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Note on the author.
Marie works with the homeless in London developing hostels and improving conditions. She is also a Release volunteer (a
telephone help line for drug-related problems). You will hear more of her progress in subsequent issues.
Boswell
Hello Brigaders!
April 1997
Am listening, loudly, to the Fugee's Refugee Camp which I currently adore, plus it annoys the hell out of my vile neighbour, who I think/hope is moving out tomorrow. Hurrah. This is an idiot youth who, when his girlfriend left him, decided to start sending me letters about his loneliness, rub his knee against mine when I condescendingly agreed to have a coffee with him, and appear naked at his door at 3:00 one morning as I was going out for cigarettes. Don't ya just hate people like that?
Am still practising supreme avoidance on the last league of my M.A. I am no academic; I am a hard working reprobate who enjoys having a social life and puts on weight when she stays in with books. Am about to flunk out for the first time in my life, and I really don't care. I can't cope. It's all too ridiculous.
The only gross thing on my general horizon was the discovery of a huge lump in my right boob. So, they were getting bigger.... everything underway. But having your breast slapped around is no fun in a clinical context. My one consolation is that I might get a new pair, which I've always wanted, and like Kathy Acker become famous for it all. I'm going to have more scars than Capone soon.
July 1997
"They're more trouble than they're worth. I don't know why they don't just chop them off at our births." -My aunt. (Who's lived in mortal terror since my Grandmother was diagnosed as having breast cancer. Although they say it skips a generation. She, certainly, is cancer free, whilst I, at 34, have just had a segmental mastectomy and complete auxilliary clearance...But more of that later.) I recognise that at least 50% of my life has been spent in the pursuit of the sensation I have now labeled an absence of pain. What the absence of pain is can only be fathomed by those who have felt pain - heartbreak pain, love pain, hate pain, loss pain, the pain of an exploding appendix, the pain of body-wide blood poisoning, the pain of having someone carve themselves on your breast, your body. Pain takes over your body and the morphine-junkie mentality kicks in. But this is only a more overt semblance of what you have been all your life.
Writhing, in toxic shock, you beg, your body begs for that second shot, third shot, permanent shot. And even when the shooting pain has stopped you continue to prescribe for yourself so as not to weaken into the pain, not to be overcome by yourself. Even if you have a terminal illness, even if you want to discuss (in words or pictures, or tears or jokes) still you don't want to be subsumed by your pain. Pain that, once it is no longer immediate, is measured by the response of others. Discovery is a daily occurrence, because nothing you do anymore is clear of this fact. You amaze yourself by your capacity to continue, to feel, not to feel, to do things which they said you couldn't do.
I wouldn't leave the recovery room after I came round from the anaesthetic. Not until the trauma that my body went into (I had forgotten where I was and what was happening completely, and they lied when they said it wouldn't hurt much) had been numbed sufficiently for me not to cry out or look as if I was in pain. Half an hour later I was back on the cancer ward (!) I drank my water and ate my cherries (though they said it would make me sick).
Then I asked for the clothes which I had carefully laid out before I was wheeled down to surgery, and said that if they wouldn't help me to get dressed I would do it by myself. I put on an underwired bra they told me wouldn't be comfortable for months, dressed, and went outside for a cigarette. It made me feel ill, but I went out again and again, every hour, until I had stopped chucking up my cherries and my water and my nicotine. I ate my dinner that night and drank a glass of champagne on the fire escape with my friends and smoked a few joints, while other women groaned gently in their Temazepam sleep.
I didn't sleep well, or long, but I wouldn't take their drugs; I took my own choice and carried the bag and drain, which was siphoning off my blood and ooze constantly, with a certain amount of style. I cried once, when they refused me morphine on the third day. This was out of anger because I know me best and can self-prescribe. After that they gave me what I wanted, when I wanted it. I partied and entertained, and on the fifth day they sent me home, five days early. I always thought of five as my lucky number. I went home by myself as soon as I could allay everyone else's fears sufficiently to be allowed to do so. I went back to work after only two weeks. I had energetic sex the weekend I got out, though the blood and lymph fluid that had collected under my arm burst through my skin flooding us both in a grotesque manner. I started driving again after three weeks.
I am so scared when I sit and think about what is happening to me. I know that life is a lottery, but lotteries are chancy. I am so strong but I can't face this with any certainty. It slows me down. It is destroying my volition.
Still I am strong...still having a good time..still contributing. Someone take all of this away. If I created it, maybe I can uncreate it. If I didn't, I'm in deep trouble. 80% of women who get breast cancer, die of breast cancer. To state it baldly. Because I am so young the prognosis is basically crap. The statistics have not altered since the 1930's. Despite all the miraculous surgery and drugs and treatments the long term results are the same. 80% is your ballpark figure. And twenty-five years is your basic maximum from the day of diagnosis. Tick tock. It goes in five-year blocks. If I get through this year, chances are I'll get five years. They've taken out all my lymph nodes on the right hand side so that if it spreads it will go slow.
I'm on anti-oestrogen drugs because it's a hormonally responsive cancer, although I could have opted for radiotherapy to my ovaries instead. Choices, choices. At the moment I don't have to opt for chemo. Lucky me. Radiotherapy to my breast starts in a week or so. Blast the bastards. A lump seems to have formed again in my breast. The nipple is oversensitive and rough and seems to be changing shape and colour. I very much fear that I will have to have this breast removed completely. My concerns around this are not vanity, but if they had done it in the first place I wouldn't have got so involved with the man I am seeing. How will he feel? Work will have to be put on a complete hold, hospital again, many months of healing and worrying...plastic surgery (assuming it hasn't advanced too far meaning I can't have reconstructive work done ever).
This is not an illness with a single treatment, with the doctor making all the decisions. At every step of the way you have to make your own life and death choices. And how? When I think about it I am so scared.
I subsume myself into - my clients, my friends, my lover, my work, film, writing, lovemaking. These take the pain away. I pull myself up if I am not engrossed in something other. Life is too short to lie and fret over myself. I want to experience myself, my pain, my possible absence only in relation to other things. This is not a stand alone situation.
There was never going to be enough time for me. I wanted it all to go on forever.
But how unfair. I love everything so much, see the good in everything, every situation, everyone. I try so hard to reconcile and help people explore and enjoy and live. I don't want that to end. I love life and people and I don't think I ask for very much or try to cause trouble to make people unhappy.
I stopped and cried then. It doesn't do any good. Knock an hour off the effective work I'll do tomorrow because of that, so what's the point? No one will die if I'm not there, but at least I ease the way for some when I am. There, that is a no choice situation. The kind I like.
Does any of this go any way to explaining what it's like?
Cancer Ward by Solzhenitsyn.A
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