July 30th

Ah Venice - wish i was there - even upside down

How the summer seems to be running away with us..... Just back from three-quarters of an hour walk to nearest park, plus freaked out dog not too used to cities. I'm tired now - suddenly - and have returned to my bed with this. Generally better though..... No horrid awakening this morning.... anti-emetics effective more or less. Tomorrow I start injecting the stuff to keep white blood cells up - standard prophylectic practice according to my Aussie sister who was given it through her chemo eighteen years ago, but something they keep close to their chest here. Can see battle looming, if I demand it throughout as I will; doctor friend came to lunch and told scary story of having nearly died before she was given it, her blood count having gone to zero; she had to be transfused twice. Crazy.

Another change from 35 years ago is standard offer of chemo first time round, with no evidence of spread. Then it was only given after metasteses - eg into bone or live. It was much more recently they realised, surprise, surprise that women were more likely to survive if they were given it prophylactically to prevent all that.  I would have been offered it then, after the further little alien appeared. But I'm glad I wasn't considering how even more unpleasant it was then; and given that I went 25 years without further problems. What I was offered was an oopherectomy, knocking out of my ovaries, instant menopause in other words. Which I refused. It was lucky I did, given that genetic breast cancer as it happened was/is not oestrogen sensitive; it would have been misery for nothing; having seen the bodies of other sufferers who'd accepted such treatment, vanity won out; such a fate, I considered, would be worse than death; I was after all a single parent and didn't want to stay that way forever. On the other hand I did accede to the urgings of the famous professor who'd done the original mastectomy - a much more sympathetic character than his junior. A short man the sat down besides me on the clinical bed - put his arm round me, as I remember and said, 'well there is something I can give you, it's something I'd give my own mother, my daughter, my aunt, if they needed it....' a bit like a market trader trying to sell me a fur coat..' He was a good salesman. I bought his little white pills, which turned out to be tamoxifen, the first oestrogen reducing drug, still used now, but mainly superseded by another more effective one. I don't know if it gave me any protection, given my genetic case, though I have seen recent studies suggesting it did show evidence of some protection even for people like me. So maybe my 25 years might have owed something to it - the side effects weren't too bad and in some respects made life a bit easier over the years. But since  nobody wants my gynaelogical history any more than I want to spell it out, that's enough of that.

So it was back to my energetic self-help: starting with a decision I made to take the summer off work while I sorted things out, not least my hardly believed in, but still existing fear of early death. The chief benefit I seem to remember was being happy to take myself off to the seaside sometimes to sit on beaches and examine pebbles very carefully - not a bad idea; beach pebbles can be beautiful especially if you take some home after and polish them; I still have some today kept in a Turkish metal dish which I use sometimes to think with; I love their feel. Apart from such exercises, I explored more forms of counselling and meditation - as well as alternative medications.

One form was something called autogenics: a practical Western form of relaxation invented, wouldn't you know by a German - and peddled in England by a psychiatrist and his psychotherapist wife, via private consultations and contracts with companies persuaded that such techniques taught to their employees would improve their states of mind and so their productivity....Calling it peddled only means they made a lot of money out of it; it doesn''t mean it wasn't effective. Because I have used the method gratefully - still do - I know it works; I use it more than my mantra, in fact. And I didn't have to pay either, apart from a pound in the kitty for juice and biscuits. The nice wife gave her services free to a group of cancer patients once a week. I liked her. And it. I have an impression of sunny afternoons, round a group of pleasant women, though I didn't stop around much longer than I needed to learn the technique, once I became aware that having cancer had become a way of life for some of them and I certainly didn't intend it to be mine. The final nail in that coffin was the tale of a woman who used insurance money for her burnt kitchen to buy expensive analysis of her hair clippings from a dodgy clinic in Mexico. I think a cleaned-up kitchen would have done her more good.

But that was how she dealt with her dread disease; so that's alright, even if the Mexican/American exploitation wasn't. And I liked Vera, even though I discovered many years later that she was one of two psychotherapists with the dodgy practise of extracting false memories from people about satanic abuse; false memories because no proof of satanic activities was ever proved, even if the abuse was real. She is dead now. But her husband who came up with the theory of the male menopause is still making a lot of money out of that, in Harley Street, of course. I don't know whether he still teaches Autogenics. 

  

July 29th

Not a rose - but it will do.

Not a great day but much improved from the early hours, when things were all too remininiscent of bout of the Noro Virus, back on election day in May. (So much for effective anti-emetics, God knows what the ineffective ones were like) The election lurgy, of course, was due to dodgy samosa consumed in Labour Party house between bouts of banging on doors of possible voters, rather than being acquired at hands of nice nurses, in the hustle and bustle of the chemotherapy chamber, surrounded by medical equipment, sitting on all singing and dancing arm chairs (buttons to raise/lower seat, back, footrest: I had maligned them them at first quick glance as commonplace hospital waiting-room ones; they weren't -sorry chairs). Had thought that while the poison went in, all would be peaceful, I could read, listen to music, but with the application of this and that, the endless to-ing and fro-ing, it wasn't. Nor was there interesting life to observe as suggested by my doctor friend who'd been through same process a few years back, and enjoyed watching families around the chemotherapised, listening to the talk, good social observation stuff. All I could see was the aged man opposite, who I'd encountered the day before up in the nuclear medicine place. He was clearly much iller than me, to judge from the complete pharmacy in a bag at his feet, unlike my small bag of anti-emetics, plus small box of maintaining white blood cell injections; to judge from the fact he started treatment before me and was still at it when I left at 6.45, all alone in a by now almost empty room, apart from the odd nurse. He looked blankly gloomy, hardly spoke, never smiled. His wife did the communicating when not reading her Kindle. He had nothing to entertain himself with. Maybe he is still sitting there, poor man. Oh this disease is horrible.

