January 2006

08 Jan 2006:
Progress Report

Dear everybody,

Season's greetings to all of you.

I have had a non-Christmas, i.e. my daily routine as it always is, just as I wanted. Ian's partner Caroline has a nine-year old daughter, Megan, and they + Sarah did the family Christmas bit in Heeley while John came out to Hathersage. We went for some excellent walks together and ate very simple food together and got Important Preparation done for The Carpet (see below) and otherwise did our own things. Then off went John back to Heeley and across the Pennines came Roy for a few days, which as always was very enjoyable. How excellent I think it is to have a relationship with somebody I only see every three weeks or so, me being my own person and not being defined as part of a couple. This is in fact always how I have wanted my life to be but goodness me it's a battle to assert this sufficiently resoundingly to avoid getting sucked into Convention.

Walking at this time of year in the late afternoon sunshine and the stunning copper glow of the edges, especially Stanage, is definitely a redeeming feature of the otherwise hateful and these days fearsomely invasive Bracken. And there have been some wonderful skies as the sun sets. Also some very naff periods underfoot, with frozen slush making footpaths, as well as pavements, places where all the attention has to be on one's feet, on avoiding a fall. I haven't been too hard on myself if I don't meet my 5-mile a day target, but there haven't been many days when I've gone below it, and on those days I've done at least 3 miles. I have made my Routine more flexible by introducing the option - exercised especially when weather is dodgy - of an additional morning walk of 1.5 miles before my midday rest, up in a very pleasing loop around the churchyard. This is extra to my pre-breakfast morning mile across the fields to my friend the oak tree just before Leadmill Bridge, which I rest against for a minute or two as I look towards Highlow and feel a very strong and pleasurable sense of one-ness with nature. So, that means I don't need to do such a long walk in the afternoon to have the satisfaction of having done my five miles. And I also get quite a lot of days when I can feel very pleased because I've walked a total of more like 7 than 5 miles.

Still climbing hills happily with no breathlessness problems - my right lung still not drawing as well as my left one but I don't find that in the least bit surprising given that the mass is situated on the rhs of my chest cavity. If there was any fluid in the lung as GP suspected at the time of my last progress report, it seems to have dispersed of its own accord - she couldn't hear anything untoward at her subsequent visit. Pain has been pretty manageable over the past month, i.e. bad pain days generally not more often than once a week, and never two consecutive days. I find it much preferable to "ride the pain" for these isolated days, rather than upping my morphine dosage to a level where "breakthrough pain", as they call it, is completely avoided. In this respect I seem to be going against the orthodoxies of morphine administration in a palliative context. But I feel very aware that this "riding the pain" approach wouldn't be tenable if the bad pain bout continued longer than a day. If/when that happens I will up my morphine dose forthwith, as I did in October, when being in a state of stress was accompanied by greatly increased pain levels. But I have now reduced right back to my pre-October level - 40mg slow-release morphine tablets twice a day, and a very occasional dose of Oramorph.

It's a long way from my reality if anybody assumes on reading the above that the days which aren't "bad pain days", are "painfree days". They aren't. They're "normal pain days". i.e. At any point in the day, bad pain can be brought on if I ignore my body telling me (by issuing minor pains) that I've done enough on the computer, or enough decorating, or that I can't unscrew this lid or sit and watch this telly program even if it *is* only 30 mins long or carry this weight or whatever. So I have to be vigilant - it feels like being constantly, without any letup, responsible for a lively toddler, always having to be on the lookout for risks and dangers lurking on the horizon, ready to leap in and take the necessary preventative action. The difference with a bad pain day is that on one of these, the pain is there, in my neck and shoulders, when I wake up - things have locked up, gone into spasm, or whatever. This is most likely to happen if I've got myself into a bad position during the night and have ignored little signals coming to me through my sleepiness that I need to wake up enough readjust my posture.

This having to keep a constant discipline on myself is very tiring! Especially because my "normal" state of health, day in, day out, is that I feel as if I'm coming down with a dose of flu. i.e. Minor aches and pains in various parts of back, sweaty, shivery, cattarrhy in my neck, and voice feeling very weak. Usually symptoms not too bad when I wake up in the morning, but gradually gather momentum over the day in the same way that flu often does. It's equivalent to flu at a level which gives you no real option except to take to your bed, which of course is what I do for the large part of every single day - nearly 2/3 of it. But unlike flu I know that spending the day in bed isn't going to make me get better - tomorrow and the next day and the next I'll still feel just the same. So, it's a matter of extracting from each of these flu-like days the bits of time when I can summon up at least some energy and lucidity of mind, and getting the most possible enjoyment and satisfaction out of these hours.

