Dear everybody,
I'm writing this on December 3rd, the anniversary of my diagnosis. A review seems timely. I will be very pleased when it's tomorrow (and superstitiously am not posting this until then). The initial prognosis left me with no expectation that life would continue for longer than a year. I was one of the "chosen few" cancers where the certainty of the docs was such that a large part of the diagnosis appointment was spent in wallpapered room with teamaker while nursy was filling in a form for me - I had been selected as one for whom it was appropriate to claim the DLA "Terminal Living Allowance", the legal criterion for which is that "death can reasonably be expected within 6 months". (I puzzled at the time why nurse was filling in the form *for* me, sort of with her arms round it and her back to me at a desk. I assume this is because it has some giveaway title at the top, and the medical profession seems to think that the terminal label isn't useful. Personally I think it is, very.)
Now that I understand more about prognoses I think I get the drift of how doctors decide at diagnosis whether or not somebody is worthy of this very handy non-means-tested £100 p.w. It's all crude statistics, and what else could it be at the diagnosis stage? If 50% or more of patients diagnosed with a similar cancer are dead within 6 months of diagnosis, then it follows that death can "reasonably be expected" within 6 months. What I was told verbally by the consultant at the diagnosis was that it was unlikely that I would be alive for more than a year - a reasonable thing to tell me, since around 85% of patients with either lung cancer or an unknown primary are dead within a year of diagnosis.
So, this was what I girded myself for. This was what was expected when Sarah dropped out of university to be my carer. Even though, in the light of my continued fitness, the consultant has been saying since June that there's a very good possibility that I'll have still have a good quality of life (altho' definitely not a "normal" life!) for another year, I felt like I wanted/needed to hold on to the sense of probability that I would die within the window which had been planned for. It wasn't until my last appointment at hospital (October 20th), which had been preceded by me writing a letter asking questions about how the diagnosis had been reached - in particular why it had been designated as a "high grade" cancer - that I understood the situation as being that my cancer was behaving in a way which was not what they had expected - i.e. growing much more slowly than anticipated - and that its distinct atypicality was clearly acknowledged to me for the first time by docs.
But even then, I didn't feel ready to move on from the expectation that I would be dead as originally expected by Dec 3rd - I had to get past this date first! Very silly I know. I've been having quite a lot of tense and anxious feelings on this score over past week or so, although decreasing over past couple of days.
Anyway here I am. Nothing has changed of course in any real sense. The mass is still growing and its size is already such that it poses a serious threat. The hospital is very definite still that the cancer is an untreatable one - they say that the type of chemo I was given was specifically chosen in the context of the uncertainty surrounding my biopsy results, and that if the cancer was treatable, the chemo selected would have had a significant impact. The biopsy sample was a good one (a 16mm core), so there's no suggestion that the inconclusive results are because they didn't have enough material to work with.
My life is not going to become any less constrained than it is now, and of course the reality is that I am still only going to get worse, not better. My consultant assures me there is no risk that I will be deprived of my very handy Terminal Living Allowance. It remains the case, just as much if not more than at the time of diagnosis, that in statistical terms my death "can reasonably be expected" within 6 months and that I'm much more likely than not to be dead within a year. The mass could at any point start growing faster - something which I feel very convinced is a major risk of any stress in my life. Hence I will continue to avoid like the plague any situations which I think could cause me stress. My daily routine will remain sacrosanct. I will continue to enjoy living in the day, for the day, for as long as the quality of my life can be such that there remains some pleasure in it. I'm determined not to let myself take continued fitness for granted, to carry on treating it as something to be pleasantly surprised about and enormously grateful for. I have to expect to lose it at some point, whether slowly or suddenly.
