Post-chemo 24.4.05 - 15.5.05

April 24th 2005:
Progress report

Dear everybody,

Still haven't missed a day on my walks or let the daily total go below 4 miles and always make sure I include a bit of a steep climb. And whenever possible a lot of a steep climb... up to Carr Head Rocks again yesterday, and a fairly long (for me) Stanage route of around 7 miles last Sunday. A week or so ago I braved a two-mile drive with my son Ian (even this distance v. uncomfortable sitting in a car) so that we could explore the newly opened access land at Bamford Edge. This is truly fantastic walking - go there!! Stupendous views all the way, with the reservoirs all spreading out before you when you get to the end. On our return route, just before coming back down to the access point, we found a wonderful completely enclosed old quarry, like an ampitheatre, with that magical sense of quietness and stillness which such places possess.

Walking is the central discipline in my life and will also act as an indicator of when I have to start resigning myself to moving into a less "life affirmative" stage in the process. For the time being I'm still able to maintain a steady even pace uphill without breathlessness. And to mow the lawn, plant things etc. Even do a bit of emulsioning although only in very small doses. Ian being 6ft 4in has been a great benefit this week because he can reach up to the difficult pieces on the stairs. Downside is I don't feel I can ask him to scrunch himself up into difficult skirting board corners. (And, I bloody well resented having to pay VAT on his shoes from when he was about 8 because his feet's so big.) Anyway the unfinished stairs and landing have sat there for nearly a year as a testament to how seriously I had run out of energy, and during chemo and winter the thought of paint fumes and disruption was unbearable. (My decorating plans at that stage were also a good deal more ambitious than what I am now accepting.) However, I had completed pretty well all of the nasty bits, i.e. endless stripping and sanding, so it's not really a big job. But now it's been set in motion I want it to be finished quickly of course, and so am having to discipline myself sternly to limit my contribution to not more than around 45 mins a day.

Have had a couple of weeks remarkably free from pain, greatly assisted by arrival of a couple of kneeling chairs, and expensive moulded Putnams pillow. And also because I have now established a sensible (for me) support base in the occupational therapist at the local hospice. She was very impressed with how well I was breathing and actually understood it was significant that as my norm I breathe up and down from my belly and not in and out from my chest. (This foxed the young medical things when I was first admitted to hospital and they were stethoscoping me.) And that therefore my key strategy, as she put it, is to "maintain the space between ribs and diaphragm".

However last Wednesday I went into a bout of ongoing gnawing pain in my shoulders as a result of spending too long on the computer. In the past I've been able to manage this type of pain (i.e. prevent it setting in) by lying flat on my back for 20 mins or so and going into mindfulness of breathing as soon as I feel it coming on. But nowadays I can't lie comfortably on my back, because the sense of constriction across my chest from the mass is too great. So, this very useful weapon has had to be jettisoned from my armoury of resources.

Pain having set in I didn't sleep well and woke up with it still there to contend with on two consecutive mornings. And the problem is, if I don't get enough sleep I'm too weary to keep up the alertness, the treating it as an intellectual challenge, which my pain management techniques require. So, I decided that the time had come to ask the doc for some stronger painkillers. Having now been supplied with a veritable sweetshop of analgesics I decided that my strategy would be to would treat myself to half a teaspoon of morphine if/when I woke up in the middle of the night. This has worked very successfully last two nights, thank heavens - had got very miserable indeed by Friday. It tastes comfortably pleasant, I must say. But because it's mixed with sucrose, I had expected it to be thick like Junior Calpol and poured quite a bit over my pillow when I administered my dose. Now of course I'm anxious about whether the doc will believe that...

One really can get a surprising amount of pleasure in thinking up workarounds and strategies to minimise discomfort and maximise enjoyment of life. This week John has erected a rail in the greenhouse at the same height as the gate at the bottom of the lane where I like to lean and contemplate Highlow every morning and evening. And now in the greenhouse I can stand and lean and enjoy the pleasant and interesting view on rainy days, or watch the splendid sunsets above the old needlemill chimney which is a few yards from my house. Two trees growing out of the top of the chimney add to its picturesqueness - and one of them even looks, most surprisingly, as if it's a yew tree! But it's hard to be sure, even with binoculars.

I have been neglecting a lot of emails over past few weeks due to hammering away on compiling my "terminal thoughts", so apologies for this... still not going to upload this stuff quite yet though - I have a few ideas about what I want to do to make it more "finished" - but without losing the "rawness".

