February 2006

04 Feb 2006:
Progress Report

Dear everybody,

The past month has been remarkably pleasant and stress-free, notwithstanding a bit of a challenge for my body and mind to adjust to. As ever, walking remains my key indicator of fitness and I'm still having no problems with 5 miles a day incl. steep climbing, although I'm not forcing myself to do more than a total of 3 miles on days when weather is harsh. A cold wind being the main deterrent.

By the middle of the month it was getting markedly more of an issue that my right lung wasn't drawing anything like as well as my left one - something I've mentioned in the last couple of progress reports. My general weariness level increased still further, and my stomach was feeling distinctly sore by the end of every afternoon, as if it was having to work very hard to activate my diaphragm - from which of course I have been doing all my breathing. Since well before diagnosis it's been impossible to breathe comfortably in and out from my chest - as most people do most of the time - due to pressure of the mass. So, I didn't have that as an alternative to give my diaphragm some rest.

I had a hospital appointment on 20th, at which my GP was confident that the x-ray would show what was causing this. In the days before it, I realised that I wasn't breathing in the same way as I had been. When I breathed diaphragmatically (consultant's word), all the activating of muscles involved in taking a breath was happening exclusively down my lefthand side. And I found that when I was breathing lightly, as when meditating, I was often breathing in a completely new way - activity happening "on the x-axis", i.e. *across* my upper chest, with expansion and contraction in and out from my sides. And, by the day of the hospital appointment, as these new breathing patterns established themselves, I was feeling dramatically less weary.

So, it was no shock to see what the x-ray revealed - my righthand diaphragm sitting in its raised outbreath position, with my lefthand diaphragm, as it should be when you breathe in for the x-ray, in its lowered inbreath position. It looks like a very dramatic happening when captured on x-ray. Consultant explained that the mass has "buggered" the phrenic nerve on the rhs, which runs from the brain and controls operation of the diaphragm. My GP describes this as a palsy. The fullblown medical name is "unilateral diaphragmatic paralysis". And -unlike "bilateral diaphragmatic paralysis", which is a very serious matter indeed - it's really no big deal. There's no chance that the left diaphragm will suffer similarly, since the nerves which control it are well away from the mass. 30% of "udp's" are caused by a mass in the chest cavity such as mine.

It's a much more palatable explanation of what was going on than other possibilities such as fluid in the lung which would need draining - it still remains the case that my actual lungs are feeling completely healthy and there's no evidence at all of anything untoward going on inside them. And since the righthand lung decided to put itself to rest, my left one has been breathing much more fully and freely than before. I suppose because my diaphragm is no longer trying to work on both sides, it's not hampered any more by meeting resistance from the right. As a result of which I think the overall total of oxygen getting into me has actually increased, therefore making me less weary.

It's a very peculiar sensation though, my body split up the middle of my chest with the lefthand side feeling remarkably fit and healthy and the righthand side just hanging there limply. I've found that the more limply I can let my right arm hang, the less of a problem I have with pain. In fact I think that breathing from the left lung only has been very positive as far as pain is concerned - now the righthand side is inactive, it's easier for me to disassociate myself from my pain, which is always concentrated in right neck and shoulders.

I fear that many of my readers will have glazed over at all this detail about breathing. People normally just get on and breathe without giving any thought at all to the muscular activity which is making it happen. I remember being very gobsmacked as a child by the programmes which were quite popular on TV in those days, when Charles Atlas musclemen flexed their muscles in time to music. I was just amazed that you could tell your muscles what to do like that. But you can.

There were two other highlights of the hospital appointment. For the first time since the first chemo when it caused such scandal amongst the nurses, I actually did have to lie down on the waiting room floor. Last time I went, there was a spare consulting room where they let me lie for the 45-minute wait. Other times I think I've been queue-jumped to resolve the problem of my being unable to sit while waiting. This time, there was no spare consulting-room. I'd phoned reception before I came to remind them that if I had a long wait I would need to lie down, but they hadn't been able to sort anywhere. So, I warned them I would have to lie down on the floor if I was waiting longer than 15 mins. Which was what happened.

We got ourselves prepared by moving into a corner where I would be able to barricade myself off a bit and not put anybody at risk of stumbling over me. I felt bloody awful for a few minutes when I first lay down but reminded myself that this is very normal for me whenever I'm seriously weary by the time I go for a rest. It was fine when I settled down and could almost have been an enjoyable 20 mins of just breathing away - at least there was a bit of air at that level, the waiting room is incredibly stifling. And nobody bothered me, reception notified consultant and she evidently told them to leave me to it. Ian's comfortingly large presence (http://www.joskingston.org/Terminal/Images/ianjos.jpg) in any case gave me full confidence that any attempts to make me get up would be gently but firmly resisted. However I was most distressed by the appalling sloppiness with which the skirting boards had been painted. The top coat finished at least 1" above where the carpet began.

