22. Dec, 2015

I have a Christmas tree..... attempt to track down small one, not easy, though immediately I'd compromised by buying a not small enough one and lugging it home on the bus, there were really little charming ones everywhere I looked..... Sods law. Anyway, tree is home, decorated (with alas new decorations, the old having been abandoned a year or two ago in Lanzarote) and is pleasing me even as I write this. As it does please me, even despite Himself saying, why do we need one? Just for us. And cynical friend backing him up by saying 'Aren't Christmas trees just for children, like Christmas stockings?' Well no, actually - speaking as someone who had a Christmas stocking till around the age of 60, latterly provided by my children rather than a man fired by reindeer.... As for the tree; yes, well, always. Even if I don't keep traditions as thoroughily as my aged dad who around the age of 90 or so, said in tones of deep tragedy round about October, 'there are no berries on the holly this year - what are we going to do at Christmas?' So no, I don't put holly above every picture, berried or otherwise, the way he did, all the Christmases of his life. And as for paper chains..... forget it. The tree is quite celebration enough. But I love it. So there. Himself will just have to put up with such excess and anyway quite likes it really once it's there.

I am reminded though of one strange ritual of my childhood, perpetuated by my otherwise honest and upright parents.... We never bought our tree... we stole it; heading every year with a spade for the nearest plantation and digging it out, one or other of us children keeping guard against anyone who might catch us. Quite what motivated my dad in this I never quite fathomed. Was it sheer bravado- some lurking Just William Brown in his ever balder head ? Or some weirdly socialist, not to say Robin Hood belief in that otherwise Tory mind that noone - even someone with a plantation - could own a tree? I really don't know. But there we were every year digging one out with our guilty spade. As my father knew all the local landowners, it would have been more than embarrassing had we been caught, but we never were. I never did get to ask how he would have responded had we been discovered in the guilty act. 

My hair is at last reappearing. Hurray for that. But, meantime, I  still haven't decided whether to accept radiotherapy or not. Caught between my own uncertainty, and, on the one hand, by Himself's experience of someone else having had a much more intensive version than I'm offered and the ill effects of that, so setting his mind against it, on the other by the urgings of my dear psychiatrist friend, that I should have it, which she finally admitted, rather sweetly, were because 'she didn't want to lose me...'

Having been reading recently a book by a much younger woman, in which, in passing she recounts her experience of breast cancer and treatment thereof, among other things in the very same poison cafe so unwillingly patronised by me, it does occur to me that I was lucky all those years ago that so little was known. No being told that your tumour was aggressive, or not, hormone receptive, or not, what the prognosis was statistically in your case etc etc etc. You were offered treatment, on very rough criteria, and really it was a matter of your own estimation of what you and your body could take that mattered...... Chemo wasn't offered in any case. Now the book is thrown at you; having chemo ups your chances by this amount, having radiotherapy, ditto, etc, etc, etc. Your particular body, your me, is left trudging behind, barely able to keep up.... 

Anyway: it can wait till after Christmas.

Cheers everyone. Happy Christmas.

14. Dec, 2015

Phew - just, after much fiddling about, succeeded in getting an appropriately seasonal photo onto a word page to make Christmas card (to be sent via email, I'm afraid - I've gotten lazy these days and snail mail is not my preferred means of communication.) Transferring photos is a process I attempt so rarely I forget how betweenwhiles and have to fiddle around endlessly until, bingo, there said photo is on said page, where it will remain till tomorrow when I will insert the necessary greetings, etc...

