Post-chemo 3.4.05 - 23.4.05

April 3rd 2005:
Progress report

Dear everybody,

Here I am still able to walk and climb as well as ever - have been up to Carr Head Rocks this afternoon. Very relieved to be free from the tyranny of the chemo cycle, mostly in good spirits give or take the occasional blip and blubber, although not surprisingly - given an 8.5 cm mass which (as the last scan report describes it) is "occupying almost all of the anterior mediastinum" - the life which I enjoy is very far from normal.

My greatest disabilities are that I can't sit comfortably for any length of time, I need a rest for about 2 hours after being up and active for four hours, getting into a comfortable sleeping position is difficult, and talking a lot tires me out. Various pains come and go, especially in my neck and shoulders, but at a level which is far from excruciating and the lack of constant pain in one specific place makes it easier to handle I think. The most unpleasant physical sensation is that by the evening my body feels very tense and bloated - I would describe this as a general discomfort rather than pain, and I find it harder to address than classic pain.

But as well as being able to walk, I can meditate comfortably by leaning on a nearby gate with a wonderful view across the fields to my beloved Highlow, mow the lawn, do weeding etc. as long as I go down on a kneeling stool and don't twist around, go into some good deep relaxations during my daytime resting period, do light housework... I enjoy doing these things but need to educate family further that it actually gives me pleasure to do light tasks myself and that what they should focus their attentions on are the things I can't do myself. Daugher Sarah is my main carer (she stays here 4 nights a week - Sarah Carer and Scary Caree we call ourselves) and I have taken to inventing stories of carers I have heard of who take out a special brush from its cupboard and take the cobwebs off the ceiling above their caree's bed, etc, etc. (Sarah if you're reading - did you hear the one about the carer who cleaned caree's bath twice a week?)

I can also do (as long as I kneel rather than bend from standing) picking up slugs and snails, putting them in a bucket, and (at this point standing) pouring boiling water on them from on high. I'm afraid that I get pleasure from this - obviously I'm not a good Buddhist. I'm sure the wretched things are evolving - climbing up plants much more than they used to do. I don't remember slugs eating daffodil flowers in previous years. Feedback on the topic of suspected slug evolution welcome, bearing in mind that I already know everything contained in the mainstream and alternative slug literature about supposed ways of eliminating them.

I can't say that taken overall I feel physically fitter than whilst on chemo. I certainly feel more normal and in control of my body and mind, but pains and discomfort are probably equal although different. The particular deep weariness which I was experiencing mid-cycle in the last two rounds of chemo, and which made me feel that my body was at a level of frightenly zero resistance to stress or infection, has not been with me. Weary I've still been getting, but a more familiar washed-out weariness which doesn't contain the same element of scariness.

The weeks since last progress report have brought the usual spate of occurrences worthy of note with regard to the NHS, despite the lack of chemo cameos to focus on. It is routine practice for the hospital docs to send an update letter to the GP after every hospital appointment, and they asked whether I would wish to be sent copies of these letters, to which of course I said yes. Here is the email exchange which took place with my consultant after receiving the last such letter:

" Dear Docs,
Am a bit puzzled by letter sent to my GP dated 10 March 2005 which I received 19th March. It states that "there was an abnormality identified with the liver". This is the first I knew of this - indeed, I had understood at my appointment on 10th March that the results of the CT scan showed no abnormality of the liver. Please could you clarify whether this is a typo in the letter or a misunderstanding on my part? ...

On a more trivial note, the 2nd sentence of your letter states that Miss Kingston "has had a long thing about her treatment options..." I imagine this was a typo for "a long think", and not an implication that I have irrational bees in my bonnet about treatment options! Now I do have "a thing" about letters not being proofread before they're posted..."

To which the reply I got was:" This is [the stand in doc who I saw]'s letter so I've asked her to respond. However they are both typos - it is NO abnormality in the liver and long THINK. My secretary doesn't seem to listen to what she types unfortunately."

A correcting letter was sent promptly by doctor to my GP but in terms of good practice I remain somewhat disturbed that the secretary and not the person who signs the letter should be held responsible for checking that the content is not plain wrong!

The other health service topics of the moment are analgesics, "aids for disabled" and Macmillan nurses, plus a possibly sinister relationship between these three factors. I told my GP before Easter that I could do with such things as v-shaped back supports so I can sleep in a position halfway between on my back and on my side without getting backache. She said she would ask the Macmillan nurse to get in touch. Which she did after Easter. When I told her my problem she said "You'll have to be assessed by Occupational Therapy. I'm afraid they have a long waiting list but I'll get you put on it." No attempt whatsoever to make any interim suggestions as to what I could do to get myself more comfortable, even though she knows I'm "a terminal". Just a classic touchy-feely platitude "You don't know where to put yourself I expect".

