Period of stability: 15.5.05 - 05.06.05

15th May 2005:
Progress report

Dear everybody,

Life has continued over the past three weeks in a manner which is far from unpleasant, in fact mostly positively enjoyable. Still climbing mountains etc etc and spirits have been hale and hearty.

Hospital appointment last Thursday. It's interesting that they just don't do any physical examinations at the hospital - I haven't had a single one since diagnosis. I think this is standard if you're a terminal - what's the point of looking for extra things to worry about? That's certainly my philosophy anyway, so I'm not complaining. An X-ray was done, and this pleasingly shows no signs of any growth since chemo finished. (The 4th and last chemo session was 19th Feb.) I'm sure that this thing has grown in spurts rather than at a steady rate over the past 18 months or so, i.e. have felt badly ill in definite spurts against a background of feeling "below par" constantly. And I'm sure that the times it goes into spurt mode are the times when I let stress get the better of me, and then completely lose it on the sleep front. Which I have succeeded rather well in not doing since diagnosis.

Rigid adherence to my beloved DAILY ROUTINE is the most essential aspect of not letting stress into my life. I will tell you about it.

The great unknown is of course how long it can keep up for. The doctors don't have a simple answer to "How long have I got?", maybe because by rights due to the size of the mass I should be dead or well on the way already, certainly nothing like as fit as I am now. They don't do much more than tell me that I'm very wise to live in the day and not think ahead or make plans for the future. I find this surprisingly easy most of the time - I just don't permit myself any conception of "looking forward" to things.

I'm now taking a steady, slow-release dose of morphine in the form of two tablets a day - equivalent to six teaspoons (60 mg) per day. Hospital really quite adamant that this was what made sense, and I feel perfectly happy about this - it was reaching the point where I was feeling just that bit too much of my energies were being consumed by the intellectual challenge of handling pain. It certainly doesn't make me feel in the least bit like a junkie - in fact, I felt pretty cross and not at all amused at receiving the comment "I'm sorry to hear you now have to take H"!! It doesn't seem to be fuzzing up my brain significantly. However it does make me feel that I have to push myself quite hard in order to maintain what I see as the essential disciplines in my life, e.g. harder to get out of bed in the morning and not to let myself slouch around, harder to push myself out for a walk if the weather's crap, harder to drag myself away from PC. Much of what was hitherto imposed by signals of pain setting in, now has to be imposed by mental self-discipline and of course by sticking to My Routine.

But, if I take supplementary teaspoons of morphine during the day (which they seem to expect you to do) then the effect on my mind is very noticeable, and can be positively irritating. The only time I feel any need or desire to do such a thing, apart from when I wake up in the small hours, is when I have my afternoon rest. Even though it gives me a pleasantly relaxed feeling, I find myself inventing trivial and idiotic little stories without realising I'm doing it - I'll just suddenly realise that something which could have been lifted straight from a "Mr Men" book is going through my head. This really is the lowest of the low as far as I'm concerned.

I think this could perhaps be considered more boring than my previous progress reports - apologies if this is the case. Am going to stop there anyway.

16 May 2005

Oldest friend explains what she meant with regard to Big Family Visits by "The thought of having to literally face some of this stuff is too dangerous for me". She says: "I had understood from what you had been saying that you have a real sense that stress impacts quite directly upon the growth of the 'mass', therefore any emotional contact with your family which may potentially prove distressing/upsetting whatever would have an obvious detrimental effect upon your health, and one which could not be risked. I imagined there would be two factors, the stress of anticipation, and the emotional content of the encounter which may of course be positive, but equally may not and would therefore be risky/dangerous for you."

My old GP chum says that she can hack a conversation about constipation. I don't like the stuff the consultant has put me on - Movicol - one little bit and was much happier with the Lactulose my GP had given me. Unfortunately it seems that even with the best of diets and drinking loads of water, when you're on morphine it's most unlikely that your system will manage to maintain regularity without some help. The consultant appears to have a strong aversion to Lactulose largely because it tastes so foul if you take it neat, but I find its sickliness is completely masked if you add it to a glass of acid fruit juice, such as apple and cranberry. Anyway I'm hoping and expecting GP chum to reassure me that I'm not doing something completely mad by sticking to Lactulose, especially since it seems enough in my case to do the trick.

