May 2006

08 May 2006:
Progress Report

Dear everybody,

I'm just recovering from a sickness bug which left me unable to do anything except be sick all Friday night and Saturday morning, and exhausted and slightly temperature-ish since. But the good news is that after the initial inevitable worries that the being sick was due to the cancer and would continue unremittingly until my demise, I do feel pretty sure it's just been a bug. Especially as a few friends have reported similar. My resistance to bugs has definitely gone down the swanee - I also had another minor chest bug earlier this month. Presumably this is down to my low blood count and will be a problem all the time now. In my adult life hitherto I've been a remarkably bug-resistant person - unusual for me to catch anything more than once every couple of years or so.

One is hard pushed to find any grounds for humour when puking up all the time. The best I can manage is that I got fed up with being sick into a cumbersome old bucket and on Saturday morning staggered to the garden centre at the bottom of the lane where they sell pet items and other miscellany as well as plants. I purchased an aluminium dog dish which seemed ideal for the purpose at a modest £3.20. I simply gave no thought to the fact that the last thing one wants is to be sick into a mirror... However, Sarah arrived shortly after this difficulty had become apparent and was able to go once more to the garden centre to purchase the alternative which I would have selected if I'd been in a state for proper reflection and not so inclined to be tight with money. I'm now the possessor of an attractive white enamel bowl with red rim which I am happy to have on display on my bedside table.

Anyway, by Sunday evening I was fit enough again to walk a couple of miles up hill and down dale in the relentlessly pouring rain. My waterproof trousers, good-quality ones bought less than a couple of years ago, have frayed at the seams from almost daily wear over the winter and are letting in water badly. I hadn't expected to need to buy another pair to last me out, but I think I must. At least we had a brief spell of properly warm weather last week.

Apart from bugs; a couple of acceptably (to me, if not their recipients!) brief rants; and blips due to feeling daunted by the disturbing physical sensations which I'm confronted with, it's been in large part quite a pleasant month. My breathing has got better-adjusted to my paralysed right diaphragm and I've done most of my usual reportoire of fairly demanding walks without too much trouble although at a considerably slower pace and with more stops than hitherto. Plus some days I am forced to opt for more modest circuits. Talking remains a generally much more pain- and weariness-inducing activity than walking.

It's been great to have some days when it's been warm enough to have a mid-walk lie-down. This has always been one of my favourite indulgences when the sun shines and a gentle warm breeze fans one's body, and I can't really understand why it's been something to which I have treated myself on only very rare occasions during my adult life.

I'm not going to try to write any more now. Nothing significant to report on the health front from hospital appointment last month. The mass still grows, but slowly. I've succeeded in upping my food intake sufficiently to avoid losing more weight.

Lots of love, Jos


08 May 2006

Over the weekend I didn't smoke any cannabis for 48 hours as a result of aversion to smoking when being/feeling sick. When I resumed consumption the beneficial effects were quickly apparent - what I would describe as a lifting of the spirits. Immediate restoration of a sense of humour and what might be called intrepidness, i.e. being able to successfully tell myself to get off my backside and get out walking again, stop lying hunched up in bed and take control of my posture again, get back into meditation and mindfulness of breathing instead of letting my thoughts be undisciplined, dare to start eating a bit again instead of being too scared I was going to be sick, re-establishing my daily routine... I email the Palliative Care Consultant again to add this observation to my previous comments (4th May) on the benefits of cannabis.

11 May 2006

I've finally got round to drawing up a legal will courtesy of - impressively efficient and costs less than £30. The most demanding bit is sorting out getting it witnessed, but I've even managed to get that out of the way now.

The sun shines. Am feeling very tempted to buy myself a laptop so I can use it in the garden - the wireless connection is all set up (by Ian) so I could email and google outdoors. But for now I'll pull up a few weeds instead. Feeling quite good today. I hear from Roy that his mobility has greatly improved and that he's feeling just about up to braving the journey across the Pennines to Hathersage. I'm very chuffed at the possibility that I might actually see him again before my demise, and when I go for my midday rest I have a delightful sleep and a little dream of him being here.

12 May 2006

My email is driving me bananas - incoming messages are constantly being delayed, sometimes for as long as 5 days. Internet Service Provider irritatingly keeps announcing that the problem is fixed when it isn't. Otherwise life has been pleasant enough, walking and resting and pottering and most days pain not too intrusive.

13 May 2006

It's been delightful having consecutive days of really warm weather and has had a very positive effect on countering weariness, although this morning it's dull and raining. To provide me with some garden pottering, I will have to get in the frame of mind to enjoy picking up slugs with my special gizmo - like a long handled litter picker - and pouring boiling water on them . The main gardening frustration is not being able to use a trowel with any force - it's very difficult to just say no when an intransigent weed is in your way - plus not being able to do more than a couple of 20-min stints in a day. However if I developed a bit more organisation I could enlist Sarah or Ian where brute force needed. At the same time it not unnaturally occurs to me that overdoing it could be an attractive means of effecting an exit strategy. Problem being that for as long as one is capable of such things one is unlikely to desire an exit strategy. Ah well. Not a topic I really want to discuss with anybody although I quite like throwing out comments about it rather than keep them to myself.

During my evening bathtimes I have been chomping voraciously through piles of modern novels by women authors lent to me by chums (e.g. Susan Hill, Sarah Dunant, Leslie Glaister). I tend to go into a different reading mode with modern novels which don't have classic status, whack through them at great speed and without retaining a great deal after finishing them. I think I'm going to want another round of re-reading classics next.

