Letter from the North

Scanxiety, Tramadol withdrawal, a Cold and Hailey Windy Night – 3-Feb-2018

Cold and Windy – Sat 3-Feb-2018

Today I spent an hour and a half outside in the freezing cold wind, sitting on my padded cushion on an upturned recycling crate, loading logs into bags while Teresa stacked them in the woodstore. This is a total reversal of our usual roles. The woodstore desperately needs its roof replacing. I had the sheet of ply and roofing felt ready and waiting, just before accident; now the roof has deteriorated even further and is only half on, and a mess, and not doing the greatest job of keeping wood dry. So, I’ve propped it, used bits of wood and tarpaulins, and hope it will do. Even after today’s efforts, half of the original stack is still waiting to be moved. Goodness knows when we’ll manage it, but we will…

A Cold Hailey Windy Night – Sun 4-Feb-2018

As part of my Audio setup work, I have connected “Volumio” on a Raspberry PI to my (network) “Server” which has a lot of my music on it. Whilst doing this, I came across some recordings we made when a bunch of my friends and I, whilst at University in Sheffield, played in a “Folk Band” (Hailey Knight). Sadly, the quality of the recording is poor as it was originally done on a cassette tape, and has been transcribed many times and converted into mp3’s along the way.

The quality of the playing – well, that’s even more variable!

But it does remind me of the length of my life and the different things I have done and the things I have let slide (repeatedly), that I wished I hadn’t

These maudlin thoughts are not altogether a surprise. One becomes aware of one’s mortality as the years progress and even though in my 60’s I had every reason to think I should have another twenty years, that has changed.

Added to which, every three months I have I have a CT scan and my mortality (and the indications as to how close I am to the end of my life) is examined in careful detail, and I have precious little control or choice about any of it!

It is a sobering experience, not only for me but those around me who care about me. The frustrating thing is that I know I am so far from being alone in this, and yet it is only now it is happening to me, that I accept the reality of mortality. I really question how nice I am as a human being, being so unaware of it taking place all around me in the communities I live in a share with others. How selfish Bean, you only care when it’s you!

Tomorrow I have my first scan since diagnosis and in ten days’ time, the report on what it means (good, bad or just the same).

Scanxiety is a well-known phenomenon in this cancer world, especially in the cancer worlds like mine, where you can’t be “cured”, all they can do is slow it down. This blasted cancer engine is trying to drive me off the end of the cliff of life and all the time I’m worrying about how good the brakes are, are they overheating and failing, is this downhill plummet just too much for them. Will someone find me a better brake before I hit the bottom.

Scanxiety – it’s really no fun and I will have it until I die, no matter how near or far away that is!

Scan time – Mon 5-Feb

Today I had the scan at West Cornwall Hospital using their lovely new scanner which:

  • Is faster than those at Treliske
  • Has a lower X-Ray dosage than…
  • Has better image quality than…
  • Is operated by a dedicated West Cornwall Hospital team of radiographers

Go West Cornwall! Or, in a rather less Americanised approach, three cheers for West Cornwall Hospital, what a service right on our doorstep – brilliant.

The scan will be reported by the doctors in RCH Treliske and we will find out our news next Wednesday

Scan was the usual thing, cannula in left arm and contrast die injected just before the scan – funny taste and warm “glow” from head to crotch.

This is the new normal, more chemicals and X-rays every 3 months for as many years as I can squeeze out.

Back home and on to work. I was fine until 6.00 pm when I started to feel very odd, sort of light headed but not like fainting, but a bit…. Not sure why, lots of theories:

  • Effect of the contrast that is injected for the scan: it’s recommended to drink lots of fluids afterwards to flush it out, so I had a quick drink, not sure if it helped
  • Low blood sugar – about to have tea
  • Just tired (having been awake since 4.00 am)

I’m not sure, but once I’d had drink, had tea, settled into my sleeping position on the sofa, I felt a lot better, so whatever sorted it, it worked ????

Not thinking – Tue 6-Feb

Teresa is off to hairdresser, so, I am just getting on with work, nothing much to say really, the big event is still 8 days away, so, patience and try not to think about it. Shut up Bean, stop writing about it, stop thinking Bean, stop, …….. ????

Checked with nurses at cancer clinic. Yes, they did want blood tests, no the admin side hadn’t asked for them. Here is a list of what we need. Some problems booking in with the phlebotomist at the GP’s, but sorted for Thursday

Wed 7-Feb

Just work

Interesting – Thu 8-Feb

Been to Phlebotomist’s (a locum) at the GP’s, drawing the blood seemed fine, but the paperwork (computer) seemed to cause some complications, think we’ll check on Monday that the clinic has received the test results they need. Better belt and braces!

Day started nauseous and still progressing well, 15 mins to chocolate time, staying very still!

This morning NO Tramadol, that is I am Tramadol free

[Editor’s note, how little do you understand how ominous that statement is Bean, just you wait, …].

