Month: May 2019

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

The last fire of the Winter?

Sat 04-May-2019

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

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

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

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

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

It wasn’t

Sun 05-May-2019

Totally blank, don’t recall anything

Mon 06-May-2019

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

Though I am pretty sure there was some Loperamide activity!

Tue 07-May-2019

Into office in the morning – feeling very tired

In the afternoon a vampire session:

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

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

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

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

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

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

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

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

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

I went to bed and crashed

Wed 08-May-2019

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

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

Thu 09-May-2019

Normal poo,

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

Fri 010-May-2019

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

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

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

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

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

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

Postscript

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

The Bean, Pendeen, 12-May-2019

Sat 11-May-2019

Some assignment done, not much.

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

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

Sun 12-May-2019

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

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

As for the poo (Poo Emoji here)

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

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

Sorry,

Bean

Mon 13-May-2019

Went into the office to discuss assignment with HR manager

Home and crashed

Tue 15-May-2019

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

Wed 15-May-2019

Again, worked on assignment, think I am there

Thu 16-May-2019

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

Fri 17-May-2019

Crashed out

Postscript

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

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

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

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

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

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

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

Oh well, …

The Bean, Pendeen, 19-May-2019

What can I say? Vampires, fatigue, constipation and diarrhoea – 27-Apr-2019

Cutey pie Burlington in the sun on my bed

Plus, the problems of opioid addiction and how easy the trap is and how your doctor colludes with the drugs!

A day late, but I had to get the first draft of my assignment to Teresa before I could have the fun of releasing this blog. I did it!

Sat 27-Apr-2019

An ongoing poo tale from last week. Another softener at 3am and another with breakfast.

A small amount of movement but not enough, time will tell.

Constipation is as bad as diarrhoea, both “stink” 🙂

No Porthleven food festival visit this weekend as storm Hanna leaves it too cold and windy especially when sat on a buggy without exercise to keep you warm!

Hmmm, a bit later and normal, albeit soft poo, go figure!

And again, this afternoon

Clearly on a roll so for tea poo curry without Loperamide, not wanting to repeat Thursday/Friday.

Will I regret this?

Sun 28-Apr-2019

More soft but normal poo, albeit urgent this morning

Starting to look like high carb low everything else diet is OK. Last night I had the poo curry as 200gm rice, 100gm curry which equates to a 4:1 tablespoon ratio. Not massive flavour but OK and bowels were almost normal – will try the same today and see what happens!

Article on BBC News Web site an article on addiction to opioid pain killers.

I took a synthetic opioid (Tramadol) for about three months after my accident even though I HATE taking pain killers – Teresa will confirm, I dislike taking paracetamol! So, taking increasing doses of Tramadol distressed me, however the pain was unmanageable (I was also taking the max dose of Paracetamol as well!)

As soon as I thought that maybe the pain was easing I went from 150mg to 100mg in a week and 50mg a few days later. It was when I stopped the final 50mg I discovered what addiction was.

I was fortunate I did not get a “high” from the pain killer so I wasn’t suffering from that sort of dependency, however my body was physically addicted to it and I spent a week going through hell coming off it – appalling sickness, diarrhoea, depression, paranoia, pain, …

After that week, the withdrawal had eased and the pain had not arrived so I tailed off the paracetamol and since them I have occasional used pain killers but never Tramadol.

Now my GP preferred Tramadol to natural opioids because it was less (“almost not at all”) addictive. Well in terms of “highs” it probably wasn’t, but later research by me confirmed that physical addiction is very real and coming off it very difficult. I was lucky it was only 3 months and I have such a powerful aversion to pain killers that I was highly motivated to succeed. I can see why people would struggle, especially oif they have had even higher doses for longer.

Soft but normal poo a good day on that front, a rotten day for fatigue

Mon 29-Apr-2019

Fatigue continues to be the new poo :-). Poo is “loose” as Teresa says, but not nasty (well not until the time of writing when there is some abdominal cramping 🙁  )

A decision to be made about poo curry for tea, going to chance it without Loperamide. But increase the amount of rice and decrease the amount of curry. That has worked with other meals in the past.