Home, dinner, couldn't sleep - and when I did it was largely thanks to the meditation techniques I picked up first time round after trawling through the scruffy leaflets for the other kinds of treatment not offered then by hospitals. One kind I encountered was transcendental meditation, not taught me by some big-bellied, dhotied Guru all beads and garlands, but by a middle-class, middle-aged English lady with a stern hair cut, to whom I offered a rose (I think) a clean white handkerchief and a small amount of cash in a discreet envelope and was in turn instructed in the method and given a mantra which I was told - also sternly - never to reveal. This took place in a large pillared building sandwiched between the Cromwell Road extension - a dual carriageway - and the underground line: not quite like the ashram where the Beatles went to learn the same thing. My organisation was not at all oriental, apart from the meditation technique - somewhere between Gurdieff and Rudolph Steiner, I think, a bit like a spiritual golf club, for which one had to be vetted not so much for gender, race, though possibly class, as for capacity to 'develop awareness'. Urged to attend their meetings, I went to one in a wooden floored and panelled hall with a very high ceiling among soberly dressed people, all rather older and tweedier than me, being addressed by a man of whose lecture I remember not a word, only its import: how spiritually superior he was, his audience were, compared to the world outside; I decided I preferred to remain spiritually obtuse, and never went back. Though I still use the mantra and still have never revealed it. And still feel rather sad that fierce Katherine Mansfield, one of my short-story writing heroines, got so involved with the Gurdieff spiritual stuff; the New Zealand exile I suppose, needing her guru; a bit, perhaps, like that equally fierce Rhodesian exile, Doris Lessing, seemed to need the equally suspect Idris Shar. Gurus, as you can see are not for me, wherever they come from. Have been offered several.

This was only one kind of calming exercise I sought out and got. (More on all that another time.) You can see I'm feeling better anyway to be writing this. But I shall go for a walk now to make me feel better still, with only in passing a regretful memory of yesterday morning when I went to the gym and felt so well, so well. Strange thought, really, that medicine is supposed to make you better.

July 28th Royal Marsden

A still distracting lily pond. Thankyou, Lin.

Well here we are: easy chair under me, pillow on lap, on which this is resting, needle in lower arm and extremely uncomfortable ice-cap on head. Can I stand it? Let's see - the pain comes and goes - a good deal less lovely than the rose. Worth it to keep my hair? Possibly. Am reminded of my mother saying when forcing me into some garment, hair-curling device - whatever: 'il faut suffrir pour etre belle' - ( think horribly high heels): not that my thinning hair is beautiful exactly but it is at least better than bald. Especially as one of my nightmares over the years - from which I'd  wake crying sometimes - was all my hair and teeth falling out. Entirely lovely Zimbabwean nurse who administered the device - something between Star Wars and biker helmet -assures me that the 'discomfort' which is a bit like a hot steel band clamped round your head, will ease; she's been told: she hasn't had to try the thing herself. And, by the way, the actual poisons haven't started going in yet. They take a mere 45 minutes. The cap goes on 20 minutes before and stays on for an hour after.

Never mind - have distracted myself with Johnny Cash (not helpful) am now trying Handel (better). Will now stop writing this and distract myself still further with the second doorstopping Victorian novel I have decided to use as an alternative world to hospitals and doctors. Middlemarch did a good job through surgery. Now let's try The Last Chronicle of Barset through chemo.  See you later alligator. (Poisons now at work. What fun)

27th July

A calming view..

Today was supposed to be quick in and out of hospital and thence to final chance of cultural entertainment chez Tate Modern along with Himself. But far from quick ultra sound, heart scan iturned out to be another session of high tech machine, lethal rays, involving much hanging about and insertions of not that pleasant needles -into my right foot, the arm is reserved  for tomorrow. Most of them were blood tests, some of these for the benefit of the oncologist downstairs, the rest was the insertion of radioactive substance for scan. All was made still  more charmless by nurses phoning to make sure things in order for next week's minor surgical procedure who mentioned in passing that I was also due for an oncology appointment later in the morning. This was news to me; as was fact that bloods done by upstairs technicians came down without information demanded by downstairs operatives, all of which involved much traipsing up and downstairs by me:  one half of this outfit really does not know how the other half lives, despite the fact that all are living on and round the bodies of the same patients; us.

I am ashamed to say that the usually cool (relatively) writer got quite hysterical in the early part of these proceedings; how come so much over information, on the one hand, goes along with total lack of it, on the other? Hysteria fortunately did not seem to faze, much, the nice young technician from some  European country who showed how particularly nice she was by allowing me to make her laugh - seemingly quite genuinely - once things had calmed down. Calming process was accelerated by my having to lie very still for the specified period while the beep beep beep and the  steady line on the machine demonstrated - as I knew it would - that the writer's heart is in perfect condition; for now. Technician and I parted thereafter the best of friends. Good.

Unexpected oncology appointment turned out not to be in familiar outpatient department where I went first - more traipsing back and forth - but in the medical day centre where I had my first glimpse of the site of tomorrow's first poisoning. There the unfortunates sat on the ubiquitous easy chairs, blankets on knees, arms plugged into plastic tubes: that's me tomorrow. Shame it's all so communal - though friend Christine pointed out that such sociable conditions made it very good for people watching. 

Waitng area the usual quite decorous not to say upmarket refugee camp. Though come to think of it the rather toothless and decidedly scruffy man sitting next to me, playing very loud music through headphone- who turned it down, kindly, when I asked - was not unpmarket, exactly, The wait was lengthy as usual. An hour and a half. The oncologist finally arrived at was impenetrable and impervious to charm, jokes or anything else: she was also in a tearing hurry, another clinic due: which did not stop her reiterating again, at length, all possible hideous even fatal effects of the treatment despite my protests that I'd heard it all before. This was in aid of course for my signing the form consenting to be poisoned.Thanks to the doctor friend I was able to bring up issue of the white blood cell raiser to which she acceded at once, given the port insertion next week at the very stage in which white blood cell count goes down: but only the blood-cell-raising kind that has to be injected over five days: when I asked why not the pleasanter single injection one, she said 'The Marsden does not offer that. ' 'Why not?' I asked. 'Is it too expensive?' 'You've answered your own question,' she replied. All this does leave me wondering why, unless you research these things yourself -or have doctor friends - no one tells you such resources exist. Waiting it would seem till your blood count goes so low you are practically dead before offering this relief. Certainly it pays to be proactive. 

