Dear everybody,
It's been a roller-coaster of a month, with a couple of very low patches. However now that we have had a few days of sustained warmth everything seems a whole lot better. I don't think I ever remember so many people sounding quite so desperate for winter to be over. Keeping up my walking against relentless cold and biting winds has been hard, especially when there's been driving rain to contend with as well as the cold wind. There certainly hasn't been a drought in the Peak District - all is very muddy and waterlogged and streams and rivers are full - which does have the benefit of some quite spectacular waterfalls which don't exist at all in dry weather.
One of these low patches was about me realising that I was getting much more tired and ill-feeling from walking than hitherto. It got so bad that I completely convinced myself that my era of fitness was coming to an end. I was very tearful indeed for a couple of days, a different kind of tearfulness from that hitherto experienced. I think I was feeling truly frightened of what was ahead for the first time. Taking a grip on myself consisted of making Sarah move around furniture in my room so that the bed is fully accessible from both sides, in preparation for being bedridden...
And then the sun came out and so did the daffodils, lungwort, periwinkles, anenomes, primulas & c. And I found myself able to give some rational thought to why I seemed to be losing it on the walking front. When I'm climbing steep hills, I do something which almost amounts to putting myself in a trance. I focus everything on putting one foot in front of the other and don't think about the rest of my body at all. Which has always been very good in terms of getting up hills effortlessly albeit slowly. But I think that after my right lung stopped functioning properly, I needed to do some listening to the rest of my body when climbing hills. Especially when walking into driving wind and rain. I simply hadn't been recognising that I was getting short of breath.
Finally I twigged that the pains I was getting in the upper part of my stomach during and after walking were muscular, as a result of pushing too hard to get breath when climbing. I'm constantly amazed by how long it can take me to make blindingly obvious connections these days... So, what with the warmer weather and implementing the policy of taking it very slowly on hills, I feel optimistic that I can hold on to my 5-mile a day target for a while longer at any rate. But I don't worry about my target if the weather is seriously bad, and not a day has gone by when I've done less than two miles in total, however grim the weather. (My waterproof trousers have made this possible.) Anyway I feel pleased that the result of this low patch is that I've taken some necessary steps to prepare for the future, both in my bedroom and in my head.
The other low patch was the week before, and resulted from switching (on doctor's recommendation) from morphine to oxycodone, which is another opiate but reputed to have less sedative, drowsiness-inducing effects than morphine. This turned out to be very unsettling. I actually felt my pain was being managed very well on what the docs tell me is a surprisingly low morphine dose, combined with my various supplementary treatments. (Namely breathing and meditation; posture, moving around and walking; cannabis. And I don't underestimate my piece of yew tree, always clutched in my hand at rest and sleep times. A bit like a baby's go-go, but also rubbing it works as a disassociation technique when strange sensations are going on in my chest, and as an aid to my imagination - like an Aladdin's lamp.)
When I switched to Oxycodone, the focus of pain strangely moved from the front of my shoulder to lower back shoulder, and this persisted even when I upped the Oxycodone dose to a much higher level than was equivalent to my previous morphine dose. The breathing and posture techniques which I have developed over the past year have been geared to pain in the front of my shoulder. It was very disturbing indeed to be dealing with the pain coming through in a different place. It made me feel that sticking with the Oxycodone would be throwing out of the window all the complementary pain-handling techniques which I have developed and which have proved effective and also enjoyable.
It was my level of weariness, not pain, which had made me very willing to try Oxycodone. What I hadn't given any consideration to beforehand was the fact that there are positive benefits for me in the sedative effects of morphine. On Oxycodone I felt much too wakeful at rest times and this was making me overall more rather than less weary, albeit less drowsy. I also slept much less well - the pain in back of shoulder was waking me up. So, after three days of feeling pretty grim I switched back to morphine. I consider this as a positive result - I had wanted to see whether Oxycodone suited me better than morphine, and now I've tried it I'm no longer speculating whether the grass is greener on the other side.
