Dear everybody,
A brief report this time - I have no stories to be told, though there's one in the making about memorial services. I have had a very stable and comfortable three weeks, with misery only if I deviate from my Routine...
The good news is that as a result of my stability since chemo finished 3 months ago, the consultant is now being much more optimistic about my prognosis. I needed to get a clear statement out of her in relation to this now that I'm coming to the end of my period of full pay from work, in order to make decisions about ill-health retirement vs "serious ill-health commutation". All this sort of stuff has been consuming a lot of my small quantities of time when I'm capable of "brainwork", but it has to be done.
Anyway, what she says now is: "I believe that we are looking at more than 1 year for you and it is not uncommon to keep people well (with good quality of life) for 2 or even 3 years, 5 years would be exceptional and I would rate your chances as only 1%."
So that's good, although it takes a bit of adjusting to. I don't want to lose the thing of treating every day as what could be my last day of fitness, and I know that if I drop my Routine and try to lead anything like what could be called a normal life, I would quickly be paying for it. I think I can hack it, though! And since there are days when by the end of the afternoon I'm feeling so completely whacked and weird that I think this can't possibly go on for much longer, these will always counter an excess of complacency I guess.
The garden is full of colour with aquilegias and alliums popping up between them, and now the oriental poppies and the geraniums and the window boxes etc. etc. Most satisfying to be able to keep that up.
I have forgotten in the past couple of progress reports to tell you the grand total raised by the sponsored walk. This was around £1400. Total raised online and as cheques sent direct to MAP is now just over £2,900.
Due to popular request I am now sending out this circular as "blind copies", so that you don't any longer get the great long list of everybody who it goes to taking up a page of printout. I hadn't done this initially because I was worried that people might think it was going to a tiny handful and that they were being called upon to be closely involved. But that point can presumably be considered made now!
At the moment stress is being caused by difficult discussion with my mother and siblings about my mother's will. This is consuming most of the very limited brainwork time I have available in the day.
My youngest sister says "the trouble with email is that I just do not know how to start as whatever I start with seems riddled with platitudes and potentially annoying things." To which I reply: actually in some very basic ways I'm not an easily-prickled person you know! In fact I have a reputation for how undefensively I take criticism. The big problem for me is that when I try to communicate being upset, you/D/mother pick up on it as rage! Fortunately my family and my friends know that being angry is my way of being upset. Blame our father!
Oldest friend Jill responds to my latest progress report: "I won't go jumping off into lots of wows how great, as I guess you have to keep your feet on the ground about the whole thing. But the great thing is you have obviously been doing it right for your body. Isn't it strange how now a year of life would just be so brilliant, whereas before all this started to happen it would be awful."
I tell her: It is indeed quite strange to adjust to... but I must say I was getting very puzzled by exactly how I was going to manage to die within the expected window, so it makes sense. And of course I'm pleased but also scared of getting complacent and taking things for granted.
Ian has just started a new job and is very happy indeed with it. He was headhunted for it - not a thing which has ever happened to me! It's lovely to see him getting on so splendidly, and managing so well to use his wonderful brain to its full potential. Something I never felt I succeeded in doing, and I do blame this on my miserable screwy childhood and consequent untogetherness in my 20s...
An old workmate sends a short but witty note ending "If it takes you as long to read this as it has me to type you will be up all night. I have tried touch typing but it didn't work so I'll have to stick to the two fingered approach". I tell him: You should persevere more with touch-typing. If I was there I'd rule over you with a rod of iron while you systematically worked your way through Pitmans Keyboard Mastery, an hour a day, which is what my mother did to me and most grateful I am.
Am waiting for village friend Michelle, who is also feminist chum from days of yore, to come round for a walk so am writing to fill the gap. Feeling a bit desperate to get out because I've beent uncomfortable all morning with pains in the neck and shoulders, probably shouldn't really be on the computer come to think of it. Plus am very sweaty and going hot and cold.