The one point at which the automaton cracked, smiled, was when I told her about the Charlotte adaptation. She actually seemed interested, looked directly at me. Even indicated I think I might be allowed the white blood cell raiser again then, while I was working on it in September. How good it is to have an interesting excuse.... Lucky me then.

That was it. Off I went to my comfort of choice, Carluccio's Bicerin, coffee, cream and chocolate. Other comforts: a familiar Leonard Cohen song  from busker in underground , even more familiar Tom Paxton one at Westfiele. Oh and enchanting panda triplets on Channel Four News. Pleasures for a simple mind perhaps but pleasures. Himself and I will go to the Tate tomorrow morning instead for more high-minded ones  - a last fling before the poisons get to work, at 3 o'clock sharp. My iPod is charged up . 

July 26th

D day nears- and it's raining; again. Down on the farm now - out in the yard are 14,3 day old piglets plus mother, all enlarged and sagging teats like a prehistoric fertility symbol. Not that I have ventured out to see them this morning. Too damn wet. So have spent these hours reading Observer online and listening to Desert Island Discs and Womad (Himself has fled to his desk in the bedroom, not being such a music/radio addict.) Thus I choose to waste my time, though sometimes I think that at my age, whatever I die of it will be a long time sooner than most of you and maybe I should be more productive.... Too bad. It is Sunday after all...Now I write this, possibly as time-wasting....Or possibly not - though certainly more virtuous than sniffing coke off the breasts of a prostitute as being reported on the news this very minute. What lively lives they lead in the House of Lords.

Contemplated much overnight the exciting prospect of September's staging of my best known book, Charlotte Sometimes. Despite the song made out of it by the Cure, despite endless attempts by film makers, stage directors, etc etc to put it on stage, screen, this is the first time it is actually to happen; after 35 years, let alone after the 45 years since it was published. I was young then but now well passed the age of the women members of literary societies that I used to look at with dismay when dragged to this meeting or that a few years before when barely out of my teens. It all feels wonderful. Not to say exciting. Even if it is as yet a very small production, to be staged with four actors in a 50 seat studio theatre attached to the Oxford Playhouse. If, even then it did teeter on not happening over the several months before the Arts Council came up with the money to pay a playwright to adapt it. 

And now here it is. September. And I am bidden to meetings with directors, designers. workshops, rehearsals, and fIve days of performances. Great. That's the upside....

The downside is.... I will be in the middle of chemotheraoy, though periods when your white blood count can go so low you are prone to catch every infection going, so that you are urged to keep away from social events, public places, buses, train..... theatres.... Oh dear, oh dear. Especially come to think of it in a month when children go back to school and colds etc start erupting,

Contemplated answers to this dilemma..... Quick word to oncologists to say: no chemo in September.  They won't like this - in their eyes, reasonably enough, my identity says chemo/cancer patient;  their job is to cure me as quickly and effectively as possible. Whereas for me cancer patient is some way down my list of identities, at the top right now is WRITER and what's more writer determined to enjoy this new theatrical experience to the very full. The second option or answer is as follows: whereas in my early days there was not even an effective anti-emetic, let alone any drug to counter the drugs' effects on white cell blood count, there is such a drug now, according to doctor friend who was given the earliest version four years ago. It has to be injected daily in its earlier version: in the later which I discovered online, one injection after treatment will carry you through the whole cycle.  As a Johnny-come-lately among drugs it will almost certainly not come cheap.When I see an oncologist - Tuesday 3pm - groan - I shall pop the question suggesting marriage between me and the expensIve one. Wish me luck. As with the subsequent insertion of poison. When my twin sister had her first chemo twenty odd years ago I felt, though eighty miles or so away from her at the time,  nauseous for days after. But of course I'm not suggesting that you identify that much. Just the odd good luck charm wafted virtually my way will do. 

July 24th

A very wet day - how I used to long for one of those when living on Himself's chosen desert island surrounded by sunburnt hills: I had to come back to England to drink up the green.... Never enough though to quench my always acute Lanzarote thirst.

Today, rain and all, has been another respite day. I did have my haircut, but it wasn't so arduous - nice Barry refused to give me the austere crop I'd expected, urging me to try the hospital offered ice pack first. So I still look like myself: whether that's desirable or not, I settled for it happily. Then went off to lunch with dear friend in second floor flat on the corner of Ladbroke Road; to encounter from her kitchen window a sighting of the last thing I'd expect to see in a London street: namely a Noah's Ark worth of farm animals being disgorged from a horsebox and led into the garden of the expensive block of sheltered housing cum nursing home opposite. A pony came first, then, encouraged by a pailful of fodder, two sheep, two goats, a kid and two lambs: all very clean and pretty. Hard to imagine what they were doing there. On my way home, through still pouring rain I peered into the horsebox and found yet more Noahish occupants: two spotted piglets, two ducks, a goose and some chickens....WHAT? ....The two nice girls in charge of the menagerie appeared now, in time to enlighten me - their backs read 'Millie's Ark, indeed, and, from a working farm in Hampshire, they ran a side business of taking animals around for the inspection of young and old, in schools and care homes. A lovely service. But the inhabitants of this care home can't have had more pleasure out of the dear beasts than I did...and I didn't pay a penny for it.

This evening summed it up. I watched on iplayer a documentary about Melvyn Bragg that included a clip of his wonderful interview with the dying Dennis Potter:  -the one in which asked how he saw his younger self Potter replied 'with tender contempt'...Here he said 'Things now seem both more trivial than they've ever been and more important'....Though I'm not dying as far as I know, not yet, that made particular sense to me, too, at the moment. Oh those sheep and those goats....those spotty piglets, that upright goose and long-necked ducks - all of them. In that wet city street, it felt like they'd turned up from heaven. 

