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Before I Say Goodbye: Recollections and Observations from One Woman's Final Yearby Ruth Picardie
E-mail to Carrie Turk, 20 November 1996
Dearest C, The latest news is that I didn't have the second lot of chemo yesterday, because my white blood cell count is still crap — they went in 'all guns blazing' (direct quote from oncologist) first time round and it was obviously OTT. So I have a week off, which is brilliant — like an exam being cancelled. Next time they will lower the dose from maximum (7) to almost maximum (6). Meanwhile, my hair is falling out with amazing rapidity — I estimate total baldness will be achieved by the weekend, so the whole thing will have happened in a week. It's getting awfully expensive — had my hair cut ultra short on Monday, and reckon I will have to have it shaved on Friday. I was a bit freaked out at first — it's really alarming running your hand through your hair and handfuls coming out. Makes you look sick, feel that you are dying, etc, which I am not — it's simply a function of high dose chemotherapy. Anyway, I am now used to hoovering the bed every morning and it's easier to cope with very short hair. Meanwhile, I am asking everyone I know to buy me a hat. I hope I don't frighten the children — I imagine I'll look pretty weird. Just as long as my fucking eyelashes etc stay in place.
Anyway, at my non-chemotherapy session yesterday I learned three things.
1) my tumours are hormone receptive (quite unusual in younger women) which means Tamoxifen is an option if the chemo doesn't work, though it means I will go into the menopause 2) My primary tumour may have shrunk by a centimetre or so, though there is a huge margin of error using a tape measure (sophisticated or what) 3) I fancy one of the oncologists — pure transference, like falling in love with your therapist, since he is not at all attractive though very funny and looks a bit like Dr Green in ER. So that's mildly exciting.
Can't remember exactly what I said to you in my last fax, but the antibiotics started working within 24 hours and I now feel fine. But I definitely overdid it last month. I now realize it's hard to do anything when you're having chemo, given that you have a week of feeling really shitty and then your white blood cell count collapses and you get ill.
I can't believe Far East bureaucracy — have you sorted out a birth plan, yet? I, too, plan to spend the rest of the year having non-hair related beauty / complementary therapy treatments, going shopping, reading novels, etc. Can't believe Fred's bilingual verbal dexterity: Joe and Lola will be grunting for the rest of their lives, at this rate.
All love R xxxx
E-mail to Carrie, 2 December 1996
Dearest, dearest Carrie,
Chemo was vile. I don't fancy Mr Miles any more, since he flirts with all the sad old ladies and I am obviously one of many. Imagine four days of the worst hangover combined with the worst flu, where you can hardly move, feel poisoned, and are half-asleep but not pleasantly out of it all the time. Felt too wretched even to listen to the radio, and didn't want any cheering up from hovering mother and husband. Managed to get up in the morning with the kids for a bit, ditto post-nursery, and that was it. Self Pity Inc. I was only sick once (different anti-emetics), had a smaller dose, but it felt worse (cumulative effect). Uugh. Thank god you can't remember pain (otherwise you wouldn't be having another baby). Four more to go (at least) and I don't even know if it's working. Not sure why some people respond to it and others don't. Must ask if there's a relationship between devastated white blood cells and devastated cancer cells.
Meanwhile, the Ghost press sale begins on Thursday. Do you want some fripperies sent by Fed Ex? E-mail me immediately.
All love, R xxx
E-mail to Carrie, 17 December 1996
Thank you for the divine stockings and JOE and LOLA stamps which they will love and, no doubt, decorate the walls with. Lola is currently an obsessive doodler and cutting a molar. Poor Joe on antibiotics again, for ear infection and terrible cough. Both permanently ill (must buy vitamin drops) and talking gibberish.
Matt has perked up, after seeing the breast unit therapeutic nurse. (He'll be seeing her fortnightly from now on.) Also he had a day off the work / childcare grind on Saturday, going cycling in the morning, and to Porchester Baths with Garry and his brother Mark, David and Charlie, to compare willy sizes in the afternoon. But he is being amazingly unsupportive and egocentric — he left for work this morning without saying good luck (chemo this pm). I guess he doesn't have anything left over at the moment. Mum thinks he's in denial, which he probably is, too.
I have been to see a complementary medicine guru recommended by a journalist friend of Justine's who recovered from skin cancer and has been extremely helpful. He is suggesting a whole programme of treatment, ranging from vitamins to low level oxygen administration. In general, what he said made sense ie not 'I'm going to give you shiatsu to make you feel better' but 'You've got a 50:50 chance of survival; Guys don't know why some people survive and others don't; we're going to make sure you are one of the 50 per cent who do.' The downside is he is a money grabbing wanker, who is charging 2,500 pounds for the first six months' treatment. Matt thinks it's a waste of money and would rather we went on. holiday to South Africa and redecorated the house. Ho hum.
Dad is over and all is well because (a) Anne is here to jolly, him along and (b) they are not staying with us. The other exciting news is I went to Justine's Chinese doctor (not a poncy Hale Clinic type place but funny old men mixing herbs in Camden High Street) to get Joe's eczema looked at, and who should be seeing Dr Lily before me but Princess Diana. She is stunningly beautiful in the flesh. Went to see Evita the movie, starring Madonna. Quite stirring, once you stopped being embarrassed by the fact that it's a musical. Eva Peron died of breast cancer and guess what: the c-word isn't mentioned once. The great unmentionable.