Ah well! Can't expect to be wonderful all of the time. I mail Roy, who is concerned because he witnessed me going into a state of complete exhaustion when we walked beyond my limits at the weekend: No, Saturday's weariness didn't mar the delightfulness of seeing you. Just felt a bit cross with myself because I kind of knew it was going to happen if we extended the circuit and I should have said so. It's a bit scary though because one can imagine it would be quite easy to use "my body is telling me" to justify always getting your own way and falling into manipulative habits. And a bit scary too how inevitably I go into weary mode if I deviate from my Routine.
Back from walk with Michelle now and it's a beautiful sunny evening. She was later than she thought getting back from town and due to need to divert myself from pains in neck I was feeling desperate to get out by the time she arrived to the point of tearfulness once again. But anyway we had a lovely walk to paper mill (bristling with tadpoles) and North Lees and she's a very cheering-up kind of person. Still have the pains in my neck but they're not going up into my head any more which is when I find it very grinding and wearing to put up with. I think it might have been kicked off from sleeping with the window open and exposing my neck to drafts, I've had suspicions before that this happens and so (reluctantly) usually close window at night.
The vicar came to visit. He arrived at midday when I was overdue for my rest, although I had replied "before 11.30 please" to his email of May 31st. I told him I was very weary but he insisted that it would only take a minute to explain things. Then he started going on about the burial ground having two parts, one of which was administered not by the church but the parish council. He simply hadn't understood what I was requesting in my email. I think the idea was just too radical to be conceivable to him although my email was clearly entitled "Possibility of using Hathersage Church for humanist memorial ceremony". He went very red when I told him he'd misunderstood and that what I had been asking about was using the church, not about burials.
Vicar: "Oh no I don't think that would be possible".
Me: "Why?"
Vicar: "Some members of the church wouldn't like it."
Me: "Oh ... as with women priests you mean?"
Vicar "I'll think about it and get back to you".
I told him I would like to put my request direct in a letter to the Parochial Church Council (equivalent to Governors in a school) rather than having it relayed at secondhand. I want to force them to give it some thought!
I think I might be going off the idea actually although I fancy a spar with the C. of E. before I die... In fact I do like the idea of being buried (or ashes or whatever) up there. The Parish Council bought the field next to the church in 1988 as a burial ground and anybody living or born in Hathersage is entitled to be buried there whatever their religious persuasions. (As I found out from reading the notice there without needing a visit from the vicar to tell me...) The children think this is very good. The views from that side bit are even better than from the main churchyard - you've got the view up the Dale as well as over to Highlow.
All my poor old brain has been able to focus on over the past week or so is money and administrative matters. I just don't seem capable of having more than one "thread" in my brain at the same time. Although in fact the money matters have had a mind-boggling number of separate threads running.
My mother's will and her confusion at adjusting to the realities that me predeceasing her means that my children will inherit my share - fortunately this has now been sorted, but not without some consternation that her chain of thought was going to lead her to change her will so that "my" share was redistributed amongst my siblings.
Weighing up taking ill-health retirement vs "serious illness commutation" - a lump sum payment and no pension. I think I've decided on the former, although the latter would be more advantageous if I died within a year or so. But the thought that I might still be alive in 3 years, and would then inevitably start worrying about income if I lived on too much longer, overrules that.
Then there's a private pension I took out when I worked in the printing co-op and have kept up, which it looks as if I'm going to have to hassle around over getting back anything like the £9000 in contributions I've paid in. Then there's sorting out Incapacity Benefit claims and the form-filling required And so on and so forth... but at least the consultant assures me that I will continue to receive the £100 p.w. Terminal Living Allowance, which is what Sarah's currently living on.
