March 2006

06 March 2006:
Progress Report


Dear everybody,

The snow finally came to Hope Valley on Friday night and all weekend the sun has shone and everything has been stunningly beautiful. The roads have been clear, so as of now we've got off very lightly. In fact it's melting too quickly - there haven't even been any sledging opportunities for local kids!

Walking has been maintained remarkably well, but the month has been a bit poor on the health front. First highlight being a particularly gruesome bad pain day which I believe resulted from trying to get the childproof top off a new bottle of Oramorph. Those kind of wrenching movements are definitely not a good thing and the next morning my shoulder felt as if somebody had hammered nails into it. I was very sorry for myself indeed and definitely not in control. I even had to resort to going out into the fields to scream.

As has always happened so far with bouts of seriously bad pain, it was over by the end of the day but unusually this time, I was left feeling low-spirited and sleepy. Due (with the benefit of hindsight) to the second health event of the month commencing, i.e. a chest infection. Which, because of the difficulty I have in differentiating symptoms from how I feel anyway, I didn't consider as a possibility until I'd been feeling abnormally low for another two or three days. At which point I realised it might be a good idea to take my temperature and it was 101.

Quickly enough sorted with antibiotics then, but in the couple of weeks since I've been very washed out and weary and have had a new set of sensations/ discomfort in my chest to contend with. Not what I would describe as pain, but disturbing, especially when trying to rest. GP visited last Thursday and raised the possibility that my heart has been/is being displaced. A bit disconcerting, but an obvious likely scenario given that the mass is sitting above and in front of my heart. Anyway, if this has happened we'll see on the next x-ray in April. (Or at my post-mortem, if heart gives out before then!) Since there's nothing that could be done about it, nothing would be gained from asking them to bring forward the x-ray.

I feel quite pleasantly surprised that I'm not getting panicky in the face of these sensations, i.e. I genuinely feel I've succeeded in embracing the philosophy of "if it happens, it happens, go with it". Heart failure definitely has its attractions as a way to exit, provided that people don't footle around trying to resuscitate me. Hopefully I've made my wishes sufficiently clear for this not to happen. Anyway, it's perfectly possible that my sturdy heart could carry on in a fairly stable way for a few months yet, just giving me sensations but nothing worse. Which would be excellent - I could definitely fancy some warm weather before I go.

There is also the fact that I would much prefer not to be the next Hathersage person to die. Plots in the parish burial ground are allocated in strict row order, and the next one is in the shadow of the wall... Mind you, it won't be *that* bad if that's what I get - it's still an amazingly beautiful spot. It makes an enormous difference to how equably I can face the prospect of death, that as a Hathersage resident I'm entitled to be buried there. I feel remarkably comfortable at the idea of my existence continuing as a headstone in such a place, and my spirit living on in the heads and hearts of people who care about me. Although I can't stop myself thinking about the fact that I'd like to be buried feet-to-west, so that my head is facing towards Highlow and my body on the downhill slope towards my headstone. Atheists like me are welcome in the parish council bit of the burial ground - which adjoins the churchyard, but I think one is expected to Be Respectful. Christians are traditionally buried feet-to-east, and this is how all the graves are in Hathersage parish churchyard. Unless any of their occupants briefed the undertaker to sneak them in the wrong way round of course (feet at headstone end), which is what I'm wondering about doing. Mr Noutch our excellent local undertaker (and winner of most of the vegetable prizes at Hathersage Horticultural Show) is also the administrator of the parish burial ground... but would it cause him great embarrassment for me to make such a request? If Pestilence or Disaster then struck Hathersage, would he feel driven to exhuming me and turning me the "proper" way round? And then might the Vicar need to drive a stake through my heart or suchlike to ensure there was no further trouble?