16 May 2006

I'm sent a link to a video clip which provides a great deal of entertainment for friends and family. A guy, called Guy, goes to job interview for a techie post at the BBC, and gets confused with a Guy from Apple...

18 May 2006

My exciting news is that they have got it sorted for me to get cannabis on prescription - Sativex, which comes in a vial and you spray on the inside of your cheek. It should arrive in a couple of weeks. Very pioneering - it's unlicensed but Home Office gave permission to prescribe it to MS sufferers last year - then in January this year they extended this to people with a terminal illness. I'm hoping I'll just be able to substitute it for smoking joints without any grief but it's likely to take some self-discipline - will be interesting anyway.

Have been very up and down from one day to the next in terms of how I feel - Tuesday was the absolute depths of weariness and I felt impelled to issue Sarah lots of information about the duties of Executors etc.

19 May 2006

Fucking miserable weather really when push comes to shove - raining for large parts of the day every day. At least there are some patches of sun in between but not nearly enough of them. Looked at monthly weather forecast and there just isn't a spell of warm and dry weather predicted. Ah well, must try not to get dispirited about it, but I fear that if Roy sticks to his plan of visiting in the next warm spell, our paths may never cross again...

20 May 2006

Having made the above point about warm spells to Roy, and he says he'll come next week. I want to see him more than I want to see anybody else but I still manage to get myself into a state of anguish and confusion about the reshuffling of Arrangements which is needed as a result. I simply don't possess the mental energy or the talking capacity to have more than one meaningful visitor in the course of a day.

22 May 2006

The weather is completely vile, pissing it down with rain constantly. Keeping up walking notwithstanding and managing to keep myself from being depressed, but for reasons I can't quite understand my strategy for doing this is thinking militantly atheistic thoughts. If God exists he is a thoroughly nasty piece of work - otherwise it would rain in the night and be sunny every day. For whatever reasons I always quite enjoy "I hate God" thoughts. But I hope I don't bump into the vicar as I fear I couldn't resist giving him a piece of my mind.

23 May 2006

My chum Sarah has just told me of an extraordinary coincidence relating to her mother (in her late 80s), who had a fall and broke her hip a couple of weeks ago and was about to be released from hospital at the end of last week. She was with a physio being helped to walk, fell again and broke her other hip! So she's had to have another operation (now got 2 new hips). It's not difficult to convince oneself that there are some benefits in missing out on old age...

24 May 2006

I think my patches of not feeling very communicative are increasing in length as well as number. Partly because I reckon I don't actually think nearly as much of the time as I was doing last year. Partly because the pleasure I get out of my life, although often quite remarkably intense, doesn't lend itself to being articulated. It comes out sounding repulsively cloying and sentimental.

28 May 2006

Visit from Roy has happened. On Thursday the sun shone and we were very chuffed by how far he was able to walk - aided by a delightful bask at the millpond in the sunshine en route. However we were both somewhat dogged by our respective ill-healths on Friday which was quite hard. Me with a nasty bout of flatulence of the sulphurous belch variety, Roy with pain in the neck. And the weather not so kind. But overall it was good to have got over the hurdle of not having seen each other for such a long time (over 4 months) - I got myself into a slightly scared and trepidatious state in advance of it. Plus not surprisingly, sulphurous belching makes one feel a tad inhibited about such things as Kissing. However much Kisser says don't worry I won't mind, Kissee's thoughts will inevitably be preoccupied with anticipation of such an event. Anyway hopefully he'll now be back to coming over every 3-4 weeks - a couple of days at around this interval is optimum for both of us - we both feel pleased to have our own space again after that much of one another.

31 May 2006

Pain has been a problem for the past couple of days. It started when I did something very stupid indeed on Sunday, namely some digging. I was feeling so well and it didnt' start hurting till afterwards. Now I feel as if I have pulled muscles all the way up my righthand side. I probably have. Perhaps it's an inevitability that one will sometimes overstretch oneself unless one confines oneself to bed in perpetuity.

The digging wasn't even to plant something nice, it was because the path in the back yard was overrun with weeds to the extent they had to be dug out in some places and in other places the whole top layer of the path skinned off with the spade. Anyway John's now finished it off and put woodchip down. And I do *not* have an ignominious sense of defeat in consequence.

04 June 2006

I have had a bout of feeling very shitty which was at its worst a couple of days ago and meant I couldn't enjoy the beautiful weather. Still not wonderful but much better than I was then. (Even admitted complete defeat on going for an afternoon walk!)

06 Jun 2006

Have just started with my prescription cannabis and so far I think I like it. The doc brought me the box with 4 vials yesterday and I had the first go yesterday before my morning rest. Was very pleased that the taste is very much of good old-fashioned 1960s high-quality resin rather than modern-day skunk. Have been finding that these attacks of dyspepsia are aggravated by smoking joints which makes me further inclined to be well-disposed to the Sativex I think.

However, I had done something silly before the doc came, namely digging. I had gone into a nasty bad pain day last week following a bout of digging, but of course I had to assume it was because I'd done too much (although actually it was a very small amount indeed) rather than digging per se. As on that occasion, a couple of hours later pain in shoulder set in accompanied by dyspepsia outbreak - seems like lots of different things can bring it on, and exertion of stomach muscles is another one. As a result I had a loss of confidence about it being the right time to be making big changes in my medication regime and decided to hold off more Sativex until today. And so far, very good. The first bit of my morning has been just how I like it - woke up around 6, pot of tea and cannabis dose then leisurely potter sorting out the washing and changing the bed and generally feeling quite mellow and pleasant, then back to bed for a meditate just after 7, which was very enjoyable.


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