July 23

Rest in a garden - plus teapot -not me but this photograph indicates a much better day than yesterday and a much more cheerful writer. The wig and its accoutrements lurk in two black - tactfully unlabelled - bags in my room. As they will remain for as long as possible. I meantime played hookey with dear American friend and took a train to Sussex to meet her, eat delicious lunch in a pub garden with view of downs, then was swept off to Vanessa Bell's Charleston Farmhouse. Fancy stuff - spectacular and not too groomed gardens and then this: two people under apple trees with red teapot: pure, 21st century Impressionism. Hospitals seemed a long way away. I guess the melancholy I've encountered is in part the dread and uncertainty of the next few weeks. But I was eased by such pleasures - mine and other people's - today.

Chemo, of course,  is an aspect of the cancer world I hadn't encountered till now - it will I hope be more effective than the things  I poisoned myself with in 1981- mistletoe juice anyone? - apricot kernels? - cyanide to you - touted by the underground alternative world, information on them  passed round via little leaflets as I remember, though how I first encountered such leaflets and information, God knows: no internet then. It was all very hand to mouth and more or less un-acknowledged by the orthodox establishment.  My wonderful doctor did say she was baffled by the way people she thought bound to survive cancer did not and vice versa and that in all events investigating and following things up for yourself, couldn't be bad; she agreed to prescribe the mistletoe stuff at least - it was provided by the NHS funded homeospathic hospital, after all. But she did jib at the apricot kernels. As did I after some experimentation  and much nausea. Cyanide is not good for you, surprise surprise, whatever some rogue clinic in Mexico claimed... No doubt at great profit to itself.

July 22nd

London though as crowded as ever is taking on that  psychically rather abandoned feeling it takes on when schools are out. People are beginning to go away and in a week or so my beloved swifts will be off again too. But maybe the abandoned feeling is as much in me. This week is for getting practically sorted out before the dread chemicals start invading my head and body. Yesterday was the dentist who said he couldn't begin to think of any root work till the chemo is over (thanks for small mercies), though he would like an X-ray or two, which I said I couldn't even think of given the amount of recent radiation inflicted on me. So all he did was clean up gums (uncomfortable) and teeth (ticklish) - exactly what I had come for because another dread consequence of the dear treatment is mouth sores, these less likely in a clean mouth. 

Today was not so physically uncomfortable - when is even the mildest dentistry ever anything else- but psychically a hundred times worse; a visit to the wig man - rather grey and crumpled gay fellow who'd turned to this business from hairdressing. I had been contemplating going instead with local religious fashion - i.e a hijab: in Shepherds Bush this would be conforming to the norm. But then couldn't quite imagine visiting the local Islamic shop ('wear your hijab with pride'!) - suppose it would be disrespectful or even blasphemous for a non-Muslim to wear one because temporarily (I hope) bald? Not that blasphemy is high on my list of sins you realise, on the other hand I do have a lot of hijab-wearing neighbours and I don't want to upset them. I suppose I could ask for their instruction in how to tie the bloody things. But then again maybe not,

So meantime it's hats - on order- or the bloody wig. I tried on several, each of which looked to me unmistakably wig-like and definitely depressing, like a little animal for the head. ''They make you look younger,' said my friend Christine, who had kindly arranged all this for me and come along to advise, but that wasn't exactly comforting either: my aged face in the mirror under my own hair was even less comfort - the more so because the upgrade of hair-colour needed is not worth spending money on just now. True my hairdresser, Barry, who will be the last of my preparatory appointments on Friday, told me I might keep my hair if I put up with discomforts of the ice-cap while the chemo is going in: in which case the trial of the visit to the wig man, let alone the cost of his product will be in vain. Let us pray. Or weep. Or go and make corn dollies. Whatever.

Not a glamorous actor in sight chez wig shop - they must all at the moment be enjoying their own hair. There were merely glamorous photographs lining the walls with models in wigs - every one a bit distressingly Joan Collins. Even my wig looked a bit Joan Collinsish on me, but for the face. Maybe I should get a fake face too.

No picture today. Imagine a burka - full face covering: just what I need..  

July 20th. Dank London.

Himself in unhorticultural mode

Well here I am back home, plus expensively replaced phone - confronted by pile of mail, most of which is from the Marsden, setting out appointments for processes I neither want nor asked for, but which appear to be de rigeur; have distinct impression that next Monday I am expected to be in three places at once, but I daresay that will sort itself out between neuro-imaging dept, blood-taking clinic, and  history taking nurses, all in preparation for start of insertion of noxious chemicals on Tuesday ...

This much is clear: noone knows exactly how any one person will react to said treatment; being fit and healthy to start with seems no protection against the Scyllas and Charybdis of possible physical damage - the worst being heart damage on one the hand, leukaemia on the other; neither of these afflicting more than 1% of patients receiving treatment, admittedly. But who is to say who forms part of that 1%? Once upon a time you would not have been told of such small likelihoods but I suppose it is better that you are. Or maybe it just means the doctors don't get sued for giving no warnings; cynicism - mine - rules here.

I am reminded of a walk I used to take by myself with my dog as a child - aged 10 or 11 - I doubt any child would be allowed that now but I was, despite the far from stranger dangers I imagined on either side; dangers which imaginary as they were gave me bad dreams. On one side of my path rose an innocent green slope containing a low doorway, hiding, alas, not some fantasy Tiggywinkle but rather machinery related to an electricity substation, makng the hill throb in a sinister way. On the other side, beyond a stream, stood a much steeper and taller wooded slope, from which more often than not came the hideous shriek of an equally unseen chain saw; neither of these actually harmless machines disturbed me enough to stop walking there; I had my dog for company, a large, woolly and rather scatty poodle. But as nightmares they did disturb my sleep for years and years. Let's hope the medical Scylla and Charybdis turn out equally harmless, only nightmarish now in this limbo time of waiting. I comfort myself here with the equally remote chances suggested beforehand of being blinded by cataract treatment: and what a miracle result that had. SIGHT!