Have been thinking a lot about how one can construct oneself into a virtual person, edit oneself into superhero, when one is communicating pretty well exclusively via email. And have decided that this process in itself is actually part of my armoury of handling strategies. On Friday when I was feeling low, I found myself thinking "This is no good. I have to write a progress report this weekend." (It was a decision I made some time ago, that I wanted to make it a discipline to produce a progress report every three weeks.) This sense of commitment acted as a definite incentive to gird myself up into positive spirit again. And that regaining of spirit is something which operates at a real level not just a virtual "email persona" level.

I will stop writing now as there's not really an awful lot to say. A quick potter in the garden, 45 mins emulsioning, and then 1.5 hrs rest before lunch. And then 2 hours walk. My Routine is very important to me and it always leads to a less pleasant day if I try to jiggle with it. Please don't forget that even if I'm sometimes being a bit slow about replying to emails at the moment (unless they're at the top of my mailbox just when I'm in a writing mood!), I do greatly enjoy receiving them! As comforting as a Putnams Pillow, I can tell you.

26 Apr 2005

Slightly dull but not drizzly here... even the worst of weather won't deter me from the afternoon walk.

One of the biggest bees in my bonnet is motorised offroad vehicles. I get very cross today with an email from the Stanage Forum, an offshoot of the Peak Park Authority which is attempting to address this issue by means of reaching a consensus. In fact the amount of patting themselves on the back which they do over their consensus-building strategies is truly remarkable.

This obsession with consensus is complete crap when, as surveys conducted by Stanage Forum itself have shown, an *overwhelming* majority want to see exclusion of motorised vehicles from Stanage, and currently this is by far the issue of greatest concern to countryside users. Exclusion could be effected by means of a Traffic Regulation Order. But no... for the sake of so-called consensus, the overwhelming majority of us are expected to tolerate the appalling effects of the small minority who exploit an archaic legal right to drive motorised vehicles offroad and thus destroy the quiet enjoyment of the countryside.

How can they not see that the possibility of reaching a consensus between offroaders and those who hate them is about as stupid as the idea that a consensus could be reached over foxhunting?

28 Apr 2005

My incapacitated chum says " I am having a bit of a battle with fending off images of how wonderful it would be to be in some of the beautiful places I have seen and enjoyed - I am usually very successful at suppressing such disturbing thoughts, but I think the burgeoning Spring is weakening my defences." I tell her that I felt cross with myself after sending out the last progress report with its imperative "Go there" vis-a-vis Bamford Edge - I then thought of her and thought shit that really was pretty bloody insensitive of me.

Knowing that I'll never see and breathe the sea again is something which can get me very sad if I let it. And yet, for reasons I just don't understand, I think a lot, and very happily, about Hvar as I sniff rosemary oil and lavender which has come from there. I do believe I'm in a much easier situation than my incapacitated friend, not only because of the things I can still do, but also because I only have to contemplate a brief future when I can't do the things I would love to do. But articulating these kind of thoughts to my friend seems like skating on very thin ice. I try to express them, because it doesn't seem at all right to me that I should be in this gratifying position of feeling I get treated as superhero, when in fact I still have so many ingredients available in my life to make every day enjoyable.

It's my incapacitated chum more than anybody else who makes me feel that - given the particular kind of intellectual spirit which we share - when things get worse I will be able to cope. Give or take bouts of weepiness and patheticness en route, which I think in any case are probably needed - but only in moderation.

Cat poo situation seems OK - yesterday my garden was cleared up by neighbour without me having asked.

What to do about the General Election? I think I probably won't vote. The Labour MP here (Tom Levitt) is pro-war but if you vote anything else in this constituency you are definitely letting in Tory. [When it came to it, I went to thepolling station and spoilt the ballot paper, writing that I would have voted Labour but couldn't vote for a pro-war MP.]

30 Apr 2005

Poor old Roy has pneumonia again, although it doesn't seem too bad. Anyway I've been coughing up a bit of gunk too so have been put on antibiotics. Weather here is dull today but we've had some beautiful days including yesterday, when Ian and I had a splendid whizz up to Carr Head Rocks.

My mother writes: " I do so wish we could have a family get-together in some beautiful house in lovely walking country somewhere close to you, but I suppose it might be too great a strain for you to contemplate." I just do not, badly do not, want Big Visits in any shape or form. So I mail her straight back saying: Re family get-togethers, I'm afraid "it might be too great a strain for you to contemplate", as you put it, is exactly how I feel.

