1639

It’s often said that people always remember where they were when John F Kennedy was assassinated, such was the significance of his death and the shock with which the news of it was greeted. I wasn’t around that day, but an event of equal significance in my own life, etched on my memory in a similar way, is the death of my mother, which took me completely by surprise, despite the fact that she was terminally ill, and turned my life upside down in the space of roughly five minutes on a sunny morning in Summer 2016. As well as providing a source of bittersweet relief that her illness was finally over, her death marked the start of a new chapter in my life, providing an opportunity to reflect on her as a person as well as a mother. Joni Mitchell expressed it perfectly in her song Big Yellow Taxi when she famously sang “Don’t it always seem to go, That you don’t know what you’ve got ’til it’s gone”. Needless to say, she wasn’t just singing about paradise and parking lots.

The first indication I received that my mum might be seriously ill was in 2010, when we were sitting in the bar of a hotel in Budapest, where we were staying for the weekend, having decided one evening to have a drink and a snack there rather than go out for dinner, as neither of us was feeling particularly hungry. It will probably come as no surprise to you to read that my lack of appetite was due to a rather large slice of cake served with cream that I had eaten earlier that afternoon. My mum’s lack of appetite, on the other hand, was probably an early symptom; one of the things causing ovarian cancer to be referred to as the silent killer, often overlooked or discounted as “women’s things” until it’s reached quite an advanced stage.

At that time I was blissfully ignorant of cancer generally, and ovarian cancer in particular. Moreover, I have to confess that gynaecological stuff is way more of a mystery to me than it is to the least informed straight man. That said, I received a pretty rude awakening and now know more about the disease than I care to mention, the first fact being that it isn’t a single disease at all, but rather an umbrella term for a number of separate diseases of varying degrees of aggression, all sharing a disturbing capacity to hide unnoticed until often it’s too late.

My mum mentioned that she had been to see the doctor. She’d been feeling discomfort for some time and had gone to the local surgery once or twice already, each time being reassured that it was probably nothing serious, even that she might be badly constipated. I remember her mentioning the term “impacted faeces” as I was eating a spoonful of goulash; her timing was perfect. I remember sniggering to myself, thinking this was the moment when I would be reassured that nothing serious was wrong with her. Instead, she went on to say that when she got home she would be having some tests and I could tell she was putting on a brave face. We changed the subject, I bought another round, and the evening moved on.

I called her a couple of weeks later once she’d had the tests and was waiting for the results. She mentioned that one of the tests was something called a CA125. Given that she used to work as a lab technician at Doncaster Royal Infirmary, I was accustomed to her using odd terms that I didn’t understand, but when she went on to explain that the CA125 is a test often used to detect ovarian cancer, my stomach dropped and I was lost for words beyond meaningless platitudes. My mum’s voice didn’t even wobble as she talked to me; as usual, she was being strong for my benefit. Until then, I’d always relied on her as a source of strength and reassurance whenever I was feeling vulnerable and I didn’t have much, if any, experience of the reverse situation.

When the test results came through, they confirmed that there was a significantly elevated level of the CA125 protein in her blood, and cancer was diagnosed. At that point I reflected on my willingness to stick my head in the sand when unpalatable truths presented themselves, as well as my tendency to focus on myself before thinking of others. It was time to start supporting my mum.

I went up to Doncaster shortly afterwards for the weekend. A close friend of mine who had been successfully treated for ovarian cancer had already explained to me that my mum would be booked in for an exploratory operation to “stage” the cancer and remove as much of the tumour as possible in advance of chemotherapy. She’d also explained the types of chemotherapy that would be offered, so I had all sorts of unpleasant images in my mind as I got on the train. Nothing, however, prepared me for the shock of seeing how much weight my mum had lost, and how swollen her abdomen had become, in the space of a few weeks. This was my introduction to two particularly nasty aspects of ovarian cancer: ascites or the build-up of abdominal fluid often associated with the presence of cancer cells; and the inability to eat any more than a tiny amount of food without feeling full, and in extreme cases being violently sick. The following day my mum managed half a teaspoon of yogurt for lunch before making a swift exit to go to the downstairs loo. I dread to think how many times that must have happened.

Given how much fluid appeared to have formed and how much weight my mum had lost, it was decided to bring the operation forward so that the fluid could be drained. For some reason, the standard procedure is to drain it during the operation and it was pretty clear that at my mum’s rate of production they needed to act faster than they had initially thought. The day of the operation arrived, ovarian cancer was formally diagnosed and announced as being advanced stage 3 (meaning it had spread from the ovary to the abdominal cavity, but hadn’t “metastasized” or spread to other parts of her body), and nearly 4 litres of fluid were removed, in other words not far off a gallon of the stuff. Chemotherapy was booked to start a few weeks later.

My mum made a good recovery from the operation, her appetite returned, and food became a source of pleasure for her once again. She opted for the less aggressive chemotherapy which doesn’t involve hair loss, and isn’t considered to be significantly less effective than the truly evil cocktail which my friend had. She responded well to treatment and enjoyed a very good quality of life throughout, the side effects mercifully consisting of extreme tiredness and a tingling sensation in her hands and feet after each dose. Before long she was pretty much back to normal, albeit with one very important difference. She wasn’t in remission, meaning it was only a matter of time before the cancer came back.