I may not be able to resist asking the Vicar myself about this next time he greets me heartily on the street. I confess that I rather enjoyed the reaction a few months ago when I asked him whether I would be allowed to use Hathersage church for a humanist funeral ceremony. I thought this was a very respectable proposal for a hardline atheist like me to make, and there are humanist officiants available to conduct such events Respectfully. However Vicar went very red indeed, "oh no! I don't think *that* would be possible!" I threatened to pursue my request further with the Parochial Church Council (not to be confused with the secular Parish Council) but decided that would be just too mean of me, motivated entirely by the desire to make them squirm. Obviously they couldn't possibly agree to such an outrageous proposal. Whatever will these spiky-haired radical feminist types be asking for next? Women priests or something?!

I've gone completely off the idea of any kind of funeral or memorial service anyway. I fancy being quietly interred with literally no ceremony. Eventually there will be a headstone which will say "Long walk to freedom" on it. I never was a party person. I like the idea of people coming in their own time and sharing this lovely bit of space with my spirit for a while.

I've been very noticeably lacking in mental energy this month, although there has been one NHS battle which I've been drawn into: transfer of Out-of-Hours GP services to the new NHS Direct call centres. When, like me, you are "receiving end-of-life care", the system is that your GP gets you put on a special list so that if you ring the OOH service, you get called straight back by the OOH GP with no hassle - none of this "triaging" where you're asked loads of questions to establish whether you need a doctor. My GP had told me that she had put me on this list, so when I rang OOH on realising that my temperature was 101, I was expecting fast-track to the doctor. But ... Sheffield is one of the areas where the OOH service has already moved over to being run by NHS Direct. My call was answered by a non-medical call-handler who was asking me a list of questions about symptoms etc., obviously off a computer program she had running in front of her. She appeared not to have the slightest understanding of what I was talking about when I said that my GP had put my name on a special fast-track list. Having run the gauntlet of these questions from her, she then tried to persuade me to speak to a nurse. I had to be very assertive that what was *meant* to happen was that she arranged with no further ado for the OOH doctor to telephone me. Arguing the toss was no fun when I was feeling quite badly ill and a bit panicky. And even at my healthiest my voice is very weak indeed and I am only capable of monosyllabic exchanges on the telephone.

When I told my GP about this she said that they'd been getting loads of complaints about how NHS Direct is handling out-of-hours services and are tearing their hair out because they pay for the service but are being given no say at all in how it's run. What struck me was that Sheffield NHS Direct simply didn't appear to have any procedure in place for dealing with people like me who were meant to be on a special list. So, I corresponded with NHS Direct on this issue via their website feedback facility. It was of interest that they were able to immediately supply me with the procedure used by Hampshire NHS Direct, which was fine. However for Sheffield, after further delay, they could only provide me with loose hearsay information which differed from the Hampshire procedure on the key point of whether or not triage by a non-medical first-level "health adviser" is actually by-passed! Clearly this is a hot topic on a national level - it was the subject of last week's Radio 4 "Case Notes" programme. Which you can listen to from the link at

And that I think is enough for this month!

Lots of love, Jos

07 March 2006

Following my words of praise for their "body pillow", I get an email from Safefoam, the manufacturers, telling me they have put my letter on their website and is that OK? I mail back to say: hmmm not sure that talk about tumours wouldn't put me off buying one if I was pregnant!! Might be better off a discreet little link from the page, or at least not right in the middle of all these healthy mothers-to-be?

13 March 2006

Poor John much preoccupied with work financial issues. I often hope I don't last *too* long so he can move out to Hathersage and live a more relaxed life. I'm pleased he's decided he wants to live here when I'm gone although I can't cope with him being around more than a couple of nights a week while I'm still alive!

I'm being a bit minimalistic about emails at the moment because I now usually need to get up after about 10 mins at the computer (20 if googling etc rather than typing) and can't manage more than 2-4 of these short bursts per day.

Very relieved to have just received a postcard from my friend Nettie in Buxton who lives in a static caravan nestling in a rather idyllic site called The Punchbowl. The owner of the site decided he wanted to move her to a different plot, and the big day when her house was bodily lifted (well, by crane) to its new situation was last week. Not surprisingly she was very trepidatious about this great event, but all went well.