The next day the GP comes on her regular fortnightly visit, and I talk again about the discomforts of sitting and getting to sleep. To which her response is "I think you're too reluctant to take analgesics." (I just take 3 maximum strength Cuprofen a day, which is beneficial for its anti-inflammatory effect as much or more than for pain relief. Then the very occasional co-codamol if my alternative pain management techniques (meditation, moving around, &c) aren't sufficient.) "I'm going to prescribe you something to make sure the Cuprofen doesn't give you stomach ulcers, I want you to take much more Co-Codamol, so I'm prescribing you something else too because the Co-Codamol is likely to make you constipated." I point out that I would expect back support while sleeping plus perhaps a kneeling chair to sit on to be the first lines of attack. And that once again on this occasion I just couldn't see what the point of a Macmillan nurse was - she just seemed to be adding an extra layer to the proceedings which slowed down the process of getting these needs met. My GP then said "OK I'll get the surgery district nurse to see you - we do have a lot of appliances in stock". At which point she entered into an explanation that their chief district nurse was leaving and there was likely to be a considerable delay before replacement, and as a result they were having to put in place a much heavier reliance on Macmillan nurses, which was why she'd referred me to them.

I think that increasingly over the past years, Macmillan nurses have been drawn into "partnership" within the NHS, working alongside NHS-funded staff both in hospitals and community. What could be more logical in cost terms to the NHS, than to now start substituting charity-funded Macmillan nurses for NHS-funded staff? And in the interim turmoil, let's just have a blanket reliance on pumping patients full of analgesics as a substitute for individual assessment of best strategies for handling pain?

Anyway, as and when either pain gets excruciating or the tender bloated feeling unbearable, I will move without hesitation to opiates or whatever. I see no point in suffering serious pain or discomfort. Not how I'd feel if having to live with chronic pain on an ongoing basis - the idea of a long-term permanently fuzzed mind would be as unacceptable to me as it is to my old chum who's in this situation.

Last week Ian (my son) and myself walked the same route but in the opposite direction as was followed in the morning part of the MAP walk, and when we came down by the side of Highlow we decided to do a trespass and climb to top. A lad, presumably farmer's son, was up there scrambling on a motorbike, and evidently rang dad on mobile to alert him to trespassers - anyway farmer zoomed over fields to us on his quad bike. "Are you lost?", he says - the question polite farmers ask, as opposed to what the xxx are you doing on my land. Honestly no, I say, I just want to climb this hill before I pop my clogs. I conveniently am walking sans headscarf. Go on then he says, nodding his head in the direction of Highlow with a kindly smile. I thanked him most sincerely and I think he then told his son to stay off scrambling for a while. So, up we went.

Poor wounded hill (where in truth I have trespassed a couple of times before but not been challenged) - it's all lumps and bumps on top presumably from its use as a bole hill for lead smelting in C18 on top of whatever prehistoric burials it owes the "low" part of its name to. And now, no doubt as a result of the advent of the quad bike, it's being used to dump farmer's rubbish in the craters (boles). Anyway its combination of woundedness with magnificence have made me still fonder of it. And the views from the top are superb - 360 degrees like Carr Head Rocks but taking in limestone scenery as well as the millstone grit.

Hair is beginning to grow back on my head - jury still out on whether it's going to be brown or white. Also unfortunately resprouting on my legs in time for summer - there is certainly nothing to compare with chemo in depilatory terms as regards the number of weeks your skin remains smooth and soft. And no more painful than waxing one might contend.

Enough topics covered I hope to ensure a fully and jolly mailbox for me over the next few days and weeks. I have started putting together stuff I've written up to now in coherent format to shove on my website but I can only do small amounts at a time and won't upload any of it quite yet. It can be a bit harrowing going back over old hopes and optimisms. But I still want to do it. Provided my fitness stays at something approaching the same level as the past three weeks, I'm aiming to get it done over the coming three weeks or so, round about which time I hope that I will be once again sending out a progress report.

04 Apr 2005

I tell a friend who suggests I should get myself off on a trip to Hvar: I really don't want to travel anywhere - the idea of travelling and all that sitting down on the journey, nowhere to lie down when it's my rest time, strange beds etc much much too daunting. I feel my life is on a tightrope which it could easily get pushed off.

