Having pruned down the recipients list considerably over the past week, I now send out my monthly progress report to friends only. It's devoted entirely to the "flip" (brought on by stresses in Kingston family relationships) which is the major theme of my October diary. This will hopefully be the only Progress Report which I don't put on my website. I was writing about what I'd been going through as a letter to friends, not as something which I wanted anybody and everybody to read.
The final paragraph was: And now I'm feeling much better again, a weight lifted from me, sleeping fine, meditating well, very little pain and have decreased my morphine dose again. But still very weary, feeling that my poor old head has taken a real battering. My mother says she's enjoying the exchange of pictures now she's "settling down to it". I'm just feeling that the most important thing is that I stick to my resolve to be firm and clear and not get caught up in the spiral of trying to explain, trying to be understood.
A friend replies to my progress report "Your dad - and my dad too!" Like me, she always had the idea in her head that as soon as her mother died she would get all this stuff out of herself in the form of a thinly-disguised autobiographical novel. But of course for me the plan gets completely foiled when I go and predecease my mother (or it looks as if I'm going to).
I haven't found any writing anywhere which acknowledges the enormous added emotional burden when an adult is facing death, of dealing with the distress of a mother. For me it has been by far the most difficult part of the whole situation. I think it's important to say so not just for the sake of me giving a truthful account of my personal experience, but also because it's uncharted territory.
I'm given a reference to a new report: "Harm Reduction - the cannabis paradox" It takes me three reads to begin to feel that I'm getting even the slightest grasp of the biology and the concept of the endocannabinoid system. However, it reinforces my conviction that the decision I made at diagnosis to maintain my cannabis consumption, was an eminently sensible one.
My mind is still very full of thoughts on a generalised, abstract level about predeceasing one's mother. People can see on this generalised level that it's a disturbing situation - "not natural". But it doesn't tend to get thought about any more specifically than that. And yet I suspect that if they reflected honestly about it, most adults would realise that having an elderly mother closely involved is not what one wants when facing death!
I receive an email from another friend who went through similarly awful experiences with disfunctional post-war pater.
Very pleased to be reassured this morning by GP that she didn't think there was any reason why it should be a problem for me to be on my own in the house at night. I get desperate for space to myself if I don't get it at least once or twice a week.
Paddy the dog has been very poorly, with what was originally diagnosed as sciatica but turned out to be something having got stuck in his paw and caused an infection. By the time he went back to the vet for his next appointment his paw, which he'd been desperately biting at, was very bad and he had to be knocked out straight away to get it flushed out. But he seems to be recovering fast now that this has been done and he's on antibiotics. A great relief that his walking days aren't over yet.
Feeling *much* better now and almost settled again on the pain management front, which had gone pretty up the creek. I tried not taking Dicloval (Diclofenac) which is the very strong NSAID (non-steroid anti-inflammatory) they give standardly to people with big tumours alongside morphine. I'd forgotten the daily pill on a couple of occasions and hadn't realised till the following day, which made me wonder whether I really needed it. Then a week or so ago I started getting some twingy pains in my stomach which made me decide that if I went on taking it I would also have to start taking the stuff they dish out (Lanzoprazole) to counter the notorious bad effects of Dicloval on the stomach. So first I decided to test how I was without the Dicloval. Initially it didn't seem too bad, just minor added discomfort in my shoulder, but after three days the fact that this extra pain was there as a constant was getting me down. So I've gone back on it and my poor old digestive system is having to adjust itself to the new burden of this Lanzoprazole. But it's amazing how expert you can get at tweaking Lactulose doses - which I need to take permanently to counter the effect of the morphine.
General observation: http://jpet.aspetjournals.org/cgi/content/full/303/1/340 reports that tests measuring the levels of writhing of laboratory mice, indicate that "chronic cannabinoid exposure will alter the activity of the NSAIDs... Unlike the other NSAIDs, diclofenac remains active, albeit significantly less active, in animals given chronic THC." Human testing by one "chronic" cannabis user (myself) shows that diclofenac continues to be active at a significantly and usefully high level. This result raises the question of whether the suffering of laboratory mice, as described in the tests reported, is useful proof of anything as far as human responses are concerned.
An old friend from Cambridge schooldays gets in touch after reading my website. He has solved the mystery for me of whose college room it was where I first smoked cannabis in the early summer of 1966. It won't niggle at me any more now, so I'm pleased about this. And delighted to be back in touch with another chum from that very happy era of my life.
Went down with a chest infection on Saturday (typical, having started the day feeling "much" better!) and have been spending large quantities of time sleeping since then, although did manage to get out for a reasonable walk on Sunday with John in a somewhat zombie-like state. I think the sleeping has been a jolly good thing, I was just feeling so completely whacked and weary after all that stuff with childhood memories and relationships with my birth family. But now my mind is pretty well clear of it even though my body feels crap and my brain can only work at a low level. Doc has been round and given me antibiotics so hopefully will start feeling better in a day or two..
