This space was created in June 2022 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. 

In the past few years 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.

This time 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. One of these friends was Larry Herman, a good person and a brilliant photographer whom I didn't see throughout most of 2021 because of Covid, until our last coffee together that December. Larry talked about organising dinner parties and looked forward to doing work again when the pandemic was over. Very sadly, he passed away, a few days after Christmas.

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 past few years (since 2020) in the East End, 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. We're fighting on. 

2020-21

July 2020

Covid-19 conceals deepening privatisation of the NHS

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.

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.

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...

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 

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

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 

12 July

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. 

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 two 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.

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

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...

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.

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. Dave celebrated his birthday with my family (my parents, sister, brother, sister-in-law and my two nephews). Then we had a beautiful few days in sunny Kenting in the south of the island, where we celebrated my parents' birthdays...

Autumn, back in London...

November 

Two years after Dave's diagnosis, there are fewer and fewer treatment options remaining... A recent blood test showed that he has various tumour DNA mutations 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, but has to resort to using a less good option which will give him various strong side effects such as neuropathy... In the next two weeks we'll be doing research to find out what more we can do apart from ice gloves (see picture below) and socks that may help reduce neuropathy symptoms in the hands and feet...

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...

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.  

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 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. 

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…

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. 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 on the 8th of September. By then, he could barely get out of bed.

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. Apart from his daily meds, he was given a syringe pump filled with morphine and midazolam in the latter part of the week. He woke up less and less.