the tide came in!! Invariably David used to win! Birthdays and other special anniversaries were spent with grandparents at the family home with nice food, chat and laughter and Christmas celebrations always meant playing all sorts of games most notably card games where 1 & 2 pence pieces and merry maid chocolates were used as gambling chips. On a few occasions, the competitive streak in David got the better of him and if Michael won the prize David would pull off the table cloth and stride off upstairs in protest only to return 5 minutes later and proceed to win every other game that evening!!

David attended Gidea Park Primary School in Lodge Avenue Romford in 1968, a fantastic school just a stone's throw away from the family home and in this time both brothers forged great friendships with other pupils and parents some of which continue to this day. Kevin is present today and will provide his own reflections and memories shortly. It was clear that from about the age of 7, David had shown an aptitude for being a bright scholar and was achieving great results across a range of subjects especially English and Mathematics. Parents evenings for Sylvia & Norman were always a joy to attend with David receiving glowing praise from all teachers!!

At the age of eleven, David attended the Royal Liberty School for Boys in Upper Brentwood Road in Gidea Park and continued to shine academically in all subjects and won numerous ends of year prizes for achievements in school subjects and this was born out by glowing school reports with positive comments from all teachers even the headmaster! It was quite handy for Michael when he started the same school. Having a big brother two years ahead had its advantages – knowing the ropes, who to avoid and who not to avoid as well as being able to ask for some assistance in homework on topics he seemed to know so much about. However the drawback was that there was normally a charge of 2 large mars bars per piece of assistance. Once again David forged good friendship with other pupils at the school which have continued to today and long time friends David (Baldacci) and Andy (Beats) are with us today.

During the course of secondary school years, David's musical taste started to blossom and his collection of vinyl started to get bigger so much so that Dad made a special box decorated in left over front room wallpaper to house all the records! The Tommy Vance Friday Night Rock Show on Radio 1 becoming compulsive listening for David as homework was being completed! Electronic, Indie and some hard rock were all favoured including one group called Tangerine Dream, who no one had ever heard of but which David was mad on and he bought every album as soon as they were released !!

Another source of enjoyment, was the construction of model planes, tanks and warships – Airfix models to be exact – who remembers those ?! David had the patience to piece these things together and then paint them – a steady supply of Bostik was always on the go at Glenwood Drive and cleaning of the house started to turn into an absolute nightmare for mum with seemingly hundreds of model planes hanging from the door, ceiling; shelf brackets and on top of every available inch of space on top of wardrobes. Life was not worth living if any models got damaged !!!!

Having successfully completed and passed 4 levels David studied Aeronautical Engineering at Queen Mary College in Mile End East London. The good news for David – not so sure for mum – was that it meant he could maintain living quarters at the family home whilst enjoying all that university life could offer! He loved the life style and at the same time maintained his ability to sleep non stop for 12 hours – quite some achievement even through storms or other disturbances – and a bit annoying for mum especially when Sunday dinners were already to be served up and he was still snoring away!!!!

Having successfully completed his degree, David was offered a position at British Aerospace based in Hatfield Hertfordshire. David shared a house with a number of colleagues in Park Street a short distance away from Hatfield House. It was a great environment with lots of laughs, socializing and frivolity! Michael used to drive across some weekends for social events and gatherings. After 8 years, unfortunately a decision was made to close the plant at Hatfield and David was forced into a change of location and profession.

In 1993 David joined Euler Hermes who at the time were based in OId Street in London at the same time bought a house in Coopers Close, Bethnal Green, a quiet cul de sac about 100 yards away from the hustle and bustle of Mile End Road. David was proud of the house and loved the thought of becoming an adopted East End boy and developing elements of his cockney rhyming slang. Many a happy gathering was held across the years be it barbecues or ad hoc parties . Later, the company moved across to Canary Wharf and long hours of work followed for David and his team but he worked and played hard and continued to enjoy many a social event with his friends and colleagues.

In 2012 David left Euler Hermes following redundancy and took some time out to freshen up, lose some weight, take some holidays and enjoy the fruits of his labour whilst at the same time keeping half an eye out for his next port of call. One of the highlights of 2012 were the London Olympics and Michael's endeavours of purchasing and negotiating tickets for as many events as possible paid off and resulted in us both attending many glorious nights at the Olympic stadium in Stratford as well as a Wimbledon final. It was a great time, everyone feeling proud to be British whilst pinching ourselves that we were able to walk home from an Olympics!

Later in 2012, David was offered a short-term contract with Transport for London for 6 months … in fact this kept being extended for nearly 3 years. Although David was frustrated with some of the working practices, he was very well liked by everyone he worked with and especially by the younger members of the team who were inspired by his patience, know-how, experience…. and humour.

In 2013, David met Hsiao-Hung (HH) and it was clear from an early stage that he had met his true soul mate for life. Life was enjoyed to the full and meet ups were always greatly enjoyed mixed with humour and food. Annual Christmas dinners at Coopers Close were always a highlight of the year for which David always enthusiastically volunteered to cook. The menu followed a tried and trusted pattern and the bar was raised each year by the quality of cooking and roast vegetables, Yorkshire puddings and unlimited amounts of ice cream. David's specialty was his ability to create some of the biggest Yorkshire puddings I have seen in many years but he never did let on the special ingredient or method!

The last three years have been particularly hard to comprehend at times with David's cancer diagnosis and how advanced it actually was and I remember feeling totally numb when I received his call back in 2020. David was extremely positive stating that he would tackle it head on and conquer it. It was quite awe inspiring both listening to how he was handling it whilst at the same time being ultra positive and determined and maintaining the ability to humorize the situation and laugh at himself. To survive 59 treatments is testament to the strength of the man and the positivity of mind and the love, care and support that HH provided throughout this time.

Brother, best friend may you rest in peace. Remembering the good times. You will be in my thoughts always. Michael xxx


This is tribute from Sarah, on behalf of the family [with permission to use in full]:


"I have been asked to say a few words on behalf of David's family.

I am the eldest of David's four cousins with Rachel, Andrew and Daniel being younger than him. His mother Sylvia and my mother Barbara were sisters. David - joined by Michael several years later, were very much a part of my sister Rachel and my formative life. We would meet up regularly in holidays as well as family gatherings and celebrations - both happy and sad.

I said to Michael recently that we saw them more like brothers. He said the same. We were more than distant cousins. David was always so good tempered, well mannered, kind and thoughtful. I never saw him get cross and he just so loved life.

When we were young, David particularly liked making up airplane kits and I remember them all made up, painted and hanging from his bedroom ceiling. His love of planes developed from a young age.

David and I being close in age tended to talk and play together as children. Once adults, we continued to meet up. We both shared a love of visiting art galleries plus a good lunch afterwards! He knew the Tate Modern like the back of his hand and I got the impression he was often to be found there as he knew where everything was and the quickest way to get around.

When he was working for TFL, he invited Edward and I to meet him for lunch a couple of times and one time, suggested before we went home, we try the Emirates cable car. He always had ideas of new and interesting places to go and things to do that you might not have thought about.

One thing he never liked over the years was travelling in cars so living in a large town obviously suited him well. After university and moving into Coopers Close, he became 'Dave from the East End' on cards and all communications. He got to know the area very well. A year ago, he, HH and Michael took Rae and I out for lunch preceded and continued after lunch on a walking tour around the East End. He had different 'tours' to suit how long you had available but they also included the history of what you saw on the way. I am sure many of you here have experienced these enlightening walks. My sisters and my feet recovered after a few days!!

Over the years our family have had to say goodbye to his four grandparents, his parents Sylvia and Norman, my parents Barbara and Dick, Brian his uncle and way too soon we're here saying goodbye to him. It's hard to believe that only 12 weeks ago, Rodney and I met up with him, HH and Michael for lunch and a walk around Farringdon. We had a lovely day and sadly didn't know at the time it was to be our last day out. On that occasion David said to Rodney what he wanted was 'life'. Sadly, only several weeks later, I visited him at the Royal London Hospital, where he was so terribly unwell. He was still able to add the odd comment when Michael, HH and I were chatting - which was lovely particularly when we thought he was asleep!

As a family, we were devastated to hear of his diagnosis and he said from the start, he would do everything he could to fight it. And so he did, even when he must have been feeling so terrible - his determination and positivity throughout was astonishing. The pandemic made things even worse for him and his family and friends who suddenly weren't able to see him. Also such a sadness that he missed his 60th birthday by three days.

Of course David had the most tremendous support from both HH and Michael. They managed to get him home against the odds - back to his home where he wanted to spend his final days. Our family have admired how you have both handled such a dreadful situation with such dignity.

Michael, as a brother, you have always been there for David, he could always rely on you, always willing to help or just listen. You always seemed to have such a strong brotherly bond. Your parents would have been so proud of you. Your family are here when and if you need us.

HH - you were so beloved by David and we are all so sad that you did not get more time together to do the things you loved - more travelling, exploring places, and being together. You took such care of him, especially the last few months when it must have been so hard. Your positivity was as strong as his although you must have been breaking inside. You are part of our family and we will always be here if you want or need us.

David - from your family - Jean, Andrew and Vanessa, Daniel, Jill, Charlie and Jack, Rachel, Richard, Emily and Alice, Rodney, Edward and myself - we must say a final goodbye. The most difficult goodbye we'll ever have to say to you. We thank you for all the fun, laughter and happiness over the years. We hope that you knew how much you were loved and how much each family member thought of you. We will always love and miss you as the years roll by.

Rest in peace. God bless."



At the wake, I had lots of warm hugs and a lovely, long conversation with Nelly, who shared with me her own experiences of coping with losing loved ones... I really appreciate her kindness and solidarity. I'm also grateful to Dave's former colleague and friend Jayne for being there. Her supportive conversations with Dave always cheered him up in the past few years. Thank you so much, Jayne.

I'm thankful to our friend Les for being there: Dave enjoyed many get-togethers with you, Les. It was also very kind of my friends and Dave's fellow walkers from the "Strangers" group to be there - Thank you so much for your support, Hsiaowen, Mark, Don, Denis & Elly, Jabez & Angela. Dave enjoyed so much your company on the walks along the river, north and south...