Work is one thing I'm definitely not missing in the slightest. Particularly glad not to feel I have to bog down my mind in coming to grips with a mass of restructuring issues. Gossip, on the other hand, is welcome!

Very pleased that the sponsored walk in aid of MAP has raised over £1000. It's got its advantages, being a terminal.

06 Apr 2005

It's fantastic how you can make symptoms disappear by "obsessing" about something - yesterday morning I was feeling so cross with Macmillan nurses that I did just this, sitting down at the PC for two hours non-stop writing a "piece" about the hospital experience which so much set me against them in the first place. No senses of pain or discomfort were felt for the duration. Not quite finished, but I'm rather pleased with it. I always find that writing is best therapy if there's an issue niggling away at me.

Tomorrow an occupational therapist from the local hospice is coming to see me. This is following a visit from the surgery district nurse on Monday. Who was very nice, and understood my need to have ongoing functional support provided by somebody who related comfortably to oddballs. I hope this occupational therapist will fit the bill and it makes a lot of sense I think at this stage if it also can be an automatic way in to a hospice if/when I need it. It also seems to be a logical base from which Sarah could be offered support.

My Putnams pillow has just arrived and makes a lot of difference to giving my neck and shoulder comfortable support. Have also ordered a kneeling chair - keeping my back straight seems very crucial. It would have made *so* much more sense if I had been advised to buy such things two weeks ago instead of being unsuccessfully sent round the houses to loan them!

My Putnams pillow has been my first sortie into shopping online, which obviously I'll have to get accustomed to doing all the time. (Not that I'm much of a shopper.) I was irritated to waste time entering details for an order and then was asked for a card verification code and the order was thrown out because I don't know what this is. When I click on the link for information about "what is a card verification code" I just get the invalid order message with no explanation.

This is another occasion when I'm more than ready to milk being a terminal. I write to the stores "Please could you correct your web page so that people like myself with terminal illnesses are at least spared such frustrations when the process of purchasing equipment is to make life easier." And promptly get a most apologetic reply. I ask my son Ian to write and say how much this was appreciated:

My Mum asked me to reply to your mail, to thank you for your very excellent response to the problems she experienced yesterday when ordering from your site. As a Customer Service Manager myself, it is wonderful to receive such a response from a director, written in the same detailed and friendly fashion I believe is essential - Your response is an example of great customer service and made my Mum very pleased. Furthermore, it is clear to see that a response like this turns an unhappy customer into someone that, provided the order arrives as expected, will bestow praises upon your company with every given opportunity. If only some Customer Services Teams and their directors acknowledged the benefits of the same approach!

Lots of impassioned responses to my Progress Report on the subject of slugs.

I tell Roy that I think the days of sex are probably over. Body feels very tender and sensitive, as if a touch of the tit would jigger right through me ... hard to describe.

07 Apr 2005

I am being very strict with people who want to come out walking with me. Having tried ways of twizzling my routine in various directions, e.g. morning instead of afternoon walks, I find that all variations result in a much less enjoyable and physically comfortable day for me. I do hate hate hate making arrangements with busy people - the process so often turns into thoroughly confusing shufflings and reshufflings!

Lots of friends recommend the Cavendish, which is a complementary therapies place in Sheffield where all terminals can claim free treatment. But the discomfort of travelling to Sheffield is not worth the benefits and they don't do home-based services. However my Sarah does a perfectly good massage. I explain to one friend: Have tried what's on offer from a charity offering similar services to Cavendish in Hope Valley but when I ask for a counsellor, I get a healer ringing me up "I think I can help you." When I ask again for a counsellor, I get a hypnotherapist ringing me up "I think I can help you". I openmindedly tried both but as I anticipated they weren't what I wanted. And now I don't think I could be bothered with starting up a relationship with a counsellor anyway. I also just don't want to spend my precious time trying out the x number of helpful suggestions or links to follow up which are provided by friends. It would give me absolutely no time to think my own thoughts and develop my own ways of handling things which I feel I'm doing pretty well at!

On the other hand I do like friends getting back to me with answers to specific problems I have raised - since the last progress report the suggestions and offers I've had for back support to get into a comfortable sleeping position have been great to receive...

09 Apr 2005

Before it's too late, I send my mother a photo of me with no hair, as she has said she wanted one! I copy it to my siblings while I'm about it.

