Month: March 2019

Brexit, Drugs and Poo – 16-Mar-2019

Bookends – you can see Barneys face. Spooks is invisible because he is all brown and unless he opens his moth and shows his pink tongue, he is rather “spooky”

Sat 16-Mar-2019

I took Teresa to Sainsburys this morning as we both wanted a few moments out of the house. She had wanted to go on her own, but my experience is that despite feeling better she wasn’t. By the time we got home, that was confirmed and we both crashed, that took out all the morning.

In the afternoon (after my nap obviously) I transcribed my tutors video notes on Task 2 into comments on the task – easier for me to process quickly in the context of what I wrote.

Thanks to the tutor I realised a way to do what I wanted how I wanted to – autoethnography – who knew? Probably any academic out there but I didn’t and it describes exactly how I want to study autism – from the inside.

Continued to watch the video feed of the docking of crew dragon (SpaceX) I suspect most (all?) of you think it is “boring, like watching paint dry for most, but for me, a child of Apollo, it is fascinating to be able to watch so much detail. Loving it.

Popped some (dried) kidney and black eye beans in to soak overnight,

Sun 17-Mar-2019

Made chilli – always takes time – around 2-3 hours – all prep, then leave in slow cooker to cook for a few hours and then in fridge for a couple of days for flavour to develop. At this stage it’s very raw and misleading and the temptation is to “fix” it and I know its flavour changes (and improves) a lot given time, so leave it alone Bean (I did).

Had a nap

Trying for task 3 – didn’t get there.

All OK, then around 8pm needed loo, relatively normal

20 minutes later, wham the big D is back, took Loperamide and then to bed. 15 mins later – wham again dose – took another Loperamide

Went to bed (again) and laid still, woke couple of hours later and yes, wham again! This time (for the first time) it felt like things had finished and I didn’t take a 3rd Loperamide.

Mon 18-Mar-2019

I now have a very sore “tummy” feel like I’ve been punched. It’s not agony it is uncomfortable and I don’t like touching my abdomen (and the pressure of clothes!)

Oh well, the joys of diarrhoea, I just wish I knew what triggered it because there was nothing obvious in what I ate yesterday. I guess it’s just “one of those things”, but it’s really no fun.

Diarrhoea is normal for me, almost every day, but this was a particular nasty time and it leaves you exhausted and sore.

Tue 19-Mar-2019

Woke early, in the office earlier than of late but actually around my normal time from 18 months ago.

All ok, got back exhausted though I only got intermittent sleep from my nap, up and away and back in office for some work.

Poor Teresa has gone downhill with this virus. As seems to be quite common now but I don’t remember it being the case when I was younger, these virus’s come back for a 2nd and often 3rd bite at the cherry before they finish

Wed 20-Mar-2019

Yup, she is back to feeling lousy.

Me, well apart from being constipated (go figure, my digestive system has its own life independent of me!) I am fine, just getting on with work. I had a constant waking night and a struggle to get out of bed (it took a good hour) but once moving I am ok.

Thu 21-Mar-2019

Went to my GP this morning for a blood pressure review – something that happens once a year when you are hypertensive (which I already was before starting on the blood pressure raising cancer med – pazopanib).

He told me that one of my pain killers is not available at all – fortunately I rarely use it but he suggested I hoard what I have like gold dust. My primary Blood Pressure drug is getting hard to find, without it I cannot take my cancer meds!

Whilst there are possible alternatives (at the moment), my body is stable with my current mix of meds, any change is a problem and my cancer is only “stable”, instability of ANY sort is worrying. I take a cocktail of drugs all of which interact with each other, me and the cancer, at the moment there is a balance, I am not keen on anything that could disturb that.

What happens if my cancer meds themselves go short supply; I am truly screwed! For now, I have a three-month supply of that, but in three months’ time who knows what further mess our wonderful prime minister and government will have achieved?

This is MY life and that of very many others that our government is playing Russian roulette with. Hoping for the best is just not good enough.

I don’t care which side of the Brexit debate you sit on, the currently level of Mupitude displayed by our Prime Minister and her government and our MP’s is simply unacceptable and they ALL should be …. insert appropriate blood thirsty comment

One of the side effects of the amount of blood pressure meds I have to take (so that I can take the cancer drug – it’s 3-4 times what I was taking for high BP before) is that it can cause ED (erectile disfunction), all the fun of “brewers droop” without the beer (being tea total now!)

I discussed it with both the oncologist and my GP and fortunately, that blue pill, Sildenafil (aka Viagra) does not conflict with ANY of my meds or the cancer itself and its apparently not in short supply, can’t imagine any men in power letting that one run short?