Still electronic problems are a change from my current obsession otherwise - eyebrows would you believe. Exposed to the poison cafe, you expect to lose the hair on your head, what is less expected, though obvious if you think about it, is all the other forms of hair - those partly useful things  called eyelashes, and the more purely decorative, eyebrows - probably the vestigial remains of the hair that would have covered all of our faces, as in the ancestral ape. Eyebrows are appendages to my face that I've not had much cause to think about - they've always been perfectly adequate, if not things of drama, let alone beauty as with Paloma whatsit.  Didn't even think about them now given that the site is usually hidden by turban, woolly hats, the fringe of the Joan Collins, till a less than tactful but accurate friend pointed out that I didn't have any. A bit like in the mediaeval portraits where removing them altogether appears to have been a fashion statement; not an attractive look and not one I am disposed to adopt. The fact that as far as I know that it has never been a fashion statement since, give or take the odd penchant for weird pluckings, means, presumably, that noone else has been disposed to adopt it either, unless forced to via the attentions of one poison or another. 

Ever since I have been looking at eyebrows. On everyone, old and young. Perhaps I hoped to find myself surrounded by the eyebrowless - alas, I find, they are universal, thick, thin, dark, light, rampant or vestigial, bushy or discreet, as variable as their wearers themselves. I am the odd one out; not liking which, I have now reverted to an eyebrow pencil - the expensive sort, in the hope that this might be longer lasting - though alas no. After some practice I can effect something reasonably natural, at the right height, the same on both sides, more or less, but the effects of the turban, woolly hats, etc, has a tendency to remove some or all of it, the resultant flickering or displaced stripe, not natural at all...... Still I persist. It's better than nothing. Not much I can do about the eyelashes, apart from a bit of wobbly eyeliner along the bottom of the eyes. (You can see eye make-up is not something I'm particularly practiced at; the dramatic black-rimmed eyes I went in for in the 60's and 70s was abandoned long ago - it had been altogether a bit too bush baby as someone - possibly the same friend who enquired about the lack of eyebrows - pointed out. I suppose it is the duty of friends to tell you the truth, and sometimes I might even be grateful.) I can't do much about the upper lids - false eyelashes are hard to manage for those of us with set in, slightly asiatic eyes. I'm sure there's a way round this but at my advanced age I'm not particularly inclined to try - and surely fail - to look like Elizabeth Taylor in Cleopatra.....Heaven forbid. 

But oh how I long to be hirsute once more - yes there are far worse problems in the world, I know, I know, I know, but still I regret it. Not a sign of anything growing yet. But none of the sites I look up online where fellow patients inform, console, update, each other on these things seems to offer much information - and where they do it isn't always reassuring; eg 'my eyelashes etc came back.....5 months later they all fell out again.' 


I did pay a visit to the poison cafe last week - but only to leave a card and some chocolates for the nurses. It was as before, all the poor sods hanging around, waiting their turn to be called for their session in the all-singing, all-dancing chairs. You know what, I almost felt nostalgic - not for the poison you understand - but for the companionship. The gossiping with the nurses was delightful - and their care even tender;  not their fault that the poisons they administered were anything but. No surprise in feeling nostalgic for them. But the conveyor belt moves on, others take your place... a bit like life I suppose..... till we all, inevitably, go into the dark - 'dark, dark, they all go into the dark,' said Eliot.... the basis of the image was actually people on a London underground train; wondrous what an expat American poet could make of a city transport system...but the phrase is much on my mind these days ... especially when attending funerals.

(I'll go to my iPad now and find a Christmas image for you lot... not the same one... some of you might find yourselves getting it twice, which would never do.)

7. Dec, 2015

This afternoon was taken up by the Radiotherapy appointment. No crowded clinic, no wait, amazingly, we went straight in to see an entirely charming American-Swedish registrar from Colorado...... Himself and I had worked out independently from the paper we found that the cost/benefit ratio of having radiotherapy was by no means clear, and charming A-S R confirmed that 'it was a grey area.' Which might or might not in my case reduce the usual 20% chance of recurrence. So, over to me. Decisions, decisions. To be burned or not to be burned...Is that a dagger (or a healing potion) that I see before me? Those are the questions; on this island, now.