Many thanks to Eamonn for attending Dave's funeral and to Mercedes for her kindness and for welcoming me back to Coopers... And I'm so moved by Henry and Margie's kind support. It was so lovely of Margie to bake a cake for me! Many, many thanks! 

A week after Dave's funeral, my former neighbour in Sidney Street told me that there were some beautiful flowers delivered to my previous address. I found out that it was from Julia Rampen. It was so kind of her to think of me. Thank you Julia! 


To remember Dave, people have kindly donated to Maggie's, our chosen charity. 

This is a kind message from Maggie's:

"Thank you for facilitating a collection of funds to support Maggie's Barts in memory of David. We hope it is of some comfort to know that your kind gift will make a real difference to the lives of people with cancer, and their families and friends.

Your heartfelt donation will help the people who visit our centre, whether they are facing a diagnosis themselves, or supporting a loved one. Inside our calm and welcoming centre families can seek helpful advice at any time, free of charge. They can speak to people who understand the challenges they are going through. Get counselling and family support, or they can simply find a peaceful place to sit when they're feeling overwhelmed. These sources of comfort are available thanks to your kindness."





Remembering Dave

An old friend of Dave's said to me, "Don't forget who you and Dave were before the illness." Well said. Our years before 2020 were filled with adventures and fun... To remember Dave and our times together, I'm naming this selection of photographs "Capturing the Moment." Our innocent selves were truly living the moment and were unaware that one day we would be looking at these traces of memories in such a way... I'm keeping and treasuring these moments forever in my heart...


Capturing the Moment, 2013-

at Mount Vesuvius, Italy
at Mount Vesuvius, Italy
Campobello, west Sicily, where we spent a lot of time in 2018-19
Campobello, west Sicily, where we spent a lot of time in 2018-19

Living by the sea, Marsala, 2018-19   Photos by Dave


14 October 

It's been 30 days since Dave passed away.

I'm living every day like Dave is still with me. I take walks to places we used to walk to. I whisper to him for the little advice I need, like I did before... And I still wake up saying "morning" to him - or to his T-shirt that he left on the bed on the day we went to the hospital on the 28th of August. 

The past 30 days were filled with unpredictable ups and downs... On a few days, I was able to feel at peace and simply remember the good times (as everyone kindly tells me to do). But most days, especially most nights, were filled with sadness, regrets, a lot of anger, and complete emptiness. 

Family and friends have been kind, sending messages of encouragement and support. I also tried to "feel better" by meeting a couple of close friends. One of them reassured me that the funeral service went well and Dave was loved by family and friends, which was comforting to hear... She brought me the non-alcoholic wine that she and her partner prepared for Dave's birthday... On another occasion I went out for a ten-mile walk with another friend and had to have a good cry when I got home... I carried on talking to Dave on all these occasions.

I'm making today, the 14th, a special Dave's Day. I packed more of his belongings to take to his house at Coopers. There, I tidied up the lounge, and threw away the old flowers in the jug - still don't know who sent these flowers but they were beautiful when they arrived at the door three weeks ago. I cleaned the floor. Then I sat down in the lounge and said to Dave how much I'm loving him and missing him... I promised him that I will be coming to live in this house in a few weeks' time when I've moved all his stuff back here. 

Then I walked up to Commercial Street where the Van Gogh exhibition is. I wanted to remember Dave this way, because this is something that he would have enjoyed very much. It is an immersive experience that incorporates 200 of Van Gogh's works in the most beautiful way... It displays his styles and methods and reveals his propensity to study and paint a subject over and over again... His emotional and artistic intensity is really moving... 

I think Dave enjoyed the exhibition, too. This has been a really special day...

I will not be "moving on" from Dave. Instead, I will continue living the life we did and take pleasure in doing the things we loved doing together. I want to move forward with Dave. He will always be there with me and be the main source of my strength... I know that because I'm feeling that strength every single day.

finding Dave's last Christmas card to me was emotional...
finding Dave's last Christmas card to me was emotional...
non-alcoholic wine for Dave, from Hsiaowen & Mark
non-alcoholic wine for Dave, from Hsiaowen & Mark

"It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done" 

- Vincent Van Gogh




                                                          Dave's "teddy photo diary", 2015, when we were parted for a week

14 November


Today is Dave's Day.

It's been two months since Dave passed away. This is the longest we've ever been (physically) parted. I remember back in 2015 when we first parted for just one week (when I visited family in Taipei), Dave was feeling very low. In the most endearing way, he sent me a photo diary of my teddy (to show me how he spent his day)... He then joined me in my second week in Taipei.

Now I look at our photos and films every day and think how our lives could have been different...

I'm moving back to Coopers slowly... The sight of the main bedroom never fails to bring back painful memories - particularly memories of how Dave was in the last week of his life. He was actively dying, in front of my eyes... We were alone in our own universe. At his bedside, I listened to his sounds of despair every single day - and at night, too. There was no longer any hope, and no more future, for him - and for me, too...

And what made it even more painful for me in the last week of Dave's life was that I could no longer share my thoughts and fears with him - he was not always awake, and when he was awake, he was mostly confused. In those last few days, Dave was ready to leave. I watched him disappearing into another world and there was nothing I could do.

Now I spend a lot of time tidying up Dave's bedroom at Coopers. I'm keeping many of his clothes - those shirts, jumpers and jackets that he particularly liked. I'm keeping his wardrobe and drawers for him. The house is filled with vivid memories of our times together...and I'm keeping it that way.

It's getting much colder and the heating hasn't worked properly at Coopers. I continue to stay in the flat for a bit longer. Every night I fall asleep feeling that familiar pain in my heart. Some nights I become uncontrollably sad... I'm woken up a lot during the night and rarely sleep through.

Every morning I wake up feeling angry. Angry with myself for not able to see it coming - and not able to detect Dave's illness early. Angry with the NHS for not providing people with regular screening until it's too late. Angry with those oncologists who treated Dave like a number. Angry with those who abandon Dave in the past three years when he was most in need of support. Angry with those who play the game of marginalisation and make me feel so alone. Anger has overtaken sadness sometimes, so much that I fantasise about revenge.

one of my favourite walks, through Brick Lane, on a Saturday morning
one of my favourite walks, through Brick Lane, on a Saturday morning

In the daytime I carry on living as if I were normal and OK. Recently I met with Sharon, one of Dave's old friends, and had a lovely chat. I also met with a few friends whom I haven't seen for a long while and spent nice afternoons with them. I went to see Ken Loach's Old Oak and felt so emotional... I dragged myself out to a book launch, in a room full of people (yes, people!). I took many long walks, one of them to Marble Arch where I took part briefly in a demo. Over ten miles there and back. And I study Italian two hours a week - this was something that both of us had wanted to do properly. I talked to Dave during my daily activities, as if I was talking to myself.

I have a good chat with my sister Hsiaolan every day which helps a lot. She has been worried about my situation and made it a habit to call me daily. Cousin Sarah and auntie Jean often write kind and supportive messages to me and I really appreciate it. One Saturday Michael offered me the much-needed help: we sorted through some boxes which were left at his garage. He will transport them back to Coopers, too.

A few friends Dave and I knew in Sicily often send messages of support to me. They reminded me of the time we had back in those days... Dave's absence has changed everything in my relationship with these friends. Sometimes, there's little motivation for me to pick up their calls...

Sometimes, a random letter from somewhere makes me sad and depressed. A council letter confirming names of occupants, for instance. I had to tick the box "deceased" next to Dave's name. It doesn't feel right to describe him like that. Dave's more alive than a lot of people out there, I can say that for sure!

This morning, I walked from Coopers through the familiar streets all the way to Tate Modern. The same route we always walked on our way to Barts. It started to rain when I nearly got to the Millennium Bridge. I knew Dave would have enjoyed the walk anyway. At Tate, I'm spending Dave's Day at an African photography exhibition, 'A World in Common.' He would have loved seeing this. The works include Khadija Saye, Gambian-British photographer who tragically died in the Grenfell Tower fire. (Her work also inspired British artist Chris Ofili, who has an exhibition at Tate Britain at the moment.)

One of the outstanding themes in 'A World in Common' today is the legacy of colonialism. A large installations, 'A history of a city in a box' (2019) by Ndidi Dike, stands out (See picture below). Her installation brings together hundreds of discarded file boxes designed to conceal information. She fills them with archival documents, including colonial-era postcards and photographs, and surround them with sand and soil... "Information is hidden and buried..it is inaccessible to the people, and only permitted to those in power. This is really a holdover from the colonial era...Information is the foundation on which cities are built...it's the way they operate, how power is generated, how inequality prevails."

I find the Water Life series (2018) by Aida Muluneh stunning. (See picture below.) Muluneh was born and works in Ethiopia. She explores rural water access and its impact on women's rights, well-being and education. With the rise of extreme weather conditions caused by climate change, the issue of access to clean water cannot be more important...

I like the way the exhibition is concluded, with a quote from Afrotopia (2016) by Senegalese writer Felwine Sarr, who calls for Africans to think and formulate their own future.  "Africa has always been the object of discourse by others. Now is the time to dream this utopia in Africa itself, to design Africa ourselves, to think, and to act for ourselves."

I believe Dave thoroughly enjoyed the day, despite the rain... Loving you and missing you so much, my dearest...

                                                         'A World in Common': African photography, Tate Modern

Khadija Saye's self portrait
Khadija Saye's self portrait
from the Water Life series (2018) by Aida Muluneh
from the Water Life series (2018) by Aida Muluneh
'A history of a city in a box' (2019) by Ndidi Dike
'A history of a city in a box' (2019) by Ndidi Dike
Worrying the Mask (2020) by Zina Saro-Wiwa interrogates the use of masks to represent communities and cultures
Worrying the Mask (2020) by Zina Saro-Wiwa interrogates the use of masks to represent communities and cultures
The stranger's notebook series (2016) by Dawit L. Petros
The stranger's notebook series (2016) by Dawit L. Petros
from Water Life series
from Water Life series

Late November


It's been two and a half months since Dave left us. Things seem to only get worse as time goes on... Time does not necessarily "heal", but can reinforce and deepen the pain...