However, it’s another drug I need (as part of our quality of life) in dealing with this cancer. At least it’s free for me, small benefit of either being over 60 or having cancer (both qualify for free prescriptions)

Nothing all day in the poo department, then there is this (very common) pattern:

I lay down and watch bargain hunt with Teresa, no hint, an hour later I roll onto my left-hand side to go to sleep and urgent messages and great gurgling’s in less than a minute and all out, well a rapid dash to the loo and then … Clearly moving my insides to that position “releases” something!

Fri 22-Mar-2019

Woke 4am, gave up at 5am and here at work 5:30am

Desperate loo messages then all that happens is a pencil eraser size bit of poo + fart. That’s it, just exactly what was SO desperate?

A couple of hours later, similar milder messages, a bit of patience sitting waiting on the loo (where bit can mean 10 minutes) and all is well in the bottom cleansing department.

There is no rhyme nor reason for the variation. Maybe there never was and I’m now “obsessed” so notice it, …

So, stop obsessing Bean it doesn’t matter – it does if you are driving or in a public place and trying to find a loo is a major problem only to find – no need, but knowing that quite the opposite could be true and that REALLY is a problem.

Postscript

The potential impact of impact on drug supply, indeed NHSA treatment in general is not a theoretical concept for me now, it is real and it is here. I am NOT alone. There have been warnings about this since Brexit was first mooted. Has effective action been taken, has it heck. So, if you voted for Brexit is that “really” what you voted for? I doubt it, no matter which side of the fence, most people are reasonable, albeit sometimes frightened,

But this is the real world and it’s not a game and I am all right might work if you truly are, but an awful lot of people are NOT all right and I did not vote for ANY government that would be this incompetent (no matter the party-political flavour). Oops yes, I did, and I have voted for all three of the “major” players over the years. Their level of competence has not really been any different, different sorts of incompetence for sure, but overall, nope, …

As for our old friend poo, well, it trundles on its own sweet way, taking no notice of me or the trouble it causes. Bit like the government really 🙂

Post-Postscript

You’ve seen pics of the detritus after I have portioned out my drugs, this is what a weeks supply looks like:


The cancer drugs are the two large pills in the centre compartment. ALL the rest are to deal with the nausea, blood pressure and muscle spasm issues that are side effects of the cancer drugs. Add on the extra drugs I take to control diarrhoea and constipation which I take “as needed”, the pain killers, and the new “blue pills” (to be taken as needed 🙂 ) and it’s not a small cocktail (though I know some have a much larger load than me).

That’s why I worry about drug supply issues, it’s not just the key drug but all the others necessary for me to be able to take the cancer drug and (literally) survive the experience (the BP issues alone would kill me if not controlled)

AND they need to be in balance, the anti-nausea drugs increase the risk of constipation others can increase the risk of diarrhoea, as does what I eat. Most of them affect (make worse) the fatigue.

I walk a tightrope and when successful I have an acceptable quality of life (albeit not at all what it was), when I slip, it’s really quite unpleasant. I’ve had the BP meds go wrong a couple of times and it is very scary, you know the difficulty I have with poo. The nausea is usually OK but I take strong drugs every day to keep it that way.

I am NOT alone this affects a lot of people, some more badly than me

“Ooops, we didn’t think about that” or “we hoped it wouldn’t be a problem” or (worst of all) “it’s not a problem” when it manifestly already is, is simply NOT good enough, especially given all the advice that it WOULD be a problem.

The Bean, Pendeen, 24-Mar-2019 5

The scan results are in and Teresa is poorly – 09-Mar-2019

Sat 09-Mar-2019 

A rotten night’s sleep, slept till about 1:30am and then the stormy winds down here in West Cornwall kept me awake. When you are as noise sensitive as I am, it’s impossible. So, all day I was totally exhausted. That was a problem because I needed to make “significant” (thanks Teresa May for destroying the meaning of THAT word, progress on the next task of my assignment due tomorrow. 

Needless to say, I did not make significant progress (hmmm no surprise in either sense) 

Also, I had bad diarrhoea (that’s what woke me initially) and had to take the second Loperamide of the night (the first was when I went to bed). Diarrhoea always knocks me out, today was a waste of time. 

Teresa has a cold/virus that has knocked her for six, so I went and fetched in some wood while the sun was shining to avoid her being tempted to do it because “but Bean you are poorly” 

Sun 10-Mar-2019 

Well, slept a little better and feel a little better, but it still took me an age to get moving 

I managed a sort of draft of the task and sent to Teresa then crashed out for my afternoon nap. After I woke up, she’d looked at it, I did some minor titivation and managed submission, it’s rubbish, but fortunately these three tasks are 0 marks, meant to teach us a particular way of thinking academically. I don’t think it works for me, but you have to try to be sure, so I am trying and struggling. 

Otherwise I have tried to take it easy as I can feel all the signs of my own cold (probably picked up from Teresa) and need to try to fend it off as it’s the last thing I need! 