As I started to get used to life with a mother who was incurably, but not terminally, ill, I realised that a new normality had established itself. The focus now was on illness as something to be managed, rather than cured at all costs. Viewing it in that way also meant that looking to the future wasn’t just a question of putting on a brave face and waiting for the inevitable. My mum was alive and well, but wasn’t going to live forever, and whenever she died would be too soon. In that sense not much had changed. Most importantly, however, I stopped taking her for granted and started to focus on making the most of whatever time was left. At that stage, the balance between quality and quantity of life was such that any deterioration in her quality of life caused by further treatment was considered to be an acceptable price to pay in the hope of keeping her alive for as long as possible. Life continued fairly uneventfully on that basis for the next five years.

The first inkling I had that things were about to change was in December 2015. My parents had come down to London to stay with my aunt and uncle for Christmas and I was sitting on the sofa with my mum before dinner one night. She mentioned that she’d been feeling uncomfortable, but thought it was probably nothing. Initially I thought nothing of it as I’d got used to her having false alarms, but when she went to the loo later on and then came back rather quietly, I sensed that something wasn’t quite right. I caught her eye and gave her a look to indicate that I’d noticed. Nothing further was said. The next day she said she was fine.

After Christmas, it started to become apparent that things were far from fine. Nick and I went up to Doncaster for Mother’s Day and it was noticeable that my mum’s appetite wasn’t what it had been. Not long afterwards, she went for a check-up and the conclusion was that the cancer was back on the move. Initially my mum had been told that she could have more of the same chemotherapy if necessary and that it was possible to move onto the really nasty stuff as the next line of defence. Given how well she had responded to treatment before, we’d assumed that there would be a few recurrences and knock-backs before things got to the terminal stage, so it still felt like a manageable situation. The only nagging doubt in my mind, however, was something I had heard several months before about the diminishing effectiveness of chemotherapy. I said nothing. My fears, however, were confirmed a couple of months later. The chemotherapy that had initially worked so well didn’t work at all the second time round and treatment was suspended after a couple of doses.

My mum was faced with an unenviable choice: to move onto the really bad chemotherapy and effectively write off the next few months in terms of quality of life without any guarantee of significantly improved longevity; or to let things take their course in the hope of an overall better quality of life, albeit for less time. She decided that she had had enough and didn’t want any more chemotherapy. The balance between quality and quantity of life was now such that a reduction in the quality of her life resulting from the treatment available was no longer an acceptable price to pay.  Once again I became aware of a new normality establishing itself, during which my mum’s illness progressed to being terminal. Looking back, I cannot even begin to imagine how difficult it must have been for her to make that decision.

The period leading up to my mum’s death was surreal to put it mildly. By the time she was given around six months to live, she was once again losing weight and unable to eat much without being violently sick. As the disease gathered pace once again, her condition started to go downhill alarmingly fast, meaning that as soon as something new or unexpected happened, there was barely enough time to get used to it before things moved on and something else new and unexpected happened. It felt as though we were all on a bizarre merry-go-round, holding on desperately as it revolved at an ever-increasing speed. I remember laughing slightly hysterically when I had to sign for a delivery of morphine from the doctor one afternoon, moving in a couple of seconds from the domesticity of a cup of tea and a biscuit to the surreal experience of taking possession of a controlled drug for the first time. I realised that until that point I had only heard of morphine when watching Miss Marple or Poirot on television and remarked on the fact that my signature on the electronic pad was so unlike my real signature that the delivery man would be forgiven for thinking that the morphine was for me. I’ve always had a rather inappropriate sense of humour, but the look on the delivery man’s face indicated that I was starting to lose it.

My mum managed to live for roughly another three months, dying the day after her and my dad’s wedding anniversary. The day she died marked the start of a period that I can only describe as a year of firsts, during which I went through all of the experiences that I would normally have shared with her, but for the first time without her being there. Hers was also the first dead body that I had seen, an experience that I can only describe as grotesquely fascinating. Grief was very different from how I had expected it would be too, in that I thought that I would be intensely upset for a certain period of time and then move on. Instead, I went through an extended period when I was outwardly ok but inwardly numb, every so often bursting out crying at totally unpredictable moments, or laughing inappropriately at others. About a year after her death, once I had gone through a full cycle of firsts, I remember thinking about her and, for the first time, smiling rather than crying. That was the point when I realised that I had turned the corner. These days the thing I am most grateful for is that whenever I think about her, the image in my mind is of her when she was happy and healthy.

A couple of months after my mum’s death, while I was helping my dad to sort things out, I found the letter from the doctor containing the result of that first CA125 test. Until that point all I knew was that the normal level for CA125 is anything under 35 and that anything over that is a cause for concern. My mum’s CA125 by the time of her diagnosis was 1639. I still don’t understand exactly what that means, other than that it’s pretty high to put it mildly and indicates how far things had progressed before we really knew what was going on. But overall, it’s helped me to come to terms with her no longer being around, by focusing on how amazing it is that she survived, and led a happy and outwardly healthy life, for as long as she did.