All love R xxx
E-mail to Jamie, 3 February 1997
Apologies for snail mail paced response: I get so little e-mail that I forget to check it. How are you? I have chucked in the chemo after four cycles (supposed to have six) because it's not having much (if any) effect and I've been reacting really badly to it eg puked during last session, despite intravenous anti-emetics. I have now become allergic to Guy's — last time I went in to see the, oncologist I felt really ill for the rest of the day, even though I didn't have any treatment. Am supposed to be starting radiotherapy in the next week or two (every day for six weeks) and I' m hoping I get to have it at St Thomas's. Hey, bet you don't get fun e-mails like this every day.
Fun things about breast cancer:
1. You get your hair cut really short because it's falling out, and it really suits you. You decide to keep it that way forever. 2. You can be really horrible to people and not feel guilty.
Blah blah blah. How's work? Garden? Etc.
Love love love Ruth xxx
E-mail from Jamie, 7 February 1997
The chemo is a big decision. But I suppose it would have had an effect after 4 months? It seems to work well for some but not others. Luck(!) of the draw I suppose. My mate in NYC who has AIDS and developed bone marrow cancer has had a miracle recovery and thinks it may be his chemo. He had to take a week off each month to have his because it made him feel so shitty. But he knows someone else younger and fitter who did the same treatment who's just kopped it.
I started drugs in November after a low T-cell count (for me, nothing serious compared to lots of others, it was over 200). On the one hand I don't hold much store by such narrow definitions and anyone's T-cell count can vary by hundreds depending on whether they've got a cold or whatever. But for a year I'd been feeling out of sorts which my doctors kept putting down to HIV. They would. If I went in to casualty having been run down by a truck they'd say it was HIV-related. Anyway after only three weeks on basic treatment (AZT and DdI) they did a test to see how much virus was in my body (a viral load) and were surprised to discover I had less virus than their tests can detect. A good sign.
I've now upped the ante. I asked to go on a protease inhibitor (saquinavir) along with old AZT and a drug called 3TC. From everything I can read on the internet etc this is a good combination. Luckily no side effects as yet. The AZT depletes white blood cells supposedly and does make you a little more susceptible to colds (he sniffs, having one right now). But after lots of research I'm sticking with it. The recommended doses are much less than people used to be on hence fewer side effects. AZT is one of the few drugs that gets through the 'blood-brain' barrier (so they tell me) and can help reduce any chances of dementia. Rather late in the day some might say...
My T-cell count has gone up by 100 in four months. If after a year of drugs treatment my viral load is still undetectable and if I can boost my, T-cell count up further then I may come off them.
If nothing else it makes me feel I'm in control. There's always the chance that I might be poisoning myself but I couldn't just let the little bastard virus sit and multiply. My attitude is if I'm going to go down I'm going to take a few of the little HIV buggers with me.
Wouldn't it be great if they discovered that all either of us needs is sunshine, holidays, good food, getting away from it all and S.L.E.E.P. I sometimes feel that if I went to a Greek island and spent four months just sleeping, sunbathing and swimming I'd cure anything. Fuck it, even if it don't work I'd feel better.
BY THE WAY, X doesn't know about my situation ... (only about a dozen people do).
Lots and lots of love. Write sooner and I will too.
E-mail to Jamie, 10 February 1997
Thanks for your brilliant, long e-mail (I also, cheekily, read the short one to Matt). It feels good to have a friend who is sick too. God knows, I wish you weren't, but there's a level of connection that even the most supportive friends can't achieve. And I do not want, to talk about it with the sad, bald fucks you meet in hospital the whole time.
Re: treatment: there seems to be very little consensus among my docs. Every one you talk to says something slightly, but significantly, different about treatment. But have established that the chemotherapy would have had an effect by now if it was going to work — they take a more proactive approach at the Marsden, and routinely review treatment after four cycles, whereas Guy's seem to let you suffer for the full whack, regardless of efficacy, unless you take control. Am supposed to be starting radiotherapy tomorrow (every day for six weeks, no washing, no deodorant, eek) but I have a pain in my breast bone which I fear could be secondary bone cancer, so am going to see the docs tomorrow to review situation. (Only because my sister forced an appointment out of them.) If it has spread, I'd 'like' to try another chemotherapy regime, using taxanes (yew tree extract — 'natural' but very toxic, causing total body — alopecia!). Oh gawd ...
You queers are amazing at dealing with HIV. Do you go to counselling or what? Like you say, the fact that you have done so much research and are making treatment decisions must make you feel good. Have yet to get a web browser and find breast cancer site. Part of me is so exhausted by all the appointments and X-rays and tears that I want to switch off from the subject completely. Re: alternative stuff The number of treatments therapists is (a) overwhelming and (b) expensive but I'm dabbling a bit. Can't be any less effective than the fucking chemotherapy, and doesn't make me feel shitty. But if second chemo and radiotherapy fail, then I will be on every mad diet and consulting every bearded healer in the business.
Glad that your drug combo is going well, with no side effects. (Crass aside: do you watch ER? Jeannie has HIV and is feeling -Sick cos of drugs.) Re: blood brain barrier. I think Id rather go nuts than die in agony. Or maybe you can do both.
Doing a bit of work - in fact off to interview Joanna Briscoe (novelist) this pm. Keep in touch.
Luurve Ruth xxx
Copyright © 2000 Ruth Picardie
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