The holiday was blessed relief from all the cancer stuff, even if it did rain a lot. Larks sang above the coastal path; round the island which destroyed my iPhone  buzzed vast numbers of little sea auks - puffins, razorbills, guillemots - like swarms of oversized bees - or undersized robots -amid the sea noise. There were vast lily ponds further south toward Tenby round which through woods, we walked on a perfect afternoon, admiring at one point the rather gelatinous copulation of two large water snails in the water below us, an activity decoded by an efficient pair of binoculars on the one hand and Himself's zoological expertise on the other. On our way home, through another  perfect day, we went to the Welsh Botonical Gardens, somewhat less perfect than they might have been because it turned out to be the day of the summer garden party given by BBC's Gardeners' Question Time, not quite the natural habitat of Himself and me. There were little tents selling plants and rural artifacts, brass cum wind bands thumping out English music and folk musicians wandering about playing violins and accordians, not to mention clumps of eager gardeners around the clumps of bushes and plants, being instructed in matters horticultural. There was a physic garden too; containing guess what, a mini yew tree, no less, a helpful label explaining that its needles contained taxol, now synthesised as a drug for use on cancer patients..... something I would have preferred not to be reminded of...it does seem sometimes as if there is no escape. It was a lovely place otherwise,  decorous frolics, horticultural delights, BBC and all.

July 17th

There should be a picture of puffins - but owiing to totally unforecast downpour P's phone with puffins got totally trashed on the island of Skomer; hence no puffins. Problem exacerbated by staying on seemingly remote farmhouse between Tenby and Pembroke which has neither phone signal nor accessible linternet: this is being written in a pub overlooking the seafront in Tenby, a very very pretty town, by the way, and, despite an overload of cafes, much more peaceful than the farmhouse; that appears to be situated in a quasI war zone - thumps of tank fire, rattle of machine guns and roar of diving jets from military installations nearby. Guidebook description of idyllic farmhouse - gardens, horses, bantams etc, forgot to mention this. Not exactly welcome in the middle of P's own medical warzone, from which the smoke, fortunately, has just about cleared. Before phone was trashed calls from the Marsden came setting dates for first chemo session, plus ultra sound heart scan to check cardiac state. Meaning cancer might be staved off, only to be replacd by heart problems due to all the dodgy chemicals about to be pumped in. What fun. Holiday in betweenwhiles pretty good, if hard on the feet. Much walking - as in picture - much raIn too and fair amounts of sun. Whatver  state P may come out of treatment, she will go into it fit and well. Puffins - if unillustrated - were delightful too.

July 13

Polite drink overlooking the ha-ha..

Overlooking estuary in West wales....dog chasing seagulls. A long way from hospitals indeed but it doesn't stop the need to project manage treatment. Messages to breast nurses to find out please when chemo is to start; for instance. Good to be away from it meantime even if it has been raining hard and I slipped on the coast path and banged knee and backside, hard. Arnica for ever ...Very  polite lunch yesterday, a world like my parents... Not mine - apart from food being much better;,no Moroccan flavours arrived in parental Sunday lunch, for sure. Off to whacky hotel this evening. Memo to self; try breast nurses AGAIN,

July 9th

Don't ask. This just is.

Well 7/7 is over - a date which also signified the birthday of my brother. He did not survive more than a year after seeing his celebratory date turned synonymous with tragedy. Probably as well.

I meantime remain in the grip of the NHS at its best and least efficient. Following total silence from the Marsden as to chemotherapy or as to the ECG I was told I needed because of the possible ill-effects of the poisons on offer, my GP and I between us fixed the latter problem with the help of the GP open ECG clinic at St Mary's - a more or less door to door trip for me...Out of the door at Paddington, past unlikely looking narrow boats on unlikely looking arm of a canal nestling up against peripheral buildings crowding the hospital. ECG clinic was tucked into one of those jumbled and narrow set of low corridors that older hospitals abound in, like basements more or less but at ground level. No waiting. Into the usual kind of cell summoned by a friendly middle-aged woman of uncertain origins and somewhat short of teeth, who invited me to undress without remembering to suggest I shut the door (I did it) then plugged my chest and belly with sensors with tear-shaped blue tops, till my flesh was a surreal map full of mini-lakes. Meantime we discussed breast cancer - hers 18 years ago and mine now. Oh we get everywhere, we do. Heart perfect, as expected. But what efficiency - due reading carted next day to Marsden which somewhat less efficiently didn't seem to know what I was doing there, until I explained I thought I'd come to have the wound checked and, by the way, I hadn't heard a word from the oncologists about the ECG - no longer an issue - let alone date for first chemo session, what was going on? Seemed I had, once more, fallen down the crack between surgery and oncology; lovely young surgeon with whom I am now very friendly, and equally lovely breast nurse promised to sort it out. Meantime did I know that the compromised veins in my arms - compromised due to removal of lymph nodes - would not cope with the 8 sessions of poisons to be pumped through them, so I would have to have something called an implanted port in my chest wall, involving general anesthetic and minor surgery... does it ever end? Much telephoning trying to fix date of said procedure; it cannot, alas, be had till after first putative chemo session, for which the compromised vein in right arm will have to serve.

It all means yet another session at the hospital tomorrow to meet the implanter; this follows session with dear friend to order wig from actors' wigmaker. The man who cuts my hair - whom I rang later for an appointment for necessary shortening - says I might not need it; ice-cap can work as he had found with some of his clients. Well let us see. I'll get a wig in case. What a merry round I am leading - though post inefficient meeting at Marsden I did see a wonderful exhibition at Tate Modern: at first innocuous seeming pastel stripes turned, given close attention, vital. Just what I needed; mixture of calm and energy; hope I too can achieve that over the next hard months. I shall try. Meantime anyone who can, go and see Agnes Martin. Please.

July 7th

the point of this is that is has nothing to do with either tennis or cancer...

Right - so why I am crazy enough to love tennis? I tell you why - I think. I am a story teller, maker of human narratives..... and what is more narrative than a tennis match in its gladiatorial way? Leaving aside the pure beauty of some play - that you could say is its fine prose and its poetry  - the way fortunes rise and fall, the drama swings first one way and then the other... the end of the story often not certain till the final moments... that is story - its drama seeded by the little domestic moments between games when the players throw towels over their heads, fiddle with their shoelaces, swig drinks, eat bananas, the kind of telling banalities which story tellers use to slow the pace, keep their audience waiting...rack up the tension..

