The strangest thing about having an incurable illness during a time of pandemic is the weird but unavoidable sense that everyone has finally caught up with you. As people started talking about how worried they were, how they couldn’t stop thinking about the virus, how difficult life now seemed, how isolated, the temptation to say: “Hey guys, welcome to my world” was overwhelming.
This had never felt more pertinent than last month, when social media lit up with Breast Cancer Awareness memes and pink ribbons and talk of fighting and beating the disease. For those of us with stage IV cancer such messages seem beamed in from another planet. As the campaign group MetUpUK points out, 31 people die every day from metastatic breast cancer, and countless more of us live each day with a disease that has a median survival rate of two to three years – a rate that drops considerably if you have a cancer that began as a triple negative breast cancer, as mine did. Yet our stories, which might force people to face the uncomfortable truth that we are not “winning” the “fight”, are rarely told.
The thing about living with stage IV cancer is that it’s ever-present. You can be doing the most mundane of tasks – cooking dinner, chatting to your children or lying on the sofa reading a great book – and suddenly the unwelcome thought will pop into your mind: “Oh I have an incurable disease and one day it’s going to kill me.” These thoughts are at their strongest during situations such as the last lockdown and, now, the current one.
When the first lockdown was introduced I read the government’s guidelines and looked at their ratings chart of vulnerable people, only to discover that because I had an incurable cancer and was being treated with intravenous chemotherapy I was rated a nine – that is the most vulnerable category.
This seemed monumentally unfair. I had a job. I walked my dog. I met my children after school and cooked dinner and occasionally even managed to overcome my tendencies towards antisocial behaviour by actually going out and meeting people for coffee and dinner and drinks.
Yet according to the guidelines I was more at risk than people who needed a full-time carer or had an underlying condition that made them particularly vulnerable to Covid. And because of that I was supposed to isolate myself from my family, to spend my time in the bedroom attic having my food dropped outside and occasionally opening a window to ensure a breath of fresh air.
Much as I have long entertained fantasies of becoming Miss Havisham and sitting in a rocking chair declaring doom to all who visit, these measures seemed something of a step too far. For a start they coincided with my cancer failing to respond to the oral chemo that had kept it under control for the previous few months, a fact that meant I would have to leave the house if only to get my IV chemo treatment. In addition to this an unpleasant new development meant that I would also require regular hospital visits to treat ascites, a build-up of fluid in my stomach that can occur in patients with advanced liver cancer.
So I formed my own plan. For much of lockdown I did stay in the house, unless I had hospital treatment, but I also hung out with my family, sat in the garden, continued to work and occasionally, on the advice of my oncologist, took the dog for a short walk on the hill near our house. This time round, when the government advice is less stringent, I shall continue to be cautious while trying to fit in some exercise and live a semblance of normality.
I am lucky in more ways than one. Lucky that my home is way out in west London’s suburban zone 4, which means that we have a decent garden and plenty of open space nearby. Lucky that the cancer is in my liver, which has largely allowed me to continue to lead a relatively normal, mostly pain-free life and, most of all, lucky that I continued to receive treatment during this time.
One of the biggest non-Covid issues to arise during the pandemic has been the way in which it has affected cancer patients. People have had their treatment paused or, in some cases, frightened of contracting the virus, chosen to pause it themselves.
Procedures have been delayed and even halted. People have ignored lumps or other warning signs, more terrified of Covid than of cancer. There are reports of primary cancers spreading because they weren’t caught in time and secondary cancers progressing at a faster rate because the treatment wasn’t available to keep the disease in check.
In May, Steven McIntosh, the policy director for the leading cancer charity Macmillan Cancer Support, told the Guardian that there had been “a very worrying drop in the number of people coming forward with suspected cancer symptoms to be referred for diagnosis by their GPs,” adding that “as many as 1,900 cases of cancer a week are currently going undiagnosed”. The same Guardian report also featured a study from the Institute of Cancer Research in London which suggested that “putting off cancer surgeries for three months could lead to almost 5,000 deaths in England alone”.
In July, a report in the Lancet concluded that “substantial increases in the number of avoidable cancer deaths in England are to be expected as a result of diagnostic delays due to the Covid-19 pandemic in the UK.”
Nor were Macmillan and the Lancet the only ones to be concerned. An August report in the Observer highlighted the huge impact that Covid-19 had had on medical research programmes throughout the UK, noting that “more than 1,500 clinical trials of new drugs and treatments for cancers, heart disease and other serious illnesses have been permanently closed down in Britain in the wake of the Covid-19 pandemic”.
