Dear everybody,
Another month has passed in a generally very pleasant fashion, although there have been some days when pain has been a dominant feature and over the past week or so I have been having a much more washed-out weariness than hitherto. My GP decided when she visited last week that this could be related to an irregularity which has developed in my heartbeat - she got the nurse to come round and do an ECG which shows "ventricular entropic beats", which aren't a life-threatening thing. It feels like doing little lurches, rather than palpitations. So she's arranged blood tests next weeks - she says it could indicate, for instance, a thyroid malfunction having developed, in which case pills might combat the resulting weariness. I don't like it when people go into worried or sympathetic mode when I tell them about this. I keep saying: You have a terminal illness. So you get symptoms. Then you die. Stands to reason doesn't it? But anyway, in the meantime, the past couple of days I've felt much less weary than I was last week.
The pain (I wouldn't call heart painful) has been very much concentrated around righthand shoulder and neck, and means that I often take an extra 10 mg slow-release morphine in the day, plus 10 mg oramorph syrup (very quick-acting) to be comfortable at both my daytime rests. But, despite having said that I thought I'd have to up my basic slow-release dose from 60mg (2x30 mg a day) a couple of progress reports ago, I haven't yet had to do this - just an extra 10 mg 2 or 3 times a week. I've concluded that the slow-release morphine doesn't have any greatly significant effect on my mental faculties, it's only the Oramorph that does.
The fact that I've been needing to take Oramorph at both my daytime rests has meant that it's no longer possible to combine either of these rests with "proper" - i.e. alert-type - meditation. Consequently I have made a change to my daily routine which is actually a great improvement. I now get up between 5.30 and 6.30, have a cup of tea, change my bed linen which gives my arms and shoulders a bit of exercise (big night sweats are a common feature of cancer, especially from the head), then go back to bed to lie on my side and do an hour of proper formal meditation. This means I've done a proper meditate at an alert time of day, and aren't trying to do it later at a weary time when attempting to be alert just isn't desirable. I still do a lot of breathing-focussed things in my rest times, especially to handle pain, but they're purely relaxation techniques which don't involve the same disciplining of the mind.
I've been weighing up the pros and cons of "palliative" radiotherapy vs hiking up the slow-release morphine as the next step. From what I'd read on the internet, "curative" radiotherapy involves lots of sessions, but I got the impression that "palliative" - when there's no expectation of being able to increase life expectancy, purely to reduce pain - was normally just a couple of sessions or so. I'd imagined that they would aim it at the righthand corner of the mass since this is where it's causing me most grief. So, I emailed my consultant to ask her what it would involve to go for the radiotherapy option, to which she said that they would want to try to reduce the size of the mass in its entirety, and would recommend 12 sessions daily on consecutive weekdays. The idea of all those journeys sitting in a car all that way, or staying that long in their hostel in order to receive the treatments, is completely daunting - along with the side-effects there's no way it could be preferable to my current level of pain. So this definitely makes hiking up the morphine the way I'll go. My GP also seems much happier with this - she's been quite unenthusiastic at the idea of me going down the radiotherapy route.
When I rejected the notion of 12 sessions the consultant said there was the option of doing just two on two consecutive weeks. There is a part of me which says: as this mass is atypical, isn't it worth giving it a bash of radiotherapy just to see whether it's more effective than might be expected? And another part of me which says: I haven't had the full "Cancer Experience" unless I have some radiotherapy! However neither of these strands of thought are very likely to assume a dominant position in my mind.
At long last my ill-health retirement has gone through - no thanks whatsoever to Human Resources or the Occupational Health doctor. The day after my last progress report (Aug 2nd) I checked with my consultant and GP to see whether OH doc had yet contacted either of them to ask for relevant medical records so he could write his report, and he still hadn't. So, I started thinking about what my well-informed friend Jane had said a while before, that she didn't see in my case why anything more was needed than a report direct from my consultant to the Pensions Authority. On Aug 3rd I mailed the Pensions Authority to find out whether, given the delay and given that I was a cut-and-dried terminal, there was any need for the extra layer of Sheffield Hallam's OH doc's report. They mailed back within an hour to say "we've decided that in a case such as this where there really shouldn't be any delays, we will accept a report from your consultant." I emailed my consultant who sent a report forthwith to the Pensions Authority doctor, and immediately she received this, the Pensions Authority doctor signed the necessary form to release my benefits. 6 days to reach this point where SHU had been fiddle-faddling around since 15th May and had hardly commenced the process.