Well that's my excuse anyway..... a pretty fancy one. Oh but why should I want to excuse my love of this enchanting game...?

Back to bloody cancer. Yesterday I despatched my email to our lovely MP, Andy Slaughter, asking him to get the Ministry of Health to explain their removal of annual mammograms from 70 year old BRCA carriers - (not that any change of policy would help me... What use mammograms to one who no longer possesses either breast?) But guess what, didn't I say our MP was lovely. Back came an email less than 24 hours later saying he would look into it, ask questions of the Ministry... Let us pray

To 34 years ago; April 1981, fourteen months after my lumpectomy. Under my arm, another lump; back I went to the hospital, to the same dispiriting waiting-room with its hard chairs, brown walls, depressed-looking people, desultory fish tank and insanely upbeat receptionists. Result of consultation. Said lump was suspicious, would have to be removed. It was at this point I ceased to be the good, obedient patient; at this point I decided at last in my fear and doubt to start taking control - as far as I could. It was quite obvious the new tumour was not a good sign, though I tried to deny it. No godly breath from benign hills this time; my dreams were black as pitch.

I remembered how the anaesthetic had wiped me out last time  So I said I wanted the new alien removed under a local one; not general. The young surgeon assigned to do the job did not care for that one bit - it meant he could not flirt with the theatre nurses I suppose or make lewd jokes about my body. He liked it even less, when I suggested, tentatively, that I'd be interested in watching what he did - because I would have been. As I've said before, intellectual interest is one of the few means of entertainment in all this. His response was what can only be described as shock/horror - I might have suggested watching a dirty movie. A thick blue cotton curtain went up between my head and his hands digging around in my armpit. It wasn't a particularly pleasant 20 minutes I must say; but at least at the end of it all I had was a sore arm, and no week's wipeout from the general anaesthetic.

And then the wait for the result. I went into heavy denial; this lump was innocent I told myself, black dreams or not. Back I went to the dreary waiting room, and then an even longer wait in one of the little cells. Young and arrogant surgeon, my old ?friend, appeared looking peeved. 'These technicians,' he said, 'if they only knew what it was like for someone like me when they keep you waiting for their results.' I looked at him in amazement - such amazement, that I didn't manage to  say, 'what about people like me then?' But on he went, not looking at me - he didn't look me once the whole time he was pronouncing what he clearly thought was a death sentence; the tumour was malignant of course. "So what now?" I asked. 'You'll have to come back for that,' he said. 'Maybe a pill or something.' And that was it. Out I went into the waiting room, mostly empty now. 'Alright then?' asked the relentlessly cheerful receptionist. I wasn't playing that game, the one I was supposed to play. 'No,' I said, 'I've got cancer.' And out I went, into the street. No nice nurses to pick up the pieces in those days; no offers of counselling, aromatherapy, acupuncture; shoulders to cry on. The way you feel at this moment you might as well chuck yourself under a bus. 

I didn't chuck myself under a bus, I found a phonebox and called up one of my best friends who said come over. Now. So I did. Then I had her shoulder to cry on. But what about all the other women dumped in the street like that, with an assumed death sentence? - you wouldn't do it to a dog. That was the worst of that other cancerous country, all those years back. They do things differently now.

Anyway; the pure rage such treatment generated in me was useful - it blew me straight into the world not just of the cancer subculture, both mad and sensible but also of working it all out for myself. More about that another day.

July 5th

another cheerful lady - with offerings...

The astonishing thing about now - all things considered - is how happy I am. Partly that is because in consequence of time - it's nearly 4 weeks since surgery - all my energy seems to have come back. I suspect that aromatherapy and acupuncture have helped too. As has a particularly nice weekend in London with Himself: amazing ballet on Friday night - Indian- Kathak dance meets Flamenco in the persons of two of the best ever protagonists - followed by an afternoon of tennis (via my sofa) yesterday and a trawl round the Barnes Wetland Centre this morning- imagine walking among reed beds, round lagoons, on woodland paths, barely three miles from unrestrainedly urban Shepherds Bush. You can see why I love - still love - London, despite everyrhing being done to wreck/homogonise it.

I live in a second floor flat in a council block - several owners on from the council tenant who first bought it thanks(?) to Margaret Thatcher. Part of me feels it should still be lived in by a council tenant, but I've been told that selling it back to the council would not wash. And in any case I do like it here very much. This is a small estate, with two ten story blocks, one of which I live in and some much lower-rise property all around, part council, part housing agency and part now private. It was first put up in the late 60s at a time when it was not thought that only the rich deserved nice places to live in, surrounded by trees and gardens, close to very good public transport. The trees I guess were planted at the same time the blocks were built. There's a beech tree at the back, birch trees, acacias, a sycamore, ornamental cherries, several others I can't name and above all a wonderful lime tree which I look out on directly; in autumn it is spectacularly golden. In summer the trees hide most of the housing around. You can hardly hear any traffic noise. Last night Himself and I ate out on our balcony; I stayed out there, watching sunset converge on the sky and clouds. Such greenery of course brings birds; wrens, goldfinches, blackbirds, great tits - I'm sure I saw a hedgesparrow one day: and, of course, pigeons, crows and magpies, as well as swifts all over at this time of the year. The goldfnches were twittering away last night, the swifts up there skittering high and low, screaming; a blackbird singing. Children were calling out - the faint noise of traffic muttered behind them - I didn't mind that; I like the combination of urban and wild life. I must have stayed there for half an hour. Doing nothing, just listening and looking as the clouds turned red and then faded; until it was dark.

Sorry about the nature notes. This post is about happiness really. I am still as ever, dreading what's to come - angry - 'you can always try audio books' said the shiny oncologist, helpfully, when talking about brain effects of chemo - I still seethe about that. No, no, no; cancer patient, chemo receiver, that's the least of me. I will continue to read and write, no matter what. Some nice abridged audio book? (I know about audio books; I once earned some much needed cash abridging them). FORGET IT.