However: last week I saw two films, went to a funeral, attended a fiftieth birthday dinner for my dear son (who shouldn't have had to cook it, but insisted on doing just that) made two trips to the gym, plus another for a Pilates class, and, being old and sentimental as I am, burst into tears (practically) on hearing a choir of primary school children in red sweaters belt out "Away in a Manger' in the far from sentimental surroundings of the Westfield Centre......  en route to one of the films. (The Bridge of Spies if you're interested.)  The greatest entertainment, en route to the wake from the crematorium (usefully, if somewhat tactlessly part of a complex which includes the Richmond on Thames rubbish dump) was the sight of a bowl of dog biscuits set, in a kindly way, for dogs, outside one of the shops in the Chiswick foodie street; my lift-giver insisted on stopping there to buy his family dinner (chicken breast and creamed spinach, if you're interested in that, too). No dogs were enjoying their biscuits, only pigeons, dive-bombing gourmet shoppers as they passed up and down in order to get at the goodies. A small pleasure, but definitely a pleasure, even if I was as glad to descend on the whisky bottle when we arrived at the wake. As usual with those things, while drinking it and eating the first sausage roll I had enountered in years, I also encountered various people I hadn't seen in even more years but who I didn't recognise or they me, age having wreaked its havoc on us all. 

I am conscious, my dears, being a) old(ish) and b) afflicted still by chemo brain, that I have repeated myself somewhat a times, in the course of these effusions. Sorry about that. Himself and I of course are constantly pointing out to each other, wearily, 'I've heard that story before' - even though at times, given the same problem of ageing memories, it's useful to be reminded of said stories. But we really should try not to inflict such tiresomeness on others. I will try.

The registrar radiotherapist today, on the other hand, was somewhat entertained by my long history of life in her country - from when it was another country altogether. Being able to entertain one's doctors by having a body which is in itself a medical museum does jolly up the atmosphere of any consultation - just as dive-bombing pigeons jolly up funeral blues - especially when combined with whisky thereafter; and combined too with the insistence of the body whose coffin we were all staring at, that the ceremony should end with 'Sound the trumpet' a particularly lively, far from funereal piece: let's hope from within his wooden walls the corpse could still hear it. (I'm not sure what stage of death he would have been at, according to the Tibetan Book of the Dead, more precise about these things than I know how to be.) Nor were we treated to the sight of the coffin gliding away between curtains to the furnace, the way you usually are on these occasions; it remained sitting on its plinth as we all filed out. I think that was a relief - or maybe not. 

I'm off now to take a picture of my in-flower hyacinths to add them to this; shame I can't also add the heavenly smell, but you can't expect everything, can you?

1. Dec, 2015

Noisy buggers, birds - some of them anyway. Honking geese overhead this morning, screeching green parakeets (yes, we do actually have parakeets in London these days) on the way into the park this afternoon, a fair barney between gulls, crows and magpies on the way out....

December already. Maybe I should change the record. Last week's hysteria has subsided - one of the features of all this is the way storms can erupt in you out of seeming calm and even resignation - I'm merely left with a minor sense of shame for making such a fuss and major admiration for all those people who put themselves through horrendous treatment over and over again in order to stay alive for their families/children/husbands..... can't see myself ever being so brave, but then I never had to be (except possibly in the decision I took, aged 41, to forego the instant menopause that was then being urged on me. That seems foolhardy, looking back, but I got away with it for sure. The wiping out of my ovaries in my late fifties, well post menopause was not such an issue at all, had little effect; nor dared I refuse that, given that our family BRCA status was well established by then, and I knew of at least two women in previous generations who having survived breast cancer died of its ovarian fellow in their 60's or early seventies. I also demanded and got HRT for a few years - whoopee - an option not of course available to the poor 40 year olds of my acquaintances who had accepted losing their ovaries. The sight of their subsequent miseries was the main reason I refused to lose mine then, preferring to turn vegetarian, learn to meditate and start running instead, which may or may not have been the reason for my subsequent good health, but certainly made me feel a whole lot better in the meantime. 