Very exciting news. Ian has just sussed out how to record LPs, tapes etc via a lead to PC so they can be put on CD! All required was purchase of a simple lead plus free software download plus "a procedure". I will be very pleased when favourite old LPs and tapes are easily accessible listening once more.

17 May 2005

I've been a little bit sad the past week or two not to feel capable of going to concerts because it was the Lindsay Quartet's farewell series in the Crucible - they play Bartok and Beethoven quartets so splendidly. But only a little bit sad - my Routine seems so central to staying alive that I can't seriously want to do other things.

18 May 2005

A work friend asks whether he can pass on my Daily Routine to his partner who is a counsellor in primary care. He says: "Your Routine is so sane that I believe it is worth sharing more widely." To which I reply: Yes of course you may pass this on. But usefulness of Routine if you don't live in a pleasant environment, or if you have young children to worry about or whatever, is probably questionable!?

Have been doing quite a lot of coughing up catarrh last few days but I think it's better today. In that sort of way I definitely don't think the worst and have got a fully-fledged "what's the point of worrying?" philosophy - I don't in the least tiniest bit assume it must be a lung cancer primary showing itself, I assume it's just a chest infection.

19 May 2005

My sister Susan responds to my account of my Daily Routine: "it's nice to hear how you spend your day hour by hour and you contrive to make it sound quite satisfying in its way". I say: Yes, it is very satisfying. The most satisfying time of my life in many ways, although I know this seems peculiar. This is all down to children being grown up, but at the same time feeling a great closeness with them, and to living somewhere beautiful - without these ingredients my Routine would be an impossibility.

There's been some sunshine every day for the past week, although mixed in with dull and rainy patches. But I've always found in Hathersage that there's never a day which is completely unremittingly horrible from morning until night.

21 May 2005

Every year or so Roy's ex-wife does something outrageous which leaves Roy entirely unruffled but me feeling most indignant on his account. Only family is allowed to respond by taking the mickey out of her and I'm definitely not - and definitely don't want to be - "family". I feel much the same when people speak in damning tones about John - I can only be doing with people criticising him if it's in the context of real affection. So, I can understand where Roy's family is coming from on this one.

The way Roy reacts when I criticise her feels very like what happens with my mum if ever I say anything critical of my father. It's a big taboo, but in turn she's come to realise that it's a big taboo for three of us siblings for her to try to persuade us how wonderful he was because we'll never, ever be able to see things that way. Every now and then she can't resist some comment about how if we'd seen this, that or the other side of him we would have realised how we had misunderstood him - and the effect of this is always that we beseech her not to go on because we'll end up saying things that upset her.

It's entertaining how often Roy is more like my mother than anybody else I have ever encountered. It must be in the genes. We are blood relations after all. Our respective family trees both have entries from the thirteenth century when a St. Pierre brother and sister marry a Dutton brother and sister - Dutton being my mother's maternal line.

22 May 2005

About to do a whack on editing my terminal thoughts - I'm wondering whether I might find myself having a battle with depression when I've finished doing this and am trying to think of a suitable project to move straight into. This is confusing because of course red lights start illuminating when I think too far ahead into the future or look forward to things etc. But it doesn't quite make sense to assume as 100% certainty that I must lose my fitness within another few weeks. Would like to do some historical research on Hathersage similar to my "Life and Death in Elizabethan Norton" ( but is this going to be possible given that I can't travel to Matlock to do it?

My incapacitated chum reports after reading My Daily Routine: "I came to the conclusion that our bodily reactions to pushing the envelope are not comparable - with me it's definitely slowly slowly gently does it. However your account of that sluggish feeling, when to stay put seems much more inviting than making the effort to keep to the daily routine, is very familiar. I think more determination and self discipline are needed by people like us, just to keep as active as possible, than many of our friends require to do all the rushing about of their busy lives."

I say in my reply: Your balancing-act between optimism and over-optimism seems very parallel to mine. I do feel that managing my body has become a full-time job in itself - beneath my overall routine are a whole set of sub-routines such as fastidious tooth-cleaning and a great belief in the efficacy of salt mouthwashes/gargles.

