Letter from the North

Well, it’s here, but I am (am I?) feeling very sorry for myself, 4-11-May 2019

The last fire of the Winter?

Sat 04-May-2019

Worked on assignment – only got this weekend and next and that is thanks to the extension.

Sorted out Teresa with hosepipe and her Karcher pressure washer so should could clean some walls prior to painting – exhausted and crashed to bed after lunch.

Post sleep she did the pressure-washing (our outside tap makes a racket in the house and she didn’t want to disturb me – neither did I 🙂

Post wake up she did her thing, then I helped put stuff away and then we moved Angelique onto the drive and trial fitted our new mattress cushions – will be 6 in total we bought three to test for fit and comfort. Tick on both counts and I’ve ordered the other three. Teresa is making some covers from gorgeous existing material and I am looking forward to seeing them made up and how it all looks together.

Tea – same pasta as yesterday and although today had been quiet earlier this evening things were “normal” but I feared cork in bottle syndrome and now about an hour later, yup, urgent messages are building and I suspect it will be more Loperamide 🙁

It wasn’t

Sun 05-May-2019

Totally blank, don’t recall anything

Mon 06-May-2019

Blank brain and memory, completed draft of assignment for Teresa,

Though I am pretty sure there was some Loperamide activity!

Tue 07-May-2019

Into office in the morning – feeling very tired

In the afternoon a vampire session:

As a result of the Kidney Cancer, the Kidneys produce too much of a hormone called Erythropoietin (aka EPO). That causes too many red blood cells to be produced which is known as Secondary Polycythaemia.

The consequence is my blood gets too thick and sticky with increased risk of high blood pressure, stroke, heart attack, …, hence it needs to be treated as a condition in its own right even though it is a consequence of the cancer.

The treatment is that, (every month at the moment), a pint (400ml) of blood is taken out of me, exactly like at a blood donors’ session, the volume of red blood cells and amount of haemoglobin is tested and then it is disposed of. It’s usually done at 9am on a Friday morning, but not this week)

No big deal except when the needle plays up as it did today and I end up with three punctures, a sore arm and lots of bruising :-). I also end being more “thick headed” with fatigue than usual for the next day or so.

Looks bad doesn’t it?
See the three pinholes, that’s all it really was, the one on its own worked the other two failed

On the other hand the one on it’s own was uncomfortable for another week and bruised up.

It’s another reason why alcohol is a bad idea (it can make Polycythaemia worse) and I no longer drink

Never got a nap, but after tea some semi-constipated poo – no surprise after yesterday.

About an hour later I was hit by agonising abdominal cramps, for about a minute I was unable to speak or signal to Teresa what was happening. Eventually the pain disappeared and realising what I was being told I headed for the loo. Yup, despite none of the normal signals a clear out was called for, I was up there for about 15 mins or more until it sorted itself out.

I went to bed and crashed

Wed 08-May-2019

Abdominal discomfort rules, increasingly whenever I eat, I get twinges, today it feels like my insides were beaten up – I suspect the spams yesterday evening have upset some muscles somewhere and they are making their feelings clear.

However, it is just as likely the cancer has hit somewhere that I don’t want it to. Well the next scan is due at the end of the month, so, we’ll see when I get the results at the beginning of June 🙁

Thu 09-May-2019

Normal poo,

More bad cramps, loo and not so bad. Went to bed, 11:30pm up and back to the loo and clean knickers time 🙁

Fri 010-May-2019

I realise I am walking a tight rope at the moment, balancing work and the assignment and Teresa and dealing with the big C fella (and losing – the Big C fella feels like he is winning). So, yes, I am “depressed”, that’s understandable. If it turns out that I am only fighting the drug side effects and not spread of cancer (which I will find out in a months’ time), that will help. But until then it’s hard just dealing with those side effects. Harder than it has ever been.

I have been very careful to pace the assignment which is why I am running up against the end stops. Unfortunately, I did not choose an easy way to write it, but there’s no point if I don’t whole heartedly believe in what I am doing so I took the difficult road.

Getting the assignment submitted with the objective of “a pass will do” is very important to me, it’s in the “otherwise what’s the point in living category as you know”, so I am trying to do the least I have to do to complete it.

Here’s just a moment from FB/Twitter (from me)

Cancer IS traumatic, treatment is BRUTAL, I saw this article this morning, minutes after telling Teresa that I feel so awful that I didn’t think I would need a hotel room for the concerts we have booked for November, yet at work on Tuesday being told “you look so well”.

In case you are in any doubt, that was me commenting that either I wouldn’t be well enough for the concert or dead.

Postscript

No chance of me getting this published this week, so rolling it over to next week.

The Bean, Pendeen, 12-May-2019

Sat 11-May-2019

Some assignment done, not much.

The poo problems are getting to the point where my quality of life is seriously impacted and I am giving up.