Blood tests done a couple of weeks ago showed anaemia - a count of 11, but not any iron deficiency. I'm sure this is the main cause of my weariness - Googling tells me that the greatest reduction in quality of life due to anaemia comes when your count drops from above to below 12. But the only solution available is a blood transfusion (which of course only works for a while), and due to shortage of blood supplies, this isn't normally offered until your count goes below 8. In any case, there's round about a 20% chance of an adverse reaction to a blood transfusion, so I'm not wild with enthusiasm at the prospect. Please don't offer me blood, although it would indeed be a very kind gesture!!! But I couldn't cope with the hassle of going private for a blood transfusion, or with battling to get individually negotiated blood supplies transfused on NHS. What applies with kidneys etc doesn't apply with blood... I'm hoping that some sunshine will go a long way to countering the lack of energy.
Anyway, with these two low patches behind me and the weather mostly springlike I have felt positively quite good (by my standards!) for the past few days. My breathing is much more settled than it was and my imagination is in fine form. I've had some very enjoyable rest times listening to chamber music and imagining myself in the sunshine in a delightful little Baroque square in Jelsa, on the island of Hvar in Croatia. We had a holiday in Jelsa which coincided with the annual Hvar cultural festival, where professional musicians from Dubrovnik performed wonderful concerts every evening in this square. We were told that the musicians were paid primarily in olives and wine - I think the concert tickets weren't more than £1.
I've also got very taken with "spinal breathing", a traditional Yoga technique which you can do anywhere, any time, lying, sitting or standing. All there is to it is: Imagine the breath flowing from the top of the head, down to the base of the spine on exhalation; and imagine the flow coming from the base of the spine to the top of the head on inhalation. It automatically counters my tendency to hunched-up postures and makes me feel strong and in control.
Not amongst my wittiest progress reports I'm afraid. Ah well! I hope I'll still get plenty of emails in response - they do cheer me up a lot, even though I don't have the mental energy for more than the briefest of replies.
Lots of love, Jos
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It's been pouring with rain again all day again today, which is a bit of a pig. And yesterday the wind was bad enough to force us to replan walk mid-route to keep down in the woods. Ah well, at least it isn't bitterly cold any more.
My friend Catherine tells me "I suspect most in your situation would either be at the mercy of their physical condition, or fighting it, probably futilely (not a word but it will do) and at the cost of enjoying the pleasures and comforts that are attainable even in this." That strikes me as a very good summary of how I see it. Catherine is my major source of borrowed books, and I have something to confess to her: On the books front I fear my weariness over the past couple of months has taken its toll and I dropped Arthur Miller [his autobiography] in the bath. I don't think it would be fair to blame my irritation on his "cat who got the cream" attitude to Marilyn Monroe... However it has been carefully dried out and placed under heavy weights so isn't *too* bad. Otherwise putting books in a plastic wallet has worked fairly well, except fatter books suffer more... plus also weigh more and probably therefore more likely to drop if I doze off, so I feel safer with tomes of less than 300 pages.
My school chum Liz says: "Do keep walking. I believe this is your lifeline." I definitely will keep walking until I drop. I admired Nelson Mandela declining to attend opening of S.A. parliament this year because it would have interfered with his exercise regime!
An old friend's brother has died of cancer only a very few weeks after diagnosis. Much too quick. I do feel very fortunate indeed, to have had what amounts to a bonus year...
There's a cold wind again which is a drag but at least it's not *too* biting. I'm going into the back yard now to plant pansies in window boxes.
My tales of trudging up hill and down dale in snow, wind and rain result in quite a few chums confessing to possessing "a terrible tendency to bottle out and stay indoors". I feel that I just don't dare to bottle out of my walking - I have a sense that I could lose it very quickly indeed if I did. I've done my 5 miles total every day this week so that's good. At the beginning of last week I really thought it was an impossibility that I would ever be able to walk more than the most piddling distance again. Anyway my daily walk is peanuts compared with daily work... I can't imagine any more how people do it.
I'm pleased to get a letter from the Palliative Care consultant who visited last month. Firstly, because she tells me that she's following up whether I can get Sativex - a cannabis spray - on a hospital prescription; and secondly, because she suggests that I could communicate with her by email if I find that easiest.
