Letter from the North

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 

Fatigue and poo, a rough week – 16-Feb-2019

No picture today, it’s taking the last vestiges of my energy to get this out on time, sorry. 

Sat 16-Feb-2019

Teresa went shopping, I had to stay at home and try a get a first draft to the first task for my second assignment (yeah quite a mouthful).

The washing machine died and was old enough that replacing was needed – Teresa ordered a new one

We moved her “new” (but old in terms of years) desk from Kat’s room to her freshly decorated office. Found all the bits and I worked out what was needed to reassemble it – I’d had to do some disassembly to get it up the stairs, a task I could no longer do as I lifted it on my shoulders and it was incredibly heavy and unwieldy.

Anyway, know what to do and ordered some suitable screws and nails.

Sun 17-Feb-2019

The new washing machine is due today, the old one is surrounded by mess and it’s plumbing is as odd as the rest of the house so I wanted to make sure it could be detached by the delivery people (we paid extra so they took the old one away)

Well, apart from the fact that the cold fill has a red tab and didn’t turn off that was successful. Fortunately, the installation guys had a blank they could fit so only small puddles of water (I now have such a blanking cap!).

To be fair the AO guys were brilliant, and Teresa now just needs to work out how to use it.

Mon 18-Feb-2019

Spent some time with HR manager at work discussing my next assignment (on how the autism act affects employers and employees), late home so missed my afternoon nap. Not good was exhausted by 8pm and crashed out

Tue 19-Feb-2019

CT scan at 9:20am, so up I get. All went fine, but we know that contrast knocks me out for a few days.

It did. On way to CT scan we took both Teresa and my cars in for their MOT. At 4pm we went back to collect them and for Teresa to look at new (second hand) cars as she wants to change hers.

She identified one possibility, but we will return on Thursday for test drive

The Dyson vacuum clearer died, Teresa ordered a replacement but refuses to get another Dyson since the founder moved offices to Singapore (I think), I don’t like them anyway.

Wed 20-Feb-2019

We had friends coming over for a meal this evening. I offered to make my chicken and mushroom stroganoff, I did the basic cook in the morning so that the evening was a just the final warm through. Took me about 2 hours and I was so tired I had a nap BEFORE lunch. Then lunch and another nap. Did I mention fatigue plus the side effects of contrast?

Our friends arrived and we had a lovely afternoon/evening. The stroganoff seemed to go down fine as did Teresa’s pud.

However, I do know that the stroganoff will trigger diarrhoea. Pretty sure it’s the mushrooms in it that do it.

As guests departed, yup the stroganoff had worked, mushrooms I love them, but they are one of my kryptonite foods. Took a Loperamide because I expected “more” to come 🙂 . Later around 11:30pm after I had slept for a while, oh lots more where that came! Another Loperamide, the next few days are going to be tough as my body shuts down and poo disappears 🙁

Thu 21-Feb-2019

Bit of poo, but not much, however Burlington is looking rather listless and seems to have some bladder control issues. I saw it yesterday and we booked him in to see our favourite vet on Monday, however seeing him this morning I decided to act now and by 10:45 he was at the vets.

Looks like it was a UTI as I expected and he got antibiotics injection and pain killers. By the time I got him home he seemed a lot happier

Then down into Pz for Teresa’s car testing. She seems to have decided but wants to think about it overnight. By the time we were home it was too late for my nap (second time this week) and I was shattered and early to bed!

Fri 22-Feb-2019

No poo at all, starting to become concerned (still the case on Saturday so I had some of the left over Stroganoff from Wednesday, not much, but problem SORTED 🙂 )

We had a chat about Teresa’s car, and it was clear her preference wasn’t quite right for her and what she really wanted was the same as she used to have before the current car. A quick google and I found one at a garage in Bugle and whisked her over there. It was exactly what she wanted, unfortunately it sold by the time we arrived but an identical one is due in a weeks’ time, so she has put her name down against it.

Again, I missed my afternoon nap and I am incredibly tired.

Postscript

If ever there was proof needed that I need those afternoon naps this week ticked the box, yes I can, and do, manage without it, but there is a price to be paid and I need to make sure that recovery time is arranged.

Also, there is no doubt that the CT contrast (iodine) does knock the stuffing out of me, no particular reason why it should but it does. Maybe it is the load it puts on the Kidneys to excrete it? Nobody gives me a definitive answer but there is no doubt it does – whether I’ve had a tough or an easy week makes no difference.

Fatigue, it is far and away the hardest part of my current treatment, but so long as it keeps me alive, there is no contest!

Poo, well it’s just a fact of life, like breathing, though less fun, it’s the fatigue that is so hard to cope with.

The Bean, Pendeen, 24-Feb-2019

Away day and more masking – 09-Feb-2019

Thank you Rosie – one of a set of three lovely earrings for my Birthday back in January

Sat 09-Feb-2019

I have no idea what happened today! Clearly, I made no notes, we would have packed for tomorrow, but beyond that it was research for the next assignment.

Sun 10-Feb-2019

Up to Sheffield for my autism MA “away day” on Monday. Up at 5:30am, left at 7am. Stops for loo and drinks at Cornwall Services, Exeter and Gloucester where Teresa stocked up on all sorts of goodies. We arrived at the hotel outside Chesterfield 5pm ‘ish. It wasn’t a great hotel, I was fine but Teresa – well it was just too shabby (not chic enough!)

We ate Ok in the bar and by 9pm I was crashed out, an Ok night’s sleep but the dreaded diarrhoea still struck at some point during the night.

Mon 11-Feb-2019

Left 7:30am in the morning (no breakfast) and with some wandering around trying to find the building where the car park is in a warren of streets, half of which are no entry and/or one way. We managed, got the buggy out, the building the day was in was next door so not a challenge to find!

