Dear everybody,
Another generally very pleasant month, although with some bad pain days but even then managing to stick with my routine, walk my usual walks, meditate, potter in the garden, do little bits of brainwork (mostly in the modest form of writing emails). There has been a lot of wonderful weather mixed up with the rain over the past month, with the clearest and bluest of skies and warmth in the air. I have thoroughly enjoyed being able to lie down for a few minutes in the course of my walks and just be one with the grass and the breeze and the clouds and the sun. However, despite maintaining walking fitness I do have a sense of deterioration. More and more things I can't do with my right arm, unscrewing lids being perhaps the most commonly encountered. But for this, there's the obvious workaround of learning to use my left arm as much as possible, and fortunately I've always had a bit of ambidextrousness about me.
Stretches at the computer before pain sets in become ever-shorter, and sometimes it takes quite a bit of discipline to get up instantly when I get any of the "danger" signals. I don't like having to cut across spurts of creative energy, but sadly I must. But it's good that there are still things which my brain can have the satisfaction of getting obsessed with - an excellent way of forgetting about pain. I'm no longer capable of such things as computer programming or historical research which in the past have been the main things which have got me into obsessive mode. But I can still have great fun with my head, as I have done over the past few weeks piecing together recollections of youthful high times with old friends. I often feel that since diagnosis I've been "high on life" in a way which has a lot in common with how I felt when I was 17. I'd like to be able to fly away into writing a piece about the years 1965-9 but I'm by no means 100% convinced I'm going to be able to summon and sustain the energy to do it.
Something of a sense of worth has been achieved this month through making my Submission on the topic of ill-health retirement to the Director of Human Resources at SHU. (As outlined in previous report.) I received the most apologetic of apologies - none of this "we regret any inconvenience which may have been caused" standard customer services-speak, but a proper, unreserved apology. And, all the improvements in procedure which I proposed are being implemented.
Actually, I've been surprising myself by *not* having big problems over feeling that continued life is worthless and pointless. I feel that there's a very clear purpose in it if I can overall sustain and communicate a positive spirit. My sister just sent me an email saying "I shall look forward to hearing your progress report as I really have no concept at all about how you really are" - well in a sense I don't feel that a "real me" exists! By which I mean that I see myself as deliberately and often defiantly being as minimalist as possible over emotions. There is a me that sometimes flips, but why should I consider that to be a more real, a more legitimate me than the one who plods merrily on with my Routine, and gets a very simple, elemental kind of joy out of doing so? So far I haven't had "wobblies" more than every couple of weeks, and they have been short-lived. This isn't counting the odd little weep to myself in passing, which aren't exactly miserable weeps, more just releasing emotional tensions as I go along. In fact they're often quite enjoyably soppy weeps in a way. But this enjoyment depends on keeping them private and not having to handle other people's reactions to the tears.
One of the very many ways in which I'm most relieved to feel completely free at last from the clutches of my workplace, is that I no longer have any reservations over being public about my cannabis consumption. I have hitherto been feeling that my integrity has been compromised by my silence on this point - although I *have* been upfront with the doctors from the start. I have accordingly revised some of the topics on my "Terminal Thoughts" web pages (primarily. "My daily routine") to factor in the part played by cannabis in my armoury of resources for handling terminal illness. Sometime I expect I'll also get round to writing up cannabis as a separate topic. In a nutshell, for me its benefits are: 1) Brings me straight out of depressed mode - can always crack a joke when I've had some. But, unlike oral morphine, I feel in control of its effects on my mind, rather than addled by it. 2) Keeps up my appetite - have very clearly demonstrated this to myself by experimental periods without cannabis - my appetite plummets in two days 3) Pain relief - I'm finding it mixes very satisfactorily with morphine and makes it possible for me to be comfortable on a much lower morphine dose than GP and consultant expect that I would need. In fact, my GP - who was very non-committal at first about my cannabis consumption - said at last-but-one visit that given how remarkably fit and cheerful I was keeping, she really didn't think I should let myself run out of cannabis.
