Letter from the North

Poo, of course, but dying is looming large – 10, 17-Nov-2018

There some nice things that happen and a Burli on your lap is one.

Burlington has this knack of laying down to sleep and instantly looking cute. I have never seen him not look cute when asleep (and he does that a lot). The other cats can look cute when asleep, Burli does it always.

Sat 10-Nov-2018   

Recovering from last week (in London), achieving nothing really 

Sun 11-Nov-2018   

Recovering from last week, achieving nothing really 

Mon 12-Nov-2018   

Recovering from last week, achieving nothing really. 

Yes, that’s 4 days of recovery for 3 days away, that’s a high price to pay! 

Been “constipated most of the weekend so I tried an experiment based on what happened last week on the course when I deliberately ate a few grapes (and slices of cucumber). 

At 5pm I had a handful of grapes, by 5:20pm (ish), a full clean-out, constipation no more. I think this is a pretty clear cause and effect. Works a hell of a lot better than Senna (laxative) type drugs, albeit rather rapidly, however it does confirm that eating fruit is a “challenge” and that has health impacts. 

Why do I have to experiment on my own body? Answer, because nobody else will 🙂  

Tue 13-Nov-2018   

At work today 

No poo, worrying about constipation and then this evening, 24hrs after the grape test, normally “movement”, first time for a long time that poo has held together! Too much detail says Teresa, wonderful result I say! 

Wed 14-Nov-2018   

Rachael Bland: Husband of BBC presenter reveals son’s words after her death, an interesting article on the BBC news web site, not for the title, though it does reflect just how much is left behind after the person with cancer dies, it also reflects a concern of mine that “peacefully slipped away with family at bedside” is not always an accurate summary of how crap dying actually is, both for the individual and for those around them. 

Teresa is not super woman and it may well become necessary to bundle me into a nursing home. I suspect she will hate doing it, but I will insist because it can be REALLY tough handling those last days and I’d rather she visited me than slaved over me. 

I will keep posting these sorts of articles, not for any other reason other than I think it’s important to understand, that discussion of the last days and more to the point the after days matters because: 

  1. We just don’t talk enough and openly enough about all the aspects of cancer, e.g. “died peacefully” may not be how it turns out and often isn’t. 
  2. Those that are left behind have to live their rest of their lives with that cancer, it is part of them, the person that has died, whatever you believe, is past cancer, their loved ones never will be because it happened and it touched their lives. 

Thu 15-Nov-2018   

DSA (Disabled Student Allowance) assessment, seemed to go well, need to see if the DSA approve the assessor’s conclusion. Main thing is that DSA does not support increased costs incurred by needing a carer (Teresa) to accompany you on training. Particularly if at a distance and complicated (like London or Sheffield), but … 

Started to feel “poorly” by the time we got back from Penryn (assessment at Falmouth University a short distance from where I work!) and I really didn’t feel up to much when I got home – nap time! 

Late in the afternoon I tried to do an Email to my Autism course supervisor, Teresa found it confusing (which it was) so I need to find a way to rewrite it.  

Crashed out 

Fri 16-Nov-2018   

I REALLY feel washed out and I’m not going to get any work done today, however, I had a course deadline so I dragged myself into my office and I re-worked the Email, Teresa approved and I sent it to supervisor, she approved my title. 

Teresa was in town for a Litfest thing at 5pm today and wanted Fish and Chips from Frasers, her favourite shop for the aforesaid comestible, partly I think because they usually have Hake, her favourite fish from such places. She tried last week but storms closed the prom! 

My haddock was “pleasant” not good as it would usually be but neither was it cardboard as it has been for the last six months. My taste buds are better than they were at their worst but nowhere close to being OK. The chips WERE like cardboard!!! 

Postscript 

Whilst death itself may be “peaceful”, dying sure as hell is NOT, I don’t feel at all peaceful, maybe I should, well that’s a point of view, but not for me! 

WEEK 2 

Sat 17-Nov-2018   

Still feeling washed out, however I got in wood (for the wood burner, prob 4 days worth and then struggled to do anything further, so, I listened to some of the lectures, which had been recorded. This time the the lecturer did the recording for everyone, but I am also allowed to do.

Slept and struggled to wake up, just wanted to lay back down 

Sun 18-Nov-2018   

Awake 6am, up 6:30am, in office 7:30am 

Released first double blog to try and catch up on outstanding entries (this one you are reading, should be the last one, so that’s 6 blogs in 1 week, I suspect reader overload 🙂 . 