Even after I had informed Human Resources that I had taken it out of their hands and all that was needed from them was employer's consent to my retirement, they were quite incapable of liberating themselves from their "slavery to the form". They were still busily occupying themselves filling in "Task Activity Forms" for me, detailing in full all the physical and mental activities which were required from me in the course of my job. It seems as if a complete suspension of rational thought processes takes place in these people. The possibility that forms may be misleadingly worded (as are the ones they use for ill-health retirement referrals), and that therefore procedures based purely on interpretation of the form will be illogical, is certainly outside the range of what is conceivable to them.
Lots of people in my situation will especially be wanting to get the lump sum part of the pension payout while they are still fit enough to enjoy it, and will feel much happier once their financial arrangements are cut-and-dried. So, I am now going to make a submission to HR with these objectives:
1. Applicants for ill-health retirement should be supplied with clear written
guidelines describing the procedure and the applicant's entitlements.
2. There should be a fast-track route for cut-and-dried terminals, for which
hopefully I will be able to set a clear precedent SYPA agreement to accept
report direct from consultant.
3. Ill-health retirement applications should be dealt with by specialist HR
advisers.
The Pensions Authority have been like knights in shining armour as far as (2) is concerned, and have been taking the initiative themselves to make Sheffield Hallam do this - apparently other (not all) employers do routinely tell terminals, as soon as they apply for ill-health retirement, to get a report straight from their consultant to pensions authority.
Sarah is nagging me to go and have my rest so I'll write no more. Except to say that finally, I have uploaded my "Terminal Thoughts" diary, from Nov 2004 to the end of July, onto my website - www.joskingston.org. Please report any problems - a few people have reported site being down when they have visited, which I think could be due to my Ian running some automated processes from the same bit of web server - so there, Ian! There are links to three topics which aren't there because they aren't yet written - cannabis, cannulas, and complementary therapies.
I have had a very shitty pain day today after two almost eerily pain-free days. Good job I got my progress report written yesterday. At this point I'm having a "Rest and be thankful" period between bouts - as Sheila Kitzinger used to call it vis-a-vis natural childbirth...
Have been feeling very unhappy about the Parish Council's negativity over Sir Hugh Sykes' offer of concessionary access to Brookfield Manor drive. As I remember it the rumours that Sir Hugh was buying Brookfield Manor were just beginning to circulate when we were collecting the depositions in June 2004 to apply for recognition as a right of way. Quite a few people giving evidence were wanting reassurances that if there was any possibility of restoring concessionary access, then there wouldn't be legal proceedings. It just didn't occur to me that I was doing anything other than telling the truth when I told them that I was sure the PC would be working to reach a friendly agreement if this was at all possible.
Members of Kingston family feel hurt by some of the things I've put online in my "Terminal Thoughts". I was expecting pained reactions, I thought long and hard about it, but I just feel such a strong compulsion to write up the real me, not some sanitised version, and of course one just can't anonymise siblings or parents. I find it very odd that Kingstons consider my writing to be flawed because it's not objective - I make absolutely not the slightest pretence of objectivity, and surely nobody ever expects when reading diaries and the like that they are objective?
I have taken some radical action on the Brookfield Manor front, which I decided to do entirely on my own initiative so nobody else had to take the rap! I have posted a letter to all the 40 people who submitted depositions, explaining that Sir Hugh is offering concessionary access and asking them to return a slip stating whether they would like this to be accepted, or whether they want the legal route to be pursued notwithstanding.