Back at Coopers, the memories of Dave's last few days have never faded. His infrequent, simple words. "Little orange," he said to me when he wanted to have a Satsuma. The memories of feeding him fruit by his bedside. And his heavy breathing, and his calling my name in the middle of the night... What was on his mind every day, that week? I'm sleeping where he was sleeping, and I imagine how he felt when he opened his eyes seeing this room... The only reassuring thing now is that I can say to Dave that we're properly back at Coopers living together again. 

Temperature's dropping fast in late November. An engineer recommended by my old friend Weihong helped me sort out the problem with heating in the house. In fact, there was nothing wrong, but stupid me needed someone to show me how to work the new system... It was so nice of Weihong to come to see me a couple of times recently - and bringing with her mangos and Sharon fruits from our Whitechapel market. I enjoyed our long chats.

Mick and Sharon came round one Saturday. They brought over the olive tree they got for Dave's birthday...Jim and Lou visited, too, that afternoon. If only Dave were here to see his close friends in his house! Hsiaowen and Mark also kindly visited a couple of times. Many thanks to Mark for his great advice on bereavement support, security for the house, and other issues. He installed the security doorbell for me, which was great help. 

Cousin Sarah and Rachel were so kind. They took me and Michael out for a delicious lunch at Hansom, St Pancras. It was really lovely to catch up. A heart-warming get-together... We talked a lot about Dave... The station reminds me of those beautiful evenings when Dave and I used to meet up when I got back to London from my research day trips. We used to go and have a drink at the hotel bar before getting on the tube back to Whitechapel. Thank you Sarah and Rachel for bringing these memories back!

I walked through Bethnal Green Park the day before Dave's committal service. Saw our little squirrel friends for the first time since last winter. They came over to ask for food, like before. It was as if they remembered me. We used to have all sorts of nuts with us when we came here... We would stand here feeding them, one by one...Dave loved doing it.

A few steps away, many cards, written in Spanish, and flowers, were placed under a tree - this was possibly a site where someone passed away. This little memorial was here from two years ago and Dave used to get emotional when he saw it...



30 November

Today, Michael and I held the committal service for Dave in one of the gardens at South Essex Crematorium. Dave's closest friends shared this special day with us - Andy, Dave (Baldacci), and Kevin whom Dave knew from his early years in Essex, and Mick, Sharon and Jim whom he met in Hertfordshire in his twenties.

Dave's resting place is in a quiet corner with benches next to it. Lots of squirrels running around... It was very sad for everyone to say their final goodbye to Dave. When his ashes were buried, I said to Dave that I'm grateful for all the good times he gave me, and as far as I'm concerned, he's still here with me and always will be.

I listened to the words that were read out to us...and the scenes in After Life came to mind. It was one of Dave's favourite series and we watched it three times. Each time it moved Dave to tears... The last time we watched it was a couple of months before Dave passed away. In that story, the woman recorded a video for her husband before she died (of cancer), in which she urged him to live life to the full...

"Do not stand by my grave, and weep.
I am not there, I do not sleep—
I am the thousand winds that blow
I am the diamond glints in snow
I am the sunlight on ripened grain,
I am the gentle, autumn rain.
As you awake with morning's hush,
I am the swift, up-flinging rush
Of quiet birds in circling flight,
I am the day transcending night.
Do not stand by my grave, and cry—
I am not there, I did not die."

(Clare Harner, The Gypsy, December 1934)

Dave Baldacci brought flowers which was so lovely... The plaque wasn't ready, though, and we have to wait another two months for it. The flowers made it look less lonely there... Dave B. showed us around the cemetery. I didn't realise it was so large - and really beautiful (see pictures). Dave B's and Andy's parents were buried there, too.

The eight of us had lunch at the nearby pub Huntsman & Hounds afterwards. Heard that Shane MacGowan died today. Always loved his music. I remember listening to the Pogues many times with Dave...

I had a lovely chat with Dave B. It was moving to see how deep his and Andy's friendship was/is with Dave... When Dave B. broke down in tears, I felt like crying with him... He gave me some honest advice about coping with loss - and specifically about anger. It's the kind of advice you'd only hear from people who care... Point taken, Dave!

Meanwhile, I think it is OK to have negative emotions and feelings in times like this...I recently learned a new technique (!) called "expansion" from a workshop at Maggie's. It means opening up and making room for these difficult emotions and feelings, allowing them to flow through you without a struggle. It is about giving up the battle with our suffering and giving it permission to be there... Accepting these negative emotions and feelings and "make peace with them" can actually be therapeutic, said the very patient workshop leader. 

Dave B, Andy and I also took a little walk after lunch, to Parklands Open Space. This place's history dates back to Roman Britain, as Dave B revealed. Freezing cold, but I always like walking through fallen leaves...And the bridge is so pretty!

The crematorium gave me a pouch of Dave's ashes, as requested. It will be like having a bit of Dave (physically) with me all the time... His ashes are now kept in a small urn in our bedroom at home. "You're safe here," I said to him. Maintaining his presence comforts me a lot and helps me focus... You are home, Dave.

You did not die, Dave.

You are forever in my heart...



Many, many thanks to Mick and Sharon for bringing this olive tree for Dave (See picture on the right). This was their birthday present to Dave...If only he had waited for two more days. Dave loves olive trees. It will constantly bring back memories of our beautiful years in Sicily. Missing you so much, my love...



7 December


Started my day at 7:30am. Talked to Dave, and made some coffee. For no reason at all, I thought of Benjamin Zephaniah. Every December, I wrote a message to him wishing him "happy new year," like I did with friends and work contacts whom I didn't see very much. "Haven't heard from him for a few months," I thought. I wondered what he was up to.

Then half an hour later, a couple of messages came through from WhatsApp. "It is with great sadness and regret that we announce the death of our beloved husband, son and brother in the early hours of this morning the 7th December 2023. Benjamin was diagnosed with a brain tumour 8 weeks ago."


The news shocked me and saddened me so much. I just couldn't believe it. Benjamin? A healthy and fit activist, poet and performer. I only really believed what I read when I saw the newspaper headlines.

Benjamin has touched many people's lives. Tributes came from all corners of the world. For me, he couldn't be more down-to-earth. He talked to people like they were his neighbours. And I was one, years ago. I knew him when he lived in East Ham, a few streets away from me, in the 2000s. He was supportive of my first book Chinese Whispers and kindly wrote an excellent review for it (without me asking). He was generous in his kindness and encouraged me a lot. He was good fun to be spending time with. He used to show me around the vegetarian dining places in Upton Park near us and the vegan bakeries in Angel...

When he moved to the north, we kept in touch and sometimes met up when he came to teach in London. He never gave up trying to convince me to become a vegan. We tried out a vegan Korean-Italian place in Brick Lane... I remember him "preaching" (at the time it felt like preaching) to me about health and veganism. Sitting in my Sidney Street flat, back in 2019, he sipped the winter melon tea that I brought from Taipei and told me that I'm not living healthily (Both Dave and I were smokers at the time and ate meat). "You really need to change," he said to me. If only I listened to him earlier! 

In the past three years during Dave's illness, Benjamin was one of the few who didn't vanish. He carried on calling me and talking to me. We talked about cancer, the pandemic, our families... About Life and death. He always asked about Dave and showed a lot of care. Sometimes we debated about stuff, or simply tried to have a laugh. When I couldn't answer the phone, he would always leave kind messages...

When I heard such tragic news about him today, I've been crying for him inside. He loved life so much - like Dave did. How could he have coped with such news! How could this be fair? I cannot make sense... Benjamin was a wonderful person. I will always remember his contagious sense of humour, his brilliant work, his principles and his activism. Rest in peace, Benjamin.

Love the life, like Benjamin did!

Life and Rhymes of Benjamin Zephaniah





8 December


Sun's shining today, for a change...

I went to the cemetery to bring flowers to Dave's site today. Still quiet on a Friday. Few visitors. A couple of people cleaning and maintaining the place. 

They've taken away the metal stick (with Dave's name on it). I recognised the spot where Dave's ashes were buried. I placed the basket of flowers there, and inserted the beautiful yellow and pink roses all around the piece of earth, above the ashes... I explained to Dave what I was doing. I think he liked the look of the site now. 

I looked around, and thought the place looked really peaceful and lovely in the sun... 

It's been nearly three months since Dave left us.

I dislike nightime because I usually feel worse after dark. I feel so low sometimes that I have to go to bed early. It's as if bedtime can protect me from depressive thoughts... But then my sleep was often disturbed. The other night I was woken up by a bad dream - Dave and I were running away from some kind of disaster...So frightened. We were running for our lives. Last night, I dreamt that Dave and I came back to a house filled with dust and no furniture except a broken sofa. A broken home. I woke up feeling so sad and fearful.

Some people asked me if I feel lonely and assumed that I desperately want to be around people. The truth is that I don't. I'm not scared of being alone. I'm missing Dave terribly but not because of loneliness. I do crave human company, as most people do - but only good company. I only need to be around people who care. This is why friends and family are so important. (To be clear, I seriously do not need "professionals" who act as if they care but don't. I don't need to talk with unempathetic strangers, therapists included, who say "how are you feeling?" but do not actually want to hear my true answers.)

It was great to chat with my old friend Les. We met up in Captain Kidd (in Wapping), one of the places that bring back so many fond memories of times I spent with Dave. We used to come here to watch the boats. We also met with friends here on many occasions. Les kindly treated me to a birthday meal. We talked about Dave, and about life and death... Les also thinks it's good for me to get away from the Christmas period here.
I'm going to visit my family and stay with my parents in Taipei this winter. But I'm getting worried about Dave's ashes - they will be left here in the house at
Coopers. I hope that it'll be alright... Dave himself will travel with me, as he always does.

This Christmas season has become almost unbearable. Everywhere I turn, there are memories of times we spent together each December. It makes me so sad to remember how much Dave always enjoyed this time of the year - not for religion but for its festivity. And definitely for mince pies... I got him some vegetarian mince pies today. We always used to sit down for a coffee and two mince pies each, after a long walk...