It can be very difficult to accept how little I'm capable of doing. Over the past few weeks I've had to resign myself to the fact that "project managing" preparation for The Carpet has consumed virtually all of my mental and physical energy. Orchestrating the family into doing all the nasty remaining bits of decorating. Sorting out the "critical paths" for who did what when. Fielding protests from Sarah that my insistence on her getting into the corners of skirting boards etc. was "anal". Forcing myself to stop as soon as my body told me to stop on the bits I was doing myself, not letting myself do just that bit more to get something finished. Finding a friend who would lend me a bed for my midday rest on the Day of the Fitting.

Fortunately that part of it was easy, and I positively enjoyed the experience of taking over somebody else's very delightful bedroom, in the cluster of houses on the other side of the brook around the old needle mill. Just a few yards away but a completely different ambience, a whole different set of village sounds, from my cluster of 1935 council semis.

Do not imagine however that this more olde-worlde cottagy feel is something which I'm jealous of. Oh no! I love my little bit of the village. It has something of a garden city utopian feeling about it, with its semicircular layout and generous gardens. And I love my house, which is light and airy and well-built and was just waiting for an injection of imagination to turn it from a scrothole into as delightful a home as anybody of modest aspirations could possibly wish for. With the most excellently fitted carpet and kitchen flooring courtesy of T. Nutt & Sons Ltd of Clay Cross, "A family business since 1869". Who attracted me because they offer a home selection service, so I could sort it all out without the need to Go To Shops which I consider pretty much an impossibility. In the context of which I'm mighty glad that all this didn't happen to me five years ago, before the advent of online shopping. I would have so much less independence without it. It had never occurred to me what a wonderful liberation it offered to the housebound until I was in this situation myself. And no, it hasn't turned me into a shopoholic, just removed from my life the need to drag around shops which is something I've always hated anyway.

Returning to the constant flu analogy, I always thought that the excuse to go to bed for a day or two was a big plus of going down with a bout of flu. Resting can be very enjoyable. And I've been discovering more and more how much pleasure I can get out of my imagination at rest times. I will supply you with an example. Breathing in from my toes to my head and out from my head to my toes is something I've found very effective from the start as a relaxation technique. And when Ian was little, some of his toes had names - Tony Toe is the only memorable one. My imagination recently decided that my left toes were the Western Isles (of Scotland) and my right toes were the Eastern Isles. And that some of my toes were particular islands which I've been to and have wonderful vivid memories of. The big toe on my right foot had to be Yell, (Shetlands) which was the first Scottish isle I stayed on when I was about 20, and my old schoolfriend Liz was up there making wildlife films. It's obviously handy to have a toe called Yell with these associations ready to spring to mind when bad pain is encountered. Next door to Yell is Unst, which has to have a toe devoted to it because of the Unst Bus Shelter - http://www.unstbusshelter.shetland.co.uk. Then the little toe on the right foot has to be Muckle Flugga, the most northerly of the British Isles and just a lighthouse really. Which leaves the middle two toes to be Sanday and Rousay in the Orkneys, scene of many happy holidays as a result of oldest sister Diana living there. Turning to my left foot, the little toe had to be St. Kilda, "outpost of nowhere", which I've never been to but have read lots of books about. The big toe is Barra (as featured in the film of Whisky Galore) because that's the Western Isle where we had a brilliant holiday when Ian was 6 and Sarah was 1. The other 3 toes on that foot are islands without names.

So, each breath can be a visit to one of these beautiful calm tranquil peaceful etc etc places... how satisfactory can you get!

Enough for this month. Next month, all being well, I will have a Hospital Visit to report on.

Lots of love, Jos

11 Jan 2006

Have been a bit overcome with weariness the past few days. Had to push myself very hard to do a progress report this time.

12 Jan 2006

Sometimes my walking diary gets stupidly full and I've found having weekday companions 5 days a week is too much and I get a cumulative weariness - I'm now keeping it down to 3 days a week and the other 2 weekdays go out with Sarah or on my own.

I think my total number of regular walking companions isn't far short of 20 - my friend Andy says my walking calendar is "a bit like having a dance card at a ball"! I never imagined I could be so popular - thought I'd descended into being really quite lacking in friends before I moved to Hathersage, which all of a sudden seemed to make me more Socially Desirable. It's just excellent that so many of my longstanding chums have wanted to make afternoon walks with me a regular thing and see it as a good use of taking a half-day off work every now and then. It does make me very happy.

13 Jan 2006

Something of a battle against depression due to a distinct sense of deterioration. Weariness over the past couple of weeks has been as a result of breathing having become noticeably harder work.

