Silver Linings

There’s been a bit of a hiatus in this blog, as some of you have apparently noticed. Our little world turned upside down and it’s taken a wee while before I’ve felt able to write about what’s been happening. In short: I’ve been diagnosed with ovarian cancer. Now I really do not want the account of our lives and journeys I’ve been keeping here to turn into ‘yet another cancer blog’. What follows is rather long, and quite personal, perhaps too personal, and with too much information for some. But there’s nothing like having cancer to illuminate starkly what really matters in life, removing prevarication, inhibition and equivocation. It gives focus, makes you honest, strips you bare. Here’s the story so far.

I arrived back in Glasgow on a train from London after a meeting one evening in the middle of June with an aching back (I’d had a sore back for months, which we put down to strange spare beds and the left-hand drive car) and a swollen, painful abdomen. After a couple of sleepless nights we decided something had to be done, and phoned NHS24 who sent me to the Glasgow Emergency Medical Centre at the Victoria Hospital. There I was seen by a GP, who sent me across the road to A&E querying a sub-acute abdominal obstruction. A&E took x-rays and did various tests, and pronounced me to have a urinary tract infection and mild constipation. After a week or so the UTI had cleared but the swelling had not subsided, so I went to see a GP at the Colinton Surgery at which we had just registered as new patients, who prescribed a laxative which blew me up still farther. When I went back to see him a week later, in some discomfort, with legs twice the size of their normal girth and looking like I was 9 months pregnant with twins, he took one look and referred me immediately to the Western General in Edinburgh. There I was examined by a lovely young doctor, who asked his friend, another lovely young doctor, to take a closer look and feel. He very gently broke the news that he’d found something at which he thought gynaecology at the Royal Infirmary should have a closer look. The following morning I reported there for an ultrasound and it was pretty clear from the picture, and the whispered conversations (‘I can’t find the left ovary’, ‘Just take measurements then’) that there was indeed something unpleasant in my pelvic area. Dr Walker the gynae consultant came down, tried to do an internal, pronounced himself ‘confused’ by what he’d found, and admitted me for exploratory surgery. I had a examination under anaesthetic and diagnostic laparoscopy later that afternoon (the consultant having gone to some lengths to make space in the schedule, and to persuade the anaesthetist to admit me to theatre without his usual checks  – ‘My colleague Dr Walker assures me you are strong and fit and a suitable candidate for surgery, so I’m just going to knock you out now.’) Then I got to spend my first ever night in hospital, and the following morning had an MRI scan and CT scan. Both fascinating procedures: the CT scan a huge spinning wheel of lasers issuing breathing instructions in a vaguely amusing mid-Atlantic accent; the MRI scan that big scary washing machine thing that swallows you whole served up on a metal tray. I overcame any sense of claustrophobia by pretending to be Sigourney Weaver settling down for the trip back to Earth at the end of Alien (not entirely inappropriate given the enemy currently consuming me from within). I accepted the offer of classical music for the 25 minutes the scan was to last. Should have had money on the playlist: Pachelbel’s Canon, Albinoni’s Adagio, Barber’s Adagio for Strings, Rachmaninov’s 1st Piano Concerto….all good relaxing stuff if you like funereal music.

Then we had a visit from the ‘specialist consultant’ who had taken the tissue samples for analysis (at that point they weren’t telling me he was a surgical oncologist). He was – at our request – quite candid about what they thought they had found and what the likely treatment was to be. The discharge letter from the hospital was also quite explicit. We came back to Glasgow to break the news to Mum, the rest of the family and friends. I found it helped me to tell people, it certainly got easier to talk about (in a number of different languages) as the days passed . Dee I think felt very alone. We spent quite a lot of time crying that first weekend. It’s a bit of a facer when your world turns upside down and everything you’ve planned for, everything you thought was important, suddenly and seismically shifts.

The full diagnosis was revealed by Charlie my lovely young oncologist (yes there is a pattern here, I am surrounded by lovely young highly intelligent capable professionals) the following week. Here it is.