16 March 2006

My concerns about Out-of-Hours services have been passed on by the central online NHS Direct, to the "Acting Director of Nursing" at the local NHS Direct call centre. I get an email which completely misses the point that I'm asking a general question about procedures and wants me to supply personal information so I can be followed up as an individual case. I mail back:

Thankyou for your reply. You have not quite understood my concern correctly. Whilst I do obviously have a personal interest in this matter, I also wish to be satisfied that appropriate out-of-hours procedures are in place for all patients receiving end-of-life care. Therefore I do not consider it appropriate to treat this as a matter to be resolved on an individual basis.

If you refer to the correspondence I forwarded to you, you will see that for Hampshire NHS Direct, your colleague was able to supply me promptly with a clear-cut written procedure, as follows:

They [the caller] must state that they have a triage by-pass card as soon as their call is answered. The call handler will take their name, address and telephone number to ensure that they have the correct record and no details have changed. No other information is collected and they will be told that their OOH service will be notified of their call and that they will be contacted within 45 minutes. They should also be advised that if their symptoms worsen in any way, they should call the service again.

You have still not provided me with an equivalent clear-cut procedure for NHS Direct Sheffield. This is all that I am asking you for. It isn't clear from your email that you have grasped what I mean by a procedure, so perhaps I should clarify this. I think there would be a general consensus that in order for a procedure to be a procedure, a) it needs to exist in writing and b) staff need to be informed of its existence and trained to use it.

1. You have not been able to tell me what I should say immediately to the call-handler to make them understand that I am on the triage by-pass list - in Hampshire, it is clear that I must immediately say "I have a triage by-pass card". Indeed, the wording of your summary "you have a terminal illness and an agreement with your own GP that you would be transferred directly to the OOH service" is such that you would appear unaware that it is normal practice for GPs to supply the OOH service with the names of patients receiving end-of-life care.
Please could you tell me what the equivalent words are to "triage by-pass card" which I should I say to the call-handler at Sheffield if/when I have to ring OOH?

2. The Hampshire procedure tells me exactly what the call-handler will do once I have told them I have a triage by-pass card - I know that the call-handler will ask me my name, address and phone number, and that no other information will be collected. The loose assurances which you are giving me on behalf of Sheffield NHS Direct do not give me any indication of what information the call-handler will ask for before contacting the OOH doctor on my behalf.
Please could you tell me exactly what information the Sheffield call-handler will ask me for before contacting the OOH doctor?

3. The Hampshire procedure tells me that I will be contacted by the OOH doctor within 45 minutes. You have given me no similar indication for Sheffield NHS Direct. Please could you do so?

I would be most grateful if you could double-check before you send your reply that you have clearly answered the above three questions. Thankyou.

Writing this grumpy email fills a gap between 1pm, when a doctor I haven't seen before - a Palliative Care Consultant - has scheduled a visit, and 2.15 when she arrives. I am cross with her for messing around my day by being so late and then upset with myself for getting so cross with her. So I end up feeling jiggered, as I always do when my Routine is upset. And then Sarah and I have unpleasant words before she goes off to Sheffield. When she gets there she emails: "Hey just wanted to say sorry for being horrible today. I hope you don't feel too shitty." Which makes me feel much better and I reply: I would only worry about the stresses placed on you by being superhuman if you were always wonderful. I'm sorry too for going to pieces when my beloved Routine is upheaved and I can't possibly say I won't let it happen again because I know it will. But anyway no I don't feel too shitty.

19 March 2006

Getting comfortable in bed has been a major preoccupation this month. The local "hospice at home" service told me a while ago that they could supply aids to comfort, so I got in touch with them and they offered me a "Propad" mattress. This is a 3" thick foam overlay in a rubberised cover, supposedly "breathable". They are distributed to the NHS by a firm called Med-Equip, and the catalogue list price for the double size is just under £200. Comfort-wise it was fine, but (as is common with cancer patients) there's the sweat factor to consider as well, and from this perspective it was appalling. From the day I put it on my bed, every night I woke drenched at around 4 am and had to change my sheet before I could go back to sleep.

