Living with growth: 30.06.05 - 31.07.05

30th June 2005
Progress report

Dear everybody,

I nearly decided to abandon my self-imposed commitment to write a progress report 3-weeklyish, but eventually a sense of the need to keep up disciplines has won over. So here I am still, gradually adjusting to the notion that I probably won't be dead as soon as initial prognoses suggested. My fitness is still remarkably good and enjoyment of life still high most of the time. The horse flies find me excessively tasty which is quite a nuisance, but sun has been delightful all the same.

Whilst fitness is holding up in terms of walking etc., I have to admit to thinking there's some underlying deterioration going on, or mass has been having a bit of a growth spurt or something. Pain has been rearing itself above the level of the slow-release morphine sulphate a good deal more often than one would wish over the past couple of weeks. I'm resigning myself to having to ramp up my dose a bit.

One result of the increased life expectancy estimates is that my expectations as to how I'll actually pop my clogs, have shifted from assuming that pressure of the mass will result in sudden event such as a heart attack or stroke, to anticipating instead a (relatively) slow deterioration. Which feels like a very different prospect. Probably much harder to maintain a superhero persona I suspect, but we shall see...

Next time I report will be after I've had another visit to hospital and x-ray so will know then whether or to what extent mass has been gaining ground.

My routine has continued more or less exactly as previously described so almost by definition and design, nothing exciting happens. Except that the garden grows and the hills change colour and soon there will be the wonderful smell of heather in the air. Sorting out money and admin things has consumed all the "brainwork" part of my days over the past few weeks and I'm more than ready to leave this phase behind me. It takes away the energy to write creatively, and niggles at my mind making it much harder to feel calm and peaceful.

Having asked the Human Resources dept to progress my ill-health retirement, I had my visit from the Occupational Health doctor, which I found rather a puzzling experience. I gave him copies of my biopsy report and post-chemo scan report to supply the dismal factual detail. He took a quick glance, and then started off by asking me "What outcome was I hoping for from this meeting?" This left me sitting there in a state of confusion. 56, diagnosed with a terminal cancer, on an optimistic basis the docs don't give me more than a couple of years, and that's based on me living a very restricted invalid life. No other "outcome" except early retirement was/is conceivable to me.

So, having started in this vein he asked me questions about my level of health/fitness (not one and the same thing, as I pointed out to him). He said that he would be recommending ill-health retirement and that to make the case he would particularly emphasise my levels of fatigue. (I was surprised that he didn't see the main emphasis as being my terminal state.) But, he said, I shouldn't be taking it for granted that I would get early retirement. At which I was utterly amazed, and told him so. He said I would receive a copy of his report in a few days but a fortnight has gone by and it's beginning to niggle me. Could they really, seriously, deny me early retirement?! With that place, perhaps anything is possible...

That's it, time for my walk.

03 Jul 2005

I get a very endearing email from old work chum PK which reads a bit like a funeral oration!:

"Dear Jos, I really should have sent you a message before, but I've never really known how to say what I wanted to say. I'm not as good with words as you. I've felt bad about it, but that's my failure, so bear with me if this message sounds clumsy or awkward.

I always believe I should tell people what I think about them ... so what do I think about you? Well you're open and honest and uncompromisingly say what you feel ... which can be challenging sometimes ... but I respect those values. And I've always found you to be immensely rewarding to work with, precisely because of those qualities, and also because you are committed, you do what you say you will do, and you do it well. (Which couldn't be said for some of my colleagues). And you are warm and generous and huggable. (I always want to give you a hug whenever I see you).

I've been really pleased to read about your walks, and to learn that your prognosis was better than it seemed at first. I have found your messages to be variously inspiring, profound, amusing and moving. Sometimes I've laughed whilst reading them, and sometimes I've cried. But they are always wonderful messages. I think they would even be inspiring for people who don't know you."

A lot of time being spent over past few days in emails between myself, my mother and oldest sister, who are worried that sister Susan is too close to a manic state for it to be a good idea for her to proceed with proposed visit to me. I tell them that they really shouldn't be spending time being "terribly worried about whether they should write anything at all to me", as a call to Sarah could have quickly reassured them. I tell them that I certainly don't intend to ask Susan to postpone her visit. If I was her I'd find it pretty undermining if I overrode what she's said to me, purely on the basis of secondhand judgements from other members of the family. I feel pretty confident that she will realise for herself if she's too overwrought for it to be a good idea for her to come to Hathersage and Sarah will be around to deal with things if Susan makes an error of judgement on this.

I tell Susan: Please don't feel it's a requirement that you have achieved a 100% zenlike state of calmness before you visit me. You will be greatly welcomed unless you were at the level where you're hearing voices, sleepless for nights on end, or vandalising Pollutas. (Is there anything else you think I should have on the list?!) I liked "Pollutas" mind you! You can count on me to give a sympathetic ear to your militant anti-car stance even though I don't want my neighbour's cars to be scratched or spat at.

