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cancer patient's blog |
by Hugh Cook |
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Section 152 Entry 0001. Date: 2005 July 07 Thursday.
(diary) (previous) (top) (bottom) (next) (topics) (contents) The toilet flushes and there is the smell of chlorine, which, for me, has become the smell of radiation. The smell of radiation is that of swimming pools and the color of radiation is violet. The chlorine-like smell is manufactured by the X-rays from the linear accelerator in Treatment Room Six. The radiation ionizes molecules in the air, creating the smell. The violet tinge is caused by the X-ray beams interacting with the backs of my eyes, first shooting from the right and then shooting from the left. Today's treatment is the thirteenth of twenty. So I'm more than half way through my radiation therapy. My forehead is flushed red as if from sunburn, and I've been regularly applying aqueous cream to try to lessen the irritation. The top of my head feels hot if I touch it and also feels hot if it presses up against a pillow in the night. My main problem is eating. It's important not to lose weight during radiation therapy but I'm finding it difficult to stomach food. I'm taking Maxolon (metoclopramide) three times a day to suppress nausea, and on a couple of days I've also taken a tablet of Zofran (ondansetron) to supplement the anti-emetic effects of the Maxolon. I'm also using an ophthalmic steroid again - I'm using Pred Forte (prednisolone acetate) eyedrops, as prescribed by an ophthalmologist, four times a day in the right eye to damp down an eye inflammation. (My spell checker suggests "red predispose" for "Pred Forte" and argues that "metoclopramide" should be "Mesopotamia".) My wife writes (June 25th):- (In the below, "water pox" denotes "chicken pox"):-
Well, I have no doubt that my daughter is both brave and strong, but I feel neither. Instead, I feel flat, profoundly tired of not feeling at home in my own body, distressingly ungrateful to be alive. Wearied by the thought of the never-endingness of the aftermath of treatment. Currently, I have a small patch of cataract on the lens of the right eye and a rather more significant patch of cataract on the lens of the left eye, these having been detected for the first time during an eye examination on Thursday June 30th. "Are they progressive?" I asked. "All cataracts, by their nature, are progressive," I was told. My radiation oncologist, Doctor Campbell, later told me ("later" being this week, on Tuesday July 5th) that the cataracts have shown up too early to be the consequence of radiation. Yes, she expects me to develop cataracts in the long term ("months, years") from the X-ray beams which are impinging on the backs of the lenses, but my present cataracts are undoubtedly the consequence of steroid use. (In addition to using steroid eyedrops, I had a steroid injection into each eye while in Japan.) Similarly, it's too early for the radiation to be having any effects on my mental competence. Again, any downside will show up "months, years" into the future. So any mental glitches that I've noticed are most likely a consequence of lack of concentration caused by radiation-induced fatigue. The fatigue is right now, and is real. I'm told it will persist for two to three weeks after radiation therapy ends. And, during those two to three weeks, my hair will probably finally fall out. Joys to look forward to. When I showed up at Treatment Room Six today my forehead was distinctly angry, red and itchy with a radiation reaction - I suppose it would be unscientific and histrionic to call it a radiation burn. The radiation technologists were concerned, and one talked me into seeing a nurse, then persuaded me to wait a little longer to see a doctor. People react differently to radiation but my lobster red was apparently a bit extreme. (It may be relevant that I have extremely dry skin.) I apologized. "I'm sorry for being a bad patient," I said. "We don't have bad patients," said the radiation technologist. But I was definitely in a "bad patient" mood, not keen to be investigated, diagnosed, advised or prescribed for. I'd rather just crawl under my eiderdown and sleep for a few days, and hope the problem would go away. Yes, a bad patient, not wanting to be helped by the kind, concerned, compassionate people around me. I shortly (considering this consultation was unscheduled, my waiting time was extremely brief) got to see a cheerful and efficient doctor whose name sounded something like "Muircroft" and who gave me a script (a prescription) for a hydrocortisone cream (one percent) to use sparingly, twice a day, on my inflamed forehead and on the diseased lesions on my forearms. For the legs, I'm advised to see how I go with aqueous cream, and, if I continue to have problems, see a dermatologist. The lesions, scabby sores which have been evident on my arms and legs for some weeks now, are probably some kind of