I tried putting a fleece cover on top of the Propad. This made it slightly less unpleasant in that the sweat was absorbed rather than forming a cold pool underneath me, but it didn't stop the nightly drenches from happening. And nor did it stop the unpleasant smell of rubber and disinfectant from permeating my bed - these mattresses are loaned and returned to Med-Equip, who "sanitise" and then loan out to other users. The knowledge that other people have probably died on your mattress before you is another factor which makes this option unappealing. Try as I would to tell myself it was silly to be niggled about this, I couldn't get it out of my head. After a week I decided I couldn't bear it. I was very pleased indeed when Med-Equip came to take it away!!

Instead I have spent £40 on an eggbox foam overlay from Safefoam, which is just as comfortable and doesn't make me sweat any more than I was doing on a mattress with no overlay. It annoys me quite a bit that all the "Hospice at Home" service offers is loan of items - and a rather boring and limited range at that - without any advice at all being available on cheap alternatives which you can buy. And I wonder how much the costs are of "sanitising" these Propads between loans, and how many times they are loaned before they are discarded? Throw-away makes so much more sense in this context - nobody really wants to be on a mattress somebody else has died on, and the rubber covers, whilst essential presumably for hygiene when they are recycled through multiple users are revolting and make your whole bed smell of rubber on top of the sweating issue. When I phoned the hospice to say I wanted to return the Propad, I was told that "we find a lot of people don't get on with them"...

20 March 2006

The Palliative Care doctor suggested that I switch from morphine sulphate to oxycodone, which is another opiate derivative much beloved of drug abusers. The reason for switching is that it doesn't have such a lethargy/weariness-inducing effect as the morphine. Also it's meant not to give you hallucinations and weird dreams like morphine does. So agreed that it would be a good thing to switch before I have to be taking larger doses. But I've waited until today (Monday) in case there's any bad effects - to avoid the possibility of having to call out-of-hours service!

Having been doing some Googling on the suggestions this doc was making, one thing I didn't like was her suggestion that on the laxative front (considered 100% inevitable when on opiates) I should switch from Lactulose to something called Codanthramer. This was because I said the Lactulose made me fart a lot, but I hadn't meant to imply that this caused me any great grief. Since her visit, I have googled on Codanthramer and found that it's licensed for terminal patients only, because it's carcinogic. Which I might not be too bothered about if I was further on my way to dying (i.e. bedridden etc), but it seems to me that when this cancer is growing much slower than expected it stands to reason that there's an outside possibility that I'll live much longer than expected, and what could be more of a windup than finding myself living long enough to suffer bowel cancer before I leave this mortal coil? Funny thing is, the doc described it as a "gentle" laxative! By which presumably she meant bowel movements without straining, but all the same...

I get a reply to my email from the local NHS Direct, which answers my questions albeit with a slightly shirty tone. At least I now know that if I need to ring for an out-of-hours doctor I should state that I require a "policy direct transfer": "These are the words that would have the equivalent effect of stating you have a triage by-pass card if in Hampshire." The amount of shilly-shallying it took to get round to supplying this piece of information makes me think it's only as a result of my nagging that they have got round to formulating their procedure locally. So much for the across-the-board uniformity which was meant to be the great efficiency benefit of NHS Direct taking over the front-line-handling of out-of-hours GP services.

22 March 2006

Have now switched back to morphine! Monday evening as I lay in the bath reading I was simultaneously feeling chuffed that I wasn't dozing off all the time, as has become my norm (I have dropped two books borrowed from friends in bath in the past month), and becoming aware of pain in the back of my right shoulder. Unusual for me to get pain coming on in the evening, and the focus has always been front of my shoulder. During the night despite my sleeping pill I kept waking up and the Oxynorm stuff just didn't have the same comforting effect as Oramorph. Yesterday the pain was continuous although I'd gone up from 20mg to 30 mg and I was finding it hard to cope with pain being in a different place from where I'm used to it and have built up all my disassociation techniques around it being. Plus not going to sleep or even into a dozy state at rest times. By yesterday afternoon I was feeling very unsettled indeed and decided I should be grateful that, for me, morphine handles the pain so effectively; and recognise that there were advantages, for me, in its soporific (spelling?) effect. I think my brain has an inclination to be overactive and I need to be able to switch it off.

