General status update
Hair: see below
Nausea demon: this is the first day in 39 days of chemo that I haven’t had to take anti-emetic drugs; it seems the Nausea Demon has clocked off until FEC3, next Wednesday. He’s very anxious about whether flights from Heathrow tomorrow are going to be affected by the snow, as he’s scheduled the much-heralded mini-break to Bilbao for this weekend, some much-needed down-time after having been continuously on duty, pretty much, for the last 6 weeks. He pointed out that this is all very wearing on him, too; I am proving to be one of his more demanding gigs, what with my ridiculously high propensity towards nausea.
Chemo Muse: She’s pretty disappointed in me at the moment, as it’s 9.38 pm and I’ve only just sat down at the computer to write my blog-post.
Despair Demon: Told her to b***er off back where she came from, and set about doing useful domestic tasks to drive her away – there’s nothing a despair demon likes less than the smell of extra-strong bleach.
Chemo Brian: yeah, OK, I admit it, we might have had a little nap together on the sofa this afternoon – but it was a happy nap, not a what’s-the-point-of-it-all-I-might-as-well-lie-down-on-the-sofa-and-turn-my-face-to-the-wall kind of nap. We are over despair. We have moved on.
Fatigue/weakness: Given my current state, it’s hard to believe that between May and September of this year I was swimming 5 plus miles every week. But in April I will be able to get back in the pool and build up my strength again. One length at a time.
Sleep, lack of: the problem has entirely reversed itself – now the difficulty is in staying awake. Next Wednesday, after FEC3, it will be all change.
Anxiety level (1-10): rising, but mainly about whether we’re going to be able to make it up to north Yorkshire on the train on Saturday morning. It’s bound to be the wrong sort of snow.
State of mind: I’m perfectly fine – I’m not the one with rats in the attic, after all.
Nora Ephron famously said that that not having to worry about your hair any more is the secret upside of death, and until recently I would have agreed with her: I have always regarded my hair as a tiresome nuisance.
I wanted it be thick and wavy, perhaps falling into natural ringlets; it doggedly insisted on being very fine and very straight, albeit soft and shiny, at least. That was OK in my youth, when it was the thing to have a waist- length sheet of straight hair, but it’s not a look you can maintain into middle age unless you either simply don’t care about looking like a portrait that’s escaped from someone’s attic or are seriously deluded about the laws of ageing not applying to you – talking of which, one of the most tragi-comic things I have read recently was an interview with the artist Tracey Emin, who was bemoaning the fact that at the age of 49 she was, quite unaccountably, peri-menopausal, and suffering from a greatly diminished libido. I can’t quote her exact words - because I don’t have time this evening to search for the original article - but she said something along the lines of ‘I am not the kind of person that people associate with the menopause’, as if celebrated, funky, in your face female artists like herself (belonging, moreover, to a group known as the YBAs -Young British Artists) should obviously be exempt from the normal ageing processes that apply to ordinary, less talented women.
We’re all that kind of person, Tracey (although not all with a greatly diminished libido, by any means. You've been unlucky there).
I digress – the point I was trying to make is that once past the first flush of youth, there’s not much you can do with very fine, very straight hair except cut it into a bob, unless you want to spend an hour every morning with various hair torture instruments and a lot of product, creating some kind of faux shape that will inevitably have collapsed by the end of the day.
I always wanted to have the kind of hair that….but no, you really don’t want to hear this, or look at the photos of the women who were, mysteriously, given the hair I ought to have had. It would only take 5 minutes for me to find them on Google, but that really isn’t the point.
The point is that during all the decades of moaning about my hair, and the total impossibility of doing anything with it, it never once occurred to me what a simply magnificent job it was doing fulfilling its prime purpose: covering my head. It just got quietly on with the job and never complained, not even after that truly disastrous perm in 1988 which I have always subsequently regarded as an Act of War by the hairdresser involved, whom I would still like to hunt down and kill, although I would imagine that by now some other equally enraged client has got there first.
It’s only during the 39 days since I started chemotherapy treatment, during which time my hair has been under severe threat from the toxins now regularly being pumped into me, that I have come to appreciate just how completely I have taken my hair for granted. All chemo regimens have particular side effects for which they are notorious, and the FEC chemo regimen is famous for debilitating nausea, and instant alopecia – almost all women with breast cancer who take FEC lose all of their hair very rapidly, usually not long after the first dose.
I fully expected to lose all my hair, and prepared for this by collecting together enough scarves and snoods to cover the heads of a regiment of bald women. Although the cold cap – the pink helmet which I am wearing in the photo on the right hand side of this page – helps some women not to lose their hair, or not all of it – I had no particular reason to suppose I was going to be one of the lucky ones.
So far, I have been one of that fortunate few – after 2 doses of FEC, and two sessions of scalp-cooling, or rather head-freezing, in the cold cap, I have yet to lose any hair, although this could change at any moment. But for now, it’s still there, and every day I wake up and find it hasn’t come out all over my pillow is one where I give thanks again to my hair, just for being there and covering my head.
Breast cancer is a disease that strikes very hard at a woman’s femininity, her sexual identity, and treatment starts with the mutilation of your body, to a greater or less extent, as either the cancer is removed from your breast, or your breast is removed altogether. Surgeons can do amazing things these days, with lumpectomies and reconstructions - which I'm going to write about later - but the process is still hugely traumatic. And then, when you’re still recovering from that, the chemo comes along and takes away another of the visible signs of your femininity, your hair.
So then you’re not only mutilated, but also bald, and my chemo buddies who have lost their hair already have grieved bitterly over this. My counsellor at the Haven, who has accompanied innumerable women through chemo, says the loss of their hair is the factor which brings many women to their lowest ebb. Your hair will grow back eventually, of course, but that’s not a lot of comfort to a woman who has just had her head shaved, because she can’t bear hoovering it all up off the carpet any more.
I have been struggling with my morale this week: chemotherapy treatment is a long, painful process, and before that there was the surgery and associated unpleasantnesses. Sometimes it’s very hard just to keep putting one foot in front of the other, but 39 days in, I’m one of the very few to have kept my hair so far, so that’s one less loss and source of grief to deal with. It helps, enormously, and I’m praying that I won’t have to deal with it at all, that my hair will stay put through the next 4 doses of chemo.
The fact that I haven’t yet gone bald seems to be simply because of using the cold cap, something which is now offered to chemotherapy patients in many hospitals in the UK, but is by no means universally available. I have written about how it works, and shown what it looks like, in an earlier post , but a new development is an on-line petition to the government by the manufacturers, Paxman, calling for the cold cap to be more widely available.
I have signed the petition, as have many of my friends, and if you would like to do so you can find it here:
R was a little dubious about this, pointing out the manufacturers do have a rather vested interest in the subject, but his own private meta-review of the limited academic literature on the clinical efficacy of the cold–cap – which indicates that it is indeed effective in preventing hair-loss in some, but not all, cases – left him feeling reassured enough to sign it, too.
Your hair isn’t the most important thing – staying alive is the most important thing - but every little helps.
And sometimes a little can help a lot.
Addendum, 18/1/13: I forgot to mention that it seems the cold cap works best for people with fine hair - I'm sorry, Hair, for ever doubting you.