Letter from the North

More Poo stories and Cardboard Fish 17-Feb-2017

Me at the North on my 2nd visit at the end of January, just finishing my HALF pint of Proper Job. Back then I could still taste it. Not any longer I am afraid 🙁 .

Blasted Consultant – Sat 17-Feb-2018

Can’t say I’m on top of my game. I woke around 5am and got up around 6am and managed a bowl of Ready Brek plus a mug of tea, then into my office.

I have drafted a letter to the Consultant saying how unhappy we are with our “care”. It is now in Teresa’s hands and will be totally re-written as we both know my clarity of communication when I am unhappy is more than anyone without a lot of experience of adult autistics can handle without taking severe offence. So, Teresa will “pretty” it up and I’ll put a few autistic teeth back in, just more carefully placed, and we will ring the support nurses to find out how to send it to him.

Treating me like an inconvenience is just not on, but I’d like to give him the chance to change his approach before really rattling the cage.

Hanging Blinds – Sun 18-Feb-2018

Just pockling along with work, spent a bit of time helping Teresa with the blinds for the annexe. Mechanically, I cannot see why the end caps/mounting brackets are so much larger than the U-Channel that fits into them, so emailed the supplier to see if I have missed something. Also spotted that if you put the central clip in the middle it fouls the strings for the blind, so need to move it about 2cms off centre. Nothing about that in the instructions either.

In the past I would have spotted all this sooner, but I have to say my “practical” head is much slower than it used to be, mainly because, I think, work gets the best of me and everyone else gets the “fag end” and after the last 10 days that’s very, very small!

The poo story returns – Mon 19-Feb-2018

Up around 5am and at my work desk by around 5:30am

Poo still somewhat of a problem, diarrhea yes, but not severe, maybe three trips a day (four, tops) and I’d like to let my digestive system settle before taking action.

Anyway, new anti-nausea is supposed to have some “any!” effect, so patience I think.

Still getting stomach cramps, prob down to wind (above and below)

Patience, taking time, …

A good day’s work, 10 hours!

We also got our letter off to the Consultant today, we hope he takes it seriously and starts engaging with us. We fear he will not like having someone “question” his approach and leave us having to seek treatment elsewhere (out of County) with all the accompanying delays, especially worrying when you have a tumour you can feel (shoulder) that is actively growing. Oh well, fingers crossed.

Yup it’s back – Tue 20-Feb-2018

Well, not sure what to say about the bottom department. Insisted I go around 4am, so I did and almost “normal”, certainly in the right ball park. Four hours later a second call and we are back to “pebble dash”, oh well, it feels like it is SLOWLY calming down, so patience Bean

Oh well, 12 noon and I thought I was going to need a clean pair of knickers (no, but touch and go), pooh like water, so “Imodium” (non-branded on prescription) time.

Why does nobody tell you anything? – Wed 21-Feb-2018

Popped to the GP for some more Ondasteron.  The one good thing that came from last week’s “clinic” was this alternative nausea medication, specifically meant for post chemotherapy nausea. Given that the pills I take are not Chemo, but affect the body in similar ways, it seemed like a good idea. It is, they are wonderful. They have a problem in that their effectiveness decays and you need to stop taking them, they are usually used for a week after a chemo session rather than for weeks on end. However, I am not taking the full dose and will now stop at the weekends to see if I can keep their effectiveness going.

Interestingly, having told one of the cancer nurses that we were fed up not seeing the consultant, she said that if you ask at “check-in” they will put a mark on your file and the Consultant will see you, but you may need to wait longer! The GP told me the same thing today, so it’s clearly “known” inside the profession. How were we to know that?????

Otherwise “just another day at work”, though I hit the brick wall around 4:30pm and laid on the sofa till tea time and fell asleep by 8.00 pm.

Cardboard Fish

On her way back from the garage (car MOT) Teresa picked up some fish and chips for tea, for a treat. They tasted like cardboard, so no more fish and chips for me. This lack of taste problem is one that really is impossible to describe unless you experience it. It is truly awful to get no pleasure at all from eating, add the dry mouth, no fun.

Phew, just another day – Thu 22-Feb-2018

Still, at my desk at 7am and feeling fine (as fine as I ever do), looking forward to “just another day at work”

An autistic Poo Report

Yup it’s time! Two good ones and then the diarrhoea was back, took a “blocker”. I consider this good progress.