12 December

This morning, as I opened my eyes, there was this painting of two black bears with red hearts sitting on top of the wardrobe... I hadn't looked at it for a while. Dave got that for me as one of my Christmas presents in 2019, a couple of months before the pandemic hit Britain. I thought it was a funny and cute painting, in typical Dave style. And in front of the painting are the two Palermo bears and our little East End toy bear that Dave loves so much. If he had a favourite animal, it must be bears! There's always a child inside Dave and that's what makes him so loveable...

Vicky Park this winter...

I walked through Vicky Park this early afternoon, for old times' sake. Vicky Park always looks bleak and sad in the winter and photographing it during this season is always melancholic... The hour's walk took me deep down the memory lane... I remembered some of the conversations we had during our many, many walks here. Dave was constantly interested in everything around him...He never got tired of photographing this place. Each walk was a new walk for him...Each sight was like a new sight. He would stand at the same spot each time, taking pictures of the same scenes, such as sunset, as if he saw it for the first time. I joked with him once that this is why he has thousands of pictures of sunset in Vicky Park.

Half way through the park, it started to rain. Had to quicken my steps. Got wet by several passing cars on Old Ford Road. I was soaked by the time I reached our local gallery cafe. Had to go inside to get dry. Meanwhile, I got myself some comforting leek soup. And a vegan cinnamon roll with my green tea. Felt like my day was complete! We are people of simple pleasures... Dave would have enjoyed this so much, too, especially after the rain.


13 December


I went to the cemetery to see Dave's site. It was raining a little and no one was around. Just perfect for my task - I brought with me some Sunflower seeds for Dave. (In one of my family WhatsApp discussions, my brother Yuren came up with the idea of planting our own flowers or trees at the cemetery.) This is one of the flowers Dave likes. (OK, Dave's top favourite plant is a cactus, but it's not practical to plant one here.) I planted the Sunflower seeds one by one, on the site where his ashes were buried. Each seed was planted about 20mm into the soil. By the time I come back from Taipei, there should be some Sunflowers growing! I have ordered some Tulips, too, but they won't come in time before I leave for the winter.


14 December


It's Dave's Day today. Three months have gone, and the memories of the night when he passed away remain vivid and painful. His teary eyes that spoke more than a thousand words. His stares. What was he trying to tell me? And his heavy breathing. Each second of his suffering was breaking me inside. Each minute that night was a short time away from our farewell.  

Today is also the 8th anniversary of the day Sylvia, Dave's mother, passed away. She would have been so devastated to see Dave so ill. 

I can never, ever forget how hard Dave had fought and how much he had suffered... I can never recover from the injustice of Dave's death and the pain of losing Dave who loves life so much. 

Dave's Day is a time for remembering his struggle against such misfortunes, his lasting courage and determination. It's a time for remembering things he has always loved doing (way before the illness) - and remembering what makes him a loveable person. 

I prefer to use present tense when I write about Dave. Because I feel his presence all the time. He is the energy that surrounds me every single day. He's the whispers in my ears. "It's me and you together, against the world!" he said, like he did before, urging me to carry on with life. He's the voice that keeps me strong. Although not physically here, Dave is still the centre of my life. He is still here with me.

Today, I invited Dave to come with me to the 'Nicole Eisenman: What Happened' exhibition at Whitechapel Gallery. It's our local gallery and we visited it a lot. This particular exhibition brings together over a hundred works from across the artist's three-decade career. 

I enjoyed her strong expressionist style and her sharp, dark humour that comes through a lot of her works... I like particularly 'The Triumph of Poverty' (2009) and 'Coping' (2008), which represent Eisenman's approach to the grim social reality that she witnessed in the context of rightwing U.S. politics and the global economic crisis since 2008. Her two beer garden pieces explore the theme of society's obsession with the concept of happiness. 

Dave enjoyed the afternoon, too. And we walked home and had coffee and a couple of mince pies each. In the evening, I looked at our old pictures and videos, thinking of our years together. I raised a glass of non-alcoholic pink berry wine to Dave. Here's to us!   

16 December


My tulip bulbs arrived! And it was a dry day. So I took the opportunity to visit the cemetery. I brought these tulip bulbs with me, and some more yellow roses - couldn't help getting more, as they were so beautiful. 

Dave's site still stood out from a distance with the roses from last week. I added the new yellow roses, and kneeled down to dig holes around the site. This was actually the first time I planted tulips - the online advice was to plant at twice the depth of the bulb. Some of the earth was too hard to dig a hole. I went for the softer ground. Hopefully I was doing the right thing! I planted about a dozen and stopped. We don't want to turn this site into a tulip forest yet, do we, Dave? 

Several men and women in their seventies were visiting their loved one nearby. I could overhear their conversation. "I don't mean to be funny, but I can't come here too often, certainly not every week...It's gonna cost too much," one woman said. It sounded so sad. 

This is a culture and society where the old, the weak and the sick would be ruthlessly abandoned and the deceased would be forgotten and forever written off... This cemetery has never been busy with visitors - not on a Saturday, either. 

I looked back at Dave's site again and again as I was leaving the cemetery. It's going to be two months in Taipei and I will miss coming here. I felt really low on my way home. Empty and lost. I wanted Dave's site to look beautiful and proud. It will always stand out from a distance...I want him to know that I will always love him and will always look after his site for him. Wherever I am in the world, I will always have him with me. You'll never walk alone, Dave. 

Back from Upminster to the East End this afternoon, I took a short walk to our Bethnal Green Park. I thought I was going to see our squirrel friends there, but came across this local solidarity demo for Palestine. "We are all Palestinians!" they chanted. Made me feel proud of people of the East End...

Pic below: Families were coming out to the streets of Bethnal Green, to join the demo



27 December


The moment I left the house at Coopers for Heathrow airport on the 18th, I felt I had probably made the unwise decision to leave for the whole winter. It didn't feel right to leave Dave's ashes in the house. I felt so low and sad... Then the flight was delayed at Heathrow and I was stuck in Dubai for the connection flight to Taipei. It felt like a show of bad luck. What's coming next? I feared. Finally reached Taipei a day later than planned – and barely recovered from the stress during the awful flight with terrible currents along the way… It felt like the plane was going to crash! Were you with me, Dave? Somehow I couldn't feel his presence there. I started to think whether I had left him behind in England…

                                                          Outside my accommodation in Dubai, on the 19th of December

My family had been waiting. My sister Hsiaolan met me at the airport with a nicely-drawn welcome sign, and we got on the crowded subway into town. Then my brother Yuren left work earlier and came to drive us from the train station to a restaurant where we were to have the birthday dinner with my parents. It was raining a lot, and it wasn't too easy to find parking space in the area. Yuren had to park back in my parents' place. But despite it all, we managed to order food and have our dinner uninterrupted... The performers there overheard our conversation and sang me a birthday song...

My family prepared a birthday cake for me - funny that the shape of the cake resembled Covid! But it tasted good. Yuren wrote this in his card: "So glad you're home! I hope you enjoy the stay, and find much pleasure and happiness in the little ordinary things around you here… May you be surrounded by beautiful things every day!"

Apart from all the lovely birthday gifts from everyone, Yuren and my sister-in-law Yutin also gave me the box of gifts that they had sent to Dave for his birthday (The box was awaiting tax clearance in a London depot in September and as I was spending most of my time in the hospital with Dave, I missed the notification letter. The box was sent back to them in Taiwan). So sad to be opening these gifts for Dave – and reading the heartfelt message that they had written to him in their birthday card. Both my nephews drew beautiful cards for Dave themselves. There was also a letter to me from my brother. It was written with much love.

I spent a lovely first weekend with the family. Yuren and Yutin organised an outing by Green Lake. My nephews especially loved the walk… Then back at home, we had many rounds of hide-and-seek with the kids. Had a Japanese lunch with them on the 24th. Also exchanged little gifts for the kids before Christmas Day, just for fun. They don't celebrate Christmas in Taiwan and everyone goes to work as usual on the 25th. It was kind of strange to experience a doing-nothing Christmas.

Thinking of Dave and missing him so much. This was my first Christmas without him since 2013. Listening to Shane MacGowan's Fairy Tale of New York saddened me so much…Dave loves this song. 

Despite the time difference, I received many lovely messages from family and friends in England. Dave Baldacci and Nelly sent greetings and a Christmas music video for Christmas evening... 

I went for a walk on Boxing Day. I felt Dave's presence particularly on this day, much like in London. He must be waiting to take this walk. And I spoke a lot to him. Visited the Tsai Ming Liang exhibition at the Taipei University of Education (bei-shi) gallery. Tsai is one of the most outstanding filmmakers of the Second New Wave and I've been a fan of his works. This exhibition is a unique display of his film characters and cinematography in the form of oil paintings…Visually fascinating.

I also enjoyed the walk from Heping East Road to the Taiwan University campus. Dave visited the campus with me in 2022 and he loved the walk and the history around him…

Back to my parents', I had lunch with them and then took a walk with my mother along the river near their place. She couldn't walk far anymore. We walked slowly and chatted…

The campus at National University of Taiwan (NUT) where Dave and I walked through in 2022...
The campus at National University of Taiwan (NUT) where Dave and I walked through in 2022...

Feeling depressed on the evening of the 26th. Missing Dave a lot. Then I received Dave B's message telling me that he's at Dave's site at the cemetery (It was morning in the UK). He called it "Dave's place in the countryside." He brought beautiful flowers, removed the old roses and tidied up the place. Looks perfect (See photo). He also saw a squirrel digging up the bulbs… Dave must be so pleased to have his place visited by his close friend. It made me sleep better this night. 

photo by Dave Baldacci
photo by Dave Baldacci



1 January 2024


Missing Dave so much. My New Year's Eve was filled with deep sadness - and the anxiety that I wasn't sitting by Dave's ashes in the house at Coopers... In my parent's apartment in Taipei, I often had to find some quiet in the room upstairs so I could talk to Dave. I needed to know that he was here with me.

On this day last year (1 January 2023), Dave and I were staying in Lisbon. I didn't need my mobile phone to remind me of that week... We took many great walks on those first two days of our arrival in Lisbon and had a much-needed break from the routine of Dave's cancer treatment. 

We were desperately trying to live life as we would have wanted to. But our destiny always caught up with us... Dave started to suffer from terrible side effects soon afterwards...and we spent most of the second half of our Lisbon week indoors. 