Mon 11-Mar-2019 

Well, feel rough but OK to work, so working. 

Teresa thought she was better yesterday (I didn’t) she is worse today and has accepted the need to have another flump day (she had one Saturday, decided she was cured Sunday and guess what, she is back to flump today. I keep telling her we both have to accept we are no longer the spring chickens who “fought” through a cold. Now we have to be sensible. 

Tue 12-Mar-2019 

In office, all ok, but had to Sainsburys on way home as Teresa still very poorly, so by the time I got home – exhausted, crash and … 

Wed 13-Mar-2019 

Teresa would normally insist on going with me to get the scan results but she has a nasty cold/virus and it would have been wrong to take that into a cancer clinic where people are immunocompromised, so I was on my own for the first time. Just for a brief time I am the healthier of us! 

So, got CT scan results. Yes, there is still a large cancer load but it has neither shrunk nor grown, so status quo. We are happy with that. Onwards the next three months. 

It is so easy to see no change as goodness, but all that cancer sits there like a coiled spring, one moment of weakness from the drugs and it WILL escape its clutches and be back to growing like topsy. 

Back at the beginning over a period of three months, half of which I was taking the drugs and half not, the metastase in my shoulder grew by about 1cm (from a size of 6 or 7cm) so when it grows, it GROWS. 

So, it’s more like the car is in gear the engine at full throttle and the clutch pressed and someday the clutch WILL wear at and then … 

So, yes, I am happy with no change but I know what a knife edge I live on, Of course I am grateful for every moment but I cannot pretend this is a happy ending. 

I recall Teresa’s father, oesophageal cancer, slow growing, nothing to worry about, except it happened to grow into a nerve controlling swallowing, a week later he was dead. Do not doubt that left turn instead of right hits any of us at any time and “hope” wont’ change it, all I can do is enjoy and live today. 

Poo (in case you thought I’d forgotten 🙂 ) is normal today! 

I also got the results of that task for my assignment, apparently what I did was OK, so onto the next one. 

Thu 14-Mar-2019 

Morning was normal, even poo was 

… 

Had afternoon nap and woke up, still lying in bed, massive stomach cramp – I cried out in pain and had Teresa reaching for the phone and 999, it seemed to me to be the same massive pains I had in London late last year which were down to digestive distress.  So, I tried to explain that I didn’t think she needed to panic and kept talking as the pain crescendoed and then died down. All over in the space of a few minutes, but those minutes … The cramps eased, I started drinking my mug of tea and then quickly headed up to the loo. 

Oh no it says; I just needed a small fart. I knew better, we’ve played this game of bluff before and I waited, …, a few minutes or so later, “oh well, if you insist” and there followed a series of explosions and the truth was revealed and yes that pain was for an understandable reason. 

The cause, I’d had lentil and tomato soup for lunch, I knew lentils could be bad but, …, this was way beyond diarrhoea bad, this was frightening – all from a can of soup (probably)! 

Wiped out, but able to get work done, so plodding on. 

Fri 15-Mar-2019 

A reasonable day’s work, otherwise not much to say, fatigue as always, poo challenges, as usual, just a regular day in the life of dealing with (NOT fighting) cancer. 

Postscript 

Poor Teresa has felt awful for over a week now. Yes, it’s just the usual winter cold virus, but it seems to have been quite a strong dose and has knocked her more than she is used to. 

It has however given her a better insight into just how hard constant fatigue is, she struggled to be sensible and accept restrictions for a week. 

It  has given me the chance to look after her and make HER take it easy as opposed to here constantly worriting (a Teresa word) about me. That has been nice (apart from her being poorly that is!)

For me it’s a (rest of my) lifetime task to learn to manage fatigue and when that’s the case you aren’t fighting you are just accepting and finding your own path through it (same for poo, nausea, joint pains, …) 

The Bean, Pendeen17Mar-2019 

Scan results are close and fatigue – 02-Mar-2019

Welcome Home Bean!

Sat 02-Mar-2019

Angelique over to Firehouse for some investigation of new bed. Up at 6:30, exhausted. Called into M&S at Hale on the way home just for an “outing” (how simple are my needs nowadays!) and had a hot choc at Costa first. By the time we were finished in M&S it had only been an hour since we arrived on site (including Costa) and I was exhausted.

Upside I did find some nice simple “beach” shirts, long, lightweight “shirts” perfect with a cami and long skirt for the summer. They didn’t have my size but as soon as I got home, I ordered some.

Nothing done for the rest of the morning and nap.

After lunch I needed to move Teresa’s computer form our bedroom (where it has been while she decorated her office) into aforesaid office. No problem but that hour of crawling around was too much and I achieved nothing for the rest of the afternoon.