In the afternoon, my brother Richard and his partner Caroline come to visit. They live in Oxford so are close enough to do a day-trip. They bring a delicious lunch and we have an excellent walk. It was Richard who I was closest to in childhood of all my siblings, and we have maintained a comfortable, laid-back relationship all our lives despite not communicating with one another more than every year or so. Caroline is deeply committed to Palestinian solidarity so we have a strong bond. Richard and I share some memories of Our Father which are not at all happy but highly entertaining if one's humour is sufficiently black. Altogether a most pleasant day. I instantly send my mother and siblings a photo of the event, with me looking remarkably cheerful and smiling. (This is the photo on my website homepage.)

23 May 2005

Dearest mother,

A quick note to say that I now find myself unable to settle down to rest because I'm completely petrified since phoning that your reaction to how fit I look in the photo is going to be yet another round of "I feel ABSOLUTELY CERTAIN that you are going to make a remarkable recovery" or some such thing. If you *must* have such thoughts you *must* keep them to yourself. The reason why I look so well is because I am handling a terminal cancer in a sensible and realistic way and accepting that every day could be my last day of fitness. It completely, totally, undermines my equilibrium to be confronted by unrealistic optimism. It also increases still further my sense that an in-the-flesh visit would be emotionally unbearable to me.

Having said this straight away, hopefully I will be able to feel relaxed again and get a delightful rest. I'm sorry, but this just *is* how it is.

24 May 2005

Dearest mother,

Yet again I wrote to you in hasty tone yesterday but I hope you will understand that this is not rage which I am expressing, but deep fear and trepidation!

In the light of the morning I just want to explain some facts to you.

In terms of prognosis based on statistics, there's not much difference whether I have lung cancer or a "carcinoma unknown primary". For patients diagnosed with either of these, at an equivalent stage of advancement to mine at diagnosis, the statistics are:

50% dead within 5 months of diagnosis
85% dead within a year of diagnosis

The decision as to whether to award the Terminal Living Allowance is based on these across-the-board statistics for the diagnosis, not on any individual perceptions of the relative fitness of the patient.

This means that the consultant will sign this form at diagnosis without any attempt to sub-classify patients into those who are more likely to be dead within 6 months, and those who will be more likely to fall into the 15% who will still be alive after a year. Obviously, any attempt to sub-classify on these lines would be dangerously conjectural and would mean that less people would be eligible for this non-means-tested £100 p.w. The doctors have no desire to police such restrictions, and consider the fact that over 50% of patients similarly diagnosed will be dead within 6 months, is sufficiently good reason for signing a form which is based on a legal definition that "death can reasonably be expected within 6 months".

It could well be that I am amongst the 15% who are still alive a year after diagnosis - I certainly haven't ruled that out. But for me there is the added important dimension that there are two stages: 1) when I lose my fitness and 2) dying.

I don't necessarily have any great interest in stage (2) continuing for a long time, even if by doing so it meant that I succeeded in being counted amongst the 15% still alive a year after diagnosis.

My attitude is just not to be interested in the question of how long I might or might not live for, but to live fully in the present.

I know it's likely to take you some time to make sense of what the above means - have sent to other family members so they can help!

24 May 2005

A woodpecker has been coming to our birdtable recently. Garden full of aquilegia (columbine) at the moment but intermingled with enough other things to give the desired sense of colourful controlled confusion.

I'm feeling that I've been a bit chokka with visitors, i.e. walks with old friends plus with my brother and his partner. I will give myself a bit of a breather I think till early June.

My mother sends an email which greatly reassures me: " My jubilation over your relaxed, even happy, photo was in no way an expression of faith in a miracle. It was sheer delight in feeling that you are - for the present anyway - well enough to get some enjoyment out of life and all the good things that you have around you."

I think in many ways it's much easier to be told at the start that you're a "terminal". A friend who had leukemia was informed she had a 60% recovery chance and when after 2 years she was then told that there was now no hope I think she felt a failure, that she hadn't "been successful" in "the fight" against her cancer. I don't see myself as "fighting" my cancer, a battle which there is no logical expectation that I could win. My strategy is to live with it, even accommodate it, as best I can. This is probably very Buddhistical of me.