eczema. I asked what a dermatologist might be able to do for me, but Doctor Muircroft declined to give me an opinion, on the grounds that dermatology was not her specialty. I also got a prescription for thirty cetirizine tablets, "anti-allergic" tablets marketed under the name Razene. ("Raze?" queries my spellchecker.) The small print includes the information that each tablet "also" includes, amongst other things, talc and titanium dioxide. The real fascinating bits are the details, right? Home from hospital by car in the rain. This afternoon, my parents went out to a musical appreciation event, while I stayed home and played a CD and watched my screen saver sift through the memories of my life, surfacing pictures from Kyoto, Tokyo, Japan ... surfacing other seasons, other years ... rain outside ... a gray universe of clouds weeping ... I made a note today about my daughter, she "for whose sake I vowed to survive". For whose sake I vow. Section 152 Entry 0002. Date: 2005 July 13 Wednesday. (diary) (previous) (top) (bottom) (next) (topics) (contents) And in the morning there is the ritual of the combing of the hair, the gray - it started going gray when I was in my twenties - thinning toward a kind of war-relic brevity. This morning I sat on the edge of the bed leaning forward over a wastepaper basket, so any strands of hair not caught by the teeth of the comb would fall forward into the basket. Wiped a swag of gray hairs off the comb with a white paper tissue, enfolding them for disposal, destruction. The teeth of a comb ... The tines of a fork ... The wind outside, combing the local universe ... I'm not conscious of mourning the loss of my hair, but I did dream last night that I had big hair, really thick hair of a really deep brown, and I needed a haircut urgently. Having a haircut was involved, somehow, with establishing myself in a new life. The day cheered up when I got to the hospital, where, after my radiation therapy treatment, I had an appointment to be medically reviewed by a Dr. Anna Bashford in the oncology department. We discussed my petechiae, my rapidly-fading dots of internal bleeding, in the light of the results of my latest set of blood tests, done on Friday. The results of the blood tests were perfect, everything in the normal range. Platelets at 211, for example, and hemoglobin at 136. In the light of these perfect results, it seems that the petechiae can be comfortably dismissed as what my family doctor thinks they probably are, an inconsequential sign of some kind of allergic reaction, rather than an extremely ominous sign of far worse things yet to come. Happy to be reassured on the petechiae front, I tried to describe the nerve damage I've noticed in my toes since the end of chemotherapy, damage that I attribute to the chemotherapy itself. I still feel pressure, heat, cold and pain in the normal way, but when I crinkle my toes there's an odd fuzzy feeling. Dr. Bashford came up with the happy term "woolly feeling", which captures it rather well. The prognosis? The nerves may recover over the next year or so. But perhaps they won't. If they don't, I'm not fussed. The damage is something I can live with. I simply needed to be reassured that it's a known element, something that other people have suffered from. (My father, incidentally, says that my Aunt Joyce, who tragically died from the disease - non-Hodgkin's lymphoma - that I'm planning to recover from, suffered from the same kind of woolly toes feeling as a consequence of her own chemotherapy.) Somewhere down the track, I'll probably have physiotherapy to tune up my muscles, particularly my wasted thigh muscles, which have suffered badly from steroid use. But physio is something I'll probably discuss with my radiation oncologist next week, at the end of my radiation therapy. Also, at some stage yet to be decided, once my brain has had a chance to settle down in the aftermath of the radiation, I'll have another magnetic resonance imaging scan to see how things look. But, at the moment, all I have planned with the oncology department is another medical assessment in six weeks time. (I came away with yet another form for blood tests which I will take to a local laboratory the week before the assessment, so the results will be on the hospital computer by the time I show up.) Dr. Bashford approved of the decision which has been taken to defer, for the moment, the vitrectomy which is planned for my right eye. Removing the jelly in the eye to get rid of the cancer junk is something which can happily be left until I have properly recovered from chemotherapy and radiation therapy. As measured on the oncology department scales, my weight, fully clothed, was 73.5 kilograms, down perhaps half a kilogram since I started radiation therapy. Not bad, all things considering. Anyway, I came away happy to have dismissed the petechiae from my imagination, and generally pleased at the way things are going. |
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