The Away Day Experience

Not the most flattering picture of me having breakfast!

Breakfast in the students lounge area for both of us and then off went Teresa shopping and off I went in the lift to the class room.

I wrote some notes on my experience for our cohorts private FB group, but they don’t seem to be a group who likes to discuss autism, not even really the study process, so I thought I’d move it here and change any names for privacy. So, if it reads a tad odd, it wasn’t intended to be part of this blog.

This is a course on autism, and I think most of the people on the course are not autistic. I thought this would be appropriate to share with the course, but I suspect it would feel like a “passive aggressive” criticism, so it’s here as just my opinion of my experience. There will be some repetition from what you’ve seen me write before, well, repetition is good and some people from the course may read this and not have read me before (really, there are people who don’t hang on my every word, I can’t believe it 🙂 )

So, to get started, whilst there is a posh term for it, in simple terms, I have no facial recognition at all (actually I have minimal visual memory of anything, that really means at all, I can see your face 100 times and it will still not be familiar – ask my wife!

I do recognise body language which is how I recognise Teresa (my wife), my children, …, I am sufficiently familiar with them that it is easy to do. Nevertheless, I have been on a training course with Teresa who was sitting on the other side of the room, nice and still and calm, no active body language and I had to think twice as to whether I knew the person because Teresa has the same sort of wild hair and glasses!

I also don’t remember names without a lot of effort, no matter how many times I hear them repeated.

So, how did I cope?

I was in a room full of strangers who I didn’t recognise from sharing the same room with for three days on our course in London. I didn’t recognise any of them outside of the room or if they moved from where they were sitting in the room. I had no idea who they were or what they were called.

I felt VERY alone. One person had arranged to sit next to me, which was wonderful and because they then came and sat next to me, I was pretty sure they were the person who I had been talking (via messenger) to.

One other person came over and introduced themselves with their name, thank you Fred (not their real name!). I think the same person unlocked the disabled loo for me downstairs in the café area, but it could have been a total stranger, so I am sorry if I knew them and/or it was you Fred, …

It is very hard to connect to people when you cannot remember who they are if there is the slightest break in the conversation. So, a classroom where communication is intermittent is impossible. I cannot remember who I’ve spoken to or about what. It is paralysing. I tend to focus on those I’m pretty sure I know and ignore everyone else because it’s just too difficult.

Do I want it to be like that, no, I don’t, I want to get to know my fellow students, but they feel distant and unapproachable. Maybe some of them are, maybe all of them are, I have no way to know. Maybe they think I am unapproachable, that’s why I am writing this blog to try and explain.

Have you heard of masking, shy people do it to try to cover up their shyness, autistics do it 24*7 unless we are in a familiar space with people we trust to be ourselves with. The self-confidence you may see in me is me making a superhuman effort to try to communicate in a socially acceptable way – that is incredibly exhausting.

It’s not just in that group, it happens to me in ALL situations where I am not with people who know me REALLY well.

However, I find it interesting and worrying that in a room full of people who want to know more about autism, many of whom work with autistics, that as an autistic I felt completely isolated by the “experts” around me and, as far as I can tell they neither realised not wanted to do anything about it.

Maybe it’s my fault for being a fellow student believing I am equal but different; and not a patient, pupil, patient, …,

Ok, back to normal Bean blogging

We finished around 3pm and by 3:30pm we had loaded up the buggy and on our way. We drove straight to Gloucester services (stopping briefly for fuel only on the M1) I probably should have stopped sooner that Gloucester, but 2.5hrs was not unreasonable (same as on way up). However, this time I wasn’t very well hydrated and this just dehydrated me more.

Got to Gloucester around 6pm and did loo, ate a pie and drank a cup of tea (not the biggest) and I stood to rest my tired bottom.

I wasn’t sure if I’d sleep there or not but decided to push on, optimistic I could get us home!

After passing Taunton Dean I started to feel I was probably tied underneath feeling fine (classic hyper which I notice I do when I get over tired) and decided to sleep at Exeter Services, not just stop for a loo and drink break. Boom, my body agreed and I was suddenly very tired.

We got to Exeter around 9:30pm, quick loo then duvets out and slept. Me better than Teresa. Around 1:30am I work up too cold (lots of mini wake ups before of course), so, loo, cup of tea and we got moving. I drank the tea about 15 mins later when it had cooled down (in a lay by of course!)

We got home around 5am, quick drink of water, duvets out of car and crash.

Tue 12-Feb-2019

I woke around 9am and got moving, Teresa was a while longer 🙂 , but she had slept badly at the services (but better in the car after we left Exeter!)

Diarrhoea in buckets, nausea too, as for the fatigue … the price to be paid for such a mad exercise.

Biggest problem was that I had been too careful about drinking so I would not need the loo while sleeping and then on the last 3.5hr stretch to home (Cornwall Services closes at 11pm). Bad move, I was dehydrated and I think that hasn’t helped me. It’s also a stupid thing to do when have damaged kidneys!

Wed 013-Feb-2019

Diarrhoea and nausea and fatigue continue but much easier than yesterday

Fighting Windows 10 fighting Windows 7 on the same computer.

Thu 014-Feb-2019

Still fighting Windows 10 fighting Windows 7, but winning by separating them so they never see other!

No poo, then severe diarrhoea and needing Loperamide again.

Fri 15-Feb-2019

Head down and getting on with work. No poo all day, diarrhoea as I went to bed, however avoided the loperamide.

Postscript

When I was a very awkward (autistic) student at (Sheffield) University 45 years ago, I still remember mixing with the students from my classes, not all of them, but enough that even for me it was sociable.