The other highlight was that I asked the consultant "How long have I got doc?", a question they wish people wouldn't ask them but know they have to answer. Her answer was that she "felt that a further year would be very unlikely", words which she repeated in the "clinic letter" which she sends to my GP after every appointment and which I get a copy of. This is what she says, so this is what it makes sense for me to believe. It's not a convincing counter-argument to point out that they got it wrong at diagnosis when they told me that exceeding a year was unlikely - that was a prognosis without any knowledge of how quickly/slowly the cancer was growing or of any other factors concerning me, whereas this time the prognosis follows a year of observation.

But, who knows how long I could go on with the same prognosis. I have lost more weight than they are happy about. I can imagine that if my next hospital visit in 3 months shows further weight loss my prognosis might be reduced accordingly to 9 months from then, whereas if I can hold my weight they would probably keep to the one-year horizon. But I don't think I'll actually ask next time unless my weight has been maintained! There's still 11 stone of me, and I'm not really surprised that I should have shed a stone given that I've completely lost my previous penchant for cakes and chocolate. But the fact remains that this weight loss has been concentrated over the past 6 months, and that if I lose any more I will definitely be getting too thin. I certainly feel I need a bit of fat on my hips to be able to lie comfortably on my side, and I can't lie on my back at all now. So, I'm replacing cups of hot water with cups of milk etc. etc. and hoping such minor amendments to my diet will keep my weight stable.

I think that's just about enough of a progress report. I had been planning to include a second theme along with this hospital stuff but it's a bit the same as the toes topic in the last report anyway so not too much loss. On the subject of which I decided to be completely ungeographical and turn two of the unnamed toes on my left foot into the islands of Hvar and Ceffalonia, which are delightful places for virtual visits and get me into the sun a bit.

I decided to have something of a break from introspection this month and get some bits of IT stuff on my website instead. You will now find there (www.joskingston.org) my "Making IT Happen" docs covering Word, Excel and Access. As the blurb on my homepage says "These popular, waffle-free documents tell you in just 30-40 pages what most "How to" books take 3-400 pages to cover." They are probably my life's most widely-critically-acclaimed piece of work! I've also carried on tinkering away with my piece about pragmatic meditation, which now has a couple of new sections at the end. I enjoyed my partial break from writing terminal thoughts but I think that's where my head wants to be focussed again now in authoring terms.

Lots of love, Jos

04 Feb 2006

Sarah and I are very chuffed to be provided by my chum Marina with an exclusive extract from her forthcoming novel, in which our dog Paddy has a heroic role:

Stefan was the first to wake, conscious of something warm and heavy on his legs. He thought at first that it was Emanuel who had rolled over onto him in the night. He gave him a gentle shove, and came up against warm fur covering solid muscle. Devil's bum! The creature was huge and hairy, and it snuffled in its sleep. He sat up and rubbed his eyes. The dog sat up, too, and gazed at him with what can only be described as adoration in its soft brown eyes. It was a big, handsome dog, short haired and mainly black, with some white hairs around its muzzle and belly, which gave it a mature, distinguished air.

" Woof!" it said, beating its strong tail against the side of the landrover.

" Hey, Dog!" said Stefan, rubbing its ears. "What are you doing here?"

" Woof!" said Dog.

I'm feeling disappointed that meditation mentoring isn't giving me what I'd hoped for. My mentor suggested that reading a book - "Nonviolent Communication", by Marshall Rosenberg - might help me to resolve the tension between my belief in truthfulness, and being *kind* to people, which involves patience and calls on my mental energies I find it desperately hard to meet. But I didn't find the book at all helpful. A lot of it was already very familiar territory to me - what you get as standard fodder in the customer relations "awaydays" which all front-line staff in big institutions go on. And which I've always thought, as one of those front-line staff, supply useful perceptions to bear in mind. But which can easily slip over into patronising therapy-speak. For example:

Person A: You aren't God!

Person B: "Are you feeling frustrated because you would like me to admit that there can be other ways of interpreting this matter?"

Rosenberg offers this as an example of "Person B empathically receiving what Person A is expressing". I think this is person B coming over as pompous and self-satisfied. I think it's likely to make person A want to wring Person B's neck. I most definitely never ever want to talk to people like that.

I try to explain to my mentor that I think it's an essential starting-point to recognise that my situation is objectively a very difficult one which can't be dealt with by quick off-the-shelf answers; plus that I am incapable of functioning as a normal person can. I also decide that I don't want meditation mentoring to spill over into therapy - I'd rather it stuck to meditation and mindfulness of breathing techniques.