Of course it's typical doctors that out of all the different survival tools I make use of - meditation, all sorts of breathing techniques, very healthy veggie diet, handling pain by moving around instead of lying down, always having my piece of yew tree in my hand when I rest or sleep, firmly holding on to my Routine etc etc - that they should home in on cannabis as the one which is most likely to explain my surprising fitness. Well I mean it's a drug isn't it and drugs are what they understand about... Oh I suppose to give them their credit they do also have some faith in the efficacy of all the walking I do.
This is not to ignore that cannabis could at the same time be the villain which caused the cancer - who knows, there may be clues when they chop me up after my demise. I have subjected my lungs to various other revolting substances in my life, for instance the chemicals we used in the printing co-op. Plus asbestos, fibreglass and very large quantities of paint and stripper fumes in the course of building and renovation work on houses. Not to mention too much stress and depression in my life... Meanwhile nowhere, as far as I can establish, are there to be found any accounts of similar cancers (i.e. large tumour in chest cavity but no signs of anything going on anywhere else) and a relationship with cannabis. Anway stable doors and horses, as far as the whole cancer and palliative care bit is concerned, a lot of research is coming out reaching the same conclusions as me regarding beneficial effects, at least for those who find it pleasant to consume. See http://www.idmu.co.uk/cancan2003.html for a summary of the research.
Notwithstanding how impressed my GP apparently is by how I'm handling this thing, we did have a bit of a clash in approaches a couple of weeks ago. I was having a bad pain bout when she rang as she always does on a Thursday morning, and, as very often, pains in neck made much worse by talking. When I told her I was having a pain bout and couldn't talk, her line was (very kindly and well intentioned) - "Just listen to me then. Go for your rest NOW (10.30 a.m., an hour before my rest time) and take enough Oramorph to make the pain go away. And I don't want you getting bouts of pain like this again - you *must* up your slow-release morphine dose. And once you've done that, it's going to need that you will have to take *more* Oramorph when "breakthrough pain" hits you."
It was so frustrating not being able to argue the toss with her. Despite previous praise for my approach, when it comes to the crunch here she goes all morphine-centred without "factoring in" the rest of my armoury of resources, or taking into account that I'm getting a lot of joy out of life and at present bouts of pain are worth suffering for my mind being as sharp as it is. I *know* that it won't take a lot more morphine for me to go blobby. And then you can bet I won't have the energy to push myself into keeping up my walking either, as well as not being able to write.
Most of all what I don't want to do until I really have to, is override my Routine when pain hits. Keeping going until my rest time, moving about pottering, doing little snatches of writing in between, and not *until* my rest time treating myself to some Oramorph, just seems a much better approach to me than going straight to bed and dosing myself stupid. So, I sent her a little letter telling her the above and she reacted most positively. My letter took the form of pasting my account of the event from an email to a friend, which saved the hours I would have spent cogitating on the right way of saying these things if I'd tried to state them direct to her. She commented that herself being presented in the third person made it something which she reacted to humorously rather than defensively, so I've decided that this is a strategy worth having up one's sleeve!
That's it for this month. Have added August diary and Sept progress report to www.joskingston.org
Please keep remembering how much I enjoy your emails...
Very pleased with the fair traded organic cotton nightshirt from Amnesty International which Roy has given me for my birthday. Changing into this soft and comfortable garment adds to the sense of ritual which I like to cultivate for meditation and rest times - separation from my active, communicative periods. I order two more, one of which is to leave nicely pristine and unused in my drawer to be layout wear after my demise. It had been exercising me for quite some time what would be appropriate dress and I am very pleased to have the question resolved.
I tell my incapacitated chum that I'm thinking I haven't yet reached the point where I really know what bad pain is. Thinking how can I tell whether I'm handling the pain I'm getting effectively, or whether I'm simply not having more than a low level of pain... I don't know... and quite likely it's a combination of both.
In the course of going into late 60s nostalgia mode, I have asked my mother about a few of my memories. It's become evident from her responses that she would much rather that my brain hadn't gone into raking up the past. Well of course if it was putting together some nice family history trees that would be fine, but when it's stuff which I can't and won't disentangle from my awful relationship with my father this is dangerous ground. I'm expected to play "let's pretend" games and never mention anything which isn't nice.