So, because WE don’t give up, Teresa and I are exploring some poo control options but won’t discuss here until we see how it works, but it does mean you get a break from poo for a while (though I may not, we shall see :-))

Sun 12-May-2019

No idea what happened but I did post this (FB and Twitter):

So, just being #autistic is exhausting, #cancer and treatment side effects cause #fatigue and pain. I must do my day job. I must finish my already extended (MA) assignment by Thu. Mental effort uses a lot of energy but I am already in deficit. It can be tough just to keep going.

As for the poo (Poo Emoji here)

As for cancer worries and depression, it’s bad at the moment :-(, 🙁

So, no blog will be released this weekend, it will probably be just a two weeks in one next week (maybe) and by then I will have forgotten much of the last week, so apologies in advance if I go a tad woolly headed (actually I am already there in the woolly headed department ) (three sheep emoji’s here)

Sorry,

Bean

Mon 13-May-2019

Went into the office to discuss assignment with HR manager

Home and crashed

Tue 15-May-2019

A relatively good days work on assignment and managed to make a submission of “something” close to what I want. Two more mornings of work yet to go but taken this evening off and hence some quick notes here.

Wed 15-May-2019

Again, worked on assignment, think I am there

Thu 16-May-2019

A 2-minute tweak to the assignment and did final submission, but otherwise, crashed out

Fri 17-May-2019

Crashed out

Postscript

Getting this assignment done on top of work and the constant drain (ho, ho) of the poo problems and all of that on top of awful fatigue. Well, it took everything I had and resulted in burn out. Being sensible, taking my time to recover, but work doesn’t wait for me.

It’s all a waiting game, in a week’s time (on Friday) I get the results of the assignment, if I fail then I will have to give up on my hopes for an MA because it is clearly too much for me, that’s worrying.

My CT Scan is on the same day as the assignment results, that’s always hard. It also means that the CT results will be 12 days later (just over two weeks at the time of writing this postscript). That is really tough.

I can understand why people give up on Cancer treatment and live an easier life until the cancer kills them. There are days when I find that VERY attractive.

However, I don’t give up easily (thanks mum for that stubborn streak) and neither does Teresa so we do what we can to ensure that my (and importantly HER) quality of life is acceptable hence the work we are doing to tackle the poo issues and the fact that I have taken five days off sick (because of burn out) plus an additional 2 days of holiday (for the final assignment push) in the last two weeks.

I HATE taking sick leave, before this f*** cancer I never took time off sick, even after the accident (when it was diagnosed) I was back at my desk after about 3 days, typing left handed, handheld mouse in my right hand (in a sling). Officially I was on sick leave, but sitting around and feeling sorry for myself is not me.

What am I doing now? Yup, exactly that and I hate it, but I have no choice, the life I had is a distant memory. Triumph is being able to do some cooking and then be wiped out for the rest of the day.

Oh well, …

The Bean, Pendeen, 19-May-2019

5 Comments

  • Kate Mole

    Dear Bean,
    I am sorry to hear all this. All sounds extremely tough, as you say – on all fronts. And nothing to do except to keep on going on…….. Do be sure that lots of thoughts are with you.
    Love,
    Kate.

  • Bean

    Thank you Kate, it’s no worse than many (most) of us with non-curable cancer go through, but before it happened to me, I had no idea it was like this. I knew radiation, chemo, surgery were all tough, but not this drugs with nasty side effects that also stop working, take them until you die sort of treatment!

    It’s the relentlessness of it, it just keeps grinding you down.

    As you said, you just have to accept this is your new life and mostly I do, but it can be hard and that’s what I write about..

    The reality is it’s like having ME, IBS plus a whole other bunch of conditions (no taste, dry mouth, sensitivity to sun, pain in joints and muscles, …) all rolled into one. Not unique or special but as anyone with those conditions know, it’s just no fun some days 🙂

    The only real difference is that this cancer is guaranteed to kill me even if I put up with all these side effects, it’s when not if and that’s the kicker.

    Bean and I know you all care, I don’t ever forget that xxx

    • Kate Mole

      Dear Bean,
      Thanks for your comment. Of course it’s tough – it’s one of the most difficult things anyone can face; one of the worst hands of cards you can be dealt.
      Ignore the following if you want to, but I just wondered – do you have any opinion about what happens to us after we’ve left this world? Or do you believe there is only this life and that’s the lot? I’m only enquiring – I’m not about to bring up any particular agenda about it.
      Love,
      Kate.

  • Bean

    I believe that if anything happens after death it cannot be something I could understand in this life, so therefore there is no point trying to second guess. It will be what it will be.

    That’s why I believe we have to try and do our best (flawed as it is) in this world rather than hoping for a 2nd chance or redemption in an unknown other. And boy could I do with some second chances and redemption 🙂

    My biggest regret is that my eldest two children (not the two that came to Cornwall with us) refuse to forgive me for being imperfect, but there’s nothing I can do about it., Teresa and I have tried

  • Kate Mole

    I see. Only thing to do, then, is to keep on keeping on. Like you, I believe we have to try and do our best in this world. That’s what you are doing, plus extra because you’re also communicating to us – this deserves a lot of respect, if you don’t mind my saying so.

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