I'm finding it very hard to keep a suitable level of detachment from Ian's job with a well-known Internet Service Provider who head-hunted him back at the beginning of this year after he had been lured away to pastures new. My work also being a variation on the theme of IT support, we've always enjoyed lively discussions about how to do the job well. The thing is, I get myself sucked into reading all the bad-mouthing which goes on in the public discussion forums about ISPs when unpopular decisions are taken (such as putting limits on the amount which customers can download). It has the capacity to turn into compulsive viewing almost like a soap. Not only that, but the ISP which employs Ian has Webcams in its headquarters - you can watch the staff at work from their website! I'm trying to persuade Ian to take up meditation or yoga to counter the stress...
Be peaceful as the collared doves are saying all the time if we understand what their cooing means... they are forever bringing me back to my senses when I start to lose them. Which I do quite often.
Had a lovely walk this afternoon despite sleet, feeling OK but a bit worried about going red in the face and whether it's this vena cava syndrome where mass blocks blood supply to head. However I've been bedogged by these worries before and continued to live a relatively merry existence for months longer.
Get an email from somebody I've not seen or heard of for more than 30 years - he'd Googled me and found my website.
Have been feeling very washed-out and weary indeed and knackered by walking and shivery. Temperature 101. Definitely feel on the decline. Wish it was warmer. Woe is me etc.
This morning I no longer have a temperature of 101 or aches in both sides of my lower shoulders though still feeling far from lively, and pissed off that sun is elusive. A chum says "It must be a very frightening time". I tell her: Am definitely trying very hard not to do "frightening" so please treat, along with "anxious" as a banned word! "Trepidatious" is the most I will permit myself...
I feel something approaching human again at this moment although could do without the day being miserable and wet.
Extent of feeling lousiness has been such that I've been teetering too much
on the brink of going into flip mode - Kingston things bugging me again. The
main other thing which preoccupies me at present is that I'm having to keep
reminding myself that if I honestly accept that I'm going to die, that
has to mean accepting loss of fitness along the way. Even tho' not in temperature,
sweats and shivers mode any longer I fear I feel a lot less healthy than I
did. My body is doing all manner of uncomfortable and peculiar things. At good
times I can detach myself by getting into the rhythm of some spinal breathing
while I listen to music; and slightly surprisingly I go to sleep quite a lot.
Must go off now and lie down or it will turn into a bad time and I'll have
difficulty distracting myself from the unpleasant sensations.
I had a rant about family niggles to my friend Jane as we walked across the fields to Leadmill Bridge - my morning mile. It's a recent discovery that these flat water meadows are a good place for letting off steam - come to think of it, they let off steam quite often themselves - mists rise from them in a wonderful way when we have these "inversions". Anyway I let myself go rantwise to the point of childishness and when we got to my oak tree friend at the far side I sort of jumped into its arms in a petulant fashion. Which got me laughing at myself.
Funnily enough my mind has been very free of niggles since my rant... and I have been feeling surprisingly much fitter and yesterday ended up doing one of my more strenuous afternoon circuits - 4.5 miles with a lot of hill. Weather warm enough to take my time and I kept off doing talking. I think I prefer silence anyway! So that has pleased me no end.
On other days I have been doing more but shorter walks - longer days make this possible. Feel strongly that I mustn't obsess about sticking to my routine and that routine itself needs to be flexible and pragmatic. Also that it's worth reminding myself that there's more than one way to skin a cat in terms of attaining deep satisfaction. In summery weather I will be very happy to walk shorter distances and be able to have a good long lie-down in the great outside in the course of my walk. As part of my campaign to accept that I'm going to lose my fitness I have been contemplating the greater desirability of doing the declining and dying over the summer months rather than over the winter...
The riverside is specially lovely at the moment, with the smell of wild garlic filling the air and lots of wood anenomes, celandine, butter-burr, violas etc.
Being without either walking companion or dog today I decided a road walk up to Highlow and then a bit of a trespass was called for - I do rather like trespassing on my own. And it felt especially low-risk of getting challenged today because it turned out the road was closed for tree and hedge-cutting so I knew the farmer wouldn't be driving by... Had to stop for lots of rests on the way up but I made it and felt very satisfied. There were still black bags of rubbish dumped at the top in one of the boles but not more than last time I don't think, and they didn't smell. It wasn't very warm though so I didn't stop up there for long.