Spin forward to today and everyone seems, to me at least, more wrapped up in themselves. Is that a function of getting older (but some of them are much younger than me) or is it just a sign of the times. I wish I understood. The people at work are friendly, we chat, often “small talk”, but we do talk and where relevant about work.

So, why am I finding it so difficult with this lot. Is it them or can I expect it with all the students studying for the MA.

If a were a true (stereotypical) autistic I would love having no contact, stick to my own world and be glad no one wants to be social with me. I am autistic but it takes all sorts and I do want to be social, but they seem to gather into little cliques and those groups are impossible for someone like me to get past. I would guess it is the same problem for the shy folks there too?

I found the same on the counselling and other adult courses I have been on, so maybe it is something about mature students. Still, if I wanted to understand autism better, I would want to talk to #actuallyautistic people whenever I can (and I do), I guess that’s just me.

Postscript 2

CT scan on Tuesday and scanxiety starts, a 2 week wait for results, it’s going to be tough!

The Bean, Pendeen, 17-Feb-2019

Lots of jobs done, good assignment results and the terror of fatal farts – 02-Feb-2019

Happy Teresa at our 2nd Xmas dinner with my Son in January (see she isn’t always scary Teresa). Note the Orientals hovering on the chair next to her waiting for their lunch!

Sat 02-Feb-2019

Sorted out my old office a bit to get some stuff back in there from the annex after its new wood burner was installed last week.

Teresa was pleased she didn’t have to convince me. Ms honest autistic said, well I knew there was a microphone and stand buried in there and I wanted to get to them 🙂 – ulterior motivation!!

Of course, I would have done it anyway, but I may not have been quite so profligate with my limited energy reserves otherwise!

Started work on fixing the sticking sash window in Teresa’s office that was stopping her doing final bit of painting.

Removed the front pieces so could check out the lower sash and then the parting beads to get at upper sash – the real sticky one.

Sanded down sides of the top sash but need much more to stop it sticking sideways. Order hand held electric plane to do a better job, Teresa will pick up tomorrow while I nap.

Exhausted

Sun 03-Feb-2019

Put new door lock on door to old office to make it easier to airlock and keep the cats out – especially as we are regularly lighting the fire in the annex to help warm it up.

Got in some wood for the fire just before lunch – I prefer then as it can mean better nap – it didn’t 🙁

Teresa got back with the plane as I woke up, so straight up and got window planed. It seemed Ok until I put the parting beads in and then jammed again – had a good look and some interference on RHS of sash with parting bead, cut off the small protrusion and sorted. Top sash now works. Put in bottom sash and beading to hold it, being careful to not to cause it to stick and yes, two moving sashes. Teresa v. grateful and me knackered.

My digestive system not altogether happy so the smell in there was awful, even with the window wide open (no sashes present) it was bad. Bless her, Teresa never complained though I did apologise profusely and continually. No point being embarrassed, killer farts are what they are!

Over the weekend I have removed the disk from four ancient laptops (XP vintage) so they can be sent to the recycling centre. The disks we will get shredded (yes, it is a thing) or I will just drive a chisel through the centre of them! Easiest way of ensuring the data in the disks is really gone unless you are the security services!

We also identified in the office sorting a load of old paperwork that needs shredding. There is so much now from my history and my company (almost closed now, taken years to shut the blasted thing down as economically as possible) so think we will find a commercial shredding company and see if they can’t do the disks too. Be worth it for the saved effort and time.

Mon 04-Feb-2019

Just work, lots of slow testing, tedious but necessary. Lunchtime sleep was a solid hour, better than of late.

First assignment results are 3pm tomorrow. I feel more nervous about them than for the scan results. That might seem odd, but the scan is just information there is precious little I can do to change what happens, other than what I am already doing. The assignment I could have screwed it up in so many ways.

The cancer just is, the assignment is a test of me and my abilities (or not).

Had Pasta plus mushroom and sweetcorn, …, oh yes, diarrhoea triggered either the mushroom or the sweetcorn or both – Loperamide needed.

Tue 05-Feb-2019

Office in Penryn, all well apart from pea soup fog all the way there and back. I just trundled along but it’s amazing how many drivers are in such a hurry they were “pushing” me to go faster than I felt safe and when they got past disappeared in the fog until they reached the next vehicle and I caught them up, not saving themselves any time at all!

Results at 3pm, they actually came in sooner, but I was asleep! Apparently, I did much better than I expected to but all I feel is stressed! Because emotions and the sense of them is separated in time for me, I realise that getting the results allowed all the worry and stress from doing the assignment to actually come to the fore, so instead of feeling “elated” I feel “depressed”.

Until we (Teresa and I) worked out this offset in emotional feelings and triggering incident (sometimes months) my emotional reaction to apparently good or mild events was disproportionately inappropriate. Now we look back to find the actual event associated with the emotions. In this case it was easy, but sometimes it is very difficult to work out and nowadays we tend to make a mental note of something that would have been expected to produce an emotional reaction and look out for when it occurs so we can join the dots.

Just one more bit in the working out how to work with autism and not fight it.

Normalish poo

Wed 06-Feb-2019

Work, tired, normal, normal

Had Pasta plus mushroom and sweetcorn again, …, yes, diarrhoea but very mild (for me) – why?

Thu 07-Feb-2019

Work, tired, normal, normal

Had a Benecol cholesterol buster at lunchtime as a test, oh yes, diarrhoea triggered even before non-pasta tea

Fri 08-Feb-2019

Visit to West Cornwall hospital for a venesection (400ml of blood drawn off). Two weeks ago, it was a flog to Treliske, this time just down the road. They hadn’t got a set of scales to weigh the blood to check the amount they took but said, don’t worry, we know what the right amount looks/feels like, we’ll take a bag full.