Now my head is just about feeling as sharp and clear and positive again as it was before last month's flip happened, and I'm not feeling scared any more that I'm going to go into a big depression. I do see my flips as having similarity in their patterns to those of my sister who's got manic depression, except that the flips/highs in my case aren't preceded by a long period where it's evident that I'm getting badly wound up - it just comes out publicly all of a sudden. I do have the great benefit that my response is to go straight into action mode - there's always a part of me which stays outside the flip and watches it, just as in all those childhood memories there's a me who's standing outside the action and watching it. But as an adult that watching part of me can say "right, top priority is to get things sorted", rather than, as a child, just impotently watching.
Still problems with my mother not hearing what's said to her. My oldest sister reported to her that the mass was growing much more slowly than the hospital expected. My mother promptly telephones other siblings and tells them that the mass has stopped increasing in size. It's very hard work (for oldest sister as well as for me) not to get hair-tearingly wound up when what I say is distorted into something that is vastly more optimistic than the facts which I have communicated.
Doh, I have to admit that my head is actually still very fragile. I've gone into this anxious state about my relationship with my GP and worrying that she's finding me too threatening and challenging to the values which she cherishes, such as big happy families. I felt she was reacting to my flip by reverting to a "paternalistic" mode of doctor-patient relationships - the norm in a terminal context being much more at the "mutualistic" end of the spectrum, and that being what I usually get from her. She was very brisk and brusque. I felt as if she was frightened of me, and I know I can be frightening when I flip. She has no basis for knowing that however angry is my weeping and wailing, I never lash out physically.
Decided I very definitely didn't want to be on the community pyschiatric nurse's visiting list, which was one thing GP suggested. I wrote GP a note to tell her I'd decided this and to clarify a few other points where I felt she was getting the wrong end of the stick about things. One of these was me trying to explain to her what I perceive as the part played by cannabis in my armoury of resources for handling pain. I don't think that cannabis acts much if at all to prevent pain - what it does would be better compared with gas and air, as dispensed during childbirth - i.e. if you're suffering pain, it quickly and effectively assists in detaching yourself from that pain. (But with the benefit that the effect lasts considerably longer than gas and air, and is less intense, therefore letting you get on and do things.)
Have continued to have pessimistic niggles about GP and wondering whether I should think about changing to a different practice where I know there's a woman GP who's a like-minded kind of person. But it would be a very major step to take, and I will be much happier if a satisfactorily mutualistic relationship is re-established with current GP.
My walks have been at a somewhat wimpish level since chest infection. Although the least I've done on any day was my pre-breakfast mile and another mile in the afternoon. I'm now back to doing 4-mile afternoon walks again but keeping off the more demanding routes because getting much more tired than hitherto and also a lot of back pain. However I feel very happy about my new mattress topper which I purchased online - my poor left hip was getting very hacked off with how much of the time I was spending lying down on it - for the past few months I've avoided lying on my righthand side because of pains in neck and shoulders.
Have been spending quite a bit of time (and so have friends) seeking out counsellor possibilities in Hope Valley. I feel I ought to have somebody briefed and "waiting in the wings" in case I go into flip mode again at any point in the future. This is all I want from a counsellor - not to go through extended therapy dragging awful childhood memories to fore again. I think that would be a stupid thing to do at this stage in my life. Anyway, the restrictions of needing it to be somebody who can do home visits, and who is willing for me to do a lot of the communicating by email to save me from excesses of talking, are a great limitation on the options available.
Have had some monumental backache to contend with while walking on a couple of occasions in the past few days. It occurred to me that perhaps this was down to me putting more weight on my trekking pole as a result of being less fit, and consequently putting pressure on my back which I don't normally do. So yesterday I very consciously returned to normal practice of using my pole only to prevent falls rather than to take weight, and sure enough was able to combat the backache. The kind of little workaround which gives me a great deal of satisfaction.
Have been having fun reading my school reports. Age 9, headmistress says: "I wish she could lose that self-conscious manner." "I understand her, but she appears 'odd' at times". At secondary school age 11: "an enthusiastic and interested member of the form". 12: "must persevere with the subjects she finds difficult". My standards aren't steady. Graded C- for posture. 13: "could be more punctilious in matters of tidiness and punctuality." 14: "working very well. She is always cheerful and helpful and her contributions to discussion are responsible and worthwhile." But by the end of that school year: "Jocelyn has good ability and an easy-going good will but her indolence prevents her attaining a proper standard in all her subjects. Sheer hard work would make a lot of difference." 15: "She is a thoughtful girl, and her contributions to class discussion are original and interesting. It would be helpful if she would pay stricter attention to school regulations."
After changing schools post-O levels when we moved out of suburban London: 16: I have settled down well in my new school and am doing thoughtful work. "Jocelyn reads Chaucer fluently, accurately, and with great sensitivity." (I feel very proud indeed of that! Honestly...) In history, my oral work "is a help to the whole group". I make "valuable contributions" in scripture lessons. 17: "Keen and intelligent work, though Jocelyn's progress is sometimes hampered by her insistence on being in the right mood. One sympathises, but it is an unscholarly approach."
So there - is this the closest one can get to an "objective" picture of me as a child?!
