This time last year the house was full of flowers and cards. In the preceding four weeks a large chunk of my abdominal contents had made a great escape, courtesy of the surgeons at the ERI, I had been hit with a diagnosis of ovarian cancer, I had cut my hair, chosen a wig and had my first chemotherapy session. It had been an emotional few weeks for the whole family, thrown into the early stages of a ride towards unknown territory. Looking back on it now, from the distance of the first anniversary, it seems like a bad dream. Just to remind me that it was all real, though, this orchid that I was given last autumn has come back into glorious flower. So I think it’s time for me to look back over my year – and then forget about it.
I have recently read Lance Armstrong’s story of his cancer diagnosis, his treatment and journey back to health; his is a remarkable story. He really shouldn’t have survived, let alone go on to win the Tour de France, one of the most demanding sporting events there is, several times. He had testicular cancer that had spread to his lungs and brain before it was diagnosed. Cancer survival rates deal in statistics. If there’s an 80% chance of survival for five years, well 20 people probably won’t make it. Told 80%, though, the odds seem pretty good. On the other hand, even with a 5% survival rate, where the prognosis is grim, someone is going to make it through and why shouldn’t that someone be you. I was very lucky. Right from the outset the doctors assured me that the cancer had already gone.
I was also lucky that I didn’t react too badly to the chemical cosh that constitutes chemotherapy; but perhaps it wasn’t luck so much as the doctors getting the dosage right. I can’t say it was a bundle of laughs but I wasn’t floored by sickness; you only have to read Armstrong’s book to know this isn’t always the case and there were certainly very ill people around me in the chemo ward. My hair came out in handfuls – that week was hard – and I did spend the winter in a chemically induced brain fog. But to all intents and purpose, life carried on much as normal. I could drive myself to and from the treatment sessions. I could work, sort of. I could cook and carry out my duties as social secretary and chief chauffeur for the boys; so that was all right then! And of course I could write blog posts. How do people manage if they don’t write blogs?
Twelve months on I know that I wasn’t feeling quite as well as I was pretending to myself. There’s nothing very subtle about chemotherapy, having bags of toxic poisons dripping into your veins. Now that I’m feeling so much better I can appreciate that I was really quite low. But still, last winter was simply a matter of gritted teeth and getting through it. At least something was being done.
Come the spring and the end of the chemo there was of course huge relief. At the same time, though, this was a surprisingly low time with a curious feeling of anticlimax as I moved from that something-being-done phase to let’s-wait-and-see. I’m not sure what I really expected but I seemed to think that my body and life would both instantly spring back to normal as soon as the chemotherapy was over. No, I didn’t really believe that, but it would have been nice! In fact, it has taken several months and I think I’m still trying to get my head together, never mind my body.
I started getting out on fieldwork again early in the summer with a repeat of last year’s trip to the beaches of Cardigan Bay. A week out and about on an easy field trip, but it two weeks to recover. And then came the Menai Straits, a trip I was supposed to be running. This deserves a chapter all of its own and it was certainly the week when I first understood how far I had to go. I had missed most of the previous summer’s fieldwork after I broke my ankle and so this was the first trip I had run for almost two years. No big deal as I have been bossing people around on surveys and expeditions small to large for 30 years or more. But we were repeating work done the previous summer and the friend who had run that trip was also on this year’s, with firm ideas about what we should and should not be doing. He is a notorious control freak but then I’m notoriously bossy and am normally expert at keeping him well in hand. Not this year, though. I could do nothing right. Every decision I made, he changed.
The final straw came at the end of the week when we discovered that the positions I’d uploaded to the GPS were in the wrong datum and our neat grid over the sand flats was no longer a neat grid. A grid, of sorts, but not neat. Definitely not. (For anyone who’s interested, these go from Excel via a little utility to the GPS itself and you can’t afford to take your eye off them for a nanosecond. The moment your back’s turned, they switch datum.) I did manage not to hurl myself to the ground sobbing my eyes out, heels drumming, but only just. It was my mistake. Perhaps he was right to challenge every suggestion I made, change every decision. I came home angry, furious more like, tired, my confidence in tatters and seriously questioning whether it was time to hang up my wellies and look for something new to do. Other friends reassured me and I’m still here. Or there.