Anger has served me well, though, over the years. It acted on me like rocket fuel, when I encountered a tumour for the second time, thirty four years ago, zooming me into activity of all kinds over another, extraordinary summer. More on that another time.

July 3rd

Falafels for lunch ..bought by the two oldest friends..

Social - and hot - in a meteorological sense - what other sense could there be for a woman of my age?  Breakfast with one friend yesterday, dinner with another and lunch today with yet a third - though that was more of a medical nature: this friend - a) doctor b) ex-cancer sufferer - arranging to accompany me to wig shop in Kensington Church where actors as well as cancer patients go, though in the actors case for professional reasons which cannot be said of mine.... Who knows we might spot a famous face or two. Celebrity spotting, me? heaven forfend ...

Apart from which, energy increasing by the day - maybe rage helps especially when backed by dear old friend GP in long conversation re injustice of over 70 edict. Fuelled by this I draft long letters to genetics unit at Marsden on the one hand and lovely local MP on the other to get backing for campaign to change things.

Nicest sight of the week - one of Notting Hill's many Philippino nannies sailing down Holland Park Avenue on a scooter belonging - so it appeared -to one of her charges: she was smiling - slightly - but the slight smile was beatific.

No more for now. Belated birthday treat coming up plus Watson versus Williams on telly. Ciao for now. 

July 1st

Here's one way of cooling down...

Pilates class this morning - first in a month and sort of taken part in.... Two oldest friends for lunch - courtesy of falafels from Shepherds Bush Market - cooked by poor guys minus food and, much worse, water: it's Ramadan in these parts.  

Oldest friends left at six. Channel 4 news as depressing as ever (Isis advancing in the SinaI, aircraft advancing down our way - third Heathrow runway recommended) and it's nearly 30 degrees in this room - ( wipes brow).

Big beef upcoming, though, as follows (Sorry about that.)

Women over 70 are ditched by the NHS when it comes to screening/mammograms. When told I was on my own following said birthday, such loud protests were made - by me- that up till September 2013, as long term patient of the Marsden and BRCA1 carrier, I got my yearly check-ups. On that visit, told again that I was due  no further check-up I made more protest - they caved in: would I accept 18 months instead of a year? Here I caved in. 

18 months later, in April I got my mammogram: a week later simultaneously arrived two communications:

1) a letter saying the Marsden cannot check me again; from now on it has to be national  screening programme and at that only on request for over 70 year old  BRCA patients, (with any luck, I suppose, they hope we will forget to ask)  and only every 3 years. (Under 70 BRCA patients meantime continue to get yearly checks through the NHS system, as against the 3 yearly checks given non BRCA WOMEN.)

2). Phone call to say mammogram I wasn't supposed to have had, officially, had shown up problem. Would I come in next day...

The irony being that had I had my yearly mammogram 6 months earlier tumour would have been smaller, there would have been no underarm involvement and I could have turned down any offer of chemo without a thought. NHS own goal you would think: mammograms are much cheaper for them than several months of chemo. Forget that this would have been far nicer for me too.

NHS rationale (I think.) Women over 70 aren't going to live so long why bother treating. Women over 70 usually too fragile for arduous treatment. Tumours in women over 70 grow very slowly, women most likely dead of other diseases before tumour any problem. 

Arguments against: 1. many women over 70 are in better condition to undertake treatment than women much younger: chronology and physical status by no means always the same.

2. still more significantly, tumours in BRCA older women do not behave like those in non-BRCA women: these dear little aliens  are as vicious and fast-growing as ever. In other words by not continuing yearly check ups, by offering at best only 3 year ones, they are condemning us to death - or if not condemning us to some very unpleasant options,  as well as condemning the NHS to spend far more on treating us. QED. 

Am I angry? Yes. I may be lucky to have been picked up relatively early - but what about my fellow carriers of the faulty genes? The incidence of breast cancer continues among us much higher than in other women of our age, and in many cases it will be far from the first time. Why has the NHS washed its hands of us? It's about saving money I suppose in the short term. But saving money in the long term? I doubt it.

it's too hot to be angry. Oh but I am. The storm in my head unlike that which may break overhead tonight outside is not going to cool me or any of us down. 

June 29th

Years ago I had a boyfriend - a rather drunken and not untalented artist, now long dead - in part because of said drunkeness  - whose main reason for his presence in my life was his total unlikeness to the previous occupant of it. He had a pessimistic bent, though, one effect of which depresses me to this day, come late June, early July. Every year within a week of midsummer he would say ' don't you notice how the nights are drawing in?" Well I didn't actually. Nor did I want to think of the days drawing in, particularly when, in consequence of the English climate it seemed that summer had scarcely begun; who wanted to contemplate the inevitable coming of winter which such words miserably evoked. And which they continue to evoke every year, damn it, reminded of him at such dates whether I want to be reminded or not. I hasten to add here, reader, that I didn't marry him. Sensibly enough. Not that there was, ever, any likelihood of such an event. 

The days do draw in somewhat this year in other respects. The oncologists have it. There were two of them; a young, very thin, Italian, an oncological fellow working in London because, despite promises, despite being fully trained no consultancy was forthcoming. (In Italy one has to remember, such perks rather depend on who you know/are related to.) Hence her living in Sutton, the Marsden's other branch, raising a two year old son with the help of an au pair, her husband visiting from Italy, every other weekend. She had to leave abruptly to pick the child up.) She and I rather took to each other - as is suggested by my gaining such information from her; one of the interesting things about the number of people you are at close if brief quarters to in the pursuit - you hope - of eventual health, is the way mutual chemistry asserts itself very quickly - or fails to; or is just neutral. The thin Italian's boss, the full consultant, who turned up next, also thin, but less so, neat, and rather shiny, metaphorically or otherwise, was less sympathetic - a matter I partly judge because I could not make her laugh, one fail-safe procedure I try and use in these encounters for both our sakes. She also got a bit snippy at the suggestions that I had a life, and that maybe, sometimes, the nasty procedures she was offering would have to fit in round it. 