I think Sarah has got her life reasonably happily sorted - I do worry about the extent to which her future plans have come to revolve around me. She's here 3 or 4 nights a week, and the rest of the time in Sheffield, where she has an interesting iron in the fire with plans for a playworker co-operative. She and some of her friends have a few qualifications for being playworkers and do regular bits of work at after-school clubs as well as playschemes. A co-op seems a jolly good idea so that playschemes etc have a place to go where they are assured of certified, qualified workers for fill-in and short-term work, which there's a lot of demand for. A good alternative for students to bar work. Sarah also thinking of going to G8 as they are desperately calling out for first aid workers - she has all the first aid certificates and uses it quite a lot when she does club work at her favourite Corporation. I think she's planning to go on a "street medicine" course which is coming up one weekend soon in preparation for G8.
I'm very interested in Ian's new job, which is with a big web-based translation firm who have their development offices in Sheffield. Most computer-users will have come across "machine translation" capabilities on the web, where documents are automatically translated word by word. This of course leads to some pretty nonsensical translations. What happens at Ian's place is that each sector of the economy, and within that individual companies etc. where they're big customers, has its own "translation memory" set up. This is an enormous database where the unit of translation is the sentence as opposed to the word. The database gets automatically expanded as new sentences are encountered. Because the database is customised to the user context, the sentence translations which are stored are the ones which are appropriate for that customer - e.g. technical terms, jargon etc. When a document is submitted, sentences are automatically translated if they match a sentence in the database. The document then goes to an appropriate human translator to translate the sentences for which a match hasn't been found - this is rarely as much as 25% of the document. The translators are expected to translate at a rate of 1500 words per day, which may of course be sentences from a large number of different documents. The final translation is then checked by another translator before being sent to the customer.
I decide it's not realistic to think in terms of occupying my remaining time with historical research projects. I'm beginning to wonder if the best thing is to be "Disgusted of Tunbridge Wells" or whatever, and use my literary skills to write impassioned shit-stirring letters to the Sheffield Star, who publish almost everything they receive I think! But before moving onto such things I do intend to get my "Terminal thoughts" stuff on line.
I went for a walk with my old GP chum at the weekend and email her: you did raise a suppressed niggle from my mind, by mentioning tubercular masses! When I was admitted to hospital and given lots of blood tests and had a CT scan, they were very adamant at that stage that TB could be completely eliminated (they had been informed of course that the one serious illness I had had was TB meningitis as a child). But a little bit of me has been wondering what the basis was for this certainty. I only had blood tests and no sputum tests. The biopsy report made no mention of any TB tissue cultures. I didn't expect to be given a BCG as that would presumably have come out positive in any case as a result of childhood illness. (They did one when I was 13 and whole arm swelled up). But a quick Internet sleuth doesn't suggest that there's a blood test which can eliminate TB. (And also does suggest that on very rare occasions a tubercular mass can masquerade as a cancer).
I don't really like having these thoughts because it seems like it could be a variation on the theme of being in denial! But at the same time, it does niggle...
My incapacitated chum writes: "I've been having a particularly soggy patch this last week, probably reacting to the excitement of the previous week and resultant sense of anti-climax. At such times I become overwhelmed by the on-going tedium of my life, and my glass is definitely much more than half empty."
I reply: If you're something like me depression is always there sitting on your shoulder waiting to jump in if you give it half a chance and becomes almost seductive when you're weary. And also comes to appear the most logical state of mind to be in. The prospect of a much longer haul than I had initially been given to expect certainly raises the likelihood for me as well that "ongoing tedium of my life" will come to be an inevitable way of looking at it whenever fighting to keep positive just becomes too tiring, or has swung the pendulum too far in the direction of false optimism. I've always seen these pendulum swings in me as a low level version of my sister's manic depression, but perhaps they're actually more "normal" than that?
I wish oldest sister would make some move to take forward our stalemate relationship. Have suggested options of her apologising to me for causing me a lot of stress, or her telling me that she does understand why I wouldn't choose her as a close friend. Then there's the possibility of her showing empathy by a little online donation to MAP, or even just responding to the email I sent to mother and cc'd to her re practical suggestions on mother's will. But none of these things has she done. I resolve to try to stop thinking about it and leave it to sort in its own time. I tell my sister Susan that I'm quite pleased really that she should defend my oldest sister - the world just isn't heroes and villains.