Now that my retirement lump sum payment has arrived, I've lent Ian £13,000 to clear off his debts and get his house rewired, and he's repaying me at £250 per month. Which is just the extra I need to have a comfortable monthly income to live off. This is the sort of arrangement which I find very satisfying. Ian now earns an income which meets his lifestyle needs and desires, so it's timely to do this thing.
I'm nostalging through late 60s memorabilia and come across the account of a memorable event in the life of Roy and myself, from Nov 1968 Reading University student newspaper. (How objectionable "half-caste" and describing racism as "petty discrimination" seem, 37 years later.) Am greatly enjoying exchanging memories of the period 1965-9 with chums from that era, which was definitely the happiest time in my life. Well... up until now. I know it's nuts that I've been so happy since diagnosed with a terminal illness, but this is genuinely how it is. Anyway, who would have thought that 40 years later I'd be arguing the toss with the other party involved as to whether I lost my virginity in my bed or his? But party in question (not Roy, he was a bit later) did acknowledge after a "doh" from me, that this was something which I was much more likely to be remembering rightly than him! I think he's conflating the generic "sex in a single bed" experience with what happened in his single bed.
A visit from two workmates made me definitely decide it's just so much harder relating to people two at a time than one at a time, that I don't want to do it! It somehow made me do too much talking because not possible to establish comfortable one-to-ones - and I was oh, so weary afterwards. But somehow I badly needed their briefing on the goings on at work before I could leave it behind completely, and was most grateful for it. Now I feel I don't want to think about the place ever again.
Pete, a friend from my sixth form days in Cambridge, and I are discussing the heady days of early summer 1966. "Cramming it all in" is a good way to describe it for me - cannabis, losing virginity, getting acquainted with Buddhist philosophy, generally feeling free to think what I wanted and be what I wanted. In a peculiar way, I feel the same sense of liberation again now.
I seem to have a bit of an obsession over establishing exactly what happened when in my heady period of 17-year old liberation. Pete and I have ongoing disagreements over some of our memories - most especially, I think that the first time I smoked cannabis was in his college room in early summer 66 and he's sure he never smoked cannabis in Cambridge until autumn 66. He says: "Maybe we just have to let go of ever getting certainty in this realm." Yes, I think that's right. It seems as if we both have (/everybody has) negotiable and non-negotiable memories. Since my memory of a memory came back strongly into my head, that it was a stock line of mine two years later that I smoked cannabis before I lost my virginity, it has become a non-negotiable memory that I first smoked cannabis early summer '66. And there is no doubt in my mind that it was at that time that the aroma of cannabis was beginning to waft through the staircases of Cambridge colleges. But I can, albeit with some reluctance, imagine "generic college staircase" conflating with Pete's college staircase, and later memories of smoking cannabis with him getting conflated with "first-time memories".
A delightful exchange of emails begins with my old schoolfriend Bridget - another very wicked clergyman's daughter - about our memories of 1966. We haven't seen one another since, but we can yatter away about Relationships and more about Relationships with just the same pleasure as when we were teenagers.
Apart from those bits of fun it has been a wet and quite miserable week. Feeling a bit worried that sister Susan is depressed and my mother believes that what would help her most is if I deleted my open comments about her manic depression on my website. But I still don't really believe that she wants to be a closet manic depressive, have told her I'll delete anything that she wants me to delete and she's said no, it's OK, so I'm going to leave it. I sincerely hope and believe that my great affection for her comes over in what I've written about her, at least when taken as a whole.
I mail the Chairman of Hathersage Parish Council to tell him the results of my "survey" of villagers who submitted depositions to support the Council's application for Brookfield Manor Drive to be made a public right of way. I received responses from 22 of the 40 "deponents" (P.C. Chairman and myself exchange a little banter as to whether deponents or "depositors" is the correct word.) Results were: 17 wanted to accept Sir Hugh's offer of concessionary access; 4 wanted Council to pursue the legal route; 1 "support the fastest solution to gaining access" - which would fairly obviously be by accepting Sir Hugh's offer of concessionary access.