Will stick to 1gm Paracetamol 4 times a day and see if I am ok without the Tramadol. This is a test, but it would be great if I could get Tramadol out of my life and then start weening myself off the paracetamol.

It’s not just about reducing the drugs, it’s that I CAN reduce them because the pain is reducing and the only way I can confirm it is to reduce the pain killers till the pain returns (or doesn’t). Still plenty of pain killers in the store if I need to take some Tramadol!

Communication problems and a bloody nose – Fri 9-Feb

Although the cancer thing makes both of us less “able” because it is pulling us both down in our own ways, we dare not forget that this is a “mixed marriage“, the blend of autism and neurotypicalism in a relationship.

Because I’ve had 60 years of being Autistic in an NT world and have tried very hard to fit into the NT world, I’ve had a lot of practice. Teresa of course doesn’t have anything like the same experience. So, I try very hard to meet her more than half way. Trouble is, at times I get so down I can’t even reach halfway and she is left floundering not knowing how to reach me because I am in an alien place. When that happens, as it has over the last few days, we have problems.

[Editor’s note, at this time I had no idea what the absence of Tramadol was doing to me, in hindsight, these entries make more sense to us.]

I got very upset this morning and blew my nose a lot and suddenly the tissue was scarlet, every blow another great splash. Not a nose bleed, it wasn’t “free running”.

Pretty sure it’s yet one more of those side effects, chatted on the Kidney Cancer Facebook page and indeed, not at all a surprise. Stopped blowing and when I did was very gentle and that problem at least, eased off.

Went to bed and felt awful, don’t know why, maybe the emotional state Teresa and I are in, withdrawal from the Tramadol (been free for two days) or just the Paz stepping up a gear on the side effects department.

[Editor’s note, the penny was just starting to drop at this point]

So, bleeding nose, diarrhoea starts, I feel really tense in my back – from past experience that’s a stress thing, but so bad that laying on it has me bouncing around to try and stop the feeling. It’s not pain, I wish I could describe it – more like an intense version of that feeling you get in your back on a dark night when you think someone is following you, it just won’t go away and makes sleep impossible, as does the increased pain.

In the end gave up and had one 50mg Tramadol. Dulled the pain but did nothing for the back. A VERY, VERY long night followed.

Postscript

As you will see from the various [Editors] sections I have added above (isn’t hindsight a wonderful thing?), we were starting to get an idea that finally stopping the Tramadol might be causing problems. From here on things went downhill very rapidly and hit a very low bottom. At the time of editing, over a week later, the worst is over, but I would not wish this experience on my worst enemy – and who did I inflict it on? Yup, Teresa, the person who least deserves it. She had to cope with my paranoia, my not eating, drinking, looking (and being) so ill she wanted to call 999. Selfishly, I thought it was tough for me, I cannot understand what it was like for her. Yet we made it, knowledge is power and once we understood WHY, we worked as a team and got through it. I could go on and on singing her praises, but I hope by now you know how much I love her and appreciate all she does and words (my words) are a very poor way of expressing it. I hope, in the flesh, I manage better.

The Bean, recovering slowly, Pendeen, 17-Feb-2018

5 Comments

  • Kate Mole

    Dear Bean,
    Poor you and Teresa – this all sounds pretty bad. I suppose the plus side is that now you have discovered something about Tramadol and withdrawal from it, this scenario need not happen again. I don’t suppose you wanted to learn anything about Tramadol at all, but there it is.
    My thoughts are with you both. Good luck with the scan results. And with the waiting for the scan results.
    Love,
    Kate.

    • Bean

      Yup, never touch Tramadol again. As for scan result, because these blogs are 2 weeks or so behind I did a specific post on the results last week – see “There isn’t always a happy ending – 15-Feb-2018”, the news wasn’t good I am afraid.

      Bean

  • Kate Mole

    Dear Bean,
    Yes, I see now. Sorry I misunderstood. I meant to add also that despite all of these dreadful happenings, you seem to have got a great deal of work done, both the professional and the domestic sorts. I continue to be impressed!
    Kate.

  • Linda Camidge

    This is the sort of thing people need to know: being realistic, the sort of thing some of us reading it WILL need to know. I salute you for continuing to examine your life, and to work – I know you say “just work”, but it’s a big part of who we are.

    • Bean

      Thank you Linda, sometimes I like to be able to put in an entry saying “just work”. The down side is that typically, once I’ve finished a days work, I am usually so tired that for the rest of the day/evening I just rest/sleep on the sofa, so work gets “the best” of me. However as you say, work is a significant part of my life and it keeps us solvent – not a bad thing :-). More usefully, I am working at home so Teresa and I are constantly crossing paths throughout the day which is nice before she gets “pudding bean” flumped in bed (aka the sofa)

      But, it’s also really nice to have nothing else to say, just a normal day at the office, no broken bones, no cancer, no side effects getting in the way. It would be nice if these days were the norm, but I appreciate them when they happen and celebrate them with “just work”.

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