11am, wiped out just getting that done and that was two blogs that had already been heavily edited, one by Teresa 

This assignment worries me plus job work, I can’t seem to get my head out of bed and energy levels are somewhere below zero 

Teresa made a chicken leak and potatoe dish, had it before, excellent, however having had diarrhea during the day, I could feel my buttocks clench at the impact of the meal so I took a precautionary Loperamide. Well it worked but … 

Mon 19-Nov-2018   

The next day my body is still in poo denial but my “tummy” (actually “gut”) is starting to feel sore, which is a sure sign that it wants to but not quite got itself together, I hate this stage which is often the result of a precautionary Loperamide 🙁 . 

Had a good night’s sleep till 3am and a rubbish one from then, I feel totally wiped out, wish I knew why. 

So, another wiped out day, despite having to book two days sick after being in London the week before, I am going to have to do the same for Friday and Monday this week and hope that if I am sensible that I can get myself together enough to go into work on Tuesday and TRY to get some paid for work done before I lose my job! 

Interesting article: Hospital noise levels growing worse, say researchers I find that not only is this the case (having laid in casualty for hours whilst having the most awful news given to me), as an autistic noise sensitivity, nobody even considered the extra stress imposed on autistics by the noise, lights, … 

Tue 20-Nov-2018   

Went into the office, albeit almost didn’t as I felt so washed out, I left earlier than usual and came home and crashed out, I have no real memory of the rest of the day, whatever is going on has really washed me out. 

Wed 21-Nov-2018   

Sort of back to normal but facing a crisis in the area of the MA, they want a title (done) and a bullet list for my assignment. What the f***k is a bullet list? I know technically what one is, I use them all the time, but for a Level 7 academic essay, what is one, what does it look like? The resulting panic caused a lot of friction between Teresa and I (plus a bucket load of tears for both of us) to the extent that I decided that this was no longer “fun” and drafted an Email to leave the course, explaining why. As usual, I ran it past Teresa and she asked me to tone it down just enough to give them a chance to “help”. 

Well they did, not so much as help but gave me more leeway by saying that the two weeks I had spent trying to get my head around the bullet list had produced one that was “fine” (how did that happen) and I didn’t have to produce a 1000-word draft (the next deadline a fortnight Friday). 

As anyone who reads these blogs regularly will know, after a load of edits I repeat myself, waffle, change the subject halfway through what I was writing (multiple times) and generally confuse my reader. 

Producing a “Masters” level essay from that starting point is NOT easy, so we will see. 

Poo, well I may not have mentioned it but it is continuing a nightmare, it flies from constipation to wild diarrhea with no rhyme or reason, hurts (more aches, from Teresa’s description it is probably most like period pains, but never having had them I can’t say, but my description she says, matches her experience of them). In any case, it’s awful and more to the point exhausting. 

As for sleep! All I do is wake every hour or so from yet another unpleasant dream, trapped, failed, my past constantly coming up, …, talking about your life flashing before you, well it is but in slow motion like the constant drip of water torture and that is exhausting too. This staring your own mortality in the face lark is no fun 🙁  

I did get out another double blog out tonight so I am now only a week (excluding this week) behind and another double release at the weekend will bring me up to date. As Teresa tells me, the blogs are fine albeit a bit wayward. One thing is that I often put XXX in them to denote that I can’t remember something, I gather some of them make it out into the wild, sorry about that, welcome to my brain 🙂  

Thu 22-Nov-2018   

At work, sort of motivated and sort of making progress, but don’t know for how long. I talked to Teresa this morning and said, “life is just no fun at the moment” and it’s true, staying on top of work is tough, the MA is tough because it’s causing more friction than fun between Teresa and I and I do not like that. Otherwise it’s fatigue, poo, poo, fatigue. If I haven’t got long to live, surely it could be more fun for both of us than this 🙁 Oh well, I will fight through to the other side of this dip or it will kill me, oh yes, it already is killing me 🙂  

Q. why don’t you go out in the evening Bean?

A. because I get incredibly tired in the evenings I would have to try and sleep all day and that just doesn’t work so I would lose much of the next day. I do it very occasionally but the price is incredibly high.

A. why don’t you go out during the day

A. much the same reason, even a few hours out takes so much out of me that I am useless for the rest of the day which is a problem when you are supposed to be earning your livingas well!

Q. so, what about the weekend

A. we do, but even a morning somewhere, even somewhere as exciting as Penzance will take out my whole day.  

Q. surely the loss of a whole day at the weekend is worth it

A. it would be if that was all I had to do, but there’s work on the house that I want to do myself, there is the MA that I want to do, there’s a bit of cooking I’d like to do (mornings only) oh and catching up hours on my job that I couldn’t manage during the week. 

Q. so,surely,give up the day job

A. brilliant idea, mortgage and bills don’t get paid, welcome bankruptcy :-(. Yes, it really is that black and white, our financial situation was predicated on my working till I was 70 – looked easy at the time (still is if I die quickly as the insurance pays for stuff, it’s my living that is the problem, so, maybe, …?). 