I'm simply not capable of going to this evening's Parish Council meeting (or
any other meetings). I quickly produce a leaflet - BROOKFIELD MANOR:
Villagers say "Friendly does it!" and drop it off to the assembled
Parish Councillors at the beginning of their meeting. I thought they had Brookfield
Manor Drive as an agenda item, but it turns out no - they'll discuss it next
month.
Have just finished the most outstanding book since diagnosis which I'd not read previously. Not So Quiet, by Hellen Zenna Smith (pseudonym of Evadne Price), first published 1930. It's the diary of a woman ambulance driver on the French frontlines in 1915, and was written after reading "All quiet on the western front". It's just a fantastic piece of pacifist literature - Sarah was bowled over by it too.
I've been re-reading Thomas Hardy and thoroughly enjoying it. Plus just re-read Edmund Gosse, Father and Son: A study of two temperaments (first published 1907), which has been one of my favourites for 30 years. It tells of Gosse's relationship with his scientist and fanatical Plymouth Brethren father. I specially love this bit when at the age of six he asks his father about the sin of idolatry :
" I pressed my Father further on this subject, and he assured me that God would be very angry, and would signify His anger, if anyone, in a Christian country, bowed down to wood and stone. I cannot recall why I was so pertinacious on this subject, but I remember that my Father became a little restive under my cross-examination. I determined, however, to test the matter for myself, and one morning, when both my parents were safely out of the house, I prepared for the great act of heresy. I was in the morning-room on the ground-floor, where, with much labour, I hoisted a small chair on to the table close to the window. My heart was now beating as if it would leap out of my side, but I pursued my experiment. I knelt down on the carpet in front of the table and looking up I said my daily prayer in a loud voice, only substituting the address 'O Chair!' for the habitual one.
Having carried this act of idolatry safely through, I waited to see what would happen. It was a fine day, and I gazed up at the slip of white sky above the houses opposite, and expected something to appear in it. ... But nothing happened; there was not a cloud in the sky, not an unusual sound in the street. Presently I was quite sure that nothing would happen. I had committed idolatry, flagrantly and deliberately, and God did not care."
As somebody who became an atheist at the age of 7, when I asked my clergyman father "If God made the world, who made God?" and got the reply "Shut up, you talk too much", here is somebody who I consider to be a true kindred spirit.
Pain has been wracking this morning... have taken loads of extra morphine but still feeling wiped. Perhaps it's a punishment for being complacent and getting myself too far away from accepting I'm going to die. Have an email blubber to my incapacitated chum - friend is coming for a walk in a minute and I don't want to do a face-to-face one.
Still doing my walking though - and am very pleased to have received an unreserved apology from the Director of Human Resources at work, following my submission on my ill-health retirement experience.
My incapacitated chum tells me about her doctor, who "doesn't give out any signals except stern briskness, and a desire to get out of the house as soon as possible. Mind you, he only ever sees me when I am completely at the end of my tether and ready to scream with pain, but I feel he should be able to deal with people in such a condition. If he was a little more receptive, I might be less anxious to avoid him and he might see me when I am more compos mentis."
Yes, I tell her, the regular visits which one routinely receives from GP as a terminal have the great benefit that they get to know the normal you, rather than the usual situation where doctor only sees the end-of-tether you and thus naturally will have a skewed impression. Am also oh so pleased that both my GP and consultant are women.
I entertain myself greatly by imagining my spirit chums beaming themselves off to Matlock to visit my incapacitated chum. I get out the map and also get out my memories of cycling with Roy to Matlock and back a couple of years ago. This was when I was first thinking there was something up with me - bouts of dreadful shoulder pain and unnatural weariness. We came back over the tops, wheeling our bikes up Matlock Bank then rode up round Sydnope Hall, The Woodlands, Beeley Moor, Fox House and thence to Hathersage. I was so tired on the stretch to Fox House that I didn't think I was going to make it and knew that never again would I be able to do something so demanding, but it was such a wonderful ride ...