Now I look at those photos taken by Dave and remember what a keen photographer he was... I've always loved his passion and the way he wanted to capture precious moments in life. I've always loved the way he loved/loves life. 

                                                                                                                                     Photos by Dave (above)

Dave, my favourite person, my very best friend, my love...

Dave outside our flat in Lisbon
Dave outside our flat in Lisbon
enjoying non-alcoholic beer
enjoying non-alcoholic beer
dinner in the flat
dinner in the flat
in the flat
in the flat
Dave at the top of the city
Dave at the top of the city




3 January


When you have not lived in your country of birth for over three decades, you might imagine that things have always changed for the better and your reconciliation with the place will come easy. Yes, the dictatorship was long gone, and society has opened up over the past twenty years. There is no more that feeling of suffocation and the desire to escape... Even the smell and sounds of the place seem to have changed. So has the pace, and you might find yourself barely able to keep up. Young people are using phrases and words that you no longer recognise - they even swear in a different way!

Meanwhile, just when changes have taken place, old rivalries (on a social as well as personal level) have lasted, and the familiar clashes of values and ideas between you and the place are still very much there... The only difference is that now you may have a different way of dealing with it.

When I visited my old-time favourite independent bookshop Tangshan, I picked up a book of poetry, 'Remembering Taipei many years later', by Maniniwei, a Malaysian writer who lived in Taipei for twenty years. I enjoyed reading her poetry, written like a diary. She has a brilliant way of using interesting metaphors for depicting alienation, particularly alienation experienced by a migrant person living here...

I empathise with Maniniwei's observations and feelings about this place. The social distance, indifference and even apathy behind the "politeness" and social norms. The personal, quiet struggles against the day-to-day injustices. The price for an outsider to pay for fighting to be included and become part of society. In the background, the rain doesn't ever really stop and the humidity is constantly draining... Her experiences and her emotional battles living in Taipei have been light-heartedly and humorously summed up in her relationship with cats, home and stray ones alike. Like she puts it, eventually, "these cats made me feel home in Taipei."

I remember my father's words thirty years ago when I decided to build a life of my own in England. "One day when you grow old, you will feel different and you'll be drawn back to your hometown, your home country. Fallen leaves always return to their roots (luo yeh gui gen)."  But today I still don't know where those "roots" really are...



5 January


I had news from England: Dave's plaque had been laid, said Michael. No one from the crematorium has sent an email or message to let me know. The plaque was laid in a different place. Instead of the site where Dave's ashes were buried, which was the location they promised when we all met at the committal service on the 30th of November, they have moved the location of Dave's plaque to more than a foot away where many plaques were placed next to each other... 

I wrote an email to the crematorium demanding an explanation. But they said they only take instructions from "the applicant and owner of Dave's plaque" - and apparently, I have not been included as one of the applicants or owners!

This unfair treatment really saddens me. I still have not fully understood why... And I know what Dave would feel... He would want to be remembered and seen, and not be treated like a number in a cemetery! My heart aches for Dave... 

Do we have to endure this abandonment even after Dave's departure from this world? 



10 January


The crematorium responded and said that their curator had made a mistake (!) telling us (on the 30th of November) that Dave's plaque will be laid on the burial site of his ashes on the lawn. They apologised for the mistake and said the plaque cannot be placed there. Dave's plaque has to remain 1.5 feet away from his ashes. 


They also told me by email that there can be only one owner for Dave's plaque. So I have asked Michael to transfer the ownership to me and he has agreed. I visit the cemetery often and will look after the plaque and the site well. When I die, Michael can take over and look after it. 

It has been very sad and stressful to have to debate and negotiate these really basic issues almost four months after Dave left this world. 

Every day, I think about the way Dave stared at me on the last day of his life... His tears, his unsaid words. I know he would want me to defend him and protect his name and his pride. And I will always stand up to the institutions and people out there who disrespect him and his wishes. 




14 January


It's been four months since Dave left us. I'm missing him so much. Am still spending most of my day thinking of our times together and how our lives could have been different... 

I had to be away from everyone and just be alone in my thoughts. Got on the bus and headed to the centre of town. I had to be alone with Dave and walk the streets for hours... I wandered into the museum of contemporary arts, located in a solid, elegant-looking building which used to be a school when Taiwan was a Japanese colony. This is the kind of place Dave would love to visit...

There were a couple of good exhibitions. I particularly enjoyed 'Rescues in Time: Yang Mao-Lin's Journey of the Hero Within.' Yang has loved reading comic books, watching puppetry and collecting toys from a young age, and was later influenced by Italian avant-guard traditions. A lot of his works are based on his reinterpretation of history through depictions of myths and failed rebel heroes (See pictures). The fascinating characters in his comic books and novels became mythical creatures and goddesses in his creative work...They were the projections of his aspirations and became his self-discovery...

museum of contemporary arts
museum of contemporary arts
Yang Mao-Lin's clouded leopard and lillies
Yang Mao-Lin's clouded leopard and lillies

I walked another two miles to the area around North Gate. There's a distinct character about the neighbourhoods, dotted with shops selling old stamps. On the opposite side of the road stands the postal museum, another piece of Japan-era architecture. I knew Dave enjoyed the stroll, like we always did in these cute little neighbourhoods... Then I walked into a market by chance and got some taro mochi for friends and family. 

museum of contemporary arts
museum of contemporary arts
North Gate
North Gate
old stamp shops
old stamp shops
North Gate facing the postal museum
North Gate facing the postal museum

The election campaigns have been filling TV screens ever since I arrived. People are so involved in the debates. My family is split into green and blue camps like many families are (the colours representing two main political parties). But I couldn't get excited like everyone else... None of the candidates represents the kind of politics I would vote for...but I try to just listen to what people are saying. I went with Hsiaolan to a DPP rally outside the presidential house two days before the election, just to get a sense of the mood.

Everywhere I walk, every day, I'm thinking how much Dave would enjoy photographing things around us... He would enjoy the lively atmosphere across town where people of different political camps shout at one another across the streets...and he'd enjoy watching the candidates in their election campaigning vehicles pleading for votes...

I'm missing so much our adventures together...Dave's smiles and laughter, his open-mindedness, his kindness and passion, his big heart... I'm holding on to the feeling of his presence. I am holding on to the strength he's giving me... I cannot carry on without this.

DPP's election rally outside presidential house
DPP's election rally outside presidential house
supporters of People's Party before their rally
supporters of People's Party before their rally

On Dave's Day, I also took a walk by the river, remembering the times when Dave and I were here in September 2022... Especially remembering our walk here on his birthday, the 17th of September... 

Just in time for Dave's Day, I received a message from Dave Baldacci and Nelly: They visited Dave's site in the cemetery today and saw the plaque in place. They said it was well-placed and three footsteps away from Dave's resting place. They tidied things up and made the site look nice... It's so reassuring to hear from them...  

19 January


I'm spending a lot time with my parents at the moment. I try to get involved in what they do in their everyday lives. I accompanied my mother when she visited her physiotherapy clinic. I took part when the staff from health and social affairs bureaus came to assess her care needs. Her health has deteriorated since we visited last year and she now needs some support when taking a walk. I went with my parents to choose a wheelchair for my mother. She said she doesn't want to rely on it too early, but will need it when she takes a mid-distance trip with family. 

It seemed only a short while ago when she was able to walk properly... Reminds me how time flies...and how short time we might have with each other. This is why, apart from the daily chores, I'm trying to do more with them - sometimes I came up with ideas of day trips somewhere, such as to Bopiliao (in the old Manga area)... 

old street in Bopiliao
old street in Bopiliao
my mother inside local history education centre, Bopiliao
my mother inside local history education centre, Bopiliao
old film ad, Bopiliao
old film ad, Bopiliao

20 January


My parents wanted to be at home on Saturday. So I went to see Kishu An Forest of Literature in the southern part of town. The place was originally built in 1917 as part of a Japanese family's catering enterprise during the colonial era. It was one of the places where the Japanese colonials gathered socially and dined.

I didn't have a chance to take Dave there before. So I told him all about it during the visit this time... The main building is an elegant tatami exhibition room of a variety of calligraphy works. I had to buy myself a pair of socks to be able to enter (you mustn't wear shoes in there). I also enjoyed visiting the bookshop on the other side of the site. It's shelved with lots of interesting Japanese, Taiwanese and Chinese literature. 

I was glad to find the Chinese translation of Norwegian Wood (1987) by Haruki Murakami. A story about loss and death. I enjoy Murakami's beautiful prose and its emotional sensibilities... I can relate to many of his themes (I will return to this later)... I remembered chatting with Dave about the novel when I was reading it in English - he read it, too. But I haven't read it in Chinese before and somehow it brings the work closer... It's become my bedtime reading right now... 

Taking long walks is one of my ways to feel connected with Dave. Each adventure is a way to treasure and honour my memories of him. Each adventure enables me to keep him close to me...Each one is meaningful. 

I think Toru Watanabe (character in Norwegian Wood) would understand me. "Life and death are not two extreme opposites. Death exists [and makes sense] as part of living/life." 


25 January


This is the lowest I've felt in two weeks. So utterly depressed and sad. I look for things to lift me out of it... But the dark, heavy clouds above are holding me down. I'm finding it hard to breathe, most of the day... 

I bury myself in old photographs, so to find some traces of happy moments. But right now, the happy ones have been buried by our deepest sadness and desperation...

I read through my old diary and saw pages and pages of pain. The pain suffered by Dave in the past few years, and especially in August 2023. His helplessness and his loss of hope since the 7th of August, 2023, continues to break me each time I think back. My heart bleeds for the pain Dave had to go through... I'm feeling the pain he was feeling. It's never going to get better...   



29 January


Like in September 2022, Dave and I went on a family trip - this time to Daxi, an hour from Taipei. But unlike those warm mid-autumn days, we had lots of rain and cold wind during this past weekend. Wasn't a good start that my brother Yuren had a cold even before the trip... But we tried to make the best of it. The Shimen dam area was lovely and we had nice lunch in a cozy place. Then the afternoon was spent on walking around an animal farm, for the kids - but adults loved it, too. In the early evening we visited the handsome Li Teng-Fang Mansion, built in 1864. We strolled along the Daxi Old Street and had some street food in the evening. 