I get told in an email: "when I read your evocative listing of the flowers in your countryside, I often believe you have invented the concepts of the early romantics all by yourself, and could teach the others a thing or two". To which I reply: It's very notable from emails I receive and enjoy that listing the flowers growing in one's garden or in the countryside nearby invariably generates pleasure in the reader - one doesn't have to be in the least bit literary to evoke this response!
My oldest sister who lives in the Orkneys says: "I cannot, still, be reconciled to the idea that I will never see you again. I am sorry to be still in this mode,but I just can't change it." I feel I have to tell her that I "just can't change" the complete dread which the thought of Big Emotional Visits fills me with. And I very much don't want to change the capacity which I have developed/am developing for emotional detachment. This is something which I suspect it's impossible for her to understand. It's an enormously positive thing to me that I'm facing death as my own person and not as half of a couple - otherwise, I wouldn't have this opportunity to detach myself from quantities of emotional baggage. Our lives are so different, her relationship with her husband is so central to her, I don't expect her to be able to understand what an enormous relief it is to me that Roy doesn't feel impelled to make martyrish efforts to get over to see me in his immobile state - it's been nearly 4 months now since we've set eyes upon one another. Perhaps we never will again. It doesn't make any difference to the support he gives me, which (as with children in fact) involves not sharing with me any distress he feels at my plight and consistently sticking to "isn't it wonderful that you manage to keep in such good spirits and get such a lot of enjoyment out of life". That's just what I want and need.
Warm weather seems to have given me a new lease of life. Have mowed the lawn today (mind you Ian did the first mow of the year last week, which is the hard one, after which my lawn really isn't much harder work than hoovering. (Which of course I certainly can't do.)
Sarah away for a week in the Lake District - having just passed her driving test, she's borrowed John's car. One of her friends has also been put on insurance so she can share driving with somebody more experienced. Am managing OK on my own tho' house is rather messy and dirty.
Now that it's warm and I can have a lie-down mid-walk I'm back onto 4 miles in the afternoon which is pleasing. Have upped my morphine base dose by 10 mg (to 50 mg twice a day) because pain in neck was getting to me too much of the time - seems to have worked, and I'm not noticably more dozy I don't think.
The good weather has made the computer seem very unattractive. I'm just pottering around and going for walks and generally having quite a pleasant time.
The Palliative Care consultant emails to tell me that her pharmacist has received the information about Sativex. The pharmacist "sees the cost as a huge impediment". They (Bayer) make you order 4 vials at a time, rather than being able to try out with just one. I'm asked what my thoughts are, and whether I still feel it would be of benefit.
My personal assessment is that - for all my quirkiness - I'm managing to maintain quality of life remarkably successfully given the size of the mass, and that the level of opiate dosage which I am using to achieve this is notably modest. However, it couldn't be said that there is conclusive evidence to attribute this solely or primarily to cannabis. I see myself as employing an armoury of resources, where meditation and mindfulness of breathing; posture, moving around and walking; the discipline of a daily routine with fixed and substantial rest times, all play their part alongside prescribed analgesics and cannabis. At the same time the atypicality of my cancer might mean that objectively it causes considerably less pain than a terminal patient receiving palliative care would normally be expected to suffer.
Having said that, I do feel a degree of certainty that cannabis is playing a useful part in my overall strategy, and the time has come when I feel that I really would rather not continue imbibing by smoking. Once bedridden I would consider smoking it a complete no-no. There is the option of using a vaporiser but the one I have access to is rather a clumsy piece of equipment which you can easily burn yourself while setting up. It wouldn't provide a solution when bedridden. It wouldn't be at all feasible to dose myself that way if I was in a hospice/hospital.
Re having to order 4 vials at a time I say to the doc: yes, this is completely ridiculous especially given the cost of £176 for 4 vials each of which contains only 50 sprays and only has a life once the vial is opened of 14 days. As a taxpayer I feel indignant. It obviously makes sense to have just one vial to try out in the first instance. I could write an email to Bayer stating point of view and requesting a revision of this procedure, pointing out that this policy is effectively making Sativex unavailable to me? You could do a similar thing too? I'm not clear what you/your pharmacist would see as viable options if a change of policy can't be effected?