A very delightful walk up to Carr Head Rocks with my old friend Andy, who was the mainstay of Student Community Action at Sheffield Poly between 1976 and 78 when I was the salaried Community Action officer. He lived with us for a few years before and after Ian was born. All the characteristics which made him such a splendid chum in those days still very much intact. And, as with other friends who have been housemates in the past, a sense of being part of the furniture is instantly restored.

25 May 2005

Very pleased to hear from my sister Susan in Orkney about the following happenings in Kirkwall:" Last night I went to the Orkaid (charity shop) meeting which decides how to spend the profits of the shop. About 23 women of my age and older attended plus a nice chairperson a bit younger. The variety of charities (local and international) is incredible. But I suggested Orkaid send something to MAP. The immediate reaction was a horrid rant from one woman about how money mustn't go to war zones, no, no, no. But a vote was taken and it was decided by about 19 to 3 that we should send something. £500 was decided on and it was really nice because afterwards one of the women said that MAP had been suggested some years ago and the same woman had objected so it wasn't chosen. She was very pleased money was going to them. Another (American) woman said her family was linked to a Christian Mennonite sect and that Mennonites went into war zones trying to help all the time and she thought it was very important."

Susan and I are looking at the possibility of her coming for a visit, and in the course of the journey, her taking a kind of "virtual holiday" for me. Andy was waxing lyrical about Ullapool yesterday so I suggest that as a possible destination.

Amidst aquilegias in full glory, some lovely alliums popping up now, and a jolly cluster of poached egg plants and much more besides.

26 May 2005

Roy is being very grumpy and dispirited about his job, which is running a community centre on the other side of the Pennines. I tell him: the reason why you're not enjoying work is because you're ready to retire, you don't have the energy to take big new initiatives any more, or to take the knocks which are inevitably met on the way. It needs somebody who still has commitment and enthusiasm to offer to their work, as you have in the past. Anybody can and does see from the community centre that here has been somebody who has taken great initiatives and created something really wonderful as a result and that this is the sort of thing which *only* happens as a result of individual enterprise, never as a result of the doings of "higher up". It's not surprising that you haven't got that energy any more in your 60th year, especially after two bouts of pneumonia.

29 May 2005

I tell Roy that I sometimes wonder whether he really in truth likes me all that much or whether there's a seam of him which sees me as a po-faced feminist political correcto with no sense of humour. I just do need to feel 100% confident that the chums who hang around as my demise becomes more imminent are truly deeply fond of me. And I have enough such family and chums to supply this not to need him in a needy kind of way. So, I tell him, it wouldn't be doing me a kindness to hang around if the fondness level isn't acceptably high. (Without of course going into a state of doglike forlorn love.)

Am satisfied by him replying to "a smiley faced pragmatic flexible feminist anarchist politico incorrecto with plenty of sense of humour".

30 May 2005

I have just had a very good telephone conversation with Ian's old headmaster. I had been chatting with village friend Meryl bemoaning the likelihood that Hathersage Church wouldn't permit an atheist memorial service. So she pointed out there was a much better chance of permitting a humanist event with a humanist officiant - she had a humanist marriage - and she got me a copy of a Sheffield Humanist Society leaflet about "Non-religious funeral ceremonies". And top of the list of Humanist Officiants in our area was ... Ian's old headmaster.

I would be confident that he would do a good job of being the M.C. at whatever event takes place. He liked the idea of the event not happening at the crematorium - said it was very good if you don't have to worry about not finishing on the dot, as you do in the conveyor-belt use of chapel. He said that funeral directors have a habit of falling into default assumptions of vicars, booking crematorium chapel slots etc. and that it will be necessarily to spell out very clearly to them at the beginning that all their role consists of in this particular death, is to get the body to the crematorium to be cremated, and arrange for picking up of ashes by family. (And of course it doesn't really matter if you get given the wrong ashes, they can still be symbolic of me...) Well of course there may be things like post-mortems or docs wanting to keep my interesting body but if so then there's no need for a memorial event to hang around to wait for some ashes to be available, it can happen with or without.