We all enjoyed the view from our windows in the guesthouse. Dave would have taken many photos from there (See two pictures above). These are for you, Dave!

Yuemei Constructed Wetland Ecological Park was slightly spoiled by the weather on our second day. But we made it up by visiting Sankeng and Yingge on the way back. I thought Sankeng was an interesting little village and I enjoyed seeing people taking their veg and various home-made products to sell in the market... A perfect place for Dave's photography. 

Our weekend ended with a celebratory dinner for nephew Shang Hong's birthday. He's nine now!



31 January 


The weather improved as soon as we returned to Taipei (!) and it was 25-26 degrees in the daytime today. The temperature dropped to around 18 at night. Messages from friends and family told me that it's about 9 degrees in London right now... I'm wondering how Dave's site looks now in the cemetery? Have the tulips grown? I'm coming back soon, to be near your site, Dave. 

Photo: by the river where we walked many times in September 2022


1 February


Woke up at 3am and saw a WhatsApp message from Mick and Sharon. "Kevin passed away." I had to read the message again. I find it hard to believe - he seemed well when we saw him on the 30th of November when he came to Dave's committal service. Kevin's daughters' FB posts said that he died yesterday evening. Whatever the cause, it is so shocking and sad.

I never got to know Kevin very well, even though he was an old friend of Dave's. He kept a polite distance from me. But from what I knew, Kevin was a great person. A loyal son and father, and a loyal and kind friend - to Dave especially. He went through a lot in his life, and still had the capacity to be kind and compassionate... He wrote to Dave every day during the three years of Dave's terminal illness. They chatted on the phone often - and in the last year Kevin video-called Dave every week. I was so glad that he was there for Dave...

When we said good-bye the last time on the 30th of November, Kevin promised that he will be organising a memorial walk for Dave when I come back to London in mid-February. 

It's particularly sad for me that Kevin left the world only four months after Dave... I know I shouldn't think this way but it felt as if there was something symbolic about the timing... His daughter Jess said to me on FB: "Dad and Dave must be partying up there right now!" I really don't know what to say to that. 


Photo on the right, taken by myself: Dave and Kevin by the Thames, after our lunch in Limehouse, 13 May, 2022

3 February


Sad to hear that Jonnie Irwin, A Place in the Sun presenter, has died age 50, just over a year after he went public about his cancer diagnosis. 

Irwin was diagnosed with stage-four lung cancer in late 2020. It was around the same time as Dave's diagnosis. But Irwin chose to keep his illness a secret until late 2022, for fear that he might be "written off" by his employer. And he was right to worry - Channel Four gave his job to someone else a few weeks after they knew of his diagnosis. It didn't seem to matter to them that Irwin had worked for them for 18 years.

Dave and I talked about Irwin's case many times in the past two years and felt sad for him. We were always able to relate to how he must feel under his circumstances - so alone and abandoned. Irwin continued to work after his diagnosis, for his three boys...They must be so proud of him when they grow up.   



8 February


Always lovely to hear from Antie Jean. "Do hope you are all well, and hopefully you are a lot warmer than we are," she wrote. "It's that murky dreary weather here, damp, miserable, and very windy at times. But spring is on its way, the early daffodils are full of buds and I have three in full bloom. The catkins are in the hedgerows now which always brighten my spirits. Just to see the green shoots appearing means that brighter days are getting nearer..." She went on to tell me about what she did in the past few days...

Dave used to exchange letters with her in the past three years. She was always kind and made family feel loved. In the same way, her letters to me always warm my heart.

Today is the anniversary of her husband Brian's birthday. It's been seven years and it still deeply hurts her. I completely understand how that feels... I wish her a peaceful day.

                                                       For you, Dave, my love, on your day...

                             Photo taken by myself on National University of Taiwan (NUT) campus - in a corner new to us

14 February


It's been five months since Dave left the world. I'm missing him so much - his fun-loving nature, his warmth, his embrace, and everything about him. At the same time, the memories of the last few weeks of his life remain vivid and painful.

On Dave's Day today, I read through my diary again. The memory of the 30th of August, 2023, stood out, and brought tears to my eyes. We were on the 13th floor of Royal London Hospital. It was just two weeks before Dave left this world. His conditions had worsened at the time and was becoming a little confused... He didn't always understand what the doctors were telling him...

Each time a doctor visited, Dave always wanted to make sure that I was standing near him. When there were more than a couple of them (doctors, nurses and sometimes trainees) in the room, he always asked me to stand close. I knew that it made him feel safe to have me near him...

One thing that Dave kept saying to me throughout that day was that he loves me. "I love you so much," he kept telling me. "It's going to be sorted out, it's going to be alright, I promise you." 

Dave always wanted to reassure me that everything will be alright, even in the worst possible circumstances. Our inner strengths sustained each other. For three years, I encouraged him not to think about the statistics about cancer prognosis, but try our best to live every day to the full... But on that day, the 30th of August, when he reassured me "everything will be alright," I found it hard to be strong and held back my tears so many times.

"Hold my hand," Dave asked me. We held each other's hands for hours... Many times, he fell asleep.

I treasure these moments of ours so, so much. I remember the last 14th of February we spent together. (Since I met Dave, I had followed his habit of doing something nice on Valentine's. Despite being an aeronautical engineer, Dave was a big romantic.) We had our morning session as usual, where we talked about everything and anything we wanted to talk to each other about... That morning, we exchanged presents during our coffee chat. He wrote me a loving card. Dave always wrote loving cards. He got me a pink dressing gown. I got him a surprise present which was the Cézanne exhibition at Tate Modern. We walked across the Millennium Bridge to see the exhibition that early afternoon...

Right now in Taipei, I've wanted to take Dave to see different exhibitions and different places and enjoy new experiences..

To mark this day, I have chosen one particular exhibition focused on "Bodyscape" at the NTNU (National Teachers Normal University) Art Museum. This museum is known as the museum of Taiwanese art history, dedicated to the research and preservation of the art collections of NTNU and the exploration of the social development on the island. This particular exhibition showed fifty pieces of work during the 1950s-1990s and beautifully reflected post-war artists' observations and imaginations of the outside world. 

I like particularly the painting of an angry Orchid Island (territorially part of Taiwan). The work highlights issues concerning the original inhabitants there vs the dominant Han-Chinese/Taiwanese culture and economic expropriation. 

This February is the 20th anniversary of the Morecambe Bay disaster. I exchanged messages with families in Fujian who lost their loved ones all those years ago. The orphans have grown up. Some of them have gone abroad to work and others formed their own families... People in Britain and Europe have not forgotten the loss of lives. But many have not linked the past with the present - and have not looked at the disgraceful policies today that continue to lead to the loss of lives of so many displaced people and global workers when they cross borders.

I miss the conversations I used to have with Dave about these issues... I continue to talk with him. He is one of the few who understands me. 

I found some quiet and talked with Dave every day throughout the lunar new year. It is a time when families reunite here. It's been more than two decades since I spent lunar new year with my family...and I wish Dave and I had done this before. 

I've wanted to take Dave to the mountains. On this sunny day, Dave came with me and the family on our walk to the mountain twenty minutes from my parents' place. I didn't remember it being so beautiful. Sometimes we really forget how precious things are nearby... Just like Dave's and my relationship with our neighbourhoods in the East End of London... On this day, we all enjoyed the view from the mountain top. The photos of the trees and bamboo woods here are for you, Dave.

Hold my hand, Dave... Hold on to me, my dearest. We will see things together, like always. Love you so much, always. Our adventures continue.

16 February


Last night, after hugging my parents good-bye, my mother insisted that she came downstairs to wave goodbye to me at their door. Hsiaolan and Yuren got in the taxi and went with me to Taipei train station, for me to take the subway to the airport. 

Having spent nearly two months with my family, I've seen some of their day-to-day problems close-up... My mother's health conditions, for instance. During my time in Taipei, home help was set up for her by the health authorities. She also needs to carry on with physiotherapy. It felt strange that, after becoming so involved in their lives for two months, to have to leave again... But from now I will visit often. We don't have much time anymore.   

A long trip for me after that farewell. Luckily, the weather conditions were good and the flight was comfortable. On the way from Dubai to London, I happened to find the Italian-language film L'immensita (2022) on the screen in front of me. It surprised me because it was the film I booked for Dave and I to see, just a month before he left the world. That day, he happened to be too exhausted to walk to the cinema, so we stayed in.

L'immensita got me thinking about that day with Dave. And the days that followed, where we watched many classics and TV series that Dave loved, as if to do it for the last time. One of the series that we watched a second time was Mafia Only Kills in Summer, a dark comedy about Sicilian society in the 1970s. We loved the series partly because it was filmed in all the familiar places when we lived in Palermo in 2018. We watched these films and series with such emotions, as if treasuring something that will never be experienced again. We sobbed during some of them...

Then my thoughts went through all the things that Dave has done that changed me as a person... We met each other at a low point of my life. Dave also happened to be just coming out of a low point of his life in early 2013. In many ways we lifted each other up... Dave did so literally - When he knew that I didn't like high places, he booked us tickets to go up to Shard on my birthday. He showed me how beautiful London was from that height...and I started to enjoy comparing photography with him on our visits to places. And for sure, I no longer fear visiting tall buildings!

As someone who worked with airplanes for many years, Dave tried to talk me out of my fear of flying. Before I met Dave, I always tried to avoid flying as much as I could. I used to take tranquilisers before getting on a plane and always suffered from the panic during the flight. Although I still hate flying, not least for environmental reasons, I can now get on a plane (if train travels aren't possible) without tranquilisers and total panic...

As I thought about these changes that happened to me since we met, I looked out the window and saw how high we were above clouds... I never used to be able to look out the window. My phobia prevented it. That changed when Dave left the world. My phobia becomes trivial and insignificant when I lost Dave. Nothing compares with the loss. Somehow I am able to look at my fears in the face now... "So what is the worst that can happen to me now?" I said to my fears. "The worst has already happened."  This is the way Dave changed me once again. 