11 Apr 2005

I've decided to try and give my voice a complete rest for two days (Monday and Tuesday). I have had a bit of a cold, on top of which having visits from Seb on Fri, Roy for weekend, friend Sarah on Sunday afternoon, meant that I have plain and simply been doing far too much talking. By yesterday evening I was feeling generally whacked, with the specific symptom of talking becoming a very unpleasant sensation as well as being tiring - it sets up a kind of "vibration" feeling in my neck which is plain horrible.

I decide it would be useful for them to have it on paper for reference, so I send the family a detailed account of my daily Routine.

The occupational therapist from the hospice came today, was very helpful and very much agreed with me that the key thing in my case is to keep my back straight at all times. She provided roughly the kind of back support wedge I need for sleeping, but it's a bit unwieldy for my purposes. She was very impressed by how good my breathing is, and interested that I breathe up and down from my belly all the time, rather than in and out from my chest.

Reading over the past couple of weeks includes: autobiographies of Dalai Lama, and Palden Gyatso, the Tibetan monk who was imprisoned for 30 years; Eric Hobsbawm's autobiography, "Interesting Times" (he's an eminent and elderly Marxist historian); and in complete contrast to that, Claire Rayner's autobiography. All of these greatly enjoyed. I have a great admiration for Claire Rayner, and sometimes wonder if she did more to liberate family and sexual relationships than all of the women's movement put together. She really is delightfully forthright and a mistress of the witty aside. An example from describing her nursing training at Royal Northern Hospital: "RNH has always trained nursing nuns, ready to be sent out to Africa to meddle with people's beliefs while treating their bodily ills".

12 Apr 2005

I email my youngest sister to thank her for yet another bunch of virtual flowers in the form of a donation to MAP. I tell her: Nobody has commented on pic of me with bald pate! Is this because the effect of the jpg compression algorithm has been to make it look as if an embarrassingly black moustache is growing?? In reality it's no more prominent than hitherto, or so the mirror and my best friends tell me.

Having told Roy before he came at the weekend that I thought the days of sex were over, he had the perspicacity not to quite believe me and the hospice wedge proved to have a definite role. This was entirely hygienic in terms of wedge placement. Sarah gets very annoyed with me when I make such comments to her - even for today's generation, parents aren't meant to be sexual beings.

It's a beautiful day here, have walked yet again up to Carr Head Rocks and am feeling remarkably fit give or take the fact that if my expectations were that I should be feeling normal, I would be rushing to the doctor or calling an ambulance. But the weird sensations in the body aren't actual pain, which really I only get in very small doses - although I think the sensations would be perceived as pain if you let yourself be scared by them.

13 Apr 2005

Thinking about it, I realise that the Occupational Health therapist from the hospice was the first person to understand that I breathe as my norm up and down from my belly rather than in and out from my chest and to conclude that maintaining the space between ribs and diaphragm (i.e. keeping my back straight) is therefore the crucial thing for my comfort. She was actually rather impressed with my breathing - and it's true to say that if I do breathe in and out from my chest, I get to feel breathless and also rather nauseous quite rapidly.

They're very keen on home deaths these days - "hospice at home". I feel a bit uncertain about this. I want this house to be left with happy memories of me not risk it being haunted with horrible memories of my final moments. And I'm not even sure I want anybody at all at my deathbed but this is probably too radical for Sarah and Ian to take! Whatever, hospice-based support makes sense to me - i.e. expect not fear the hospice role.

However, in the meantime I'm still able to walk. Most fortunate of people that I am. It's the talking that knackers and also sometimes suddenly gives rise to a most unpleasant vibrating sensation in my neck. I just have to stop dead mid-sentence when that happens.

15 Apr 2005

I now have a nice soft although stubbly-looking coating of hair on my head and it's definitely mostly brown. Brave old body not going white from the chemo. Feeling remarkably fit give or take the odd bodily sensations.

Have been for some very splendid walks including up on Stanage yesterday.

18 Apr 2005

Am trying to concentrate quality computing time (i.e. an hour or if lucky two in the morning when my brain is best and I can sit more comfortably than later in the day) on getting all the stuff I've written to date in a coherent format - hence neglecting mailbox somewhat at the moment.

19 Apr 2005

My life seems very much like that of an old person, with my beloved daily Routines and my little events of the week like the mobile library and the W.I. market.

Strange sensations continue but so far being remarkably successful in not worrying about them. Wherever possible I think to myself that I've had such sensations before (whether since diagnosis or in earlier life) and I'm still here, so what's the point of worrying that they might be something different and horrible connected to the cancer. That could well prove to be the case, but so what in the here and now?

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