Mixed up with the efforts to return to normal, the wobbly confidence, lack of motivation, continual tiredness which I tried to ignore and fuzzy hair which wouldn’t grow fast enough, there was a thread of anger that kept bubbling to the surface. “What do they expect? I’ve been ill for goodness sake!” I thought, almost as often as “I could have done that! I’m not ill”. There was nothing rational about it; I was well on the way to Grumpy Old Woman status. I found it strangely reassuring to read in Lance Armstrong’s account that he too had gone through a confidence crisis and was unreasonably angry. “Yes! Yes! That’s just what it was like! I thought that too!” I shouted to myself as I read his book.
Looking back over the year, it was the smallest, stupidest things which really got to me; I’ve probably reported most of them on this blog. Trying to get travel insurance, for instance, and realising that life would never be quite the same again. The expectations that went with my brother-in-law’s wedding. The CAT scan when I was the last appointment of the day and hadn’t been warned I would be there all afternoon….. and a chunk of the evening as the department emptied around me whilst someone dealt with a problem in the queue in front of me. I was not happy by the time I left. And then there was the car park. Parking at the Western General is almost impossible and so a car park is reserved for cancer patients. On my chemo days, I was normally at the hospital for 5 to 6 hours but on one particular day, when I had to have blood tests and wait for results before the treatment started, it was about 6 hours and 20 minutes before I got away. Up to 6 hours and parking cost £3. Anything over and it jumped to £7. The machine wouldn’t take cards. I had no change. The barrier was firmly locked and everyone had gone home. All I wanted to do was sit down, go to sleep and let someone else sort it out but there wasn’t anyone to do that. I eventually found a cash machine at the other side of the hospital and made my escape, ranting at the iniquities of life. It was a low, low moment.
These low times were balanced by people’s kindness. Wonderful friends rallied round unasked. The support I’ve had from strangers who read my blog has been unexpected, remarkable and so encouraging. I can’t fault the treatment I have received from the NHS (aside from CAT scans and car parks, of course); everything happened very quickly with no delay. At all stages the doctors have been positive, supportive, informative, friendly. And of course the chemotherapy nurses are saints.
I’ve come to the strange conclusion over the year that in fact it may be a good thing that hair falls out during chemotherapy. It’s a visible sign to oneself and to other people that something is wrong. Others may of course notice the chalky white complexion that goes with having your blood system clobbered; equally they may not. There are plenty of times when you really don’t want anyone to spot the problem; there are also occasions when it’s very handy to get a little more understanding, slightly lower expectations than would normally be the case. I remember, for instance, time keeping at a swim meet on a weekend following a chemo session. The brain fog, a slightly spaced out, detached sensation, was in full occupation in my skull. Noone else could see that. Nor could they see that my fingers were numb and tingly. It was a sitting-down job and all I had to do was press a button each time my swimmer touched the wall. So simple, but my reactions were slow and I didn’t seem to be able to press the wretched button fast enough or hard enough and kept missing the finish. The Time Keeper In Charge just thought I was incompetent; if I’d had my arm in plaster I might have elicited some sympathy.
My current head of curls serves to remind me that I really have been ill and am still recovering. The curls are a gentle prod to tell me that I should not expect to jump headlong into everything immediately, that I should take my time about things. Already it all seems like history, no more than a bad dream and thoughts of cancer no longer occupy every waking moment. The curls will probably go in time. I hope that my appreciation of life, my family, my friends and my good fortune will remain.
This has been a long post that has been lurking partly written for weeks. I’ve written it primarily for myself, to help me draw a line under the past year, but partly as a way for any fellow cancer sufferers who may wander into this blog to track down the related posts. I’m hoping that it marks the end of my cancer story and that perhaps I can move on now to writing the occasional post about wider cancer issues and other people’s stories. Maybe I can nurture the orchids to flower annually at this time as a gentle reminder. And I don’t care what the press say about Lance Armstrong; I hope that his comeback this year is a huge success.