Oramorph isn't bad stuff for going into silly mode with, so I go into great details, 2.5" map in front of me, contemplating the route which would best suit my spirit allies. Highlow is a bit grotty if you're actually living there what with the farmer using his quad bike to dump rubbish on the top, and before that they've had centuries of man-made shit to live with from the lead smelting that went on there. So I thought that there was potential for persuading them that it would be an excellent outing to head off to Matlock. From Highlow it's an easy beam across to the stone circle at Froggatt Edge which has the necessary transfer capabilities for the onward journey. From there, they have a grand run along Curbar Edge and Baslow Edge and then on down to Hob Hurst's house behind Chatsworth on Beeley Moor, where Oker Boker (who is currently staying at Highlow of course) has an old pal - the name is said to mean "house of the hobgoblin of the wood". Fortunately, Oker Boker also has a close relation living in Hathersage - he shares the Tommy Cooper-like buck teeth, he has an air of eccentricity, and he is also magic, in that he can ride his folding Moulton bicycle all the way from Hathersage up Surprise View without getting off to push. So, Oker has arranged to borrow his Moulton, and once they have beamed across Harland Edge they join the road network and have a lovely bike ride down to Matlock Bank and so to my friend's house. My spirit chums don't have to worry about the journey back - they're like homing pigeons in that respect, you just have to help 'em out to get them where you want them to be.
I have found it a very satisfying thing to do, to contemplate the amazingly beautiful ground which lies between us and which I'm unlikely to see again except by recreating it in my mind.
A pain day but I still manage to invent some fun with my spirit friends. It's a bit like children inventing invisible playmates - Sarah had one called Aishan for quite a long time.
It's been a week since I last had nasty pain so I'm not doing too badly.
My birthday on 27th, and I've decided my most wanted present is a shopping basket on wheels like my mother has, so John's getting this for me.
My 57th birthday. My mother rings up. She completely mishears me when I tell her I'm having some pain and don't want to talk, says she's pleased I'm "getting over my bad patch" and I lose it completely at her misunderstanding, so she's in tears as well.
I email her an hour or so later to try to explain: Thinking of how I'm doing in terms of such things as "Getting over a bad patch" is to me a variation on the theme of being in denial. I have regular bouts of bad pain - at present though, not more than once or twice a week. Left to my own devices (i.e. if I don't have to talk to anybody) I can manage them, and they don't prevent me from getting a lot of joy out of life. But I have a very large mass in my chest cavity, which is growing. It's inevitable that it's going to kill me. And that en route, the pain as it presses more and more on my organs can only get worse, and happen more rather than less often. Some kinds of cancers do take the form of "bad patches" and remissions over a long period of time, but a big and growing physical mass which hasn't been halted by chemotherapy is most unlikely to work like that and so far hasn't taken that pattern. What I'm living with is a progressive deterioration where there are more and more hard days, and where I have to acclimatise myself to needing more and more morphine and thus becoming more and more of a blob as time goes on. The imponderable is how rapidly this is going to happen.
I can handle this. The scenario does nothing to prevent my enjoyment of the day, for the day. At the moment even on the bad pain days I can keep enough on top of it to enjoy myself. I just feel thankful that I've had the enormous bonus of so much time when I have felt unexpectedly fit.
I notice that writing this email has stopped me thinking about my pain! Just getting the brain stuck into something has the very beneficial effect of distracting my mind from it entirely.
I have a nasty feeling that the game of backgammon I played with Ian yesterday evening could have been the cause of my bad pain day today. All that shaking of dice with my right hand in particular. However I guess I don't *have* to shake the dice or move the pieces myself.
Went ceremonially to the recycling bins with old newspapers to celebrate my new shopping bag on wheels. Also purchased myself a pair of bargain-priced boots which are very comfortable indeed although I miss the creak, creak creak of my old ones. (Hathersage has no less than 3 outdoor shops.) And was very pleased with the Amnesty International nightshirt which Roy gave me.