06 Feb 2006

A friend replies to my latest progress report: "I found myself unexpectedly ambushed by weepiness at the latest prognosis. Not that in itself it was unexpected, obviously, but its been so easy when I've been walking with you to almost forget and certainly under-estimate what's happening to your body, since you seem, purely from a walking point of view, as fit as me." I still can't quite bend my brain around other people caring and feeling emotional about me! Whilst I definitely don't want my friends and loved ones to make a long story of their distress - which then becomes a big extra burden for me to handle - it's very supportive to receive just the odd little passing mention from chums that a tear comes to their eye every now and then on my account.

I've certainly had a bit of weepiness to deal with myself, and yesterday I had a grimly bad pain day which for the first time was accompanied by being sick.

08 Feb 2006

Roy came off his bike in the ice last week and broke two small bones in his groin which means he has serious difficulties walking, sitting, lying down etc. Looks like he won't be able to visit for quite a while, by which time of course I might not exist any more. We will be stoic about it. Neither of us wants to get into big emotional stuff.

Bad pain day a couple of days ago and since then a chest infection. Felt very low but OK this morning. The sun is shining which helps.

10 Feb 2006

Although my spirits have returned I am still extremely, almost I would say perilously, weary... drained... But GP was very understanding when she came yesterday which was a great help. I do in a meaningful sense have a level at which I can feel strong and happy. Just can't do much. Off to bed now where I will probably listen to Palestrina (sixteenth-century motets), which has been highly favoured over past week or so. Profoundly, sustainedly calm and peaceful, and I quite enjoy the element of refreshing my Latin.

11 Feb 2006

Just got a parcel from my old school friend Liz to help me conjure up memories of time spent together nearly 40 years ago in the Shetlands. With things like a chunk of Shetland wool, a bit of Shetland knitting, nice smelly bath stuff from Shetlands etc.

As always, I'm very chuffed by getting emails from friends which say nice things about me, such as this: "I sometimes feel you are a bit of an explorer, and finding paths which with a bit of adaptation we could all follow. And if we are wise we will begin to map read now, before it is forced upon us. So thankyou oh mighty explorer."

I do like to see myself as a bit of an explorer, and it helps a lot that I can look on this experience as something of an adventure. I think I'll forego the mighty bit though.

12 Feb 2006

My level of weariness, an enormous sense of fragility, is far more what dominates my life than pain is. In fact it's getting at me now! I must go and breathe deeply some fresh air - it's a mild day so I can effect this by planting out some primulas amongst my snowdrops.

13 Feb 2006

I had to call the GP out-of-hours service earlier in the month when I had a chest infection. I had been told by my GP that she had placed me on a special list so that I would be fast-tracked to the out-of-hours doctor service without having to repeat myself to any intermediate layers. So I was distressed when I phoned to find myself running the gauntlet of a non-medically-trained NHS Direct call-handler, who gave no indication that she'd ever heard of a special fast-track list and tried to persuade me to talk to a nurse. My impression was there simply wasn't a procedure in place, and I decided to take this up via the central NHS Direct website. I wrote: I have a terminal cancer. My GP informs me that she has had my name put on a special list with NHSDirect so I will get fast-tracked to the out of hours doctors when I ring. Please inform me of the exact procedure I can expect the NHS Direct adviser to follow if/when I phone for an o-o-h doctor. I would be grateful for a prompt reply as this is causing me some anxiety.

Within an hour or so, I received the following email from the "Patient Communications Officer,
NHS Direct New Media": "I have spoken to a colleague at the NHS Direct Hampshire & Isle of Wight call centre and this is what happens with their patients: They have a different telephone number to use, which is recorded on the surgery answerphone. They 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. The system may vary slightly between call centres, so if you tell me the area in which you live, I will find out if there are any variations from this information."

14 Feb 2006

Having got straight back to "NHS Direct New Media" yesterday to tell them where I lived, today I get the message: "I've been trying to contact the call centre that covers the Sheffield area, but people seem to either be in meetings or on annual leave. However, I should have an answer for you by tomorrow." Which of course increases my suspicion that whatever may be the case in Hampshire, Sheffield NHS Direct doesn't have a similar procedure in place - if they did, any of their call-handlers should have been familiar with it.

15 Feb 2006

Another message from "NHS Direct New Media" - "I've just spoken to someone from the Sheffield call centre who has confirmed that their system is the same as ours - she said that you would be referred directly to your GP provided that your call was related to your illness - in other words if you phoned because you'd (for instance) sprained your ankle, you would go through the normal triage system." This is much looser than the Hampshire information, and raises fears that whether or not I'm fast-tracked to a doctor will depend upon whether or not a non-medical call-handler judges my call to be related to my illness. Also, I'm given no indication of what I should refer to if I have to phone the out-of-hours service - what's Sheffield's equivalent to Hampshire's direction that the caller "must state that they have a triage by-pass card as soon as their call is answered"? I post straight back to raise this question. Lack of a name definitely suggests lack of a procedure to me.