I email the consultant to check out whether I'll be having an X-ray when I come for my appointment on Thursday. I can't really see the point in going otherwise. I tell her:
I'm still very fit in terms of being able to climb mountains etc. but can't sit comfortably for any length of time at all now or lie flat on my back. Due to the sitting problem I am anxious to ensure that I'm not going to be sitting for 10 miles each way in a car on Thursday and sitting for a long time waiting at the hospital, just for the sake of a few pleasantries and some comment such as "hair growing back nicely" being entered in my medical record. (A "friend of a friend" story!)

I can't help chuckling when a friend tells me about a sad accident which has befallen her: "I managed to fall off a window ledge while showing a builder where there was damp and now have my foot in plaster for six weeks..." What could be more humiliating for one of us dyed-in-the-wool feminist types?

02 May 2005

My mother has sent me a book called "In the Palm of God's Hand", by a woman called Wendy Bray. She thought that I would relate to her "positive approach to handling cancer", despite the fact that this woman is a heavyweight Christian. Red rags and bulls very strongly figure in my reactions. I do concur heartily with one paragraph my mother has underlined: "the best way to face the threat of serious illness is to look it right in the eye, to face the worst rather than to simply hope for the best." And yes, she faces the challenge with the humour and positive spirit which I have been so impressed by with so many people on the chemo suite and which has nothing to do with faith. To me it's a demonstration of what I mean by humanism - the *potential* for goodness which human nature possesses.

But how can I possibly think it's anything other than obnoxious how concerned she is that her short spiky hair might make people imagine that she's a "radical feminist" - she repeats this worry two or three times!! Nor do I like her constant harping on about how wonderful her figure was and her hair was before chemo. But the main thing of course is that I can't be *other* than "put off by the fact that she is an ardent Christian", as my mother had so much hoped that I wouldn't be. I just can't bear this "thankyou God for everything" when it's so damned obvious to me that any God who had the power to have created all that is good in the universe would also have the power to put an end to all that is bad.

Reading this book has brought out all the militant atheist in me. What really, completely, made me see red was when she says "thankyou God for sending so-and-so round to do the ironing". "Thankyou friend for coming round and doing the ironing" would show an appreciation of individual human goodness, but this all-pervasive notion of the world being "In the palm of God's hand" actually seems counter to that kind of humanistic appreciation.

And I think it almost amounts to deceit that she never bothers to mention that the type of cancer she has, Hodgkins Lymphoma, has by far the highest cure/remission rates - 85% - of all cancers. (Meanwhile, for a carcinoma unknown primary like me 85% are dead within a year of diagnosis.) Obviously it's convenient not to mention this high likelihood of cure when she's so into hyping up the glory of God.

However, I do actually feel quite pleased to have had my attention drawn firmly back to the fact that I am, deep-rootedly and from the heart, an atheist and proud of it. I decide to make this a central topic in my "terminal thoughts" - it's perfectly possible to handle a terminal illness with a positive spirit, without requiring any belief in any god.

I feel quite pleased with myself that I have managed to put some slightly useful thoughts together on the topic of ROWIPS (Rights of Way Improvement Plans) for the Parish Council. I had volunteered to be an assistant to the Footpaths Officer, but haven't made any contribution at all since diagnosis. The main thing I want to see being emphasised is that in terms of benefits relative to costs, a priority should be replacement of "difficult" styles, squeezing stones etc with gates which provide easy access for older and less able-bodied walkers. This should be considered an "access" issue - access isn't just about access for people in wheelchairs.

Have been feeling rather restless and uncomfortable past few days. Tried a different type of sleeping pill yesterday to see if I could achieve 8 hrs unbroken sleep with it but was a fairly disastrous experiment - as with diazepam-type things it made me feel anxious and unable to get to sleep. I think I will follow the proverb "Striving to better, oft we mar what's well" and return to the previous Zopiclone which at least sends me off to sleep with a pleasant sense of relaxation even if it only keeps me under for 4 hours.

Tue, 03 May 2005

I had told the consultant when I emailed her last week that if there were questions which she knew she would be asking me or suggestions she knew she'd be making, I'd like her to briefly outline in advance by email so I could give them a bit of reflection before the appointment. She replies: " In terms of symptoms we're looking for any that might suggest we should do the radiotherapy sooner rather than later and as I think I've previously suggested pain and coughing up blood are the 2 symptoms that particularly respond to radiotherapy."

I tell her: There has only been the one occasion last week when I coughed up some very small spots of blood - having been coughing up catarrh as a result of a chest infection for which my GP gave me antibiotics. The spots of blood were separate from the catarrh, which had no signs of blood in it. I'm now not coughing at all. I really don't feel that the level of pain I'm currently suffering is such as to make me want radiotherapy at this stage - I would still describe the quality of my life as very good - although as or when this changes I wouldn't rule it out. I understand from what you've said previously that it's most unlikely that radiotherapy in my particular case would significantly diminish the size of the mass or increase my life expectancy - is this correct?