Today I watched those candy floss mountains outside the airplane window, and wondered if Dave might be skiing through those cloud mountains, for fun... Not a bad fantasy, I smiled at the thought. Maybe I can do it with him when my time comes...


18 February


Good to be back in London on the 16th and walk home through the familiar streets of Whitechapel. Feeling safe to be in the house again, with Dave's ashes in the bedroom... I talked to him and strongly felt his presence. Good to be home together again, Dave. 

Yesterday I spent much of the day receiving treatment at Barts, so I wasn't able to visit the cemetery. I felt really uneasy this morning. Something was telling me that I should go over there, despite the heavy rain. Luckily, as I got myself ready, the rain stopped.

I felt apprehensive during the underground train trip there. What's happening to the site - have the flowers grown? Does everything look OK? When I got there, I was really disappointed to find that there was no flowers - no sunflowers, no tulips. Nothing. Have the squirrels got them? or maybe I just didn't do it right? or will it take a little longer? Tulips should blossom soon, latest in March...

I placed the new yellow and pink roses in a pot in front of Dave's new plaque. I didn't like it that his plaque was right next to other people's...as if in a crowded room. But there's nothing I could do about that now... Ideally I would have preferred Dave's ashes to be buried under a tree and his plaque to be on its own... but apparently there was no space available (all the trees are full!).  

I looked for the piece of soft earth on the land where Dave's ashes were buried - I think it would be easy for anyone to not find it, as it was already covered with a thin layer of grass... The point of planting the flowers was to mark the site and make it stand out. I said to Dave that I will bring more seeds and try planting the flowers again. I promised him that the site will look lovely again...


19 February


Had chest tightness and pain again this morning. Been like this a dozen times in Taipei, and now back in London, the problem hasn't gone away. I decided not to call the GP but 111. Turned out to be the right thing to do. They advised me to go to the A&E at RLH, which I did. There, I was given various tests and X-ray. The doctor believed that I have angina - Not totally surprised, as I've been researching online and guessed it might be that. Still waiting for a CT scan to confirm the diagnosis. It's not good news, but looking on the bright side, it could be a lot worse! The doctor talked me through the factors that might have contributed to it, stress being one of them. 

Sure enough, I hear my old friend saying, "You need to manage your anger!"  


   Photo: Carrying on with our habit and taking a five-mile morning walk from Whitechapel to Waterloo... 

24 February


Thinking of Kevin, Dave's old friend who died recently. I remember the first time Dave introduced me to him when we went to meet him in Aldgate East in 2013. He was friendly and approachable. He and Dave always chatted about the old days for the whole evening until Kevin had to catch the train back to the midlands. They never seemed to run out of things to say to each other...

Kevin didn't walk away when Dave became ill. He wrote to Dave every day - sometimes just two or three paragraphs, but always something... He wrote about his daily life and random thoughts about anything... They exchanged a lot of humour. I always thought that was how "boys" like them communicated - they don't talk too openly about emotions but banter and tease each other all the time... 

Kevin often sent us pictures of his beloved cat Lottie, and sometimes pics of the neighbourhood cat that chased after Lottie. (See photos.) We enjoyed those pictures and stories... I really appreciate his lasting friendship with Dave. Rest in peace, Kevin. I really hope that his family - his two daughters and parents - whom he loved so much will find peace. 


25 February


Took an early morning walk to a garden centre near Columbia Road Market, to see if I could find some flower seeds for Dave's site in the cemetery. Centre was shut, but the market was lively and full of people. Happy people strolling, listening to buskers and flower shopping... No market vendors had any seeds to sell! I noted down the phone number on the garden centre door and walked home.

It was one of those "low" days. I decided to go see a film. Perfect timing - Wim Wender's Perfect Days is in UK cinemas now. I went to a midday screening. Thoroughly enjoyed Koji Yakusho's brilliant performance as Hirayama, a Tokyo public toilet cleaner.
Hirayama lives a life of an invisible worker at the bottom of society. But he lives the Groundhog Day monotony with sensitivity and dignity. He sees the world with his heart...and nothing and no one is invisible to him. Such as homelessness, which he observes around him when society chooses to ignore and pretend it's not there... 

Hirayama seeks happiness where he can, within his own means... With a small traditional (non-digital) camera he carries with him in his pocket, he captures things that catch his eyes in his daily life...such as sunlight leaking through trees (komorebi, 木漏れ日)...

As one reviewer puts it, this happiness "is an elusive ideal that is inextricably tied to sadness, loss, regret and pain, but something that's still very much worth striving for."

Hirayama experiences social prejudices against him as a janitor, and has to work overtime when a colleague quits his job and no one has been sent in to cover his duties. He resists quietly what is thrown at him in his life... His focus on small pleasures seems to be his way of coping with (and rebelling against) the alienating world around him. Does the lack of dialogue during two thirds of the film indicate that quiet resistance as well? 

Every day when Hirayama drives through the city to work in the early morning, he would stubbornly put on his old cassette tapes, of 60s and 70s music. He treasures these old cassettes (and refused to sell them to a shop at a good price when prompted by a colleague)... For Hirayama, these things are not for sale.

My favourite ones are Pale Blue Eyes (Velvet Underground), Sitting on the Dock of the Bay (Ottis Redding), Brown Eyed Girl (Van Morrison), Aoi Sakana (Sanchiko Kanenobu), Feeling Good (Nina Simone), and of course, Perfect Day (Lou Reed). Here's a nice edit of the film with Pale Blue Eyes. These are all Dave's favourite songs, too. Do you ever get the feeling that a film is made for you? 



29 February


Got up early and went to the cemetery. I brought with me a cactus, Dave's favourite plant, to place it at his site (above where his ashes are buried). This way, we'll always be able to see/find the site. (His plaque is a couple of feet away.)

The rain stopped when I got there. The wet soil made it easier for me to plant some rose seeds. I do hope they'll grow... 

"Let's come back here on Sunday," I said to Dave. It will be dry and sunny, hopefully.  




2 March


You and I are like these inseparable shadows...forever holding on to each other. Or, in your words, like "twins!" 

Even after the 14th of September 2023, you are always there, guiding and guarding me...just like you said you would.  

But how I wish I could see your loving face and hear your kind voice again! How I wish I could embrace you and feel your warmth next to me... How I wish you could let me do that, even for just one minute.

in Oslo, our last trip together, June 2023
in Oslo, our last trip together, June 2023

3 March


A sunny Sunday. Got up early and went to the cemetery. A few more people than usual. And it's nice to see our squirrel friend running around Dave's site!

I brought some lilies and they looked beautiful in front of Dave's plaque. Then I planted some sunflower seeds around the cactus (above Dave's ashes). I made sure each seed was 3cm deep and around 8cm apart. I got two bags of seeds from a shop on Columbia Road two days ago - the shopkeeper told me that March is OK for planting, although April-May is even better. So I'll plant the second lot in April. 

Walked around the cemetery for a longer time as the sun was shining... I rarely heard groups of visitors chatting, like today. Strange - and nice - to feel there's company around! Dave enjoyed the stroll and I knew he was content with the way his site looked today...

5 March


So glad to hear from Melissa. She has organised a photography exhibition for her father Larry Herman, who passed away on the 29th of December, 2021. 

Larry spent years working on his project photographing women factory workers in Bangladesh. As a social documentary photographer, Larry was always committed to putting working conditions under the spotlight, particularly workers in the Global South. 

This is a brilliant way to remember Larry! We all miss him and his photography... And how nice it is to have his work exhibited in the middle of the East End where he lived. Please come to the Brady Arts Centre and see/hear all about Larry's work. 

6 March


This morning, I travelled with Dave's brother Michael to Solihull for Kevin's funeral. Kevin was Dave's old friend - a loyal, kind, and really supportive friend. And as I learned today, he was loyal, kind and supportive to many people around him in his community and his town. The service was so well attended and the tributes were heart-felt. So lovely to see Kevin loved by so many...

His favourite music was playing, making his absence even more real... Only today I knew that Heroes Never Die by Mostly Autumn was one of the songs he loved...

This is a beautiful tribute from his daughters Leanne and Jess, the centre of Kevin's life:

"Well… what a dad we had! Truly, truly, without a doubt the best to ever do it. We could talk forever about him but we don't have long so we'll keep this brief. But he wasn't just a dad, he was everything to us… a carer, a chef, a roadie, an A-Z, a teacher, a counsellor and Jane McDonald's second biggest cheerleader!!! We could go on… but all of this wrapped up in the funniest, most generous man you will ever meet. How did we get so lucky?!It's hard to wrap our heads around going on without him but we know he'll be with us wherever we go so we intend to take him to some good places!! We love you dad and could never thank you enough for everything you've done for us. We hope you're enjoying the free bar up there and the buttery toast!! We also hope you've found heaven's stationary cupboard with unlimited pens!! And let's not forget that you'll now be getting told off by our mum!! Why break a habit of a lifetime?! Don't worry, she'll forgive you in a minute! As she always told you, you were a very naughty man but you had a friendly face!! That usually got you out of trouble!!! Anyway, remember dad, heroes never die. You'll be ours forever."

I met Kevin's parents David and Eileen. Such a lovely couple. We had written to each other many times in the past three years when they gave lots of kindness to Dave and myself. It saddened me to see them doing their best to look strong, standing at the entrance of the Methodist church to talk with more than a hundred people who attended the service... How heartbroken they must be to lose Kevin... Words couldn't describe my sadness for them. I just wanted to give them many, many hugs...

We also met Kevin's brother Michael. I remember him from all the photos of them when they were children: Dave and Kevin, and two Michaels. The two families knew each other well back in Essex, until David and Eileen decided to move away. Kevin's brother Michael was very kind to tell me that Kevin enjoyed coming down to London and seeing us in the past few years... At the time we thought that Kevin had recovered from his major illness back in 2019. He didn't seem aware of a new health problem. If only we knew, Dave would have given him the support that he so kindly gave Dave. 

A great person, much loved. Heroes never die, Kevin! 