It is fact that Susan is the sibling who I have by far the strongest desire to see in the flesh!

04 Jul 2005

I am feeling quite good - last few days no real trouble from pain and it is so nice to have the time to potter enough in the garden to feel quite on top of it.

I take up again with my youngest sister having said: " the trouble with e mail is that I just do not know how to start as whatever I start with seems riddled with platitudes and potentially annoying things." I say: Don't you find exactly the same problem with starting letters as with starting emails? And that telephone calls can also go just that way? My difficulty is with closing salutations and what's appropriate. I was finding myself on a number of occasions wasting 10 minutes or so cogitating whether this was one for "love", or "best wishes"; "love", or "lots of love" etc. I decided "sod this, just go with what comes immediately into my head".

05 Jul 2005

Another bunch of virtual flowers from youngest sister. Will now pick myself a nice bunch of sweet peas etc from garden and whenever I look at them think how much I appreciate gestures of support from friends and family in the form of donations to MAP.

Today it's relentlessly pouring and I haven't been for my walk yet - no companion available and thought it might be foolish to go out on my own when it was that bad. But it's easing off a bit now and so I'll get out for at least an hour by hook or by crook. It would be the first day of not doing so if I copped out. And am not feeling too bad, so no excuse.

My problem with phones is getting still worse. Can't think fast enough "on the fly" for anything involving arrangements or differences of opinion. Find it very hard to do admin type things on the phone - zero tolerance of menus and call queues and musak and repeating the same information over and over again and being passed around from pillar to post. Menus in particular seem to have got unbelievable in the levels of "nesting" they go down to. The other day spent 10 mins getting to the right place in BT menu (i.e. to speak to a human) and promptly got cut off as soon as the system said "we are connecting you to an operator". Such little things become the stuff of which news is made when one's life is so constricted. I feel I'm becoming like my mother in that respect.

Have been much more pain free past few days and so haven't had to up my morphine intake on a routine level yet. I think there's a correlation which I don't quite want to believe, between sleeping with the window open and onset of pain in the shoulders (just one of the many and varied pain options currently on offer, but probably the commonest). Anyway I have been sleeping with the window closed much as I don't like to and much as it increases the sweating problem - worth it if it prevents the pain.

06 Jul 2005

I write a cross letter to B & Q Customer Services:

Re: Canterbury range of furniture.
I have recently purchased from your Sheffield store the Canterbury gateleg table and four folding armchairs at a total cost of £650. I did a good deal of homework before deciding what garden furniture to purchase and had decided that my first priority was to purchase only furniture made from wood which was properly FSC-certified. My understanding is that only FSC certification (as opposed to "plantation certified" or "TFT") is approved by environmental organisations such as Greenpeace.

I selected the Canterbury range from your brochure because it carried the FSC kitemark. There is no mention anywhere that I can find in your brochure to suggest that this means anything other than that all wood used is FSC certified.

The furniture having been delivered a couple of weeks ago, it was only yesterday that I noticed that the product information which came with the furniture described it as "70% FSC Certified", not 100% as your brochure would lead the customer to believe.

I consider it highly unsatisfactory, as a customer who always shops with ethical issues as a top priority, that B&Q should pull the wool over customer eyes in this way. I am not at all happy that I have ended up in possession of garden furniture one-third of which may consist of wood from wholly uncertified, environmentally-irresponsible sources.

I look forward to your prompt reply and constructive suggestions to resolve this matter.

I also email Greenpeace to draw attention to this issue.

07 Jul 2005

A further sortie into "Disgusted of Tunbridge Wells" territory - although I think I will go for the more positive "Hopeful of Hathersage" as my nom de plume. Today it's an email addressed to Ramblers Association, and entitled "Why I have decided to lapse my RA membership". It says:

Dear RA,
I recently received a letter from Nick Barrett stating that it would be helpful to know why I have lapsed my membership.

When I joined the RA in 2003, I did so because it appeared at that time that the RA was committing itself to a high campaigning profile against motorised offroad vehicles. In my view and that of the vast majority - indeed all - of the ramblers who I know and walk with, this is the issue which is of overwhelming concern to those who value the peaceful enjoyment of the countryside and who care about the protection of the environment.

Over the past two years, instead of developing and taking forward the campaign against motorised offroad users which was initially ushered in by yourselves with great fanfares, you appear to have abandoned the issue entirely. There is now nothing on your website to suggest that any such campaign any longer exists. It appears that even in your discussion forums the topic of offroad vehicles is banned. (It would be perfectly possible to permit a discussion thread about successful campaigning tactics against offroaders, without accepting postings from the offroad lobby.)