I wasn’t worried, it is the West Penwithian way, until recently if there was a signed for package our postman just signed for it and pushed it through the door, saving us being disturbed. We had no problem with that.

This relaxed attitude to the “rules” is one of the reasons we love living down here, west of Hale. Dreckly can be difficult, but you just have to go with the flow, it is the way it is.

Now as an autistic you’d think I would be stressed by all this rule breaking, instead I find it refreshing because it means people are more accepting of anything, including diversity, and indeed they are, also I choose to be accepting of it and that makes a lot of difference, it is imposed change and rules that I struggle with.

I was fine with the blood letting but by the time I get home I was rather tired and washed out – either from walking around the hospital lost but more likely from the blood letting, last time it hit me once I got home, not fainting but definitely woozy and no more driving.

A goodish nap and yet more flogging at work 🙁 .

Postscript

The delay between a triggering event before feeling the emotions you’d expect to happen at the same time, is one of the lessons that Teresa and I learnt the hard way, but we worked it out and it has been a life server.

It also shows that the problem with autistics is not so much that we don’t always display emotion it’s just it takes a while to make its way out :-). That’s not a universal rule or indeed typical of all autistics, but it’s one that can easily catch you out. We found me getting really angry or upset over trivial things, whereas I was actually angry/upset over big things that had happened in the past and I’d not reacted to at all. Imagine how Teresa felt when I got angry with her for some trivial thing when I was really upset over some big deal last month (which may have bene nothing to do with her) before we worked it out!

As for the assignment results, I was genuinely surprised, but apparently saying so when you get a good result is “false modesty” asking for an (emotional) “stroke”, it really is neither for me, it’s just a fact. I can’t be pleased with the result more than I passed because the next one is here and I could fail that.

It’s the same with the CT scans, it makes no difference if this one is good (or at least not bad) the next one might be bad, so how can I enjoy the good one?

Hence, I just pockle on, not getting overly excited (some people think it’s bad/sad I don’t get excited) but nether getting overly depressed (a good thing for me, especially when dealing with cancer!).

The Bean, Pendeen, 10-Feb-2019

Assignment, masking and a total lack of poo – 26-Jan-2019

It’s easy to think Teresa is a pussycat but even this picture fails to catch just how scary she looks when she is concentrating, do not upset her!

Sat 26-Jan-2019

Assignment, assignment and assignment then referencing

Sun 27-Jan-2019

Last week I posted a picture of the leftover packaging after doing one week’s supply of drugs, well a week later and another pile of packaging, I feel like a mobile chemist!

More referencing, referencing and yet more referencing,

SUBMITTED

I can re-submit all the way up to my deadline on Tuesday at 3pm, but it is good to have something in.

Mon 28-Jan-2019

Work during the day and then this evening made the final submission. That’s it, what I get is what I get.

Mentally and physically exhausted, I expect the rest of the week to be tough.

Tue 29-Jan-2019

In the office in Penryn, no problems but it was difficult getting up and I left even earlier than normal to make sure I got back in time for an early afternoon nap

Wed 30-Jan-2019

Still slogging away at work, it’s all I can do, no time to blog, not even about poo 🙁

Thu 31-Jan-2019

A brief flirtation with the phlebotomist mid-morning for yet another blood test. Not a great experience

Doesn’t do justice to the bruising

I ended up being a pin cushion as she tried to find a vein that wasn’t one of the ones used for the contrast on my CT scan or for the vampires for my blood letting – also known as a venesection. in the end I had to let her use one of my “good veins” even though she was using a butterfly (a really thin needle).

Why do I worry? The venesection and the canula used to inject the contrast for the CT scan need good sized veins as they use a decent sized needle to get good volume. I don’t want one of those damaged by a simple blood test, so I protect them, probably over paranoid. But as you can see the bruising I get from failed attempts is not pretty!

I have a venesection next week and then CT scan the week after. The CT scan is particularly tricky because they can only use my left arm as the right one won’t go above my head.

Venesection is used to treat polycythaemia which is an excess of red blood cells, in my case caused by the cancer screwing up the kidneys production of EPO (Erythropoietin) and outs in in overdrive. It’s a case of the simplest solution is the best! Low EPO is easily fixed by giving extra, high is hard to turn off so they just dilute the red blood cells, simples 🙂 .

Fri 01-Feb-2019

Still flogging away at work, still no poo reports.

Postscript

This was yet another brief blog with little discussion on poo, have no fear, normal service will be resumed as soon as possible and in the meantime be re-assured there is still plenty of excitement!

On a very different topic, I’d like to discuss ‘masking’, a common activity carried out by autistics so that those around us do not realise we are, letting us appear (within limits) to be what non-autistics would consider ‘normal.

When I went to see the haematology consultant last week, he said words to the effect “you don’t look autistic, you make eye contact and talk normally”.

I replied, “I am a good actor” and that is what ‘masking’ is, it is acting differently to who I am so it’s easier for others.

I don’t suppose anyone in that clinic would have coped if I’d hidden in a corner, not engaged with anyone and spoke in monosyllables. Why does that matter, because I need their absolute best to ensure my care is the best I can get. They are all human and with the best will in the world, they react better to a light touch with humour than how I would usually come across. Teresa often says I am an outstanding charmer when I ‘turn it on’, that is when I turn on the masking (not the charm, I am always charming 🙂 .

I have learnt that because I (not all autistics do) want to engage with the world around me, I need to manage my autistic needs so that I can relate to people in the way I would like. However, it is a tightrope, because people don’t realise how hard it is and the toll it takes on me.