Got some work done on the assignment, but nowhere near as much as I hoped

Sun 03-Mar-2019

Got some work done on the assignment, but … well you know the rest of the sentence

Evening, Teresa out at an event, I had a total flump evening bed at 10pm when she got home and fell asleep while watching antiques road trip as my bedtime TV program and I do fall asleep to it 50% of the time, that’s why we watch it, Teresa likes it and I’m interested enough to listen but not so much I concentrate so can easily fall asleep. It’s a lot better than most of the stuff Teresa watches – Doom, misery, blood, death, mayhem, doom, death, more death, doom, blood, death, …

Mon 04-Mar-2019

Slept solid till around 3:30am and then quite well till waking 6:30am and up at 7:30am,

Work as usual, but staying on top of it

There has been a Parmesan type cheese wrapper on the worktop for a few days now, I check it’s not finished and move it next to next to the kettle so Teresa could sort it out (it’s her cheese, I don’t know why it’s left out). She moves it out of her way, I move it back, …

Teresa would say I should have said something, I couldn’t, I had no way to tell her

  • She wasn’t there
  • I would have come across (been) angry
  • I would be literally tongue tied trying to explain

Until tonight that is, I had to do something or throw it in the bin or at her!

So, I said, her reaction was I should have said. Whilst that is a perfectly reasonable NT reaction it is an utterly stupid one to this autistic, why would I communicate in language, I did communicate, I moved it, it’s a valid communication, albeit not one that works well with miss “pushy shovey without thought of consequence” as evidenced by her approach to delicate objects that subsequent are no longer delicate 🙂

I did manage to control myself although I was on the verge of a meltdown. I know how hard I have been dealing with this, a flippant (to me) response of “well, you should have said”, would in the past have automatically triggered my melt down and I would have been the bad tempered, argumentative, unreasonable one.

Teresa wasn’t deliberately nasty in any way and yet her unawareness of how this autistic was communicating was, at best, careless, she should know better.

This stuff happens between partners at the best of time, when one of them is autistic, a lot of the time. Learning to manage it is the biggest challenge Teresa and I face in our marriage (well nowadays me dying is up there too 🙂 )

Tue 05-Mar-2019

Into the office, though had to borrow Teresa’s car, still exhausted. Had some useful conversations about autistics and employment, including an excellent idea for my current assignment, can’t say what yet, need to keep powder dry.

Diarrhoea is confused today, just can’t make up its mind

However, slept for 2.5 hours this afternoon, I was that tired

If legs scare you, look away now!

Yes, I really do wear a nighty, though obviously with an apron when cooking!

I did manage to do Pancakes – barely, for the first time I had to ask Teresa not make the batter as she uses a machine and I do it by hand (I insist on doing it that way, it’s the way I always have and as an autistic it is the way I always will, routine rules!) and I did not have enough energy.

I did cook them all and Teresa and pigged them down (as you do!) I tried honey on mine but found that proper sugar worked better with the lemon, yet I prefer honey as a sweetener otherwise, odd, but my taste bugs are screwed up.

Wed 06-Mar-2019

Had a blood test at 8am this morning, except I didn’t, I was so exhausted that I forgot and had to ring up and grovel. The surgery were brilliant and I have an appointment on Thursday morning.

Angelique is ready for collection so quick dash over to Firehouse, discuss the new sliding bed plan and she’s due back in to have the work done around the end of the month – looking forward to it.

We also need to get some blinds sorted for her, I need to chase this up

We got back around 2pm and again I crashed out, becoming rather a habit this

Thu 07-Mar-2019

Quick dash over fop blood test – no problems. They have 4 working days instead of the preferred 5 to do the tests, so fingers crossed. I did have them done 6 weeks ago so reasonably current.

Tomorrow it’s another venesection (vampire session at West Cornwall Hospital) and hopefully that’s going to be getting my haemoglobin down to safe levels. I see the consultant in two months but I dare say at clinic on Wednesday there will be the results after the first three bag fulls!

A lot of stomach cramps this evening but no poo despite Teresa’s “poo” lasagne, still I feel gurgling’s so maybe it’s following its natural course and I’ll be dashing upstairs in a few minutes time (it’s 8:45pm)

Yup!!!

Fri 08-Mar-2019

Venesection was no problem, it’s an easy peasy process but yet any medical procedure, no matter how trivial seems to knock the stuffing out of me.

Poor Teresa is rather under the weather but still went to collect her new car so the house was empty when I got back from the venesection and as you can see from the featured image the cats all rushed to greet me!

Exhausted – managed to get work, work done and crashed :-(.

Postscript

Only 3 days to results, no matter how laid back you try to be, the wait and the worry are devastating, you know it won’t change anything and yet it still knocks the stuffing out of you. Still, it is worthwhile going through it so long as the news is good and it’s better to get bad news whilst there still may be time to do something (you hope)

Hey ho, onwards, …The Bean, Pendeen, 10-Mar-2019 

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