June 2022
In the past two 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 white 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 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 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.
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. 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...
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 our lives, we've tried to seek help from various professionals. Dave had phone counselling for six weeks. However, when I walked into one of the charities near Barts hoping to join a support group or simply talk to someone, the predominately white staff and their way of dealing with me discouraged me from visiting again.
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 particularly 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's brother, Michael, and his cousins are in constant contact, so is my 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 - and our 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 also people 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'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 were also a few people who vanished from my life soon after the our illnesses were revealed to them. One of them is someone I didn't see very often but considered an old friend. She disappeared throughout the time when I needed support the most... I understood that talking about cancer made her uncomfortable and cramped her style somehow... Then I discovered from the wider world of cancer patients that "cancer ghosting" is actually a thing!
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...
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."
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...
Late April
Dave's been feeling better this week, with the help of ample steroids. And spring is arriving, at long last...
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...