Mind you Teresa came up to me for a cuddle during the afternoon after I had just come downstairs from the second visit and, as I was pleased about this progress, I told her. She felt that with her head buried in my chest and enjoying my arms around her “I’ve had two good poos” was not the romantic comment she expected. I’m sorry pet, I thought it was good news and shared it, I don’t really understand this good time/bad time or romantic thing and at that moment the romantic was second in my mental queue, the good news was first in my queue.

If you ever wanted to understand just how sequential our Autistic brains can be, this is a good example. No matter the situation, I HAD to say the first thing before I could move on to the second. Without CONSIDERABLE mental effort to override this default behaviour, that’s what happens, you just have to let me work through my mental list from the beginning until I get to the thing you want to engage with me about. Interrupt me and I have to go back to the beginning. It WILL drive you (aka Teresa, my employer, anyone who tries to talk to me) absolutely nuts. It’s not obvious if I don’t have a queue of things all ready because what you want is first in my list, but you WILL need to wait until I finish processing the first thing you said before rushing on to the net thing and that may take me rather longer than you expect.

Yes, this blasted cancer sticks its oar into our lives in horrible ways, but it’s the underlying autism that was, is and always will be our biggest battle together. Me to pull it back and Teresa to accept more of it so we can find that compromise that is essential in ANY relationship. It is tough and it would be so easy to let the cancer obstruct that process, but if we let it our relationship would crash and that really would be a crap …

[all I can think of now is returning to the subject of poo, my brain is locked, …., stop it Bean, concentrate, you said constipate? No, I didn’t, well anyway, on the subject of poo, it’s really interesting, ….]

… result. I wrote like that because the diversion literally occurred between the words crap and result in my head and would have done so in the middle of a conversation!

The cancer won’t kill our relationship, the autism would if we let it (it did my previous two marriages), we don’t let it, but we both have to fight hard to ensure it doesn’t.

Show of hands – Fri 23-Feb-2018

Off to a concert – Steve Knightly (show of hands) at the acorn this evening. It starts at 8pm and I’m usually tucked up in bed long before this, totally exhausted. Worse, the seats at the acorn will be massively uncomfortable and we have to take my cushions to try and ameliorate them into something I can tolerate. Even worse, the loos are downstairs and when diarrhea strikes (and it often does strike in the evenings) I have seconds and can’t use their lift during a performance so it’s a struggle down a tight spiral staircase with one arm not working for supporting my weight

So,

  • I will go to bed after lunch to try and get some sleep and hopefully be “less” exhausted in the evening.
  • We will take my 4″ thick memory foam “bottom” cushion and cushions for my back and hope we can find a chair that is a good base to build on
  • I will take my Imodium instants” with me in case I feel ANY gurgling and indeed may take a standard pill before we go out anyway, just in case.
  • Take bottled water with me and “sucky sweets” to help with the dry mouth problem
  • Autism and crowds of people anyone?

And then we will try to enjoy ourselves. I am going to be such a “damper” for Teresa and yet it will be wonderful to go out together. It doesn’t happen often as I don’t handle crowds (more than one person) well, I find them exhausting. This will be the first time since the accident four months ago, so it’s an important “first step” for us.

Poo alert

Teresa tells me there was too much poo in last week’s blog. Probably say the same this one too. Yes, I agree and yet it is a significant part of my days at the moment and it is a perfectly “normal” bodily function. However, much like cancer, one that people shy away from talking about. These blogs are about staring stuff in the face, so poo alerts will continue, so long as they are relevant rather than routine.

This morning, loose rather than runny, that’s a triumph. It really feels like my body is turning the corner after coming off Tramadol, of all the side effects it’s the poo department that was the most distressing.

Postscript

Teresa didn’t edit last week’s post, indeed didn’t see it till I released it yesterday evening. Her comment? “The first part I thought you don’t need me, the second, yes you do,” so there you go, if you felt the second half was more difficult to read than the first, you were right.

Given the current blizzard conditions as I do my final edit on this, there is every chance she won’t get to this one either, but we will see.

Well she did, so fingers crossed as this goes out, it makes a tad more sense than the last.

 

 

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