16 Feb 2006

Things have been good on the pain front the past week, not so good as far as discomfort goes - is specially difficult when I go for my afternoon rest, can't get my breathing steady and even.

18 Feb 2006

Problems continue with discomfort and strange sensations when I lie down for my afternoon rest. It's been the case for ages that I'll often feel pretty grim at the beginning of a rest time - when I go into inactive mode, all kind of twinges and judderings set in in my chest. Sometimes it's like having a baby kicking inside you! Before my right diaphragm ceased to function properly, deep breathing - from my toes to my head - was the mainstay of how I handled this and got comfortable. My rest times were relaxing and enjoyable after the first 15 minutes or so of settling into it. But it doesn't work like that any more. I have to lie on my lefthand side due to pain on the righthand side where the mass is, so this means that I'm squashing my fully-functioning lung by lying on it. It's very difficult indeed to get into comfortable deep breathing any more. I end up almost panting - getting breathless unless I breathe with my mouth, and feeling a bit panicky.

22 Feb 2006

Had a shitty lousy bad pain day yesterday in which I fear that I think technology played its part. Woke up at 5 with the usual precursor of a bad pain day - namely pain. On good days (still thankfully most days) pain is pretty well completely absent when I first wake up. Some days I am sensible on potential bad pain days from the moment I wake up, keep right away from computer all day etc etc. But yesterday I was not. I very foolishly decided to play for the first time with the digital sound recorder Ian gave me for Xmas and recorded myself reading three quite long poems by Andrew Marvell. And all that using of my voice immediately plunged me into ghastly pains in neck and shoulder when went on all day. And really I hadn't recorded them well enough to be a worthwhile bit of memorabilia.

It's snowing but I've been doing my walking notwithstanding - best thing to clobber these pains.

24 Feb 2006

Sarah and John have gone off for a week in Slovenia. Ian had a long weekend in Slovakia just before that. I'm feeling a bit narky at my family being so enamoured with going for these short breaks on cheap flights... I can just about hack the idea of return flights for one holiday a year but it seems a very profligate use of air miles, going for these short flights lots of times in a year.

28 Feb 2006

Until yesterday I was feeling fine about a week without having Sarah or John around. Have been feeling quite pleased with myself for managing not to be too upset by Roy still being in no state to visit. Poor chap can't get comfortable sitting, lying or walking, so I feel he's considerably worse off than me. Ian came out one night and a friend for another. But then my spirits took a low turn yesterday and I was feeling I needed to have a good howl but couldn't get myself off into one. Then today a bad pain day and I've felt very grim. Came closer than ever before to failing to summon up the energy for afternoon walk. Finally dragged myself out at about 4 pm and burst into megaweep mode in the parish burial ground, which was something I'd never done before but it is a very good place for such things.

01 March 2006

I've got quite a strong sense of deterioration even though I'm still walking fine. My mental energy is very limited and I haven't been able to get my head stuck into any projects even of the most modest variety.

I'm feeling pretty desperate for it to stop being winter... there has been some beautiful sun, but such a cold biting wind which makes me feel very frail indeed. I do so badly want some warm, gentle weather again before my demise. Which I'm feeling I *expect* to happen this year, whereas last year I accepted that it was likely to happen but didn't really expect it to - my body and spirits just felt too buoyant for me to be able to imagine that I was going to be dead before the year was out. Sadly, this year I don't feel I can say that any more - my spirits are far more subdued and jaded and my mental energy much lower. Sleep is vastly more seductive than it was.

03 March 2006

Feeling slightly more mentally energetic today although I do currently love my bed a bit too much and keep wanting to get back into it. But actually that's quite a refreshing change after a good few weeks of not being able to get properly comfortable. I'm very pleased with the "Body Pillow" which I found for under £20 on the website of a firm called Safefoam. I'd been wanting a bolster-type pillow for ages and not been able to find the right thing. It keeps my back in a good position very well, or alternatively if I have it in front of me and drape a leg over it, it takes a lot of the weight off the side I'm lying on, and stops me moving around and getting into uncomfortable positions while asleep... plus there's something very pyschologically comforting about it. It's nice to think about Roy when I wrap myself around it, and as Sarah points out, there isn't that arm which always gets in the way if you wrap yourself around a person. I email Safefoam to tell them how pleased I am with their product - which was designed primarily with pregnant women in mind.

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