I have already been finding that stress can easily result from trying to describe my feelings on the above except to genuinely close and like-minded friends. e.g. Bumped into somebody I knew a long time ago (Hathersage being a popular walking centre this happens quite often) who was most gushing about how wonderful the stuff on my website was etc. etc. And then, when I said a few words about anniversary of my diagnosis coming up, she says: "Oh, you *must* get away for a wonderful holiday in the sunshine to celebrate!" This narked me quite a lot when she was making a big thing about having taken such interest in reading my writings. I could not control (or more honestly, could not be bothered to control) seriously sarky mode. "Oh yes, a long journey is just what I want when I can't sit comfortably for more than twenty minutes and need - urgently - to lie down for two hours if I've been up more than 4 hours. Packing vast quantities of luggage and making sure I've thought of every single thing I must have to be comfortable (Putnams pillow, kneeling chair etc etc as well as pills and things) is a really great idea, it would be so relaxing..."
I have reached the definite conclusion that it's the "gushers" who are the people who are least likely to actually have been hearing what you're saying. Whether they gush with how wonderful you are, or how sorry they are for you and how awful it must be for you, or with super suggestions as to what you should do to make yourself feel better, gushing of any kind has come to be seen by me as a giveaway sign of lack of empathy.
I now find myself wanting house-decorating to finally get finished off and have ordered carpet for stairs etc. so as to push family into making this happen over Christmas. I am able to do a bit of decorating myself, but only a very limited amount (e.g. coat of gloss on 2 door sides is my limit - about 40 mins) and I don't half know it if I push myself on when my body is telling me I've done enough. However I do still quite enjoy it and also find it's easier to impose my standards on children if I'm involved.
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It's now December 4th and I do feel in something which could almost be regarded as celebratory mode. The skies were blue when I woke - for the past few days early mornings have been extremely dark and dismal. A sense of achievement and relief is definitely present. It was very noticeable when I settled down for my meditation at 7 a.m. how relaxed, strong and positive I was feeling. I've decided that a very clear "relaxation indicator" is whether you're getting a calm, sustainable space between breaths. If I'm not relaxed, I find I'm going straight into the next inbreath before I've fully completed the previous outbreath, and I've had great difficulty in working through that state, both when meditating and when resting, over the past few days. But now I'm back to that delightful feeling of the whole body relaxing itself completely with the outbreath. It really can be so enjoyable, just breathing... I've recently done quite a bit of altering to my online topic on Enjoyment of Breathing, Pragmatic meditation etc (http://www.joskingston.org/Terminal/pragmaticmed.html) which I think has made it a much more useful bit of writing. But I do have difficulty in getting a feel for how much sense this stuff is likely to make to anybody who's never tried meditating or relaxation breathing.
Physical fitness hasn't been so good over the past week but I think is picking up again now. It wasn't stopping me doing my walking, but my right lung definitely under-functioning - couldn't talk even the slightest bit going uphill, which is a handy way of judging my fitness level. GP also commented on notable difference in function of left and right lungs when she came last week, and is keeping an eye in case it's what's called a "pleural effusion" - i.e. fluid on the lung. This is something which I expect to happen at some point - I think around 50% of people who have large masses in their chest cavity for any reason have to put up with it. It's a fairly simple procedure to drain the lung if/when it does reach the point that this should be required. Anyway, I've not been having the same sense of constriction across the chest for the past couple of days as I had been, so I'm hoping that there was just a bit of fluid there which has succeeded in dispersing itself. I'll remember to report back on this next month so please don't plague me with "what's happened about this?" questions - I just want to treat it as a non-urgent non-issue. No doubt there will be a succession of further things symptomatic of living with a large mass in my chest and similarly I just won't want to make long stories out of them, i.e. I'll resent and resist any pressures to talk about health stuff in any detail!
One of the things which I'm now moving straight in to thinking about is the whole "living will"/"exit" issue - it didn't seem necessary when I was operating on the model of having snuffed it within a year of diagnosis. Provided life delivers me no further big knocks, I have at present more than sufficient quality of life to carry on contentedly, living for the day, on a fairly indefinite basis. But obviously my condition can only get worse since, low-grade or high-grade, it's not a treatable cancer. I may well deteriorate dramatically, suddenly and quickly. On the other hand if I lose my fitness and then have a long-drawn-out decline, the point will have to come when it's in the balance whether life is worth living given the quality of life which I'm able to sustain. I can't see how any logical person (i.e. anybody who wasn't driven by some blind faith) could fail to think in such circumstances that it might be quite nice not to have to carry on this existence too long.