Work today has been tough, fatigue is draining.

Well I wasn’t clear of the big D and an attack this afternoon, but I’m still going to avoid Loperamide unless there’s one more attack and then I will have to take some, to ensure I am OK for work and hospital tomorrow.

Tue 30-Apr-2019

Office in the morning as usual and then an appointment with the Haematology Consultant at West Cornwall – he comes down from Treliske once a fortnight, so the patients don’t have to travel so far. So much more enlightened than the Oncologists at Treliske!

Still at least I can see him and have the venesection in West Cornwall, have CT there and blood tests at the GP. Means I now only really have to go to Treliske once every three months for the cancer clinic.

Results? The haematocrit (volume of red blood cells) is coming down, not yet at his target value so more vampire sessions booked. My iron level is also dropping but he says he wants me to be a bit “lean” on the iron levels, I never thought to ask why! I was on my own, so struggling, as always, to understand exactly what I wanted to say in time before the session was over – I failed, again!

Wed 01-May-2019

An OK day, poo, well it almost was OK and then I had a meal that is best described as sausage, tomato sauce (with Passata not the Heinz one!) and pasta (twirls as I call them fusilli as I think the fancy name is). I’d requested this from Teresa, and it should have been benign in the poo department

quick All was normal until later that evening and then then two attacks in succession and a Loperamide and then a 3rd at bed time and a second Loperamide. Wow, that was totally unjustified based on my diet.

Addendum: it is becoming clear that food effects can take a day or so to travel through my system so a bad day today “can” be as a result of yesterday and or the day before.

So, todays meal may have been OK on its own but not on top of the previous day(s) meals?

Hmmm, this is going to take some thinking about but as a theory it could explain some things!

Thu 02-May-2019

Hmm, off to Swindon to visit a new expert for the accident compensation. This one should understand both orthopaedics and cancer and so not get confused and think the pain I have is because of the cancer (I don’t have any mets in my bones, just lymph nodes)

Even after two loads of Loperamide my body managed a bit of poo so I guess last nights meal was potent stuff or my body was just having a strop – it could be either or both!

A slog of a drive and unsatisfactory visit, but we will wait for the report.

On arrival near Swindon I was going to stop at a Services about 1/2hr away, Teresa knew I would get stressed about being so far away and hence late (I preferred that as there didn’t seem to be anywhere to wait for over an hour near where we were going. However, she found a Sainsburys nearby and navigated me there. She was a star. In the past that would have been fraught with danger, but we did a brilliant job of communicating, Teresa especially and phew.

I drove at my usual 55 (ok 57) in Teresa car using cruse control to ensure I didn’t go any faster. But on the way home I wanted us to get home without sleep so did (exactly 70) where I could and less when not – like in the torrential rain on the M4 all the way to Bristol when it was more like a 50mph plod in the slow lane and let the idiots tear along not being able to see or stop in time in the other lanes!

Got to West Cornwall services just after 9pm, like the Marie Celeste, Costa closed, only McDonalds and Subway open. Not impressed Costa, shan’t be stopping there again in the evening (apart from Loo) – your loss!

Stopped at Sainsburys in Pz instead picked up a couple of Curry ready meals and had them for tea when we got home around 10:30pm

Cats were pleased to see us.

We both ate then crashed.

Fri 03-May-2019

Up late for a change and got some work done and poo returned to (relatively) normal activity.

Still very fatigued and I will be over the weekend, although I can easily do a long day like yesterday it takes MUCH more out of me than it ever did, and I just need to make allowances for that

Postscript

I said I would write about high and low functioning autism in the last blog.

I read what I’d written here, it was gobbledy gook! I need to take some time, so it will have to wait, sorry

The Bean, Pendeen, 06-May-2019