Conclusion: it’s not easy, fatigue is a killer to fun, poo is exhausting and a double killer to going out, just pushing past the worry about the cancer is tiring. 

So, we do try our best and find pleasure in small things, but sometimes it’s just too much. At least Teresa gets out and about even though she often needs encouragement to leave me home alone as she is doing today. After her work today, she is off to the Supermarket, one of the “fun” things we sometimes do at the weekend, but it does take out all day Saturday or Sunday and that’s high price to pay for the excitement of a trip to the local supermarket! 

Next week (I think) Teresa has an optician’s appointment and since that was something we always did together we will do that. It has to be a weekday, in the morning when I’m most alert, so that’s a day at the office wiped out. Even so, I will need to use the buggy to have any chance of doing anything after my afternoon nap and so we have the challenge of access to Optician which has a step to get in, … 

I know we can park on Market Jew Street (or somewhere similar) for free with my blue badge, but I don’t like to selfishly use that space when I can manage to park in a main car park and use the buggy. Stupid maybe, but I’m not giving in that easily to disability! 

Massive tummy pain, off to the loo with fingers crossed 

 

Fifteen minutes later, “almost normal”, followed by “explosive”, followed by “full barney (very fluidic!)”. Yes, it takes that long, it’s why I do academic reading in there, passes the time! I have to take time as “problems” seem to go in waves and if you leave early you can be sent back in such a rush that it’s changing your knickers time! 

As I have said many times, it’s just no fun. However, it also explains why I have issues at folk festivals when I feel embarrassed to be in a very limited shared resource and leave behind such a fragrant air. So, I tend to allow constipation to get to me, despite hating it when it does. Just for those few days I want NORMAL poo, I never get it. I suspect those who suffer from IBS would understand (from my limited knowledge) and, of course ANYONE on these blasted TKI’s as it is a common side effect. 

And so, the poo continues, sore tummy, just a load of farts, sore tummy, diarrhea, it never stops (ha, ha). 

Fri 23-Nov-2018   

A goodly days’ work, first really good day when I felt on top all day for ages, I think I know why but I’m not sure I can tell you yet.  

There is a blog called “Trouble in Paradise” that I don’t feel I can release but explains. I am sorry if I seem to be cryptic, if it was down to me then you’d be reading it now, but it’s not. All I can say is that take being autistic and add terminal illness and a need for control and the result can be (is) devastating. 

I received my DSA needs assessment today, so all I am now waiting for is approval from the DSA for that assessment, don’t’ ask, bureaucracy rules! 

It doesn’t “give” much, the main thing is that it confirms to the university that I am useless and I get “free” text to speech software and speech to text software, both of which can be useful. 

The main point of all this paperwork and process is to ensure that  

1) I get some level of acceptance of the odd state of my brain – viz the following that goes into all my assignments 

Please mark this work for content and understanding and not for structure or surface errors of standard written English (spelling, punctuation and grammar) except where these may impede meaning.  Contact Disabled Student Support on ext xxxx for further advice if required. 

2) I get information on things that may (or may not) help but also if due to fatigue, diarreah, …, treatment in general, then I get leniency on deadlines for assignments, without going through the “you are disabled” process I don’t get that. 

Do I hate it, yes I do, I don’t need help from anyone for anything. Acceptance of limitations (never mind mortality) does not come easy to me, as you will have seen in how I debate with myself on whether I need to use my disability scooter even though I have working legs (I do need to) 

Postscript 

This has probably been my worst week since diagnosis. I may not have talked about it so far, but I was due a CT scan in first week of December, however the oncologists cocked it up and didn’t book it. For the last few weeks Teresa and I have been chasing them asking what is being done. We still don’t have a date and I’m not optimistic we will before Xmas now. 

That’s bad enough but remember back to the last scan, that the cancer may have spread to my lungs but they were waiting for the next CT scan to confirm, that is the CT scan they are currently not giving us a date for.  

So, has the cancer progressed, if it has, then that’s a step change downwards to the end that I (and we) really don’t want to hear, but we’d rather know one way or the other before Xmas. 

NO, we are not having fun, sometimes the load is just too much to carry and giving up is the easier option, for me at least. 

The Bean, Pendeen, 25-Nov-2018 

 

1 Comment

  • Linda Camidge

    I don’t think there’s anything helpful I can say. But I am still reading. I take your point that ‘peacefully’ is not the whole story: given that cancer will end the lives of so many of us, I suppose it’s a comfort in which society colludes – rather as the afterlife once was. You are still striving to do a full lifetime’s worth of stuff, including the MA, and I admire that – and of course, wish you both well.

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