Wed, 04 May 2005

My oldest sister asks me to tell her more about my symptoms. I say: The gnawing pains hit shoulders, upper back and neck. They tend to come on if I'm silly - e.g. spend too long at computer. Most of the time I can deal with them before they seriously set in, but not always. The "sensations" in my chest are very hard to describe - I guess there isn't much you can compare with the effects of having a large mass occupying all of one's chest cavity. Strange noises, whooshings, a sense that my heart is kind of dragging, a feeling (strangely) a bit like having a large hole inside me.

Talking for too long can lead to particularly horrible sensations - a nasty vibrating feeling in my neck, and sore-throaty feelings in parts of my neck where my throat isn't, and this clawing, grabbing kind of pain in my neck.

My sister's email has made me feel extremely upset. She is making impassioned pleas for visits even though I have only just told my mother that such things are too stressful for me to contemplate. I know that however much I try to communicate the dread, the anguish which the idea of Big Visits fills me with, whatever I say will be interpreted as "rage" and therefore not worthy of any serious reflection.

The consultant replies to yesterday's email. She confirms that as far as terminals are concerned, radiotherapy "is there to help symptoms. It does not increase life expectancy."

Thu, 05 May 2005

Still feeling very stressed and completely preoccupied with the dreaded topic of Family Visits. It makes it more of a problem that I would actually like to see two of my siblings, both of whom I would be able to go walking with.

But at least I now feel I've got my thoughts on the Family Visits issue sufficiently well-composed to articulate to my mother. I email to her and copy to all siblings:

Dearest mother,

Just a quick note to tell you how dearly I love you and I'm sorry that I didn't have enough self-control to stop myself writing you an impatient email last night.

I'm afraid that I now feel even more adamant that I can't handle "in the flesh" get-togethers with either C or D, with both of whom there has always been a precarious balancing-act between fondness and major differences over fundamental issues of values and life-philosophy which mean that they aren't people who I would want as close friends. You don't choose your siblings, and the people I want to see at this stage in my life are people who I can relate to comfortably, who I feel like-minded with and who I can trust to actively support me in doing things "my way". I'm afraid that after D's last intervention I feel very strongly that, as with C, in order to be able to maintain the fondness, it's necessary for a distance to be kept - I just *don't* want to field visits from either of them. I do want to add to this that I really do feel that C has worked hard at trying to get the sense of where I'm coming from over the past months, and that I'm very optimistic that we'll be able to build further on that through our email relationship. (Though I do wish she'd take it out of her work mailbox!)

With you the situation is very different because you are my mother and I am very pleased and proud to have had you for my mother. There just isn't the same precariousness about my fondness as there is with D and C. The reason why I find the prospect of an "in the flesh" visit from you impossible to contemplate is because I am convinced it would be too emotional to be bearable to me. And that as a result, I would almost certainly get very stressed and be unbearable to you. I'm just not going to take the risk.

The thing I *know* is that stress is my biggest enemy. I'm certain that this cancer has grown in spurts over the past year, not at a constant rate, and that those spurts have happened at the times when I have been unable to prevent stress getting the better of me. There is now so little space left in my chest cavity that another spurt will almost certainly be the death of me. My aim is to do all that I can to prevent such a spurt taking place for as long as possible.

If I say that something will stress me out, then it has to be respected that this is how I feel, and I just can't be doing with arguing the toss about it, however wrong anybody thinks I am to feel stressed by the things which stress me. If any of the family feel that they absolutely must argue with me, then please respect my request that you put forward your arguments to Ian or Sarah and not direct to me.

I do understand how dreadfully hard it is for you to be in the position of one of your children predeceasing you (although I fear that with 5 children such is a high statistical probability for somebody living till they are 93!). I've been thinking a lot about how this works both ways - i.e. it's also dreadfully hard for me to be in the position of needing to take the feelings and responses of a mother into account when I'm facing death!

We must face up to this fact together and I continue to have confidence that your wonderful intellect will win over and that you will have the strength to take me as I am, and that we will be able, as has certainly been the case for me over the past few months, to get an enormous amount of joy out of our email relationship.

Am feeling not too bad. Taking morphine definitely keeps both pain and sensations at bay but I'm worried that it could undermine my discipline - e.g. making it too easy to loll around in bad positions, stay too long at computer, lift up weights which I shouldn't be lifting etc. I have got to learn to move from having discipline forced on me by pain, to self-induced discipline.