I have a Stage 3 serous tumour which started on my left ovary (or fallopian tube, there’s some debate), has munched its way through most of my uterus and ‘involves’ (they’re not sure of the extent) the bladder wall and the rectum. It has also pressed on the ureter to the extent that my left kidney has stopped functioning. Treatment is to be four cycles of chemotherapy in the first instance, which they hope will shrink the tumour to an operable size, then a hysterectomy. Charlie said that Dr Walker has told him they are going to have to do ‘a really good job with the chemo’ and that is exactly what they are trying to do. I’m not sure how he did it, he had to move a few mountains or sell his soul or both, but Charlie persuaded the cancer day unit to admit me for my first chemo session the following day. Officially, then, from diagnosis to chemotherapy in less than 24 hours – I will never again hear a bad word about our NHS.

Our meeting with Charlie was really interesting. He started with his concerned ‘I’m sorry to tell you you’ve got cancer’ face and tone of voice, closely followed by what is apparently the next worst thing he can tell you, ‘now you will lose your hair … but we can give you a wig!’. But when we reassured him that this news was not entirely unexpected, that we’d had a pretty good idea of the size and shape of things to come when we’d left the hospital the week before, had got our heads round things, and no thank you I did not want a wig, his whole tone and demeanour changed. He went through my family health history in some detail, suggesting that there may be a genetic trigger for ovarian cancer in one so young as me (hah!). We wanted him to know that we’re in this together, that I have huge support at home (practical, clinical and emotional), that we are really positive about the treatment, will do all we can to maximise its effectiveness, and have every confidence in the team that’s looking after me at Edinburgh, that we have an intellectual as well as personal interest in what’s going on,  a lifelong concern with education and research, and that I am more than happy to be a teaching case or participate in medical trials. Charlie’s particular interest is genetic causes of ovarian cancer and he has stored some of my blood for possible DNA testing as part of his research at a later date (if and when he can persuade the government to fund an extension to his study).

Chemotherapy is a fascinating process. I think perhaps some people are scared of it, because it’s poison, and because it makes your hair fall out. But it’s the medicine, it gets rid of the cancer, it’s what makes you better. The dialectic of toxicity, kill/cure, creation/destruction, is quite hard to get your head around. Remember when we were in Belgium in February and Parsifal had such an effect on us? One of the key themes is the healing power of poison, but we never thought at the time that this would strike home with quite such force. My drugs of choice is TaxolCarboplatin based on yew (taxus) and platinum. The day before the first session Dee took me to the Botanics to commune with the yew trees (and maybe we’ll get those platinum eternity rings after all…)

The chemo cycle starts in the middle of the night before when I have to take a massive dose of steroids (which make me rather bouncy, some might say aggressive although only towards my pillows, but are intended to prevent nausea). I reported to Ward One (the Nuffield Building at the Western, won architectural awards in the 60s, an accolade which tends to strike aesthetic dread in us now, but actually despite being built of curvy concrete blocks it’s a lovely bright, calm place so entirely fit for its present purpose). A lovely young nurse called Louise sat with us for over an hour explaining the procedures, possible side effects, risks (the big one is infection), whom to contact with any queries (24 hour cover, no question or concern too trivial) and my forward treatment plan. Then I sat in a reclining chair by an open window above a flower garden from around 11 until shortly before 5 while various fluids coursed through my veins (the yew and the platinum, interspersed with saline, antihistamines, steroids and various other things to counteract side-effects). It was a really interesting day, for the procedure itself, for the people also undergoing treatment, for the calm, kind, incredibly busy efficiency of the nurses.

I felt so much better afterwards, because treatment had started and healing had begun. Two weeks on I’ve had very little in the way of adverse side effects (one day I felt too wabbit to do very much, there’s been a bit of a burning feeling in my gut which is apparently a common ‘chemo response’ and I take to be a sign of things working). My blood counts have stayed within or just below normal range (or normal for a chemo-induced white blood cell plummet anyway) and apart from the still swollen abdomen I feel just fine (if a bit tired and paranoid if anyone sneezes in my proximity).

