The CT scan last week was entirely uneventful. That was the first bit of good news. GPD met me on time at the clinic, despite a little detour through the wrong part of the hospital. That was the second bit of good news. But the headline news was that the scan was clear and the CA 125 was normal. Turns somersaults of joy!
We’re celebrating, but in a slightly muted way. A friend has just asked “Is it joy or is it relief?” It’s relief, I think. Of course it’s wonderful that I’m in remission again. The consultant, though, was at pains to stress that the cancer WILL come back – we just don’t know when. The longer I have clear the better, as the more chance there is of another round of treatment being successful. My body needs time to recover from this lot, for starters. We’re into the wait and see, with check-ups every three months and the knowledge that I’m unlikely to revert to six month intervals, let alone ever be signed off as clear. I am still coming to terms with the fact that I will be living with cancer for however long I last; I suspect that this may be even more difficult for the rest of the family to accept.
One of the problems of finishing chemo, that I remember so clearly from last time, is the transition Continue reading →
So my hate – hate relationship with the CT Scan Department continues. My first encounter with this smiley, all singing dancing department is buried in the mists of that inital diagnosis four years ago. Buried but not lost. I remember vividly the absence of any suggestion in the letter I was sent that might have warned me I would be spending several hours in the department. I also remember waiting for maybe an hour in one of those unflattering gowns in the equivalent of a corridor with no idea what was going on. I particularly remember leaving in the early evening in a truly foul mood, worrying about the children I’d abandonned for far longer than planned.
Scan No 2, last summer, was more straightforward but perhaps more fraught. With No. 1 they weren’t expecting to find anything and indeed it was clear. No.2, on the other hand, was most definitely looking for something and sure enough, they found things. Ho hum. Hardly the fault of the CT Dept, of course – they were only doing their job, finding what shouldn’t have been there. But a smile or even some eye contact from the receptionist might have helped things along.
Scan No 3 came in the autumn, following the clearing out of all unsavoury abdominal bits. For the benefit of readers Continue reading →
Chemo days are long. They start in the middle of the night, 6 hours before the appointment, when I have a lonely midnight feast with a handful of steroids. Middle of the night feast, of course, not midnight. Do you remember those midnight feasts when you were little when you and your friends would hide away a bundle of sugar-hit goodies, and of course it was a secret and your mum didn’t know, but then you couldn’t last until midnight? Either you tucked in to the goodies at 10 o’clock, torch under the blankets, or you woke up in the morning and it was all still sitting there.
Anyhow, back to the chemo. My appointments at the moment are Mondays, and have moved from 9am to 11am. The 11am bit means I can get up at 6 to take my tablets, rather more civilised than midnight. Why not 5? Unfortunately the Monday bit means I have to get my pre-chemo bloods done on Friday, three days ahead, rather than the preferred 24 hours before. The way this drip-drip poison works is to kill off every fast growing cell it can find. Subtle, eh? Fast growing cells include Continue reading →
I’m sure we are all inspired by different people at different stages in our life. As a geeky teenager, I thought Jean-Paul Sartre and Albert Camus were where it was at as I trotted off to study French at university. I read everything I could get my hands on, in French of course. Can I speak French now? Of course not. As a young marine biologist I thought Sylvia Earle was just wonderful, and parts of me still do. But her image became tarnished when I heard her speak at a conference. She was “Me, me me!”, ran over her time by half an hour or more and then handed over to her photographer for another hour. Bad chairmanship of course, but I don’t think inspirational figures should really let on that they think they’re wonderful as well. It should be a one-sided affair.
Somewhere between Sartre and Earle, I met Monsieur Edwards, or maybe Edwardes – I don’t know the spelling and can’t remember his first name. We were staying in Sombra, a cottage near Port Antonio, on the north coast of Jamaica. It was an idyllic spot with its own little beach, Continue reading →
Today I washed my hair for probably the last time in several months. Tomorrow Gail is coming round to cut it all off. Right off. Gone. Hair today, gone tomorrow (sorry!). It’s due to fall out in the next few days and I’m not going through that trauma again. I’ve bought some hats, which I may or may not wear. I’ve ordered some buffs, which I’ll probably wear. I’m in the process of choosing a wig, which I’ll keep for best, otherwise known as “not standing out from the crowd”.
The week in hospital was most definitely a detox week, the sort of system clean out that I suspect people pay good money for. Flush the system out first. Then remove anything unsavoury followed by several days of clear soup and a spoonful or two of porridge. Definitely no alcohol. It was one way to lose 6kg but perhaps not one that I could recommend.
Toilet paper manufacturers of Great Britain can relax. I won’t be dispensing with their services just yet. In fact, the way things are right now, I might even consider buying shares. It was two weeks ago today that the knife went in and I’ve been home from hospital a week. The staples are out – if I thought I had a long line of piercings last time, they were even more impressive this time around.