23 March 2006

Dear Sarah,

I feel pissed off to have had to clean upstairs toilet myself today because it was so smelly, carpets not been hoovered at all this week, dirty bath, sitting room a hairy mess etc. I don't think it's acceptable to leave the cleaning till Friday when John immediately comes and messes the house up so I never have the benefit of a clean house. And I don't understand what you have been doing with your time in 1st half of this week so you were too busy to do *either* Spanish *or* cleaning? I don't see why it would have hurt you to get out of bed before 11 am and make yourself more time that way.

Hope you'll be out here in time to get my lunch!

xxx Jos

Ian also gets a ticking-off for the state he leaves the living room in when he stays the night. However my crossness is greatly diluted by a cheering email from an Unknown Person whose husband has just been diagnosed with a terminal lung cancer, and who has come across my web pages while googling. She says: "Have just read your web diary. Seems strange way to spend sunny afternoon but found it bloody comforting!... finding your stuff has been great for me- to hear that there is someone else who can be bitter and funny and resolute makes me feel a lot less weird." It's bloody comforting to me to know that my diary has been worth writing, I tell her.

26 March 2006

Very pleased to still be here at the time of year when clocks go forward, am expecting it to make my life a lot pleasanter ... evening saunters in particular... have been feeling bad after climbs past few days - nasty tense feeling in stomach ... as if "bursty" type things like ruptures or hernias could happen - definitely to be avoided if possible! I think I'm pushing myself too hard now I have only one working lung and need to give some very serious thought and attention to modifying my hill-climbing techniques and how I breathe. Can't completely rely on my body to get it 100% right without some input from my brain. Also my desire for 10-minute lie-downs mid-walk has become very strong indeed. I love it so much, lying on a grassy bank with a beautiful view and the sky and feeling one with the earth etc etc.

28 March 2006

Have been a bit low - weariness rather than pain being the cause. Having to make a lot of stops when climbing hills, got very tearful at the sight of my tea last night because I just felt too tired to eat it etc. etc. The weather is now completely vile so I'm glad I got out this morning when there was "only" a cold blustery wind and not rain as well. Hopefully there will be a window before dark when it's bearable to go out again, otherwise I won't know what to do with myself. Can't type any more because it's hurting my shoulder. But I can probably manage to do a bit of editing my February Sent Mail into my diary as it's just copy and pasting. Will select some stirring music and have a go.

29 March 2006

Feeling better today than I imagined I ever would again yesterday! My friend Caroline and I did the Mitchells Field/Toothill Farm walk. I stopped lots of times for rests on uphill bits and did very little talking even on flat bits and it was unexpectedly OK.

I email John to ask him to sort out a wobbly floorboard under my bed this weekend. Loss of fitness has made me feel the need to get ready for the bedridden stage (although hopefully the sun will shine and stave it off for a while). We have moved chest of drawers today to make ready - point being that it's going to be a requirement to have easy access to both sides of bed, but the bed can't be moved until this floorboard is fixed.

31 March 2006

Ian has the day off work to come for a walk and to discuss things about Wills and Property etc. It would be much too daunting for me to try to have a concentrated sit-down discussion so the two need to be combined. As expected, he hasn't done quite the homework which I think he should have done and is making proposals which take no account of some fundamental considerations. But at least we chose a circuit with two long flat stretches and I was able to say as much as I needed to say without getting too out of breath. And Ian could have the inevitable initial reaction of feeling thwarted whilst trudging silently along. Whereas if we had been sitting down together to talk, silence wouldn't have been an option in the same way and cross words would very likely have been spoken.

01 April 2006

I get an email from the Chairman of the Parish Council to tell me about latest developments on the Brookfield Manor front. (My diaries for August and September 2005 explain all.) Victory! The Parish Council and Sir Hugh Sykes, the owner of Brookfield Manor, appear to have finally sorted out an agreement to restore concessionary access to the drive for villagers.


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