Letter from the North

Grinding on, scan results in ten days – 23-Feb-2019

Again no photo, sorry, just too exhausted

Sat 23-Feb-2019 

Still very tired and constipated, went to Firehouse to discuss mods to the van (mainly bed, blinds and solar panel) 

Got back in time for lunch, shattered. Had a bit of stroganoff for lunch in the hope that things would ease. I got up after 3 hours sleep (I was that tired) and yes it did, nicely thank you 🙂  

Got a 2nd draft of my assignment task to Teresa 

Sun 24-Feb-2019 

Did final three drafts for Task 1 and submitted – phew, exhausted 

Diarrhoea is grim again today 

Mon 25-Feb-2019 

Diarrhoea is grim again today 

Managed to work in between trips to the loo 

Got results back from the assignment task – it was fine, onto he next task due in two weeks’ time, it never stops. 

Tue 26-Feb-2019 

Didn’t go to the office today (as I usually would), exhausted from the diarrhoea and even though today has turned out to be OK, it is surprising how exhausting the blasted poo is, never mind the general fatigue. 

Managed an hour this evening researching the law on “reasonable adjustments” at work (for autism in this course) it is a fascinating subject and an example of how the law makers (our wonderful governments) abdicate responsibility and pass to the lawyers the responsibility for working out exactly what is reasonable, why and when. 

The fatigue is really bad at the moment, partly fallout after last week, partly it just always is and partly the diarrhoea, that triple whammy is quite paralysing and I have to drag myself by the scruff of my neck into my office to do anything – even this blog 🙁  

Wed 27-Feb-2019 

Crashed out last night, woke around 6am, up around 6:30am and at work 7:15am and I am exhausted before I even start, I am ready to go to bed. Waking up just as exhausted as you were when you went to bed is tough, I can see how easy it would be to just stay in bed all the time and become bed ridden, it takes will power to keep going. This is something that I have seen in those dealing with ME, you cannot deny the fatigue but you can choose to work with it and get on with life or let it take over, I was always impressed by those who did not let it take over, never thinking I would find myself fighting a similar battle. 

You think that’s all there is, go to the loo, normal poo, yeah, wipe your bottom and blood! Almost certainly the “usual problem” but I didn’t push hard so no obvious reason why it should. 

I hate this constant dealing with stuff 🙁  

Had some poo stroganoff at lunch (just a bit) and yes, what was left loosened nicely AND no blood, it was the usual problem, phew! 

Thu 28-Feb-2019 

Just got on with some work tasks, actually writing code rather than fixing/diagnosing, though it needed some of that along the way. A good day and I got some work done this evening too as I knew I would lose some time tomorrow. 

Poo seems Ok, albeit diarrhoea’ish 

Fri 01-Mar-2019 

Took Angelique into the garage for her service, then got on with work. Usual poo issues, but normal. 

After nap collected Angelique, she sailed through the service. One brake light had failed in the two weeks since the MOT, they removed some of the Japanese gizmos attached to the dashboard (for toll roads, GPS navigation and stuff) and identified that the remote controls for two of the passenger windows were broken. That means replacing the master unit on my door and it’s an import form Toyota in Japan and £450, so I will cope without and/or wait till one comes up on Ebay or somewhere at a more civilised price! 

Finished the work I wanted to get done. 

All in all, a good day, however still exhausted by the end of the week and nowhere near as advanced on my assignment task as I hoped. Hopefully the weekend will be better. 

Postscript 

I am sure some people must be thinking, “well, we expected him to be dead by now”, after 15 months I am pleased to still be going but because the cancer is invisible and the side effects of the drugs are invisible (apart from the white hair and at 64 nobody notices that), well invisible to all but the closest to me, I look and sound fine and clearly there has been a bit of “cry wolf” going on. 

I get my next batch of scan results in 10 days and I am (and Teresa is) as terrified as always as to whether it is still “on hold” or has defeated this drug I am on. 

For me, the cancer is ever present, I guess for most people it’s just not obvious it’s still there and I seem much the same as before. 

Teresa and I know things aren’t like that and if you read this blog, I hope you trust me that I’m not over egging how it affects me, but I remain concerned that cancer like mine is so invisible – no hair falling out, …, until the end when it’s down to weeks 🙁  

So, I keep blogging and hope you aren’t getting bored, well the select “you” that are reading this 🙂  

In the meantime, I have just finished moving Teresa’s computer from one room to another, a simple task that took an hour. I am so shattered I can’t think straight. 

The Bean, Pendeen03Mar-2019 

3 Comments

  • Kate Mole

    Good luck with the scan results, Bean. Lots of people thinking of you and wishing you the best.

  • Joyce green

    So sorry about all you are dealing with – hoping hard that the scan results will be good . Sending love to you and Teresa xx

    • Bean

      Thank you Kate & Joyce, indeed we always hope for good results but the relentless cycles of results, wait 9 weeks, scan, wait 3 weeks, results, …, means we have to try and not look forward (with hope or trepidation) and somehow just view it is some sort of normal way of living! I know from “before” that it never would have occurred to me what someone in the position Teresa and I now find ourselves would be so relentless, no hope for cure, just hope for another 3 months, …

      Cancer – well, either they get rid of it or it kills you, this “lingering” process of well it’s not yet killed you, come back in three months to see how well it’s getting on with it’s job of killing you. Not this time, excellent, restart that three month clock and we’ll do it all over again.

      It’s a battle to keep it in the background so it doesn’t dominate your life, but in the weeks between scan and results, it’s impossible to ignore 🙁

      The frustrating thing is that the gap between being extraordinarily lucky and getting 10 years or unlucky and getting only 3 months is pure chance and you never know from one three month cycle to the next what it will be.

      That’s why I started six years of postgraduate study towards A PhD in autism studies, not because I think I will live long enough to complete it (I don’t) because I might just be one of the lucky ones and achieve it. What a 70th Birthday party that would be!!!

      On the other hand I could just as easily not make my 65th Birthday (next January) that’s how quickly things can change.

      Bean

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