It sounds like they had a good guddle around while they were in there. It turns out that CT scans aren’t hugely reliable – I had been warned about that beforehand – and so, although they found the lump that had showed up on the scan, they also found all sorts of other undesirable stuff. They had gone in, this intrepid duo, with the intention of clearing out 100% of whatever they found, whatever it took. I’d been warned. In the event, they found lots of tiny spots of ovarian “disease” (sounds so much more manageable than cancer, doesn’t it?) all over the peritoneum and what was left of the omentum. This was very typical of ovarian disease, they reassured me. Did I find that reassuring? Take a guess. They took out as much as they could, around 95% they estimated, and figured the chemo would nail the rest. I spent some time trying to identify the good news in all that but without much success.
I realise I’m very scared. I’m really quite fit at the moment, and well although the CT scans might indicate otherwise. By tomorrow evening I know I’m not going to be fit for anything and, once the chemo starts, it’s going to take months to recover. I’m assuming of course I will recover but I also realise I have no idea what’s going tohappen.
Tomorrow seems to be the start of a whole new phase of my life, and I’m not in control. That’s why I’m scared.
“Stoma” he said. “We have to talk about stoma.” Stoma? Isn’t that a little hole on a leaf for plant respiration? I’m sure I picked that up during a botany class. The only problem is that this was the gynaecologist talking, the one who’s about to cut me open to remove whatever has taken root on my pelvis. Oh dear. I knew, when I was first told that there was a chance the cancer had relapsed, that they had taken out everything disposable four years ago. There’s not a lot left in there that I don’t need. I suppose I could spare a kidney at a push and maybe the appendix could go. Other than that, I’d like to hang on to all my bits, thank you very much.
There had been a minor moment of relief when the oncologist showed me the CT scan with something showing in the pelvic area. Nothing enormous, not spread everywhere, didn’t seem to be attached to any major organs, operable they thought. That relief evaporated a few days later when the surgeon began to talk about the bowel. The bowel which might just have to come out, to be replaced with a snazzy little bag. The must have accessoryof the colorectal ward. Panic, panic. My life revolves around activity – diving, running, swimming. This sounded like the start of the end; was everything going to grind to a halt? Would I be able to dive again? It seems it was a good job that last autumn I ticked manta rays off the list of Things I Still Want to See. Whale sharks are still on the list, though.
Oh, I’ve been so complacent. So complacent that I could be accused, quite rightly, of being smug. Cancer? Pah! Caught early, had the treatment, done and dusted. No one was expecting it back; I was one of the success stories. I would go for checkups at 3 month, then 6 month intervals, saunter in unconcerned and saunter out again a few minutes later with a date for 6 months hence. At 3 1/2 years, I was really starting to put it all behind me. Fit and well, getting on with my life, rarely thinking about cancer, happy with my lot, telling anyone who asked that it was gone.
Had I missed the point, that check ups are for a reason? They wouldn’t be doing check ups if there was no risk. Continue reading →
My mad, unruly curls have all been chopped off. Shame – I’d grown quite fond of them once they’d moved on from the tight, grey, just had a perm stage. People pay good money for curls like that. But I knew they weren’t destined for a long life and my hair really did need cutting. It is now two years and about three weeks since that awful, dreamlike day when I was told I had cancer. Almost exactly two years since my hair started falling out, 19 months since I noticed the first hint of bum fluff returning to my bald head.
That’s not so long, really. All over and done with in the blink of an eye. My cancer is old history now and I’m just a statistic. I don’t think about it so often these days and I suspect most people around me don’t ever give it a thought any more. And that’s how it should be. I fully expect to be one of the 73% of ovarian cancer sufferers who survive to 5 years after diagnosis. I plan to be one of the 30% or so Continue reading →
Needle in, blood out. Quick chat with Sally, the practice nurse. Go home. Forget about it. That’s been the normal 3 monthly routine for the past year or so, and far more frequently before that.
But there’s been a change at our local surgery. One practice has split into two and our surgery has an almost entirely new staff of doctors, nurses and whoever else works in a GP practice. So, today, there’s a new nurse, no Sally, and the blood test went something like this:
“What’s this for? CA 125? Oh, you’ve had a bone scan.”
(Thinks: Bone scan? Why’s she asking me about a bone scan? I’ve had cancer, I’ve had everything scanned and she’s asking me about a bone scan?)
I’m sure we all have friends hovering on the periphery of our consciousness. Friends who have been important in a particular stage of our life but with whom we may have lost touch. Even so, we think about them often and know that if we were to meet up, we would pick up just where we left off all those years ago. Julia was one of those friends. We were at University together in Durham, mainstays of the diving club. Every weekend we all piled into the university minibus and headed off up the old A1 to St Abbs where we dived off the shore, either at Petticowick or outside the Harbour. Petticowick was a slog; a steep, grassy slope down with the gear and, of course, back up at the end of the dive.