It confuses me a lot whether this is best treated as a taboo area or whether it's a good thing to talk about it. Affirming a positive spirit does have at least to some extent a self-fulfilling role which it's frightening to move away from. Also to me, thinking that it would be nice not to carry on too long once one's life has little or nothing in the way of quality, inevitably must lead to contemplation as to whether I would wish to take initiatives to terminate my life once such a point had been reached. And I feel that if I'm going to think that way, I have to keep those thoughts entirely to myself, i.e. I think I would be quite determined not to involve or implicate family or friends in any way if that was the direction I felt it would be best to go in. If it was legal I think I would find the situation much easier, i.e. it would feel much more OK to talk freely about this stuff. And if it was a "legitimate" option to consider, then somehow I imagine that talking freely about it wouldn't contradict an emphasis on doing all possible to maintain positive spirits.
That's enough I think. I may almost be pleased that the sky is now looking a bit grey, as it means that recipients may consider it a good use of a few mins on a dull Sunday to write me an email.
Lots of love,
Jos
There's been an awful lot of rain in Hathersage and the water table is completely at saturation point. A large pond appeared a couple of days ago 6" deep across the width of Mill Lane on the other side of the viaduct, adjacent to a rather swamp-like bit and making it feel as if it was returning to a primeval state. I don't remember this happening before in the past five years. But today its drained back off the road again.
Pleased that chums are commenting on the article in Saturday's Guardian by Matthew Engel, about his son's death from cancer - http://www.guardian.co.uk/weekend/story/0,3605,1655273,00.html As my brother says: "His description of other people's reactions and how difficult to handle they were reminded us a lot of the things you have said about your own situation, specially the problems dealing with people expressing false hopes, talking of other people's "miracle cures" or gushing sympathy when what was needed was empathy." It's very helpful to have this message reinforced from other sources. The little details as well as the general reactions - sense of smell going berserk, hearing becoming at times distressingly acute.
Feeling very anxious about how Kingston family are going to react when I edit my October diary and put it on line later this week... and also about a friend who has been trying to come in far closer to me than I want. It's difficult when you feel that you've laid down clear boundaries with people, and they decide they aren't going to hear what you've said.
In the course of my investigations of possible local counsellors, one of them sent me a copy of her standard "agreement for counselling". It includes "...I also agree to discuss with the counsellor, as far as possible, the desire to harm myself." This just isn't something I would want to agree to. If I decided that my life no longer contained any joy and I therefore wanted out, discussing this with anybody else would presumably put that person at risk of being considered an accessory. I assume most counsellors would avoid that risk by telling one's GP about any such discussion.
I email the British Association of Counsellors and Psychotherapists to ask what, if any, constraints are placed on a BACP-accredited counsellor with regard to discussing living wills/exit strategies. In reply, I am quoted some very generalist Values and Ethical Principles which could actually be regarded as contradicting one another. Plus some links which don't work and, when sorted, don't say anything relevant anyway. I would have been much more satisfied if the reply had been "No, BACP supplies no useful guidelines of any kind regarding terminally ill clients".
An old friend who practices a chanting version of Buddhism tells me: "I chant for you regularly, hope you don't mind". I tell her: "if a Christian said to me "I hope you don't mind being prayed for", I would quickly respond "Depends completely what it is you're asking 'God' for with regard to me". Since your chanting (sorry, forgot the name!) has struck me as having a strongly evangelical strand, it seems logical that I should give the same response "Depends completely what you're chanting for". If you were chanting for me to become a chanter then I would mind. But I think you've got more wisdom than that!" Her reply promptly reassures me on this score - not that I really needed any reassurance...
The thing that's preoccupying me at the moment is "meditation and personality". Meaning, these meditation people are meant to be so calm and unrufflable etc (often to my mind this is fairly nauseating) and of course I'm not like that at all. Over past year I've been focussing on all this breathing stuff as techniques rather than in the context of developing a more deeply Buddhistical philosophical outlook. Now I feel perhaps I should be making some effort to address this issue. Without of course becoming nauseating I would quite like to be a bit nicer. And more importantly for the sake of my well-being, a bit less volatile.