It's boiling hot here so not wanting to sit in front of computers. I can't do much in the way of gardening in this heat - the amount of sweat that pours out of me reaches seriously problematic dimensions! (This is always a difficulty - even in the coldest weather I pour with sweat from my head at night and have to sleep with towels on my pillow which are always soaking by the morning.)
The Occupational Health doc did his visit last Thursday so hopefully ill-health retirement arrangements will now proceed without too much delay.
Mixture of enjoying hot weather and finding it hard. Horseflies seem ultra-attracted to me. Frustrating that I can't lift watering cans or manhandle hoses so can't water the garden. Get (even) more tired in the heat, find it harder to settle down for my daytime rests. Can't sit for longer than to eat a meal on our tasteful garden furniture, or get comfortable on sunbed. But apart from these minor points I do love to see the sun, and am not complaining!
I tell my friend who asks me what kind of books I would like to borrow: I always look out for lesser-known pre-war women writers in charity shops etc. eg. Winifred Holtby, Rebecca West but I think I've read all of those two. I tend to go for social realism but not excessively bleak. Virago was a bit too forgiving to my mind on the racism front in what they republished and I get irritated if such tendencies manifest themselves!
I email my consultant about filling in a form for Incapacity Benefit claim and tell her: Still as fit as when you saw me, keeping up walking etc. Nasty bout of pain of a different type on Wednesday (kind of flat and horizontal between my chest and back, lower than usual shoulder pains) and will up Zomorph if such things become regular occurrence. GP gave me a good tapping when she visited in consequence. At least now I've had this type of pain once, so if/when it next occurs I can remind myself been there, done that, and it went away.
Hip hooray and great sighs of relief, I've finally completed and posted off my Incapacity Benefit claim form. What a daunting process! Some of the questions are so confusingly worded and it's not nearly clear enough which sections you do and don't need to fill in and it took lots of hassling about to get the necessary documents off my workplace to send off with it etc. etc.
Anyway that's that bit done, and ill-health retirement procedures also in progress.
It has been bugging me that nearly every morning I recite to myself "Here is dawning another new day, Think will you let it pass (something) away" And I have not been able to remember what the "something" is. So, yesterday I looked it up on the Internet - hadn't realised it was written by Thomas Carlyle. It gave the word as "useless" and also read "Here is dawning another blue day". I much prefer "new" day as it's universally applicable, and think I prefer "wasted" to "useless"! But still thinking there ought to be a better word than either of these.
Roy had got a bit cross with me at the weekend when a plaster mark on the inside of his elbow from a blood test set me off on the topic of traumas with cannulas when I was first ambulanced to hospital. I try to explain to him: it wasn't pleasure in the topic of conversation that made me go into that recall. It just all came flooding back into my head at the sight of your plaster mark. I suppose it was quite traumatic really that whole pre-diagnosis bit, perhaps I should have followed my initial instinct that I should set myself up with a counsellor but it got deflected when I asked for a counsellor and got a healer, asked for a counsellor again and got a hypnotherapist... Don't know if I can be bothered now, too much of the limited water supply to pass under the bridge has already passed under the bridge. But I suppose if I find myself talking about things people don't want to hear about then it would be a good idea.
Having had a very comfortably pain-free weekend have had a couple of pretty shit days yesterday and today. Invented a new walking route variation today to Mitchell's Field Farm, between the Dale and the Ringinglow road. Didn't have a map and didn't go quite the intended way, hence some road which there shouldn't have been, but will sort that next time and then it will be a pleasant alternative option. Walking the only part of today when I've really felt at all comfortable
Will have to ramp up my slow-release morphine dose if I'm feeling like this tomorrow I suppose - bit reluctant. But perhaps I'll be feeling fine tomorrow...