At the same time my mother seems to think that I can be expected to compensate for lack of "in the flesh visits" by keeping her in touch with my state of health in blow-by-blow detail - she evidently wants an email from me in her mailbox two or three times a week. I don't find it in the least bit helpful or pleasurable to me to spend my time imparting this information and am getting wound up by the pressure she's putting on me to do so.
My incapacitated chum and I continue our discussion about pain. I tell her: One thing in particular is that I'm sure you're right that "The number of days a particular bout has lasted is often just as important as the "degree" of pain - ie how worn down you feel is very important.". So far - since diagnosis - I haven't had to encounter two consecutive days of bad pain, and I haven't been woken up at night by pain or unable to get to sleep because of pain. So, when I've had a pain bout, I've always been able to think that more likely than not I'll only have to put up with it for a day and that has been a very big part of what has helped to make it bearable. I had considerably worse pain bouts in the year or so before diagnosis than since - obviously partly because of not being on heavyweight pain killers, but also I think because of the fear which accompanied the pain - I *knew* it was a symptom of there being something badly wrong with me. Since diagnosis, there hasn't been this accompaniment of fear. I have a terminal cancer, so of course I have pain.
Roy and I go through phases of having fun inventing silly salutations for one another - today it's given me great pleasure to be addressed as "star of the peak and the yewgrove"!
I had a visit from the undertaker Mr Noutch this morning (on my request), who grows enormous leeks and takes all the vegetable prizes at Hathersage Horticultural Society Annual Show. He is a lovely man and told me all I needed to know and made me feel happy that all that side of it won't cause grief for children. He is the administrator of the parish burial ground - this adjoins the churchyard, and Hathersage residents can be buried there whatever their religious beliefs. My current thoughts are that having a burial place here means that there will be somewhere beautiful for people to come and remember me at leisure in their own time, and consequently I don't give a toss whether there's a memorial event or not, that's entirely up to the children. It costs £550 incl. gravedigging, to buy the plot, and you can only buy in coffin- not urn- sized units, but I think it's well worth it for being in such a place. I would like to think that villagers on benefits have the cost paid by the state and aren't denied this beautiful spot as their last resting-place.
I told Mr Noutch that my headstone would say "Long walk to freedom" and
was pleased that he recognised it as the title of Nelson Mandela's autobiography
and said he liked it.
Haven't had a bad pain day for over a week which is good, and have been much
enjoying life.
My mother sends me an email saying: "if you ever think you might profit from any new treatment which costs money - and we all know that such things are happening - I would happily give you the money I have left and never regret doing so even if it turned out not to help". As a result of which, I'm starting to become petrified that we are now moving into a phase where she starts sending me information about various crank treatments "Jocelyn I DO WANT you to try this" etc. etc. I just couldn't bear it.
I do my best to explain to her why this is a route I have no desire to go down: my closest friends include medical professionals. If there were at any point new treatments not available on the NHS which held out any rational hope whatsoever, they would tell me. So would my GP. So would my consultant. They aren't telling me anything like that, what they're telling me is that I couldn't possibly be handling it better than I am. Lots of people with terminal cancers spend all their time looking into possible alternative treatments, putting their faith in one supposed wonder-remedy and then another. Lots of people with terminal cancers are pushed by loved ones into desperately trying anything, and it's often loved ones who push people into having radiotherapy or more chemotherapy as the end approaches. Why? Because lots of people who have been diagnosed as terminal - probably most people - can't/won't/don't accept that they are going to die. Or their loved ones can't accept it.
To me the idea of desperately pursuing treatments is completely ghastly. A roller-coaster of hopes raised then dashed again. One's mind filled up with weighing up the supposed benefits of all the hundreds of different options available.
It strikes me when I think about my childhood that my relationship with my mother could never have been considered as close. It was only after my father died that I began to develop any feelings of love for my mother.