I have discussed this before and it’s a price that is worthwhile for me because I like to engage. The other side is that I also need time in isolation to recover, plus I also need time to just be me which means that people used to seeing the chatty me think that I’m being off in some way when I suddenly stop and appear morose, distant, …,

Who do you think gets to see the most autistic me, yup Teresa, is there any doubt that despite all her foibles, she is also a saint? Well not really, I can’t say that, she reads this blog and I wouldn’t want her to get any more sure of her perfection than she already is 🙂 .

To be fair, in the medical world, where I need their best to ensure that we keep the cancer at bay for as long as possible, it is more important to me to ‘live’ than to be recognised as autistic. So I mask like crazy AND have Teresa with me to help smooth over the cracks.

Elsewhere in my life I am not so reasonable as I realise that my constant masking is not good for me and it doesn’t help others realise I am autistic and that autism is quite normal and healthy, just different.

As a final note “you look great” when you know you have ‘life limiting’ (terminal) cancer, is about as helpful as “you don’t look autistic”. I may look OK, but I feel crap, I just hide it well!

I know people mean well, but actually they do need to try harder to meet me on my ground don’t they?

Postscript2

I have joined the weird world of twitter as @beanbottomley, I have no idea what I am doing and only speak if I have something to say, but please finds me if you want to.

The Bean, Pendeen, 02-Feb-2019

Assignment takes over – 19-Jan-2019

Sat 19-Jan-2019

Burli and Jane are happy with the new bed

Sat 19-Jan-2019

In the office by 7am, finished first draft of last week’s blog ready for publication tomorrow and now time to get on with my assignment, these next two days are crucial for me to finish the first draft and start editing as I only have 10 days left and six of them are work days when I only get an hour or two at the end of the day when I am most tired!

Pretty good work on the assignment, it is slow, but I am getting there.

Moved my assignment work to the DSA laptop, which is what it’s for, leaving my work computer for work.

The two computers are on opposite sides of the office and I just spin my chair across the room, it’s like two different worlds and, I think, psychologically helps put me in assignment mode.

I also now produce the blogs on this computer which is nice

Diarrhoea was bad again this evening, however after normal poo in the morning and two, increasingly severe sessions this evening, it settled down once I was settled in bed.

Sun 20-Jan-2019

And normal poo this morning!

Every week I count out my various drugs, sorted into days, this is the typical weekly detritus in finished packets, the packets vary, the number rarely does!

Drugs, drugs, nothing but drugs

Last week’s blog has been released and I continue with the assignment

Mon 21-Jan-2019

Awards do matter because they help raise visibility, of course there are a heck of a lot more people who deserve awards who are not in the public limelight, but hey, it’s an imperfect world (says the perfectionist!) Richard Bacon: Why Rachael Bland podcast award matters

I need a clock above my desk, without one I have no idea of time at all, NONE, you cannot understand what none means, it could be am or pm, it could be 2pm or 10pm, I have no idea. Yes I can look on the computer but I hide my taskbar for space and it’s really small print and it’s not just a glance and I can glance every few minutes because a minute and an hour feel the same to me in terms of a sense of time passing. I have written and talked in the past about my sense of time, effectively ALL time (past present in future) is now it’s simply a matter of what I am considering at that moment.

I like to glance and see and I find the round clock face easy to “see” and I can tell where in the day I am (so long as I remember morning or afternoon, and since usually I am working during the day and if in the evening it is for a limited period (7pm to 9pm) I can usually remember when in the day I am!

However, I now a second desk opposite side of the office and no clock in line of sight, stupid as it sounds, a second clock is on order, a different colour so I know where in my office I am – yes, I lose track of that too!

Today, I bought Teresa a new (and decent) laptop. She has been lusting for one and she does so much for me for so little. I subsidised her new PC to make sure she got a more powerful one because she always clogs her PC up with google chrome and loads of tabs and “stuff”.

The money came from the money I got paid for the Contra which is supposed to be money for me to “enjoy”, well, it is being used for that, because I get pleasure out of doing something nice for Teresa and a good chunk of what’s left will be used to upgrade the campervan which (for now) is for both of us.

Tue 22-Jan-2019

Been in the office this morning, then sleep.

7:15pm, don’t want to go back to assignment, but decided to get one idea into the document, half an hour, easy?

Nope, word decides that it will refuse to work, files corrupt, work lost, total fuck up. Still got what I had before 7:15pm but even so.

Ok de-install office365 and re-install – annoying but fingers crossed.

Not stupid all my work is stored on a backup disk AND in the cloud and hence also on my other computers – belt and braces!

So, turn around whilst word is re-installing and my saxophone goes flying across the office (3’ so no short distance) no idea how I knocked it.

I snap, the only thing I can do to stop myself smashing things (sax through the new laptop, …) is scream loud and long and profane. It worked, I kept control, in the past I would have actually succumbed to melt down and I WOULD have done just that (sax into laptop) and to hell with the consequences.

So, now the anger and stress are coursing, adrenalin pumping and I have to keep in control, not get cross with Teresa (hardly her fault!!!!) and from past experience days for stress to go, I only have ONE day to get assignment to Teresa for editing to make the deadline in a week.

Panic, …

Wed 23-Jan-2019

A surprisingly decent nights sleep

Poo, diarrhoea, the story remains the same.

Buried in the assignment as I have six days to finish and the first draft is not close to being ready

Thu 24-Jan-2019

Will be buried for the rest of the week (and weekend) in the assignment so unless it’s earth shattering it won’t appear here.

One thought is how exhausting the mental processes are to do this, I am literally physically and mentally wiped out. I know what this sort of writing is like I did it evenings and weekends for a year in a caravan away from home. NO problem. It might be a few years later, but no way outside of the cancer and drugs has my stamina wilted that much.