I receive an invitation from two old chums to their civil partnership celebrations. I tell them: I would of course be in an ideological dilemma if my body didn't make it impossible for me to come, given my deeply anti-marriage sentiments which definitely incorporate civil partnerships in terms of my political objections. I have always avoided going to people's wedding celebrations due to the difficulties I have been known to experience in keeping my mouth shut!! But all the same, one mellows with time and a couple of nearest and dearest friends have recently done the thing of getting married and I can see there's something quite sweet about it in a way, when people have lived with one another for decades. And obviously things like pensions issues are very important. Anyway that's quite enough of that, and of course I will be thinking of you and hoping that you have a lovely celebration and that you have a slight little sense of me there as a virtual presence wishing you well.
Have been reading Steppenwolf - which I think I probably read before when I was 16 or 17. It's connected with a lot of what I've been thinking about myself, there being a "mad me" co-existing with a sane me. I'll now type out a long quote.
"The division into wolf and man, flesh and spirit, by means of which Harry [the Steppenwolf] tries to make his destiny more comprehensible to himself is a very great simplification. It is a forcing of the truth to suit a plausible, but erroneous, explanation of that contradiction which this man discovers in himself and which appears to himself to be the source of his by no means negligible sufferings. Harry finds in himself a 'human being', that is to say, a world of thoughts and feelings, of culture and tamed or supblimated nature, and besides this he finds within himself also a 'wolf', that is to say, a dark world of instinct, of savagery and cruelty, of unsublimated or raw nature. In spite of this apparently clear division of his being between two spheres, hostile to one another, he has known happy moments now and then when the man and the wolf for a short while were reconciled with one another. Suppose that Harry tried to ascertain in any single moment of his life, any single act, what part the man had in it and what part the wolf, he would find himself at once in a dilemma, and his whole beautiful wolf-theory would go to pieces. For there is not a single human being, not even the primitive negro, not even the idiot, who is so conveniently simple that his being can be explained as the sum of two or three principal elements; and to explain so complex a man as Harry by the artless division into wolf and man is a hopelessly childish attempt. Harry consists of a hundred or a thousand selves, not of two. His life oscillates, as everyone's does, not merely between two poles, such as the body and the spirit, the saint and the sinner, but between thousands, between innumerable poles."
It made me think about my incapacitated chum as well as me, and her question: "do thoughts of how pleasant it would be for it all to end mean one's depressed, or just that realism has triumphed over being determinedly positive?".
I've thought long and hard about it, and talked to a couple of friends in counselling/therapy, and have come to the conclusion that any counselling I have really does need to come from somebody who has experience of working with, or relating closely to, people with terminal illnesses. These discussions have also made me question whether I really need a counsellor at all.
Busy with Arrangements for the Great Day of carpet laying, Jan. 4th. I email a friend who lives just across the road to ask whether I can borrow a bedroom for my midday rest. And negotiate with John to do some concreting in preparation.
Have been thinking that perhaps meditation mentoring is more what I need in the way of guidance than counselling. I think it could well be that somebody with a strong meditation practice who had personal experience of pain, serious illness or disability, or who had supported a loved one through a terminal illness would be in a good position to offer guidance. I email Wildmind, whose online courses I learnt to meditate from, to see if they have any ideas.
I'm asked what sort of music I'm listening to. When I'm up and active, I very rarely listen to classical music - I listen almost always to world music, especially African and Cuban, and prewar jazz. A great favourite is "Ella and her fellas" - Ella Fitzgerald and the Ink spots. When I'm having my daytime rests, if I can get myself really comfortable then I generally prefer silence, the sound of the birds singing and village life going on, rather than music.