14 Jan 2006

I did a lot of thinking about my intellectual problems with Buddhist "metta-ing" over Xmas and feel I have moved myself forward quite a long way. But I still feel preoccupied with the tension between my belief in truthfulness, and the time, energy and patience involved in simultaneously being kind. I have updated my online bit about breathing/meditation to include my thoughts on this - and even added handy hyperlinks to file to get to specific sections quickly - http://www.joskingston.org/Terminal/pragmaticmed.html#Item7

I have also made some changes to what my piece on cannabis says about skunk. I've always stuck to old-fashioned resin, but it becomes harder and harder to get decent stuff. I have finally relented and started consuming skunk instead - using very small quantities indeed compared with how strong modern youth roll their joints. But there's still something about it that I don't quite like... In any case, breathing has deteriorated sufficiently for me to find myself quite often sitting down to roll a joint and then thinking no I don't want one, don't want to be smoking...

15 Jan 2006

An old university friend tells me of her husband's fears that he would befuddle his mind if he used cannabis to combat his pain from arthritis. I tell her: Probably because I'm so accustomed to cannabis, I don't find it a befuddling factor - I'm used to controlling my mind and writing under its influence, just as many people accompany writing with drink. In this respect the morphine is more of a problem - but all the same, much less of a problem than I feared it would be. The slow-release tablets which I take twice a day don't seem to have any significant effect on my lucidity at the relatively low dose I'm currently taking - the only effect on my mind which I notice is that I have to push myself a bit to overcome lethargy. It's the Oramorph quick pain relief syrup which does befuddle me considerably and I keep its usage down to a minimum - i.e. avoid taking it except when I'm quite happy to be drowsy (rest times) or as an emergency strategy - I carry a dose in an oral syringe when I'm walking to take if backache strikes badly, as it quite often does, but fortunately not until towards the end of a walk.

Annoyingly, I can't stop feeling niggled by my mother's latest suggestion, following from my last progress report. She "would like" me to associate one of my unnamed toes with Fingal's cave, Staffa. No, mother. My toes, my associations. And caves when wanting to find some light in the midst of the darkness of pain? I don't think so. I do wish somebody would write a book called something like "How to grow Very Old without becoming Very Exasperating"!

19 Jan 2006

When I revised my piece about breathing and meditation last week I included a quote from Basho, a C17 Japanese poet, which I've reflected on often since teenage days. It left me then with very negative feelings about Buddhist "detachment". In his travels, Basho comes upon an infant who has been left to die. He gives his food to the child but then passes on, abandoning the infant to its fate. Roy says: "I'm probably dim but I think Basho should have taken the kid with him."

I tell Roy that's exactly how I reacted until now. Being very ill has given me a sense of what it's like to feel completely powerless; my day-to-day survival depends on recognising and accepting that powerlessness. Since powerlessness has suddenly become very conceivable to me in situations where once it was quite inconceivable, it no longer appears as simple as "how could Basho not take the baby with him". This realisation is quite significant in my life - as with trying to summon up energy from somewhere to be patient and therefore kind to my mother, not to lose it completely on that front...

I've decided that if reincarnation turned out not to be a load of bunkum I would quite like a bash as a bird, and a collared dove would be my choice.

Hospital appointment today has left me a bit weepy, but I'll save talking about that for my next progress report. In summary, righthand of diaphragm has ceased to function and consultant doesn't expect me to see the year out.

20 Jan 2006

My brother and his partner came this afternoon, bringing as always an extremely tasty lunch with them. We had a good walk managing to be in woods etc in spells when wind and rain were prevailing, and there were some pleasant patches of sun. I evaded telling them anything about yesterday's hospital appointment - felt I didn't want to discuss with anybody until I'd reflected a bit further on it and talked to my GP. I was a bit shocked by the consultant being so pessimistic on the prognosis front. The sneaky part of me which insists on having hopes, is in there somewhere setting up the target of reaching the end of 2006 in good spirits. I feel that I must squash it and squash it again it and firmly hold to the sensible self who sticks to the principle of living in the day, for the day, otherwise I risk losing my positive spirit when I need it most at the end.

24 Jan 2006

I decided it would be enjoyable if I recognised all the different bird sounds which make up the dawn chorus as I'm so often listening to it during my morning meditation. John lent me a tape of garden birds. Which I will probably need to hear at least 50 times for it to sink in, but it's the kind of listening which mixes well with resting. However, when it came to my collared dove soulmates I was *very cross* with the description and associations used to describe their song - how it's "rendered" as they say. The sound which the collared dove makes is a 3-syllable cooing, emphasis on 2nd syllable: der-DERR-der, der-DERR-der. Which I find peaceful and calming, albeit very slightly melancholy. Doves being doves, it seems obvious to me that it should be "rendered" as "Be peaceful, Be peaceful". But what are we told by this tape? That the cooing of the collared dove has a "bored" sound, and that it can be rendered as the repetitive droning of a football fan - "Un-I-ted, Un-I-ted". Well honestly, what a load of cobblers. At any rate a football fan would only sound like that if their club was at the very bottom of the league. Still, it's good that it's made me realise that what they're really saying is "Be peaceful". I like that.