We are, of course, doing all we can to maximise the effectiveness of the treatment and minimise the side effects. I’ve stopped taking extra vitamins (they promote cell growth, which is what the chemo is trying to stop) but am boosting my immune system with echinacea and a mushroom-based supplement. We’re not indulging in quackery here, everything is very carefully researched by Dee. Rose discovered some American research which has shown some quite significant results from maitake and shiitake mushrooms not just in boosting the immune system but also in promoting apoptosis – a new word for me, meaning cancer cell suicide, so a good thing!.

I have to increase my protein levels (to reduce the swelling, and build me up for the treatment and surgery) with twice daily yummy milky shakes (empirical research has shown that lemon yoghurt and mocha flavoured Fortisip are – just – potable but the fruit-based flavours are the work of the devil). We’re supplanting these prescribed supplements with some protein energy bars designed for cyclists (my afternoon treat). My diet includes quantities of delicious fish, eggs and cheese (maybe we’ll do a post some time on the delights of the high protein diet in this ‘not another cancer blog’). I’m not sure how all this cell-building protein sits with the intended cytotoxicity of the chemo but I’m sure it’s all fine and anyway there’s nothing wrong with my appetite which has to be a good thing.

Other people react to my cancer in interesting ways. Some stay away, not, I think, in case they catch something nasty, but simply because they don’t know what to say. Mostly people rally round. We take huge comfort from the overwhelming waves of love and support and concern, popping in to say hello, the phone calls, emails and texts that just stay in touch and say ‘we care’, the offers to help in any way possible. I’m figuring in the prayers of a lot of people including the Iona prayer group (special because Iona is special to us, where serenity meets energy). I’ll take all the help I can get. Francophones send courage. Catherine Lockey wrote: ‘Dad and I were just saying if anyone can beat this, Jane can’. That sort of ringing endorsement does a power of good.

My reaction to cancer is quite interesting to me too. It’s another adventure. Not one we would have chosen to undertake, but it has presented itself and has to be undergone, and overcome, with as much grace and dignity as it’s possible to muster. It’s also quite an education (a recent article in the Guardian expressed the educational aspects of cancer far more elegantly than I can). I don’t feel resentment, or fear. I’m not asking the two unanswerable questions, ‘why me?’ and ‘how long have I got?’. I didn’t think I was angry but I have been responding with disproportionate fury to slight irritations, so there may be something to work through there. Dee’s quickness to anger has completely dissipated. When we look back, we’d been bouncing off one another for months if not years, the strains of life in the last couple of years at Lewiston, then our nomadic adventures, having taken a bit of a toll on our domestic harmony. She’s calm and unfazed by anything now. There’s nothing like cancer to restore perspective on what really matters in life.

Dee, of course, has been with me through every stage of this whole process so far (apart from one or two examinations, the surgery and the night in hospital, during most of which I was asleep or otherwise unconscious anyway). She’s my nurse, my minder, my best friend, my wife and the love of my life. She prepares and serves my food, cleans and clears up, records my vitals, keeps my appointments diary, dispenses my medication, sorts my clothes and helps me to dress when I can’t raise my fat legs above my fat belly, reacts to the slightest indication of discomfort, panders to most of my whims, is with me looking after me every minute of the day and night.

She has had to take total responsibility for all the logistics of our daily life, doing all the shopping, cooking, cleaning, packing, all the organising, all the phoning and arranging for life in Glasgow and the ongoing works in the flat. She does the work of three people – her jobs, my jobs, and my nurse. I am able to focus every fibre of my being on staying well, resting, and healing. Dee has rekindled her reiki expertise which I am finding incredibly strengthening and energising. I envision the tumour shrinking in the heat of the energy that is generated by the love and care that comes to us from so many diverse and eclectic sources. My sacral chakra appears to my mind’s eye as an intense magenta pink, sometimes waves of violet. I think channelling energy in this way helps Dee too. We’re a team, and we are a winning team. This big, dark cloud has many silver linings.

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