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. 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.

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…"


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



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...

The walk home from the hospital after visiting hours was the start of my feelings of depression and hopelessness every night... And for Dave, alone in his side room, the indignities of Colitis felt like "yet another kick in the teeth" as he put it...

Dave wanted to come home for the Easter weekend, but that didn't happen until Sunday afternoon. Chocolate Easter bunnies and treats were brought to the hospital for the brilliant nurses and that lifted everyone's mood... 

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...

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...