At the age I am now, at least, longevity is much less of an issue - especially given that I have long outlived all the other women in my family that I know of. It's altogether easier therefore to make decisions  about side effects and willingness or not to endure them. I see the radiotherapy people next Monday, but I think they will have their work cut out to convince me that the advantages of what they propose to do - belt added to braces it seems like - outweigh the disadvantages. Even though I know how much this treatment has advanced since the fairly basic version of it I underwent 35 years ago, how much better targeted it is now, the very idea of lethal beams so close to my heart and lungs is not reassuring. As usual I have been handed a nice little booklet on the subject; as usual this is simultaneously anodyne and alarming. Yes there is a small danger of heart or lung damage it says - small danger or not, the prospect of being cured enough not to need the services of the Marsden any longer only to be forced to hie me to its next door neighbour, the Brompton Hospital specialising in Hearts and Lungs (and much less well-funded too; there are some advantages to having cancer; the friend whose sick husband finally ended up in a cancer ward at the Hammersmith Hospital couldn't get over how much better it was than any of the other wards - geriatric, kidney, surgical, whatever - that the poor man had endured over the past year or so.) Leaving aside such dangers, the academic papers I have managed to dig out don't seem to suggest large statistical improvements to chances of recurrance, increased/decreased longevity for someone of my particular disease status. Let us see. Whatever the outcome - oh how keen the medical people are these days to insist 'it is of course your decision, only you can decide - this may or not be reassuring - the services they offer cannot be applied till February, earliest. The technicians take a week or more to set you up, Christmas is coming, and in January, not having known any more treatment was in the offing, I had already arranged to go to the Canary Islands, for that other kind of therapy;  sea and sun and light. No chance of changing that, especially as I am now taking with me the poor friend of the sick husband; he did finally die, a week ago today. 'I haven't seen the sea for so long,' she said longingly. How could I deprive her of that? 

So there we go. No matter how sophisticated cancer treatment may seem these days, all gleaming hi-tech machines and advanced statistics, it is still in some respects as primitive as ever. The doctors cut, poison or burn you - often, as they are proposing in this case, all three. Cutting, poisoning, I have accepted, endured. But burning? - again? - as I return to to my Pilates classes, to the gym, feel myself striding out faster and more happily every day, breathlessness gone, fizzy feet and fingers still lurking somewhat, but not in any troublesome way, I am not much in favour of acceding to it; foolhardy as ever perhaps; or not?

The Guy of the last post by the way did not after all get burnt on November 5th - he has merely been moved from tractor to collapsing wicker arm chair in which, almost at the beginning of December, he looked more more mournful than ever. Is that a message, of some sort? Sorry I have no picture to prove his continued existance - my iPhone, complaining that I haven't much storage left, wouldn't let me take it. So you'll just have to accept him on trust.  

I'll try and find another picture - maybe an entirely irrelevant one I took last week of scaffolding in the flats opposite reflected on their windows.... reflections are always indicative of something. In this case, even though I no longer need to spend half my days prone, I haven't the energy to 'reflect' on what.

25. Nov, 2015

First the ladder; upwards ever upwards; the good news is that after four and a half weeks off poison, your writer is beginning to feel like herself again - as if she's getting her life back; never mind the continuing-to-be fizzy hands and feet (peripheral neuropathy may take a long time to disappear but the effects of the amount she's suffering from are limited; no pain when walking, no balance problems; good.) For the past two weeks she has even re-started Pilate's classes, with the added advantage that owing to her delicate {?}  state the fierce Pilate's teacher makes no complaint when she only does half an exercise, takes the easiest options and sometimes ducks out altogether. She'd be grateful for such an excuse any time - the Pilate's teacher takes no hostages; can be very fierce. Ouch. Long may the dispensation last; delicacy worth exploiting here for sure. 