It's such a relief to have excellent like-minded friends to relate to! One of them makes a very supportive comment about how well I'm succeeding in living in the present. I tell her: I'm rather pleased with myself too on the living in the present bit - I really do feel that I am. Sometimes the "sensations" are so peculiar - especially ones which I imagine could lead to a blockage of blood supply to head - that I really do think this is it. And I've found myself quite calmly holding on to my bit of yew tree tighter and saying to myself "Just go with it". However the big question is what will happen under the onslaught of truly serious pain.
I decide I must try to communicate to at least one of my siblings what a hard time I'm having over relating to mother, how much it's been consuming my mind, how very troubled my head is feeling. I email my youngest sister accordingly.
The extent to which I'm feeling wound up about childhood memories and relating to my mother is becoming unbearable. I feel in serious danger of falling apart. I start looking for a counsellor who could give me some emergency sessions.
I am rather taken with the idea of leaving a space on my headstone for Roy's name to be added on his demise. I tell him: It occurs to me that there is no need for your corporeal presence onsite for you to be remembered on my headstone. You can have your cake and eat it and be buried in woodland on the other side of the Pennines. Perhaps you could also be included on other people's headstones too if further suitable relationships came your way, and find a place in history as a result. A kind of virtual non-monogamy without the risks of infection, excessive time and energy being spent in Relationships, etc. etc. which mortals suffer.
After an initial reply which I had found quite supportive, a further email from my youngest sister on the subject of how to handle my crisis over relating to my mother hit a strongly discordant note with me. It was on the lines of "all of us find relating to mother exasperating" and felt like it was turning a blind eye to me trying to get over that terminally-ill me had reached breaking point over it.
Had a very useful emergency counselling session this morning. She came up with just the right strategic keyword, i.e. that I needed to define the boundaries of my relationship with my mother.
Quite a bit of rain this week but some sunshine in between and the autumn colours are just wonderful. Still capable of feeling that my life is overwhelmingly a joyful thing even though most of the time at the moment it's feeling as if a completely overwrought, mad me is getting the upper hand.
I feel slightly better after managing to write an email to my mother which at least goes somewhere towards defining boundaries. It says: After much cogitation, I've concluded that we're best simply not trying to have "meaningful" discussions. I get so upset and niggled by the slightest challenges to how I'm handling things, and I just can't stop my mind doing this - I only wish I could. I think we're in danger that words could undermine affection, and that the wisest strategy is to keep communication at the simplest of levels. I find that thoughtfully-chosen cards, pictures that really mean something, are a specially good way of communicating without getting bogged down in words... I'm so sorry I don't feel able to cope at all with phone conversations any more.
Childhood memories have been flashing back into my head over the past few days with an intensity which I have never experienced before, although the memories have been with me all my adult life. Perhaps the morphine has something to do with it, and as I'm getting more wound up I'm finding myself slugging away at the Oramorph at rest times far more liberally than ever before. Today there's one memory in particular of my father being unable to control his temper, which I just can't get out of my head. When I tried to tell Sarah, thinking it might get it out of my head to do so, it got so vivid, I was back there in it, and I got seriously out of control for a few minutes. Rest times have become times to be dreaded - can't rest, can't get comfortable, can't get these pictures out of my mind.
My mother replies to yesterday's email: " I agree with every word of your letter and am really grateful for the good suggestions". And then promptly goes on to make a comment which winds me up ... I'm in a state where I'm just not capable of taking a deep breath, being patient, and all the other things which a sane person would be able to do. I decide I'm going to have to lay down some more concrete boundaries. I decide I have to tell my mother: "I just don't want you to make any comments at all about my life, my relationships, my situation." Just stick to exchanging nice cards.
Today is a "breakthrough pain" day - I always know as soon as I wake up, if I have any real pain at all, that the day will be dominated by pain. I consequently took 50mg instead of 40mg of Zomorph this morning - I've found I can get away OK with doing this and then going back to 40 mg the next day. Pain worse today than I remember it being since before diagnosis, when I had a few seriously excruciating, "up the wall" bouts. Feel some sense of triumph that pain doesn't prevent me from sticking to my daily routine(what's the point of going to bed with pain like this, it only makes you obsess over it), and as usual on pain days over the past few months, it's wearing off by the evening.
