Letter from the North

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


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

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