At a local level too, Sheffield Ramblers Association appears to have sold itself out to the "consensus" strategy which is being promoted by the Peak Park Authority. For RA members to take this line and at the same time to portray themselves on official bodies such as Local Access Forums as "representative" of the rambling community, is nothing short of a disgrace. To anybody with any intelligence, it is evident that a consensus is simply not possible between motorised offroaders and those who care about the environment and peaceful enjoyment of the countryside. What is needed is an uncompromising campaign to promote Traffic Regulation Orders at the very least in all National Parks and other areas of outstanding natural beauty.

By ignoring the concerns of the overwhelming majority of ramblers, the RA at both a local and national level is seriously losing the respect of the rambling community, and rightly so.

I hope this explains sufficiently why I am no longer a member of the RA and have no intention of rejoining in the foreseeable future.

10 Jul 2005

I decide the time has come to extend the range of friends who I walk with, so am writing a lot of emails to make arrangements. Have become very non-negotiable about only being available in the afternoon.

12 Jul 2005

Still not heard from work about ill-health retirement - two months now since I asked for process to be initiated. I'm sure it won't be a problem and the issue is that the doctor was a stupid wally to plant unnecessary anxieties in my mind, well let's hope that's the correct interpretation anyway.

I think I'm just about getting used to a shifted perspective with regard to life expectancy although it worries me that it might be a lot harder for me when I do lose my fitness, I feel I have to be very guarded. But notwithstanding it's a joy to get this unexpected period of thoroughly enjoying life (well mostly).

14 Jul 2005

Have had my sister Susan staying for the past couple of days, high and clearly on the verge of a manic but just, just managing to keep the lid on. She has been sleeping well which is good. She is trying very hard not to be too nutty. Giving her tasks such as picking raspberries has proved a handy ploy. And she's been enjoying the walking.

15 Jul 2005

Susan has been dispatched to my youngest sister in Sussex, where she's looking forward to seeing old friends and haunts from Lewes. It's evidently tempting and seductive to her in some kind of a way to just let go and indulge in a "high". But, she's being responsive to reminders that she really wants to hold on and keep it together.

16 Jul 2005

A friend tells me "I have also had a pretty negative experience with my employer's occupational therapist. Firstly, he doesn't believe in ME, so despite the fact that I had been diagnosed by a consultant as having a M. E. he diagnosed me as having Menieres syndrome, bizarrely. He also pushed me to consider doing plenty of exercise, despite the fact that this is certainly not what you are supposed to do when you have M. E. He was so arrogant it made my blood boil, and a fellow colleague of mine had a very similar experience with him. However my employer told me to scrap what he had written and they ignored it because I complained so vociferously. It really is quite outrageous that they have sent an occupational therapist to see you anyway, I would have thought your consultant's diagnosis was enough information on its own.

I'm feeling pleased it's now "mission accomplished" in terms of Susan and I having seen each other. I was surprised by how important it was to me.

Beautiful weather here - the heat is Mediterranean and I'm so pleased to get a bash of it on my doorstep when I can't conceivably swan off to Greece or wherever.

18 Jul 2005

I've had to go on antibiotics for a bit of a chest infection and temperature, plus I've now got to go to hospital Wednesday for a scan which is quite a wearing procedure. The combination of the two has made me decide that I can't cope with plans for Susan to come back her for another couple of days on her return journey to Orkney.

I tell my mother: Please, please don't respond with worries and anxieties about my health. I have a terminal cancer. I am going to die in the not-too-distant future. Therefore I have health problems on the way as one would expect. I have to endure "procedures" and investigations as one would expect. Beyond what I report to everybody in progress reports, I just don't want to enter into any discussion of the blow-by-blow details - I'm very successful at keeping them out of my mind and don't want other people forcing me to discuss them.

22 July 2005

I'm starting to get very exasperated with Human Resources because they either don't realise, or deliberately refuse to acknowledge, that it's my entitlement to see the medical report written by the Occupational Health doctor before it goes to the pensions people. I email the pensions people to check with them, and they promptly confirm that I'm right, I am entitled to see it.

24 Jul 2005

I email my incapacitated chum to whinge about being in miserable mode. I tell her: Reached a little crisis with going freezing cold and weepy at the same time and thought discipline yourself Jos, at least mail you. However, I'm going to have to get into bed now because I'm very shivery so I hope tomorrow morning I'll be able to get my act together. Is it a full moon or something???

Went out walking despite heavy rain incessantly all day - have recently bought some very excellent waterproof trousers so I don't think that's the cause of the shiveriness.

25 Jul 2005

I have an appointment with the consultant next Thursday and decide to email her in advance with my agenda items:

1. Risk/chances of sudden death. I have a preoccupation with the possibility that due to pressure of the mass on vital organs my demise will happen as a result of a sudden event. If this is high risk, then I feel it's important that Sarah is properly prepared and supported to deal with it. I'm anxious that there could be a lot of blood or my face going purple or other such frightening and distressing things. I have friends and neighbours in the village who are accustomed to such happenings and who, if this is a strong possibility, I would want to ask whether they would feel OK to be on call for Sarah if/when this happened.