Feel very unsurprised that my dismal state of mind should be accompanied by a big pain do. One thing that keeps on striking me is that I haven't found the pain frightening since diagnosis - I accept that it's an inevitable consequence of having a terminal cancer, and I'm one of these peculiar people who isn't scared of death - not that I want it of course, I just do see myself as a speck in the universe and death as part of life.
I have written a letter to the hospital docs (which I was rather proud of) in which I said: "Please note that my problem with sitting for any length of time is serious and that I will need to be able to lie down somewhere if I'm kept waiting more than a few minutes. The floor is fine but this is contentious with the nurses and would require your authorisation." I get an email reply from the doctor I'm seeing: " It may be worthwhile you coming for 9am if poss as I am usually twiddling my thumbs waiting for people to come out of bloods and could see you virtually straight away. I appreciate you live a way out but if you come for your appointment time I cannot guarantee you will be seen on time. Hope this is of some help."
I'm a bit disappointed that she doesn't consider the fact that travelling at rush hour means me spending twice as long or more sitting uncomfortably in car! So, I reply to her: "If I have to wait I will need to lie down, and if there isn't a trolley made available, I will lie on the floor, authorisation or no authorisation. I will try to remember to bring a pillow with me just in case. I assume that nobody would be silly enough to forcibly pull up a patient with a 10 cm mass pressing on their vena cava. In any case my son is comfortingly large (http://www.joskingston.org/Terminal/Images/ianjos.jpg) and will gently but firmly resist any such attempts."
I'm enormously relieved that my oldest sister, who my mother lives with, has now completely taken on board my state of mind, and has the counselling skills to help my mother to accept the boundaries I'm putting on our relationship.
No response from the doctor to my threat of direct action on the lying down
front. Sarah and I have been considering possible slogans for a banner if I
need to lie
on the
floor
at
the hospital
tomorrow
- my "mass" protest...
I'd have thought if doc had any nowse she'd forward my email of yesterday to
an administrator and say "your problem matey" - perhaps that's what
she'll do.... By the evening I'm getting very wound up about it and decide
that really I can't face the prospect of a battle, and send an email to the
doctor I'm seeing with subject line "A PLEA!!!":
"
If you are twiddling your thumbs at 9 am please, for mercy's sake, sort something
so I can lie down when I need to lie down while waiting to see you. 3/4 of
me may feel extraordinarily fit but the other 1/4 of me is very ill indeed
and quite evidently getting worse. I am never stupid enough in my daily routine
to test out the theory that if I don't lie down when I need to lie down, I
would collapse, and I would really prefer not to have to test it out tomorrow.
I may make a joke out of the fun of direct action but actually am dreading
the prospect that this is what I'll have to do."
Hospital appointment now over and went very smoothly. They ushered me and Ian straight into an empty consulting cubicle with trolley to lie down on after I'd been for my X-ray, where I had a very pleasant rest for 45 minutes while waiting for the doctor. And then I felt that the doctor answered the questions which I'd raised in my letter at the level which I was hoping for.
Have increased my "base" slow-release morphine dose from 40mg to 60mg today. Was putting up with too much pain on 40mg.
Kingston family relationships still causing my poor old mind a lot of grief. I have felt so much of the time over the past few weeks as if I'm having to repeat the teenage process of breaking free from family. But doing this when seriously ill and extremely weary is taking its toll on me, and I'm feeling very fragile, ready to snap at any stress. Sarah gets the brunt of this when she tells me she's not coming out for this afternoon's walk as promised. My email to her reads: Fuck you ringing up in the middle of my rest time when i've had to morphine myself to the nines to get comfortable and fuck you playing fucking lets pretend games with me and asking me whether I want you to come when you have no fucking intention of doing so but only want to feel good about yourself by asking. And fuck you inventing colds etc - how come this only gets mentioned when your other ploys fail.
... and then of course feel very bad about myself as the poor girl evidently *does* have a cold. A quick further exchange of emails with Sarah cools things off, although I do still feel cross with her!