My first dive in Britain was at Petticowick, after learning to dive during a gap year in Jamaica. I vividly remember my introduction to the cold, greenish murk of a November kelp forest, shivering in a too big borrowed wetsuit with a piece of orange canvas that purported to be a life jacket around my neck. “Wasn’t that wonderful!” proclaimed my buddy, Tim, later of Eden Project fame, as we staggered out of the water. “Drifting down through the kelp, in that beautiful clear water!” He clearly hadn’t been on the same dive as me. Still, I perservered and learned to like, if not love, kelp forests. The following year Julia and Chas arrived in Durham and joined me in the diving club while I switched subjects and joined them in Zoology lectures. We became firm friends within a wider group Continue reading →
Did you know that ovarian cancer is the fourth most common cancer amongst women in the UK but that, amongst the gynaecological cancers it is first in terms of deaths? Only 40% of women diagnosed with ovarian cancer survive for 5 years after diagnosis and Scotland has the worst survival rate in Europe for the disease. Survival rates for breast cancer have improved significantly over the last 20 years but those for ovarian cancer have remained virtually unchanged in that period. Fun, huh?
I’ve only ever watched snippets of Big Brother, and those more or less by accident. But I had heard of Jade Goody – who hadn’t! – although I hadn’t heard about her cancer until last week. The first I knew of it was the photo of her bald head on the front page of all the papers, as the news broke that her cervical cancer is terminal. “How brave!” was my instant reaction because I would have found that so difficult to do when I lost my hair. I didn’t wear my wig all the time but I wore a hat and I never got used to seeing myself without hair. There was no way I was showing off my bald head in public. The photo alone is a huge statement – “I’ve got cancer and I’m not afraid to tell you all”.
There seems to have been a huge amount of sniping at her in the media about profiteering from her cancer. This is so unjust: how on earth can anyone profiteer from terminal cancer? Continue reading →
It is almost a year since a friend of mine, a fellow member of the local triathlon club, died from a brain tumour which she had battled for several years with remarkable good spirit. I found I couldn’t write about this at the time as it was not long since I had started chemotherapy myself and the emotions were very raw. I have been reminded of Trish constantly in the last couple of weeks since the news emerged of Seve Ballasteros’ illness. I have now just heard that another friend and colleague, someone I have known for many years – in fact she was once a girlfriend of my husband – is in the final stages of breast cancer. This news, although it was expected, has filled me with a huge sadness. Mixed with the sadness is a large element of guilt, which I know I shouldn’t feel but I do. It has made talking to Dale about cancer very hard over the past year, since she has been growing iller as I have improved. It is guilt that I seem to be alright, I seem to have got away with it while these friends have not. It is guilt that it has been hard to talk to her at a time when she has probably needed it most. Why me? Or why them? There is nothing fair or just about the way cancer strikes a family.
Of course, it will be several years before I know for sure that my cancer is not coming back but at the moment all the indications are good. I have been trying to write a post for sometime, for my own benefit, to encompass my experiences of the past year, but it has been proving difficult. Today, though, I’m remembering Trish and thinking of Dale, sending as many positive thoughts in her direction as I can muster. And I shall try not to feel guilty but to feel hopeful and grateful that it seems as though I am going to be a cancer survivor.
Steve Augarde, by the way, is author of the Various trilogy and, when I looked at his website, I realised he also wrote The Tractor Factory, Lifeboat to the Rescue and a number of other delightful books that I once knew off by heart. As to my present reading, I rarely read books twice now that I’m past the stage of Katie Morag, Busytown, Burglar Bill and other such classics, all of which I could probably still recite if tested. But I’ve just read It’s not about the bikeby Lance Armstrong and I turned from the last page straight back to the first to read it again. Perhaps it’s not the greatest literature but it struck the most enormous chord. More about that in a future post, I hope.
“Have you noticed” said a notoriously tactless and insensitive male of my acquaintance, “Have you noticed that your hair’s rather curly?” I sighed. I tried to summon a suitably withering are-you-an-alien-from-another-galaxy glare. Deep breath. “Well, there are mirrors in our house and, oddly enough, I do tend to take a glance while I’m brushing my teeth in the morning. Of course I’ve noticed, you ****”.
But I suppose I’m gradually getting used to the wide-eyed stares and take-two looks from those who haven’t seen me for a while. Earlier in the summer we went to big sister’s cottage in Co Donegal for a week’s holiday and all four sisters were there at once, which must be something of a record. They (the other three) took one look at me and fell about laughing. Sisterly love, eh? Continue reading →