From which you may gather, dear readers, that yes, I did acquiesce, I did agree to some at least of her nasty procedures. For very good reasons. I had sat up making my lists, setting my bottom lines, and the bottom line in this case was the state of the two naughty nodes that had been removed from me by the surgeons. Had they been whole, undamaged, so that none of their undear little cells could have escaped, I would probably have said no. But they were in fact far from undamaged. And as for the stats - another criteria - though very unclear, because the small population of patients like me, BRCA1 patients with triple negative tumours (if you want to be technical that means not receptive to oestregen, progesterone, or HER2 - look all that up if you're interested) means the stats cannot be considered entirely significant. The nearest guess being a 30% chance of recurrence without chemo, a 15% chance with. That 15% seemed telling enough. So I caved in; with the one proviso: I would not accept treatment that risked this nasty thing peripherable neuropathy making walking painful. (See picture. I do not want to be like this; yet.) As it turned out the first series of treatment does not involve this; merely possibly, heart damage, leukaemia (pretty unlikely: but) nausea, brain fade, exhaustion, hair loss, low white cells, meaning a crashed immune system, etc etc etc, all more likely. Didn't I say cancer treatment is brutal: Only the next phase of treatment might induce p.n. In this case it's taxol - the poison of the yew tree, an ancient medicine/poison, one reason for shutting cattle and sheep out of churchyards where yew trees tended to grow: a tree of death in every sense. Unlike the other poison, adminstered at 3 week intervals, the treatment with Taxol is accelerated; the more accelerated the more likely to induce the problem. Given at wider intervals it is less likely to produce the dreaded pins and needles. Not least the symptoms would appear at a low level at first, meaning that I could at this point jump ship and so reverse the problem; and I would jump, believe me. Not being able to walk would be - have I said it - I'll say it again - a fate worse than death.

(One observation - that departments in a hospital, despite seeing patients either end of the same waiting room do not appear to communicate. The oncologist told me there has been a long discussion during their case meeting as to whether this patient, given her age, would be able to cope with such vicious treatment. But obviously I could she'd decided taking one look at me, and noting my lack of all other problems, medications etc. Mid 60s the surgeons had judged me; early 60s she thought. Better communication here - and closer look at my notes - might have saved them quite a lot of time discussing me.)

There was one other, more hopeful note. If I achieved enough treatment I could be entered into a trial - the trial of an approach suggested long ago - twenty thirty years ago - when I was told that I needn't worry about my grandchildren, a simple pill would settle the hash of their impertinent gene. The trial is of gene therapy in other words; a means of turning off the way in which our genetic mutation mean that the production of repair cells does not stop when enough have been produced - the way a stopcock prevents flooding -but continues ad infinitum, meaning they turn into the naughty kind of cells which is the cause of all our trouble. A micro-biologist I daresay would shudder at this very crude lay description, but I think that is roughly it. Understanding how our cancer works is something that  intrigued this far from scientist from the beginning; if you've got to suffer the bloody thing you might as well derive some intellectual interest from it; up to a point. (Beyond that point I have to say I'd rather not go. There are nightmares preferably never known and certainly not in advance.) Anyway, in a double bind trial I'd have a 50% chance of getting some advantage from this new gene targetted approach; the only chance, given that it would not come onstream for several years thereafter, assuming it works, having to be approved by a load of committees, and given what is likely to be an exorbitant price, pharmaceutical companies being how they are, declared acceptable by NICE. So let's hope p.n does not appear and I do manage to imbibe through abused veins the required amount of treatment.

None of it will start to be imbibed till late July. Meantime, the present weariness and much of the soreness abating somewhat, I get some time to become well again - wellish. This morning I did a very short and tentative session in the gym. It was good. The sun is out, Wimbledon begun, a young Brit won and good five set match and I am stretched on my bed writing this, weary but comfortable. Having dreamed of chemo  three nights in a row, the dread abates - slightly - because what is the point of going on dreading it. And who knows I might be one of those who sail through it all easily.....Keep walking, Penelope, keep walking.

And oh yes, I am angry. Diagnosed 6 months earlier, as I should have been but for recently determined medical protocols I wouldn't be facing this. Something I will explain in another post. 

Tomorrow to acupuncture. Oh what fun life is; so very full of needles.. But these needles, at least, I choose.

June 28th

Monet's garden in April. Soothing - for me anyway.

Oxfordshire. To rain, headache, sense of minor dread has now been added extra aggravation of Simple Site having eaten previous attempt to write this post. What''s with it. In all events good effect of Thursdays aromatherapy session with brisk sporty lady from Dorset which seems to have made me less tired over the past two days has somewhat evaporated. An evaporation aided  I daresay by oncology session with oncologists various on Friday. Your P, pronounced mid 70s in chronological age, but only early 60s in physical age most likely to add to that physical age rapidly over the next few months: cancer treatment, as I've said is brutal.  The gingerbread woman, feeling the fox''s jaws snapping has had to shed a little if not all her hubris.

Outpatients at the Royal Marsden on Friday was a bit like a genteel refugee camp: heaving - hardly a seat to be bad and some people being sent away to come another day. Not us fortunately. Even so Himself and I had to wait over an hour - luckily had brought more than Guardian as reading matter - and were finally ushered - with apologies - into particularly cramped cell, not normally used - so cramped and hot that knocks  on door barely needed by succession of people going In and out, as door was mostly kept propped open so we could breathe. 

Succession included portly lady with bun and clipboard whose function I can't remember and anxious researcher with complicated pages about her project. Far too complicated to be taken in at this point and involving blood tests to be taken from already abused veins so I think my answer likely to be no, meanly. Not against research, of course not, but there are limits to pleasure in being a guinea pig and over the years of being a BRCA1 patient with mutation in unusual place have been one many times. And anyway in view of not very welcome discussions elsewhere this was not a good time to ask. 

In view of rain Himself has just put head round door suggesting we return to London. So enough for now,

TO BE CONTINUED...