Still, I am learning all of the shortcuts and techniques I need to stay on top of the 2nd assignment, it’s just a shame that the 2nd starts as soon as this one finishes so I get, at best , a week’s break and even then I have a trip to Sheffield to start it and that takes out a good chunk of my life in recovery.

Oh well, swivelling chair and back to the assignment, toodly pip, …

Fri 25-Jan-2019

The blood has gone, so no need for squeamishness (this time)

A trip to the Vampire today, because the renal cancer causes my kidneys to generate too much ‘epo’ (Erythropoietin) that causes my bone marrow to produce too many red blood cells, I end up with a high haemoglobin in my blood tests (I’ve talked about this before). The problem is the blood thickens increasing the risk of blood clots, stroke and liver damage. So, time to get it down. The answer appears to be good old-fashioned bloodletting! They take out blood and since the volume is replenished quickly but the red blood cells slowly, I get dilution and a normal, or at least a safe, haemoglobin level.

This morning we saw the haematology consultant at Treliske. Arrived an hour early because I am paranoid. Saw him an hour early! He was brilliant and the blood letting commenced.

Because I take a lot of drugs to control my blood pressure, instead of their usual 450ml (0.8 pints) they started with 350ml (0.6 pints). I didn’t faint (lowered blood pressure) so chances are they will up the drain more next time.

Brilliant, future sessions can be done at West Cornwall Hospital (like the CT scans) AND I can see the consultant there as well as he comes down alternate Tuesdays.

The NHS at its best.

So, had a blood letting today, another in two weeks, another two weeks after that and a third a month after that and then we’ll see. Chances are this will be a regular routine but not one that bothers me.

That said, when I told him I was autistic he said I didn’t seem to be, I maintained eye contact and communicated well. I replied “I am a good actor”! We had a brief conversation about how what he heard me say may not be want I meant and I what I heard him say may not be what he thinks I think it was. That was why Teresa was there with me to handle the translation if I failed, I didn’t, phew!

Back to that assignment, bye, …

Postscript

The announcement of these blogs is private to my Facebook friends, the blogs themselves are public if anyone wanted to find the web site (they don’t 🙂 ).

So, I decided to enter the world of twitter, I am an incredibly small minnow, I have no desire to be a “star” but if you want to hear about stuff a bit sooner or get announcement of the blogs sooner or just want to see me there I can be found as @beanbottomley – you can’t miss me, I’m the one with one follower (Teresa 🙂 )

Oh, don’t worry I may have been pretty quiet on the poo front, it hasn’t, I just have the assignment on my brain at the moment and nothing else matters. Normal service will be resumed next week.

The Bean, Pendeen, 27-Jan-2019

Fatigue, poo returns and a birthday – 12-Jan-2019

Burli looks cute when asleep, but this picture taken by my son shows him “appearing” to be bright and alert, oh how the camera lies 🙂

Sat 12-Jan-2019

Being stupid after the exertion of yesterday I decided to make my Delia
ragù (I’ve talked about it before). This was in the time before I went off to the station to collect my son.

That was two hours of standing, I was shattered and after collecting him it was a quick lunch and to bed.

On waking, I avoided doing anything and had a bit of natter and gave son his Birthday presents.

Absolutely normal poo during the day, however after tea, diarrhoea quite bad – why???

Sun 13-Jan-2019

Normal poo, hmmm!

Today we moved daughter’s old sofa from the shed (so it could be collected by the council, like the sitting room sofa). It was a bucket brigade process to get access to the sofa as it was blocked in, we got it out, onto the drive (with Fridays Sofa), then all the stuff back.

I am already past exhaustion, but we also needed to get a set of draws from my office – not used since before we moved to Cornwall. Rather heavy so we needed to take out all 24 draws (only 6” or so square and 10” deep), carry the frame out to the drive and then put draws back in. Son and Teresa did all the heavy work, but I still had to do the spatial aware bits (with sofa too) as they can’t be trusted not to smash into fragile stuff!

Within half hour of putting out the draws there was a knock at the door and someone wanted them – excellent, off to a good home rather than council recycling wagon.

I am so far past exhaustion it is scarey.

Diarrhoea again, not severe but defo present – this was after 24hr pork (my son’s constant request for Teresa to make) which included Brussel Sprouts – green so probably the cause but it was not too bad.

However, for the last TWO days no Benecol yoghurt drink, so I think that’s a contributor, will pop it back into the menu today if I remember and see what happens!

Today was (delayed) Christmas day with son, which was nice.

Mon 14-Jan-2019

Constipated all day, the same tea today as yesterday, whoosh, that was not the last such visit during the rest of the day, the big D is back! Additional sessions at 2am, and in the morning and at work on Tuesday and when I got home from work. The big D is definitely back!

Tue 15-Jan-2019

Woke up crying again, that’s the fourth time I think in the space of 1-2 weeks, there is clearly a message but …

Totally exhausted, the fatigue is bad, is this the weekend with the Sofa’s, …, catching up (well it had already caught, but staying caught) with me?

I got home from work and didn’t know which way was up and went to bed. Early tonight as well. Poo? I was too tired to remember.

Wed 16-Jan-2019

Well, you’d think this would be a happy day, it is after all my 64th Birthday. Surely, it’s great because a year ago there was no certainty I would get this far.

Yet, I am here, but there is less certainty that I will make the next.

Last year my main memories are of worrying about the cancer and some symptoms from the drugs, mainly taste. However, the major problem was the massive pain I was suffering and the lack of use of my right arm.