07 May 2005

I have been thinking a lot about an email from an old work colleague who I have come to feel increasingly close to since diagnosis. The email was about her battles with depression. I too am no stranger to depression, not to put too fine a point on it. It weighed me down like a heavy blanket for much of the time from when the kids were born until about 5 years ago, when it got beyond the point where a quick uplifting of spirits by smoking a joint was permitting me to carry on coping. That was when I started meditating - which fell apart quite a lot when I started to get ill and was too knackered to focus. But I think the main thing that pulled me out of the lowest at that point was that I realised then that I must accept that I would never achieve anything worthwhile in my working life, that I was a mere speck in the universe, whatever happens to me the birds will sing tomorrow etc.

There is definitely something seductive about depressive thinking - it seems so profoundly logical when you're doing it...

08 May 2005

The morphine is causing grief on the constipation front. Sarah finds it problematic that I feel inclined to talk about it. And when I consider, I wouldn't want friends or relations talking to me about their bowels. I must restrict myself to discussing only with my medical carers.

09 May 2005

I tell my old work colleague who (to my surprise) is long-term bugged by depression: As far as I'm concerned you came along like a knight in shining armour to defend me when I took my grievance against management boys club. [This was around 10 years ago.] I was *so* grateful, pleased and surprised that anybody in that institution should be prepared to stand up for me so assertively. I rather suspect that there will be quite a few other people upon whom you have made a mark in similar ways - it's not what one expects at all from people who make their livings in management or human resources.

Still feeling very put out by my oldest sister and the Big Visits stuff. I have asked my youngest sister whether she was deeply wounded by my saying I wouldn't choose her as a close friend (which I suspect that my oldest sister is). She replies: "No I am not offended at all - it is merely a statement of fact and I absolutely understand your position in this. Were I you I suspect I would feel much the same way. On my side let me assure you that it does not mean I do not care what is happening to you, or that I lack affection or sympathy for you." And I tell her: I don't want the pressures of being cared for *too* much by siblings simply because they are siblings - this is something where there is a definite mismatch in outlook between me and D! A modicum of not-over-emotional affection seems ticketyboo to me.

11 May 2005

My day was made this morning when I bumped into a village acquaintance out with his 4-year old daughter Nina, riding hat in hand. She is always a child who I enjoy a natter with. So I asked her if she was going riding and she told me all about the horse Cindy and we said our goodbyes and off we went. And as I turned the corner into my little snicket, I heard her say very loudly, "SHE's got a nice haircut, daddy!"

12 May 2005

Finding myself thinking all the time still about Big Visits and how much I don't want them. I am determined to die in "my way", which doesn't want - indeed badly wants not - to "get emotional" - the less people who make me feel under pressure to relate to them in an emotional way, the better! The children, and Roy - are making it so easy for me to keep this up, by getting themselves into just the right mixture of humorous banter and bits of soppiness. And John too is getting there, although he's found it a lot harder. He has to accept that from him, soppiness is something which I don't feel I can cope with.

Sat, 14 May 2005

Have been feeling very happy indeed about feeling up to arranging walks with some old chums little-seen over recent years. I'm starting to realise that the big thing which causes problems is the prospect of visitors who can't do a hearty walk with me - as with my mother and oldest sister. Where do I fit them into my daily routine? What do I do with them when I can't sit comfortably and can't do much talking?

I have sent the emails exchanged between oldest sister and myself to an old friend who shares her sense of the importance of seeing me in the flesh. So, a large part of her reactions are sympathy with my sister. But I have asked her whether she can understand from my perspective why my sister's email upset me so much, to which she says: "How I would interpret it from your perspective (which is a somewhat foolhardy thing to do, and will probably miss the spot completely) is: She is not listening to me, and not respecting what I am saying and how I need to handle this. This is not a matter of being awkward/stubborn (or whatever the appropriate word should be) but a matter of my life and death. The enormity of that needs to be understood. The thought of having to literally face some of this stuff is too dangerous for me."

I tell her: You have got it pretty well exactly right as to how D's email was from my perspective and there is something very supportive indeed about a friend who is prepared to take that jump, think through and articulate what they conclude I must be feeling. Where what you say doesn't quite correspond to my thought processes is: "The thought of having to literally face some of this stuff is too dangerous for me". ... please explain what "I" mean by that!!!

She and her partner have decided to book themselves into a B&B in Hathersage for a couple of days decided upon entirely to suit them, and if I'm up to seeing her fine, her partner goes walking on his own while she and I walk together, if not fine, they'll go walking with each other. This causes me no dread at all.

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