He said it all depended on the views of the incumbent whether Hathersage Church would permit a humanist commemoration but thought there was a definite possibility and completely understood why I so desired such a location! He said get a move on and get talking to the vicar.

You pay humanist officiants fees for their services just as you would a vicar. The normal thing is that when you're ready to arrange the event, you get in touch with the officiant who visits and meets with members of the family, and at that stage makes copious notes on the life of the deceased and what's wanted at the ceremony etc.

So, I proceed to find the vicar's email address in the Parish Mag and write to him:

Dear Vicar,

We have met a couple of times. You may remember visiting me after I had brought my mother to church while she was staying. I regaled you with accounts of how being a clergyman's daughter had rendered me a staunch atheist, but we agreed that we had a strong common cause based in humanitarianism.

I was diagnosed in December with a terminal cancer, and although I remain remarkably fit considering that I shouldn't really still be alive (still walking 5 miles every day!), my demise will presumably be in the not-too-distant future. I am able to face this in very positive spirit.

I want the cremation part of what follows my death to be a complete non-issue, with the family simply picking up my ashes and then at some later convenient time arranging a commemoration of my life with a humanist officiant.

The thing is, there is nothing I would love more than for this commemoration to take place at Hathersage Church. Over the past 6 months the churchyard (or should I say the ancient yew grove where the churchyard now stands?!) has become a very central place for me spiritually, and I feel that it's here that my friends and family could best remember me amidst the landscape which means so much to me.

Please let me know whether this is a possibility or not.

31 May 2005

I am most surprised to receive the following reply from the Vicar: "I do not think there should be any difficulties with your request, but I need to explain one or two things. I will call and discuss them with you."

I had certainly not expected things to be this simple! [And unsurprisingly, it transpires later that Vicar has not grasped what I was asking.]

My mother writes: "I do want to take up your suggestion that we should discuss our thoughts about death. I've always treated my own death as something to talk about freely and frivolously because it won't be a disaster at the end of my long life, but I can't possibly think of yours in the same way, just when you are approaching a retirement when you were looking forward to doing all sorts of interesting things. And above all I resent your not being able to finish your law degree and qualify yourself to help lots of other old people in the way you have been such a wonderful help to me these last years. It seems so utterly unreasonable that this alien growth should have the upper hand when otherwise you are in such good health. It's just NOT FAIR that at the same time I should go on living when my life is really so unimportant and I might and perhaps shall become a nuisance to everybody. This is just something I have to get off my chest but then of course it isn't sensible to expect life to be fair."

I tell her: I just can't think of my impending demise as a disaster! On the fairness/not fairness stakes at a global humanitarian level, I've had vastly, vastly more than my share of fairness. Yes it's a pity that I won't be able to pursue the legal and campaigning things I wanted to pursue in my retirement. But on the other hand I will depart this mortal coil knowing that the children won't have a mother with Alzheimer's or any other long-drawn out illness to worry about and having had a jolly good chunk of time to spend without having to work. And spending far more "quality time" with both of the children than quite probably I would ever have done if this hadn't happened. Whatever happens to me the birds will sing tomorrow etc etc and it's much more relaxing to regard my impending demise as no big deal.

05 Jun 2005

Over the past few days, I've been caught up in difficult money conversations with my mother. It's largely to do with her never having considered the possibility that one of her children would predecease her, and that grandchildren would therefore receive that child's share of the estate. Will be most relieved when we reach an understanding over this one.

I have emailed the consultant to find out what life expectancy she will be quoting when she has to provide a medical report for my ill-health retirement. And also to establish whether she's going to describe it as lung cancer, or carcinoma unknown primary. Apropos of this I tell her: I am sure that you appreciate that this adds a certain (and of course justified) mystique to my persona and the cancerous mass it harbours.

She replies that she's happy to refer to it as an unknown primary, and that "Whilst I believe that we are looking at more than 1 year for you and it is not uncommon to keep people well (with good quality of life) for 2 or even 3 years, 5 years would be exceptional and I would rate your chances as only 1%."

This is much more optimistic than she sounded at the time of diagnosis.

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