A year on, the shoulder is a constant nag but not a major issue, but the drug side effects/cancer, that is so much worse.

My abdomen feels like a punch bag, sometimes pain, more often a deep ache just shy of pain. The fatigue, god it is awful, worse I’m not tired (as in sleepy) but I am so exhausted I cannot do anything.

So, is it a good day, well any day I am still here is a GOOD day, no question. Am I pleased to have made it, you bet I am. Do I feel positive about the future, no I don’t. The chances are I will make it a year (but it’s a long journey to 2020, to be able to hope for that much), but the cost to my body and will power of that year, that bothers me, it’s been a tough year to get here, I cannot imagine next year being any easier.

Even if Paz continues to be effective, the side effects accumulate, it’s like a poison building up in your system, indeed that is exactly what it is, a poison, just hopefully a sub-lethal one to Bean’s and a lethal one to kidney cancer cells?

I am more likely to cry today (within drops as I write this at 7:15am) than laugh, but at least I have the option.

On a (not) lighter note 🙂

After the accident the NFU were pretty good in settling the claim for the loss of the Landrover. They also pay for a legal companion to pursue a claim for compensation. Now considering that, over a year on, I have limited use of my right shoulder, ongoing pain, the driver was prosecuted for driving without due care and attention, …, that a reasonable claim would not be difficult.

However, the legal company appointed by NFU appear to be useless and over the space of a year have managed to achieve very little. I will (probably) get something, but considering what I went through, a derisory amount.

I am the point of having to consider alternative legal counsel. I don’t want to do this, but right now I need a decent second opinion, so if anyone has any suggestions for a professional solicitor who knows what they are doing and is not going to try and fleece me, I would like to know.

11am and back to bed, too tired, had to take the day off sick

Lunch stilton puffs then back to bed again

Up around 4pm and over to the North, on my own for 45 mins doing some referencing for assignment. Then Teresa arrives then son. Two halves of tribute (no PJ) and a Chicken and Scented Cumin curry (mild as I don’t handle even medium any more) All very nice. Felt like people had missed me which was nice especially considering what an oddity I am in that world. Of course, some just ignore me, but that’s fine too, I ignore them 🙂

Poo been too effusive today, carrying on from yesterday, constipation a distant memory.

So, staying off yoghurt and Benecol and see what happens.

An awful lot of hot/cold flushes, flipping sometimes every few minutes

Thu 17-Jan-2019

Up a bit slower today and nearly 8am before getting to my office, however I suspect I am going to have to lose today as well as I still feel very tired (indeed I did, that’s a second day off sick).

This fatigue is really tough to handle, I guess the body is using a lot of energy coping with the drugs and the cancer and it doesn’t have much left for Bean!

My DSA laptop and gear is due for delivery today, no use for this assignment but hopefully for the next one (that starts in the beginning of February!) and assuming I manage to complete AND then pass this one.

Tried to sleep at lunchtime as I still feel exhausted, but apparently, I have used up my ration of sleep 🙁

Fri 18-Jan-2019

Well, not only did I not sleep yesterday lunchtime, I had a lot of difficulty last night too, it was well after midnight before I got to sleep and even that was poor. I was up at 4:45am to tale offspring to the station and I reckon no more than 4hrs sleep total in 24hrs.

Surprisingly I was alert, well functional as in my brain was working, I still felt physically tired but have remained alert. I did manage a 1hr nap this lunchtime.

This fatigue and how it feels like needing sleep even if I’ve had sufficient sleep for my body is really tough.

First, I have to judge if I need actual sleep and make sure I get it (hence the afternoon naps), BUT, I also need to recognise when it is just the fatigue and push on through and I ALSO need to recognise when my brain is no longer functioning well and stop and rest even if I don’t need (and can’t) sleep.

Postscript

What can I say, it has been a tough year and the next will be much tougher, this staying alive lark is hard work, important, but I now realise just how much we (certainly I) take for granted the simple task of living – never mind all the extras we do on top of just staying alive.

No longer, …, my primary task each day is just getting my body through the day, everything else, even just being with Teresa, is icing on the cake!

The Bean, Pendeen, 20-Jan-2019

Confused Poo, back to work and assignment challenges 05-Jan-2019


The new bed, not as exciting as a pussy cat, but, …

Sat 05-Jan-2019

The decorations are off the tree, but since 12th night is not till midnight (please don’t correct me, all I know is that after midnight, Christmas is gone) Teresa has left the tree lights on till she goes to bed (before midnight), when she will turn them off for the last time, everywhere else is stripped bare. 

Spent all day sorting out migrating Outlook from Teresa’s old to new computer – eventually done but a nightmare and took out any chance of assignment 🙁  

Sun 06-Jan-2019 

Normal poo again, this is downright bizarre! 

Yesterday evening the lights were on, today I took the lights off the tree – why me, because that way they will not be tangled when they go up next year. Mrs “push and shove it” has a less managed approach to packing away the lights BUT she then asks me to untangle them next year. I put a stop to that last year and this year, no tangles, “so there” 🙂 

Then tree is out of its barrel, unclamped from its stand and free of its granite blocks (anti cat push over tree devices)  and out by the bin for the council to do it’s recycling thing

At the same time Ikea delivered my new “day bed” to replace the sofa I sleep on, we have accepted that’s how it’s going to be so I need something somewhat more comfortable (and longer). Tried it at Ikea in Exeter when we went there and it seems to be the best (and most robust) option. 

Delivery went like clockwork, though their Satnav took them to the North Inn as it always does 🙂 

Wiped me out and I’m now in take it easy mode. Finished my Christmas cake 

Had a Benecol (yoghurt drink thing with anti-cholesterol characteristics) with lunch, first time in ages, see if my friend diarrhoea returns 

Nap as usual, then more work on assignment, tea and more sorting out Teresa’s computer – this time Email addresses. 