It's when I'm trying to rest at times when I'm in pain or can't get comfortable
that I listen to classical music. But in that situation I'm not wanting to "take
risks" by venturing into unexplored territory. I need to *know* that the
music I'm listening to will "press
the right buttons" in terms of taking me out of/away from my pain and
discomfort. First and foremost the music I want to play is stuff that has been
important to me during my life. And I need single pieces of music which last
at least 20-30 minutes rather than
collections of short pieces,
songs etc. This is essential to make me stay put and resting in rest periods
when I can't get comfortable lying down and am too inclined to give up on resting,
get up and wander aimlessly around. And then end up very weary indeed for the
rest of the day. Such habits are too easily encouraged by short pieces of music
whereas getting myself stuck into listening to something longer helps me to
keep myself resting. At the moment, string quartets are what I mainly play
at these times. The string quartet version of Haydn's Seven Last Words
from the Cross is reserved for particularly bad bouts of pain.
Yesterday was a *really* bad pain day - a lot of pain down my righthand side which got me worried that whatever's going on in my right lung is going to become an issue imminently.
Keeping on writing is an absolute must for me but it's so limiting, feeling that the *only* things I'm capable of writing about are what's in my head... on reflection, I think that the idea of being "Hopeful of Hathersage" and setting myself up as a regular letter-writer to newspapers could be frustrating as a result of this - i.e. just being too exhausting doing the necessary research to get my facts straight on any issues I took up. Plus being too fragmented to give me the sense of satisfaction which I get out of writing something substantial.
It's been extremely cold here - I'm afraid I'm going to find that I've lost quite a lot of flowers due to the bitterness of the frost. This morning (it's now just past 8) the moon is still bright in a blue sky with pink clouds, and the ground is very white. Will have to dress up most warmly to go out for my walk. I'm enjoying the slight modification of my routine to incorporate a bit of "brainwork" time between 7 and 8 or so after my meditate.
My oldest sister tells me in the context of my relationship with my mother: "I rather think ***controversial bit*** that you, in your stressed and terminal state, have lost the ability to look at what is actually happening for 'the other'".
I tell her: "As for the "controversial" bit, it's *not* controversial - I realise this only too well - I have so little time, so little energy, so little resilience, it's all I can do to keep myself together and on track in my own way. I feel as if I've very consciously realised that I just can't cope with trying to understand and take into account points of view which fundamentally conflict with my own. I wish I could convey how it feels trying to hold myself together in the face of such enormous weariness, but if I try it ends up making me feel self-pitying etc etc."
Went down yesterday with what I eventually realised was a chest infection as opposed to cancer taking a turn for the worst, and having realised that, I decided I shouldn't obsess about my walking targets and took myself to bed yesterday afternoon. Have been getting plenty of sleep, but in chunks of not much more than two hours - had to strip down my bed twice in the night because of sweats.
Am much enjoying not taking any note of Christmas and will shortly do a bit of decorating as a statement to this effect.
Main problem remains the Kingston niggles - why oh why can I not keep them out of my head. It was getting incessant again the past couple of days, but I had an anguished weep this morning which felt like an emotional poo, a welcome unburdening. And walking today, one had to concentrate so hard on not slipping over that niggling thoughts were kept out of my mind.
Fact of the day: Blake was once found by a friend reading 'Paradise Lost' to his wife in the conservatory of their home. Both were nude, befitting the setting of Milton's poem in the Garden of Eden.
I receive an email from a reporter at the Sheffield Star: "I have just come across your fascinating website. I wondered whether you would be interested in me writing a piece about you for the newspaper. There are various angles I could cover including your battle with cancer, your weblog and your use of cannabis to ease your pain. I could come out and see you or we could have a chat over the phone? We would also be keen to come and take a photo of you if you're up for it."
I feel flattered, but also a bit chary for a number of reasons. I would get very stressed if I felt I had been misunderstood or misrepresented, so would definitely only do it if I could see the copy before it went to press and could (without being pernickety) ask for amendments to anything I felt was a serious inaccuracy. I would only want to discuss cannabis in the context of the armoury of resources which I'm calling on, i.e. meditation, walking, writing, listening to my body, sticking to my routine, etc plus recognising importance of what the docs give me, i.e. morphine.
There's also the fact that my cancer is a very atypical one - secondary mass in chest cavity but no signs of primary cancer anywhere - so a lot of my "success" in handling it could actually be that anybody whatever their lifestyle wouldn't be suffering enormous amounts of pain from it.
I mail back to say these things and to stall thinking about whether to do
it or not for a while.