8 March


Went to see Perfect Days for the second time. I wanted to see the details of komorebi (木漏れ日), i.e. sunlight filtering through trees. Komorebi always gives me brief moments of joy and peace. It is something that moves me, not only in the film but in our everyday lives. Dave and I used to look for these little traces of beauty, and take snapshots of the natural landscape around us...Dave has particularly developed the habit of capturing scenes and movements in our surroundings... Snapshots which would most likely to be dismissed by professional photographers but brought us much pleasure.  

Komorebi is a major visual metaphor in Perfect Days... Hirayama is forever looking for it all around him, and when he finds it, he always feels uplifted by it...

Throughout the film, I see the constant connection between the play of sunlight and shadows and Hirayama's emotional state... This has been beautifully displayed by Wim Wenders.

Komorebi symbolises those fleeting, beautiful moments in life. Instead of waiting for a promised land at the end of the tunnel, it is the here and now that we so eagerly try to capture in our everyday life... It is a metaphor for hope leaking through darkness...or even a symbol for change (in Hirayama's very routinised, seemingly uninspiring life dominated by under-rewarded manual work)... Rather than acceptance of one's destiny, komorebi is a symbol of transcendence, the capacity to move beyond the limitations of our realities. 


9 March


I carried a full rucksack with me - a bagel, dried apricots and a book on Why the NHS is Being Betrayed - as I got on the underground to go to Upminster. It's a bright sunny day, perfect day for visiting the cemetery. When I got there, I walked from Upminster station to Corbets Tey, past a florist, where I got a mixture of nice flowers for Dave's site.

It was lovely to walk in the sun, and I talked with Dave all the way there... I'm getting to know Upminster better now...People seem to talk and behave in such a different way in these suburbs - another world from our neighbourhoods in Whitechapel.

The cemetery had many more visitors today. Suddenly it's filled with beautiful flowers every corner... I walked up to Dave's plaque. The lilies from last week were still lovely, half of them haven't yet bloomed.. I added the bunch of flowers today. So many of them that I had to divide them into two flower holders. They look beautiful in the sun!

Loved walking around the place. There are some really lovely trees that have been turned into burial sites, with windchimes on them... People were nearby and chatting around me; the sunshine brought them to visit their loved ones. "Isn't it funny that we find more company here in the cemetery than in the outside world," I whispered to Dave.




14 March


Dear Dave

It's been six months since you left this world. Six months. The longest we've ever been physically parted... It feels as raw as if you left a week ago. How I've been missing you, Dave!

For six months I've lived with the belief that you are still here with me, spiritually. Believing in you and your presence is the way I carry on... You've found ways to let me know that you're here, sometimes in a playful way...

In the past two nights, you made me hear sounds like a chord on my guitar. I couldn't believe my ears, until you did it again, and again. I followed the sounds and found a bedside lamp we used before; it used to make a similar sound... But the lamp was uncharged for a long time and there was no trace of electricity inside... I believe that you want to be with me for your sixth month anniversary. You know how important it is for me and I've got things all planned for us to do... You want to let me know, without a doubt, that you are here with me.

You must have seen how I've spent the last six months, Dave. You must have seen how those painful memories of your suffering, especially last August and September, remain so vivid for me and I still cry myself to sleep thinking about them...

For the first four months of your departure, I continued to send messages to you on WhatsApp...Your last few messages broke me each time I read them. One of them was you asking me to bring a few things to the hospital in the morning... Since your mobile phone was stopped by the company, your profile picture disappeared from your WhatsApp account and I could no longer feel that you were there reading messages anymore... In the past two months I started using your WhatsApp page for saving pictures I took on the 14th of each month.

Every day, I read pages of my diaries and notes about you and looked through our photographs. Our three-year fight against this disease may be history for many around me but remains at the centre of my consciousness every single day, as you can see... Our struggle is not memories to be packed away and put away...You are my love, my comrade... We fought this ugly world together. I live with memories of our struggle and cherish them and will do so for the rest of my life.

And as you know, those memories of our beautiful years before the illness and the pandemic are forever treasured...They are the source of my strength and always will be.

My dearest Dave, I carry on talking to you every day because I don't know how not to. I feel safe when I talk to you. You're my rock (You said that about me, and that is what you are to me). Talking to you is the only way I'm able to start my day every morning. I feel good when we take walks together. I feel your presence. I know you're here to keep me sane and guide me...

Two days ago, you and I went together to our local Young V&A, for old times' sake.. I love looking at the toys you love... The polar bears. And look how cute this orange bear is (See picture above) - it belonged to a boy in England in 1935-36. And there's the Toy Story characters - I remember how those stories made tears well up in your eyes, from part I to III!

I showed you the Manga Exhibition upstairs as well. I knew it would please you! It was certainly a visual treat for both of us. I saw some of my childhood stories and animations there. Look at these cute little "twins" (See picture) - they're not twins really, but Cowherder and the Weaver Princess, a favourite romantic folk tale in East Asia. Despite their love for each other, their romance was forbidden and they were banished to the opposite sides of the Milky Way...and could only meet each other once a year, on the seventh day of the seventh lunar month. Today, this folk tale is often celebrated in festivities, especially among the young. How cute they are, and how could they be separated!

Went to Bethnal Green Park to look for our squirrel friends on several occasions in the past few days. Always emotional to be in the park...This is like our backyard - we used to come here almost every day on our way to Vicky Park. Do you remember that you used to compared our squirrel friends in Bethnal Green park and those in Vicky Park...They were different in character. You said the Bethnal Green squirrels were down-trodden and more friendly and are never scared of people, unlike the posh squirrels in Vicky Park. They always came up to us, even when we didn't always carry enough nuts with us! There were many of them around in 2021 and 2022...

I've no idea why there are so few of them now. Where have they gone? Only three of them showed up that day and I spoilt them with a big variety of peanuts, cashews, hazelnuts, etc...They loved the treat. They buried some of the nuts for later!

A bit further up the road, you and I went to see Palestinian artist Malak Mattar's work at Rich Mix. I feel that it's important we support artists like her. You went on demonstrations for Palestine with me several times in the past ten years and I knew you would like to see this. Malak Mattar's work is part of the Arab Women Artists Now (AWAN) FestivalShe exhibited in London before


See Malak Mattar's work:

This morning, you and I set out early at 8:30am and walked from Whitechapel to Tate Modern, through all our familiar routes once again. It was beautiful to see the river from Millennium Bridge again! We enjoyed Yoko Ono's show, an overview of her works on music and peace. I think you liked the message I wrote for you, Dave, on Yoko Ono's wish tree. (See photo below.) The sun was shining on our walk back... I felt I was embracing it with you!

In the past six months, there are people who have never forgotten you, Dave, and people who have shown so much care for memories with you... I'm grateful to them. Our cousin Sarah has so many fond memories of you and often talked about you...She's been so kind to me. So is auntie Jean. You are always, always remembered and loved by this loving family, I think you know that... And of course your old friends, like Dave and Nelly. They visited your site at the cemetery in the winter and were so kind to try to make it look nice. They think of you a lot.

Very sadly, we have lost your old friend Kevin recently. The loss is really symbolic for me, as Kevin was there writing and talking with you throughout your illness. I cannot help thinking that there's a lot of injustice hidden behind Kevin's sudden departure... much to do with the NHS that is failing so many people so terribly! 

My dearest Dave, my beautiful one, if only time could rewind, things would be so different... We would have fixed so many things that the NHS didn't fix for us. If only we could change the world. But I promise you, Dave, I will turn my deep sadness and anger into action - action that hopefully will help others. Watch this space.



20 March


I came back to Taipei to celebrate my brother Yuren's 50th birthday with everyone. I hadn't been at either of my sibling's birthdays for thirty years...I want to do it as often as I can, because I don't know how long I've got... 

It was really lovely to celebrate Yuren's birthday this evening with the whole family at an Italian restaurant. My sister Hsiaolan organised the booking perfectly. Great to see everyone talking and enjoying each other's company - and enjoying the cuisine, especially the sweet apple pizza they invented here! I know you enjoyed it, Dave!

It's also Nowruz (Noruz) today, the new year celebrated by my Uyghur friends as well as over 300 million people globally. It marks the arrival of spring and rejuvenation. A special day.



24 March


At a very low point on Friday night. It hit me without any notice, like every time. But this time it felt more like a panic attack. Thinking about Dave and crying in bed the whole evening. Had to tell my parents that I was too tired to get up to have dinner with them. I felt that nothing would save me from the pointlessness of my life...

I felt exhausted the following morning but went on the family trip as planned, to Changhua in the central part of the island. Dave was with me, as always. I could feel his enthusiasm about the trip...On each of our train trip in Taiwan, he was fascinated with the rural landscape outside the windows... 

This was a special "educational" trip for my nephews and a hometown visit for my father who was brought up in the small towns in Changhua county. We went to see Beidou High School where he went to school, and saw that it was turned into a vocational college. We visited Lu Feng Elementary School where my grandfather worked as the headmaster. Grandfather was raised and educated under the Japanese rule and worked hard to become a headmaster for most of his career. We saw the dormitory where my father used to live with his parents and siblings...It's amazing that their derelict house and courtyard remain there while everything around it was gone. 

We also went to see Nan Guo Elementary School, where my grandparents both worked (grandmother as a teacher and grandfather as a headmaster). My parents sent me to live with my grandparents for a year when I was five, and they put me in a class with six-year-old kids. There, I developed some kind of (selective) mutism where I couldn't speak a word... Grandparents didn't know what was wrong with me at the time. They were just worried but didn't know what to do. A kind teacher tried her best to help me and encouraged me to talk...

When I finally became able to utter a few words, the teacher was surprised by what I said sometimes. One day, she told the kids not to drink their soup with any noise. I raised my hand and said in class: "But my granddad did, with a lot of noise."

I couldn't recognise much of the school now, neither could my sister who was also sent there later, for a few months. The only vague memory was of the playground where the teacher used to talk to me privately about my inability to speak...

We also visited Jianbao Street where my grandparents lived some five decades ago. I had fond memories of my time with them. Grandmother used to make sure I practice my violin at home and send me to a violin teacher every week. Grandma looked after me well... Their neighbourhoods have changed beyond recognition. The surrounding fields were all gone. Where is that country lane I walked on the way to school every day? This is now a busy residential area. There's no resemblance. No trace of the past.