It's been very pleasantly sunny this morning and I've had a couple of little stints clearing off dead bits of growth in the garden so the snowdrops aren't surrounded by detritus. Am still fine to do such jobs as long as I get down on my kneeling stool and don't attempt to bend over which makes me feel completely revolting.

25 Jan 2006

I'm feeling preoccupied with my breathing, which seems all over the place - not settling down to a clear pattern. I email consultant over this dilemma: would you think for normal breathing purposes it was good for my right lung to keep it going as much as possible, or best just to leave it quietly to rest? She replies very definitely in favour of concentrating on improving my left lung.

At such times a bit of Googling can offer some pleasant diversion. I just went and found my favourite poem from a children's anthology we had when I was about 9 and which has stuck in my mind ever since:

so much depends

a red wheel

glazed with rain

beside the white

Which is "The Red Wheelbarrow" by William Carlos Williams - I just googled "depends red wheelbarrow" and there it was for me. Hadn't thought before about haiku-ish things attracting me at such an early age. I even found a discussion board where a class was discussing this poem, which was quite good fun.

26 Jan 2006

I feel a complete toad to have let my old friend Maureen's 50th slip my mind completely. Cross with myself too, because I was looking forward to being a virtual presence at her bash.

28 Jan 2006

Roy here for the weekend. On Saturday we caught the bus to Thornhill to do a scenic loop back via Bamford. I found myself feeling flustered and anxious at being outside my usual stamping-ground, although I know the terrain well enough for it to be impossible to get lost. But I didn't have my bearings in terms of where the footpaths were and couldn't follow them satisfactorily from the 1" map. There was no risk of going more than half a mile or so out of our way but oddly, this was enough to make me feel ill-at-ease. It would make me feel more confident about extending my boundaries when walking with friends to take out the 2.5 inch map but I hate hate hate having to open up and fold those big unwieldy sheets all the time.

30 Jan 2006

I'm now feeling significantly less weary than I was for the couple of weeks after Christmas. My breathing still feels slightly confused and unsettled, not yet fully adjusted to righthand lung having ceased to function. But I think my lefthand lung is working much better now than before the righthand one packed in - I wouldn't be surprised if my overall air intake has actually increased. Over things like this, I feel as if both my body, and an important part of my mind, are outside of myself - it doesn't strike me as in the least bit big-headed to be congratulating them both for their remarkable capacity to accommodate.

Have had some good bits of sun over past few days although a cold wind at times which has required careful route planning to avoid walking head into on exposed routes. But have mainly succeeded in doing so and enjoying walking more than ever if possible.

31 Jan 2006

The consultant says I've lost too much weight so I'm introducing various strategies to eat more. Breakfast is the time when my appetite is best, so I've added a slice of toast and marmalade to my All-Bran and banana. I'm also drinking 3 or 4 cups of milk a day. Hopefully small changes such as these will be enough.

I firmly resisted consultant's proposal that I should see a hospital dietician. Like all thinking vegetarians, and as is Vegetarian Society policy, I do not consider battery eggs as vegetarian, only free range eggs. When in hospital, the so-called "vegetarian" options are almost invariably such things as quiches and puddings made with battery eggs. In order to get meaningfully vegetarian food, I found I had to describe myself as a vegan. Presumably (?!) NHS dieticians reflect the same philosophies as those which inform NHS provision of hospital diet, so I can't feel any confidence that their advice would be any easier to stomach than hospital food. I really can do without having to argue the toss with a dietician over such self-evident points as that no self-respecting vegetarian would go near a battery egg - I imagine it's quite likely that proprietary food supplements etc. would often include egg in their ingredients.

3 Feb 2006

Had the bright idea that some tatty 2.5" maps tatty maps might be sitting around in Heeley which I could cut down to a radius of 5 miles or so from Hathersage. Could then confidently do more of the catching buses and walking back bit. I think I should take this kind of action so as not to let this fear of going outside my boundaries get the upper hand. John promptly delivers the goods so I have no excuse.

I just picked out Aldous Huxley's Island from my bookshelf to re-read. I was very taken with Aldous Huxley in my late teens. And there in Huxley's utopian community, the mynah birds said "Here and Now boys, Here and Now" and "Attention" - to remind people to live in the present. Which I considered a bit of a coincidence given my recent decision to hear the song of the collared dove as "Be Peaceful". I wonder whether I half-remembered about the mynah birds, and the connection was what drew me subconsciously back to the book.

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