All done, some more normal poo and then crashed out. 

Mon 07-Jan-2019 

Awake early, worrying about the assignment, I am going to have to request an extension, I don’t like it but I cannot complete it this week since I am back to work. It is also such intense work that I can only really do a few hours (three MAX) before it wipes me out 🙁  

So, here in my office, back at work at 6:05am! 

A good day’s work, managed my 7.5 hours and then some work done on the assignment. I did end up asking for a two-week extension to the assignment, hated doing so and need to make sure I deliver the goods, but 3 weeks is better than one week before submission! 

Poo, ah there’s a story, no action almost all day. Had Benecol drink at lunchtime, nothing, had Teresa’s turkey pie for tea, much the same as her turkey stew (form which the turkey came 🙂 ) plus mushrooms. 

Now, was it cumulative Benecol? Was it the mushrooms (something we have suspected for some time) or was it the broad beans that I had, “confident” that since things were so blocked up, a bit of veg could do no harm? 

I don’t know, all I know is that just before bed I “tried” and managed something close to normal, so far, same old same old as of late.  

Downstairs for 10 mins and nope, urgent messages and full-blown diarrhoea. Back downstairs, laid in bed and yup you get it, another missive, … 

Early hours of the morning another message and … 

Tue 08-Jan-2019 

Things are quiet now, some cramping but nothing happening because I suspect there’s nothing left? 

At work in Penryn 

Afternoon nap and then working on the assignment – hard work, but getting there. 

No poo whatsoever yet, is that because my system was scoured out yesterday or is it back to its default behaviour. I know I feel uncomfortable but is that just general abdominal discomfort courtesy of paz (muscle and joint pain) or is it digestive discomfort due to constipation as opposed to that from diarrhoea? Drives me nuts (and stresses me, trying to work out what is going on) 

If I stay “bunged” I will try adding veg to tomorrow’s tea and see what happens! 

Well just before bed, normal poo, but despite a lot of “gurgling”, no explosions, starting to really suspect those broad beans. But had no Benecol yesterday so must have that today but no veg. I could be anally (ha!) scientific about this, but despite all appearances to the contrary I’m not and try not to obsess on what I can and can’t eat and do the one change at a time, as much as anything as I suspect it’s a complicated (more than one factor) problem 

Wed 09-Jan-2019 

Slept ok, for me, but awake at 5:15am and her at work by 5:45am – saving that 1hr drive (each way) plus another 1/2hr of getting shaved, dressed, sorting lunch, …, easily gives me an extra 2.5hrs a day of work, with my fatigue that is a blessing! 

Ah, all change, no poo, no poo, normal poo, severe diarrhoea, well that’s my morning “sorted”, no idea what’s going on now! 

Thu 10-Jan-2019 

Not a lot to say, poo is normal which “should” be a good thing, but I worry. Despite having the same curry (frozen) that seemed to trigger diarrhoea when first made and having Benecol yog drink and yoghurt with tea, nowt going on in the poo department. 

If today stays benign may try some more broad beans this evening and see what happens, it is driving me nuts, are my problems food related or not, well, they seem to be, but there doesn’t seem to be a totally reliable pattern! I know it’s made worse because the anti-nausea drugs tend to cause constipation and fruit and veg are massive triggers, but … 

Fri 11-Jan-2019 

In office 6:45am, later on will move out our old sofa and build the new Ikea day bed and hope it works as well as I thought it was going to. 

Work is going well, assignment is OK, but I am shattered and know I need a break – I just don’t have time for one yet I must have one as my body cannot cope with this beyond today, so a quiet weekend, which ignores all the jobs Teresa has backed up for me 🙁 The idea that fatigue can be impacted by mental effort MORE than physical effort is not one I find it easy to get my head around! 

Well, I got the Ikea bed made (see the pic at the top of the blog) looks like a hospital bed but we already knew that, jury is still out on comfort, but that’s to be expected, it’s different. 

Managed to take out the old sofa – the old route in via sitting room door and over the fence was out of the question for Teresa and I, even with support from son who is visiting on Saturday for a few days. So, I made the decision to cut off the bottom 6” of the old sofa and that was enough to get it out of the sitting room and through the front door. In the end half an hours work but probably another half an hour of stripping off the covers, inspection and analysis of the problem – oh and having the right tools and applying some brute force rather that elegance but done 

I am totally wiped out, especially since I didn’t sleep well at lunchtime on the new bed. 

Poo, well, just before tea I threatened if things weren’t moving for the first time today then since we are having Teresa’s chicken pie for tea, I would add the portion of broad beans that got things moving the last time! 

It heard and absolutely normal poo, so no broad beans. However, the mushrooms (a known but less aggressive antagonist usually) did their stuff and full-blown diarrhoea a couple of times, but settled after that. 

Clearly there is an issue with what I eat and slowly we are teasing out the culprits and what exacerbates what, 

Postscript 

A relatively quiet week, but it’s clear that not much physical effort wipes me out, but also wipes out my brain too (and indeed vice versa), this fatigue is tough, the toughest part of the treatment (for me).

On the plus side I managed a full week of work at my (current, drug induced) best and it’s a couple of months since I was able to do that. Plus I made good progress on my assignment, not great, but enough to feel that given another two weeks, I can hand in something that might scrape a pass and that’s good enough for me 🙂

p.s. WordPress decided that this blog should be entered in it’s new style block editor, which I cursed last week (I think) but so far it is behaving itself, fingers crossed that any subsequent efforts are as painless!

The Bean, Pendeen13Jan-2019