Whistling in the dark

Day 54

General status update: 

Hair: Flinches every time I come near it with a comb, but it’s not doing too badly; it’s thinning, but not particularly fast. 

Nausea demon: still doing his best to make my life unpleasant, even though we are now on day10 of the chemo cycle; I have to keep taking the anti-emetic drugs, to a strict timetable. 

Chemo Muse: weirdly, she has now become the latest of the Chemo Demons to manifest herself in physical form – just before FEC3 I was in the Oxfam shop on Kensington High St, which has a truly excellent crime fiction section, when I spotted on a shelf of bric a brac elsewhere in the shop a small plaster Medusa head, which looked straight at me and said ‘Take me home with you, now’. One of my neighbours in Ayvalik has a wonderful Medusa head high up on the front wall of his house, and I’ve long wanted one of my own. Accordingly, I bought her and took her home and placed her on one of the bookshelves, where she now glowers out at the world with her characteristic haughty stare (see below). It was only the other day, when I was lying on the sofa in the arms of Chemo Brian, and looking at her across the room, that I realised that what I had brought home with me was, in fact, the physical manifestation of the Chemo Muse. 

Chemo Brian: He’s done his bit for this chemo cycle, and is now back at work on the ‘Knit your own nativity scene’ project. – he’s having a few problems with the donkey.

Sleep, lack of: n/a. I’m sleeping for England.  

Anxiety level (1-10):  

State of mind: Am listening to Gregorian chant sung by the Cistercian monks of Stift Heiligenkreuz, which is making very pleasing and peaceful patterns in my head. The collection is called Music for Paradise, and I can see why. These monks are so cool they have  their own website and have been a big hit on YouTube (see below)

News from north Yorkshire: there are no rats in the attic: it’s official, the Ratbuster has spoken. What is more, there never were - apparently they were a figment of the MC’s rat-haunted imagination. BigSisFo now a little concerned about the MC’s mental state – what to do when your bloke has rats in his attic which cannot be seen or heard by anyone else?

 

The Chemo Muse finally manifests herself

 

If you asked a group of cancer patients to describe in just one word what it's like when you’ve just been diagnosed with cancer, I would be willing to put money on it that a significant number of them would opt for the word ‘surreal’; it’s certainly the one I would choose. This applies particularly, I think, where the disease has at yet produced no physical symptoms other than, as in my case, a very small lump. 

You’re feeling perfectly healthy – I spent this summer doing long-distance swimming, and was in the best physical shape I had been in for years – but you also know, because the doctors and the pathology results tell you so, that your body has turned against you, that rogue cells within you are reproducing like bunny rabbits on crack cocaine, and that if you don’t submit to surgery and all sorts of other nastiness over the next 12 months, you will die, sooner rather than later.  

The clash between these two beliefs is just too much to deal with, creating cognitive dissonance, and that’s when your brain implodes. Denial sets in: you keep thinking that this must be some kind of bad dream, that it isn’t really happening to you, that at some point you are going to wake up, it will all have gone away, and you will be able to resume normal life. It takes some considerable time for it to penetrate to the inner depths of your brain that your previous life has indeed vanished, just like that, and that cancer is the new normal.

I think I was probably rather slower than most. 

After we’d told people, and I’d stopped crying, my immediate response was a kind of intellectual hyper-mania, involving intensive research on the aetiology of breast cancer, its various manifestations and their possible outcomes, the nature of the various treatments available for it, both in conventional medicine and alternative therapies, and the evidence for their efficacy or otherwise. This involved a critical meta-review of both academic and ‘grey’ literature, and subscribing to on-line databases where you can access, for a modest fee, all the latest academic publications in the medical literature, which meant that I was soon reading the latest research findings published in journals like ‘Oncology’ relating to early stage, oestrogen-positive IDC (invasive ductal breast cancer) exactly like mine. 

Happily, one of my undergraduate degrees involved courses in human physiology, molecular genetics and health and disease, and I’d done some postgraduate research in the demography of health, so I was already familiar with reading medical research literature; I just needed to get genned up in the field of oncology in general, and breast cancer in particular.

I’ll discuss the results of all this research in due course, because there were some interesting things that emerged from it which may be helpful to others in the same position.

 I do love to get my teeth into a good research project, and there was a lot of material which needed to be mastered very quickly, which was no problem, because I was filled with a kind of demented energy which worked just fine for me; my project was, however, disapproved of by some of those close to me.

I was told quite explicitly by people who have never had cancer or any other serious disease themselves that I was, in the early days after my diagnosis, displaying the ‘wrong’ attitude. The ‘right’ attitude, apparently, would be to accept everything the doctors say unquestioningly, and not to require justification for their suggested courses of treatment, because they are highly-trained specialists in surgery and oncology and this is what they do for a living, so I shouldn’t be making their lives more difficult by being so damn bolshie and questioning everything.

The kindest thing I can find to say about such views is that they are based on profound ignorance both of the very real risks inherent in cancer treatments, particularly chemotherapy and radiotherapy, and of the history of the fallibility both of medical science, and of those who practice it.  My faith in the wisdom and superior knowledge of professionals – any kind of professionals – has been battered over many years of costly and/or painful experiences at the hands of financial advisers, lawyers, dentists and builders: oh, the troubles I have seen. These days I don’t trust anyone’s opinion on any subject which may have direct bearing on my financial or physical well-being unless I have done some independent research myself, and obtained some reassurance that the recommended course of action has at least a fighting chance of a beneficial outcome.

As it happens, I am lucky enough to be in receipt of outstandingly good care from the team of surgeons, oncologists and nurses at the Charing Cross Hospital, which is a centre of excellence for the treatment of breast cancer; however, given that my life is at stake and I am an academic researcher by trade, I needed for my own peace of mind to conduct my own research of the medical literature to weigh up the pros and cons of every aspect of my proposed treatment.  The stakes were far too high not to be quite clear about what the evidence says, and doesn’t say: what the statistical probabilities are for the long term outcomes of the cancer, given one treatment or another, and what the risk/reward ratios are for the various treatments. Given the physically gruelling nature of all the treatments for cancer, this last part was particularly important. 

There’s no ‘right’ way to react when you’ve just been told you’ve got cancer, nor is there any ‘right’ way to deal with it as you go through the difficult days, weeks and months afterwards; it’s your experience, your disease and the only people who are really qualified to comment on it are those who have already walked a mile in your shoes. 

Besides, working ten hours a day researching cancer created the helpful illusion, however ill-founded, that I was retaining some vestige of control over the perilous situation in which I now found myself. It was a coping mechanism, as writing this blog is a coping mechanism, and in the those first few terrible, demented weeks, it kept me busy on a superficial level whilst my brain was still failing to comprehend the message ‘You have cancer. Nothing will change that – you must accept it’.  

Acceptance was still a long way off, of course, but the research kept me whistling in the dark then, as writing this blog does now. 

Sometimes whistling in the dark is the only thing you can do.