I get great pleasure from my incapacitated chum writing about: "a rather wonderful Norwegian film I've got where a time and motion study is being carried out by a futuristic kitchen firm from Stockholm in a small very isolated village in Norway, concentrating on single men living alone. Each house is allocated an observer who positions himself on what looks like an umpire's chair in the corner of the kitchen and notes down every move made by the resident when he comes into the room. We see the antics of one middle-aged bachelor very accustomed to his solitude and set routine trying to live life without coming within monitoring range, and the poor guy sitting up in the corner with his sarnies doing his best to get something down on his chart. They slowly get accustomed to each other, then start to cheat and interact (completely against the rules), then become friends, with the result that the Swede gets the sack and the friendship is abruptly terminated. It's a lovely, quirky film about a very strange situation which really sticks in the mind and makes me giggle when I think about it." My pleasure is because the last of my extremely rare visits to the cinema (before diagnosis - none since) was when Roy and I went to see this very film - "Kitchen Stories". I still often laugh about it. I loved the mystery of the umpire's chair fixed to the top of the car on the journey from Stockholm.
Have had occasional bouts of regret at not being able to watch films or television at all. It's not just due to not being able to sit comfortably for long enough, I couldn't do it from bed either. Even for short snatches I now find television very difficult - it seems like it's just too much of an input into my head, makes my brain feel overwhelmed. And keeping my focus for any length of time seems quite impossible. I'm certain this is the cancer not the morphine - was aware pre-diagnosis of strange things with how slowly my brain was working, how difficult I was finding it to do meetings or anything which involved on the spot dialogues as opposed to leisurely email interaction. It's gradually got more marked - e.g. I could enjoy playing backgammon in the chemotherapy days but can't now.
Definitely not in analytical mode vis-a-vis the past few weeks - my brain wants to be lightweight for a while.
My friend Maureen comes for a walk and brings her scissors so she can cut my hair for the first time since chemo. It had got to be woolly in a way which I considered too eccentric-looking and I wanted it closer to my head again. Now every time I pass myself in mirror am very pleased to no longer be a fluffy me. It really is an ace haircut.
Relieved because my GP has clicked back out of "paternalistic" doctor/patient model to something more like the desired "mutual" model.
The past few days the sun coming up above the frosty fields has been stunningly beautiful, but my nose has got very cold indeed on my morning sorties. Have decided that my morning mile doesn't have to be before breakfast, it makes more sense when it's this cold to give the sun more of a chance to get into action before going out.
An old friend of mine shares some memories of when she was diagnosed with a brain tumour a few years ago. "My parents had been due to come over and the tickets were booked but the visit was cancelled. The reason given and my memory was that it was because it would be too hard for my mum. As I was re-reading your website I suddenly remembered it was not really that but because I did not want them to be here. I did not want to have to deal with their distress at my life when I was struggling with that myself. An interesting revelation about myself."
Still finding myself preoccupied for far too much of the time with Kingston family issues. They just keep niggling away at my head. Still, it's at a level which is irritating rather than frightening - I feel pretty confident I'm not going off into another flip.
The man should be coming to do carpet estimates in a minute - incentive to get decorating finished off over Xmas. Feeling remarkably fit.
Will be glad when Dec 3rd is past - anniversary of my diagnosis. They were so definite then that I was very unlikely to be alive in a year, and I've had a distinct jittery feeling the past few days which I'm sure is superstitiously related to that...
Have been exchanging emails with a counsellor who lives in Hope Valley and would do home visits etc but not 100% confident that we'll "gel". Am beginning to think that this quest could turn out to be a little bit tedious.
I've been in jitterbug mode a lot of the time over the past few days. By late afternoon when I go for my afternoon rest I'm getting a lot of "sensations" in my chest when I lie down. I think it could be pressure on my heart taking its toll but I get some comfort from the fact that in the morning when I wake up and then do my hour's meditating lying down, it's not a problem. As a preferable theory to pressure on the heart I'm hoping that this is an anxiety thing. I feel I need to get past Dec 3rd for me to settle down comfortably to however more weeks/months/years remain. However my suspicion that there's a physical problem developing is at the same time really quite strong. Reinforced by the fact that if I lie on my righthand side (something I haven't let myself do for months because of pain being concentrated in rhs shoulder and neck), then these sensations aren't nearly so bad. Which seems logical since mass is largely on righthand side, extending to above and in front of my heart. i.e. if I'm lying on my left hand side then the mass is putting pressure onto my heart.
This is all a bit of a drag if I let myself think about likely future scenarios of losing capacity to sleep on my lefthand side and having to stick to sleeping on right side, whatever the pain level in shoulder and neck etc.
It's so strange this pain business. Yesterday afternoon/evening pain in *left* shoulder/neck/arm got unbearable, and I'm sure it was because, given my jittery niggly underlying state, I'd put myself through too much by seeing this counsellor in the morning and then going out walking with a work friend in the afternoon. Heavyweight tears for poor old Sarah in the evening. She is very determined not to let herself cry when I'm in such a state - am not entirely sure this is a good strategy...
Anyway it's a plus that this has forced me to sleep on my righthand side again
and I have done so without grief. At least I no longer feel that life is going
to
be impossible
if anything happens to my lefthand side which means I can't sleep on it - a
fall is very conceivable.