Send an email to all siblings explaining state of play regarding my state of mind and relationship with mother.
Still feeling somewhat aggrieved by Sarah, so I put together the thread of correspondence which included my outburst of 21st and send to both Sarah and Ian for comments.
Send various individual emails to siblings regarding their relationship with me.
Ian comes to stay the night, as he always does once a week, and tells me that I have been "way out of order" regarding Sarah. Which makes me feel gratified because of the support the two of them give each other. And of course it's fucking obvious that what he says is fucking true given my fucking email to Sarah of 21st. (Sarah thinks I ought to add in a "smiley" at this point in the text:-)
Still feeling very wound up and that I'm wanting to clear the decks in my life. Send out email to workmates telling them I'm no longer going to be sending them progress reports. I tell them: Fond as I am of many, many of you, I find the idea of continuing to exist as a virtual presence in the department through my progress reports in people's work mailboxes, including mailboxes of people who aren't people I have chosen to distribute it to, just doesn't feel right. This has been partly decided by the things I'll be writing about in my next progress report, which I want to feel I'm emailing only to like-minded friends who won't be sending me emails in response with comments that come from heads which are completely different and worlds apart from mine, and which would run a high risk of winding me up.
I point out that everybody can keep in touch with my progress via my website, and just so they don't worry that there may be important news about me that they would like to hear straight away, (e.g. the old bugger's dead at last), I'm going to continue to send my progress reports to one of my favourite work chums.
I find myself deciding that I can't relate any longer to siblings who are just siblings, as my time and energy gets increasingly limited I can only relate to those of them who I feel able to consider as friends. I compose another emails to all siblings explaining my criteria for considering somebody as a friend. I feel quite a bit better as a result of posting this.
Feeling vastly much better today, and slept much better last night than I have for a couple of weeks. Almost all the time walking has a calming effect on my mind, but when my mind is feeling seriously un-calm it doesn't get rid of the niggle-niggling going on. I realise that I'm not looking at the countryside at all, just walking along completely consumed with what's in my head.
One of my siblings says: "I can't help failing to understand why you feel such a compulsion to give this TRUE picture of your whole life..." I say in reply that being honest, speaking out, has always been a central part of who I am. All my friendships are with people who treat plain speaking, telling it as it is, as the key to meaningful relationships. Almost all of my friends are women who, like me, were part of the women's movement in the 1970s, and, like me, joined "consciousness-raising groups". I loved the experience of the one I was in - no holds barred, talking about anything and everything, pushing forward the boundaries of what it was acceptable to discuss.
Very relieved that my oldest sister has fully understood where I'm coming from and is counselling my mother accordingly. I think I may have repeated this point three times in this month's diary, but that reflects how important it is to me. My relationship with oldest sister for the first few months after diagnosis was a cause of much grief to me - she was seriously getting up my nose. All the characteristics which I don't like about her - primarily, always assuming the rightness of her judgements - combined with the very fundamental differences between our life-philosophies, to the extent that I just didn't want to relate to her at all. But now, we're back in a situation where the things which I do like and admire about her are at the forefront - her great perspicacity in analysing human relationships, her willingness to give so much of herself to relationships with friends and members of family who need support.
I have commanded Sarah to take two weeks (paid) holiday from next week. We're going to eat each other up if we don't take care, my state for past couple of weeks has put too much of a load on her, her cleaning standards have descended well below my level of tolerance and she has a ratty tone towards me almost all of the time. Poor thing when her greatest desire in life is to bring happiness and joy to people! I know we'll sort it and she quickly realised what a very good idea this is. A couple of weeks on my own will also give me the chance to see how comfortable I feel about not having a live-in carer.
I decide to go still further with pruning of my recipients list for my progress report, and write to the more "marginal" friends who are on it to tell them that from now on it will only go out to closest friends/ oldest friends/ people who I feel especially like-minded with.
Am very chuffed by receiving a generous "Oxfam Unwrapped" retirement gift from work. An extra present - a yew tree follows a few days later. I'm pleased that they have the measure of me enough to choose me the kind of presents I really appreciate.