Now the snake; all the way down again; the bad news is that if the dear hospital has its way, this improvement will shortly be knocked right back again. The God that is the medical committees overseeing her fate has spoken again; not because she has any further symptoms, eruptions, heaven forfend; she is as cancer free as ever. But now, contrary to all previous statements, such holy writ wants to sentence her to three weeks intensive radiotherapy, tying her to the hospital still more - a session every week day.... traipse, traipse, traipse, burnt flesh, ever-increasing exhaustion..... given the experience of dear friend, spared the chemotherapy, but only recently released from this particular treadmill, ongoing after-shadow and all, she already knows more than she wants to know about this process even without the rather different processes she underwent herself via the dread machines, more than thirty-five years ago - then as now courtesy of poor Marie Curie, of course.

This treatment of course was never mentioned in all previous consultations...... so why now? Why did this particular Holy Writ have to reveal itself at the point when I was beginning to celebrate the prospect of return to good health, physical strength and in due longed-for time, the reappearance of such precious commodities as hair and eye-brows? Now instead of rejoicing in my regained freedom - above all freedom from all medical processes after more than 8 months subject to them - my ever far-too active brain is squirrelling round and round on that all too familiar mental hamster wheel.... do I accept such Holy Writ; or do I not? I resort, of course, to the internet; papers, overviews of papers, estimates of advantages, or lack of them, relating to such 'adjuvant therapy' so-called - how I do love medical language - applied to patients like me.... It's clear, given the various medical trials the paper's cover that  there are certain advantages for say, premenopausal patients, and those with oestrogen receptive tumours of having this post-chemo add on treatment. It is not so clear in relation to triple negative, post-menopausal BRCA patients like me. Not least no studies seem to have been done on BRCA patients in relation to it - still less on patients with mutations on an unusual part of the gene, like my family's version; such populations are too small to creative significant statistics. And of course even the populations large enough to be studied are only studied in relation to their disease status - in this case patients with 1-3 under arm nodes affected. Matters of life-style, weight, general health outside the cancer diagnosis are not looked-at. Such matters are not attended to in studies of this kind. (If ever; given the well-known connection of alcohol to the causes of breast cancer, it's astonishing, for instance, that this factor has never been mentioned to me within the walls of the Royal Marsden or to my much more bibulous friend in the walls of the Charing X; alas, quite unfairly, it is a factor more relevant to her than to me as alcohol seems to have a worse affect on hormone receptive patients like her.)

I am aware that I am making a fuss; what's three weeks more treatment - within the time I've already spent subject to the medical profession - nine months rather than eight, etc, etc, etc - and haven't I had a much easier time of it than so many patients - although it does astonish me how much some people are prepared to put up with; worth it, I suppose if its cures them - but when it doesn't... (Having seen the fates of my mother and my twin sister, I've always been pretty aware that there is a limit to what I would put with - that I'd rather go easier into my own good night... even if it meant going sooner. No martyr me; my courage is definitely limited.}

So what do I do now? Having spent 34-5 years post my first bouts with the lurgy without any problems whatever, it seems I must be getting something right......in relation to those lifestyle factors the studies don't mention. So can I then take the risk of dispensing with the most recent of the holy writs handed down to me? Or is that merely foolish? Help.

Squirrel squirrel squirrel. The wheel goes round and round. Laugh Penelope - or weep. Or stop it. Tomorrow I face Tazia again to explain my refusal of the yew tree poison, ready to be handed on to the radiologist in ten days time. (I shall certainly go and see the radiologists, even if that's as far as it gets.)

Tonight, I think, unless the acupuncturist about to be visited calms me down, it will time for a large, cancer=inducing slug of Glen Morangie. Cheers everyone. Slurp slurp. Cheers.

PS. Don't have a picture of a ladder let alone a snake to hand. A by now no doubt well-burnt guy from before November 5th will have to do. A melancholy enough figure... make of that symbolism what you will....