Meanwhile, cancer charities have been increasingly vocal about the ways in which the funding cuts are affecting them and a leading cancer hospital, the Royal Marsden, recently launched a Covid-19 appeal asking for donations to help “fund a series of research trials that aim to build on our knowledge of Covid-19 and how the diagnosis, treatment and care of cancer patients can be best managed alongside it”.
Over the past few months I have heard countless stories of how bad things had become. My oncologist told me that she’d had patients stop treatment because they were terrified of catching the virus and felt they should stay in and self-isolate until the danger had passed. Nurses at my treatment centre talked of a fall in patients – and then once the lockdown eased over the summer of an influx of people presenting with worse symptoms than they might otherwise have had, and in considerable pain.
It’s here that I have to hold up my hand and admit that the reason my treatment continued uninterrupted was entirely because of my husband, Kris. Not because he made life easier, drove me to appointments and kept both the feral children and our undisciplined dog happy during my lengthy hospital stays (although he did do all of those things), but because he happened to work in a job that came with private health care attached.
When the pandemic arrived it became obvious that receiving my usual treatment at a busy west London hospital would not be possible. They expected to be overrun with Covid patients and were repurposing beds. Cancer patients were advised to avoid coming in if they could possibly do so. At the same time my treatment was becoming more complicated. Where once my oncologist had envisaged me riding out the pandemic at home with a supply of oral chemo and the odd injection to boost my white blood cells, it was now clear that this would not be possible.
The two main options were to transfer to the Royal Marsden, which meant that I would lose her as an oncologist and have to build a relationship with someone new, or utilise Kris’s work-related health care and be treated privately. I am very fond of my oncologist, a pragmatic pessimist who has largely kept me sane over the past three years from first diagnosis in my breast through my cancer’s sudden spread to the liver, so I chose to stay with her and go private.
I understand that there are some people who will find this decision wrong – and I did struggle with it – but if I’m honest, I would add that when you have a disease where the median life expectancy is 11 months after metastasis and you have somehow miraculously made it to 28 months, then you’ll pretty much grab at any option that might help you to stay alive.
Even then it wasn’t always easy. I have been hospitalised seven times over the course of the past nine months, and because of Covid no visitors were allowed to see me, something I found particularly hard during the first admission when I had neutropenic sepsis and acute ascites and spent Easter lying in a bed being given IV antibiotics and blood transfusions.
That experience sharply mirrored those of many cancer patients during the pandemic. While the headlines have, understandably, been all about the awful experiences of those who have had to give birth alone because of Covid, it is hard to describe how very lonely it feels to lie in a hospital bed with only the disease that will kill you for company.
I am not alone in experiencing that loneliness, of course. As the lockdown continued I spoke both online and on the phone to friends and acquaintances and those who I barely knew about their experiences of the pandemic, the loneliness they felt, the connections they missed, the desire they had simply to go out and talk to other people. They wanted to laugh and cry, drink and dance, to go on holidays, watch films and plays, go to concerts.
As I realised when I lay in my hospital bed, the desire for connection is at its strongest just after it has been taken away – and it is this that makes so many people dread this new lockdown. The day it was announced my social media stream was full of people wondering how and if they could really cope with going through it all again.
My own situation remains slightly different. My disease still lives with me, a dark shadow stalking my every move, but it is also the case that it is held in place for now. It is responding to the chemo and thus allowing me to enjoy the ordinary pleasures of our current life: the small joys of opening a new book or discovering a great TV show or singing loudly to a song you love. The evenings spent laughing uncontrollably with Kris and the kids as they mock me for my dramatic proclamations of imminent death and the visits from friends and family (squeezed in before lockdown) filled with old jokes and new stories and a remembrance of everything we shared.
Like everyone, there are some things I still miss. Going to the cinema or theatre remains little more than a tantalising dream and I yearn to sit in a Greek taverna watching the sun set or swimming in the warming waters of the Mediterranean sea.
Behind those dreams is the ever-present, fear-filled thrum, the beat in your head that says: “Will I ever do this again? Will life be normal? Or will we forever live in this half-world, remembering the paradise we once had and dreaming of its return?”
So many of those I have spoken to over the past nine months have expressed those fears or similar. I am not a scientist or an expert in anything and I cannot smile and say that this too will pass. What I am is someone who lives with an ever-present reminder of death and the knowledge that at some point, possibly quite soon, the disease I have will kill me.
It is from the depths of that knowledge that I offer the only piece of advice I can honestly give: even in these depressing times try to find some part of the day that is worth relishing whether it is a moment of beauty half-glimpsed outside, the joy found in escaping into a different world on page or screen, or the pleasure of dressing up for yourself and no one else because it makes you feel fine.
The worst thing that you can do is wish your life away thinking of what might have been. Instead and no matter how hard or how impossible it might seem, try to enjoy at least one moment. None of us, in these most testing of times, know when it might be our last.