2. If you have received the scan results before Thursday then it would suit me best to be told in advance by email what they are - especially if you were going to recommend any treatment as a result. I am prepared for the possibility that the mass will have grown, and/or that nasty things are happening in rhs of neck.

3. This doesn't need discussing or replying to at all: I think you should entertain the possibility that you're wrong to advocate Movicol universally for everybody on opiates!

I have just planted out some verbena and made a cup of tea. What right have I got to be pathetic when I'm able to do such things. I tell my incapacitated chum that like her I do very often lose count of day of week and date, but I think I feel OK about that happening. Although I do sometimes feel guilty about only sporadically taking any note of what's going on in the outside world.

I get quite scared of how emotionally dependent I am on Sarah, sometimes I just so badly want her to get back on Monday and find it very hard to handle if she's not out here in time to cook my tea and relate to me a little bit before I go to my bed. I'm also scared of what I may be letting her in for - especially as a result of my anxieties about a sudden and bloody death.

I have very much enjoyed a visit from my old chum Nettie. She has had years of depression and a lot of physical illness too, but now is much happier than she has been for years, she says all because she's now able just to enjoy her Routine even though it's objectively very boring. The only thing she feels she has to do which she doesn't enjoy is visits to her mother, who always asks "So what's your news" but of course she never has any news, because nothing ever happens...

27 Jul 2005

My incapacitated chum writes: "Talking to people who don't know me well is really quite difficult, because of their expectations of my participation to some degree in "normal" everyday activities, such as holidays / doing......../going to see.....(fill in gap as you wish!) I agree with your friend that Routine can act as a balm to the soul, since it obviates any necessity of thinking, planning or thinking about the fact that you have nothing to plan for. I usually find my routine quite satisfying, as you know, with only occasional periods when it can't seem to lull me into a state of pleasant pottering."

Somewhat miffed with my Union secretary because I'd asked him the question about entitlements to see medical report at the same time as I'd asked the pensions people. His response was to ignore the question and jump in to chase up HR on my behalf without having had any briefing from me. This whole ill-health retirement procedure is beginning to exasperate me enormously and consumes far too much of my thoughts.

28 Jul 2005

I email sister Susan to tell her how happy I am that she made the trip down south, and that I think she should see it as a great triumph on her part that she managed to keep the lid on letting go into a high and be proud of herself.

She has taken some excellent photos, especially one of me and Ian. I allay her anxieties that she was verging too close on manic to be good company: Actually I found it very interesting, especially because I was comparing it with my steroids hypers during chemo. I found then that my mind was casting around for things to get wound up about. And that seemed very parallel to you going off into indignant querulous mode about benefits issues etc. - i.e. as a prerequisite for letting yourself go into high mode, you need to hook on to something to get you into a suitably aggrieved and angry state. So what do you think of that theory?!

I'm off for my hospital appointment today, and tell her: News on outcome of hospital visit will not be released until I write my general progress report. I just don't want to talk about these things one-by-one to different people. And I just don't have this perception of waiting for scan results etc. as a kind of "cliff-hanger" where it's desperately important to have the news as soon as it's available. I have a cancer which they say they have no hope of curing. Therefore I expect it to grow, and I expect to get other symptoms setting in. It's all just par for the course. I hope that makes a bit of sense to you - have been trying to explain this point to mother and she says she understands but I'm not 100% certain this is true.

30 Jul 2005

I have received a circular about inconvenient stiles from the Ramblers Association, sent out to Local Access Forum members. (I resigned from this when I was diagnosed.) I email the Parish Council Footpaths Officer to suggest we conduct a stiles survey in Hathersage. This would be something which I could usefully be mixing with walking.

31 Jul 2005

I have been having a hard time with my Union's call centre trying to claim the 30 minutes free legal advice which is on offer to all members. The call centre is most unhelpful when I ask whether I could have this advice by email rather than telephone. I send an email to the union saying: I am hoping to receive 30 minutes free legal advice on a straightforward property transfer issue which I need to sort out as soon as possible. However, I have a large tumour filling most of my chest cavity which has been diagnosed as a terminal cancer. As a result of this, I am unable to use the telephone for more than very brief conversations - talking is tiring and painful, and I can't think "on the fly". Therefore I would like to receive this advice by email. I was advised by the Call Centre that this service is only offered by telephone.

I feel that this is a disability discrimation issue which could apply to other seriously ill members like myself, as well as to members with hearing or speech difficulties. I would be most disappointed and dissatisfied if Unison is not able to negotiate alternative email arrangements for me.

Pleasingly, this gets a very prompt response with an email from the solicitor the following day.

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