Letter from the North

Upgrades for Angelique and yet more poo tales – 23-Mar-2019

New Seat Material for Angelique

Sat 23-Mar-2019

Over to Firehouse Campers to drop off Angelique for new bed base. We agreed a plan, Angelique is to become a two-seater, that means the new bed does not need to be crash tested when it is a seat. That has a major impact on the cost, it means the base can be made of ply without problems with anchoring to the frame, …

It’s not a problem for us (she’s gone from being an 8-seater to a 2-seater) as she was always intended to be used for camping and Teresa’s new car is a 7-seater so she can still transport people no problem.

After dropping her off we went into Truro for my first day out (for pleasure) since before Xmas (end of Oct I think).

Mainly a potter but picked up some knickers from M&S and some material for the new bed when it is a seat. Gorgeous material but I suspect Teresa and I are in a minority (PIC)

Ordinary poo before tea

Bout 8:30pm pottering in my office and out of the blue urgent messages, only just made the loo upstairs in time. No warning and less than a minute to get to a toilet, it is frightening and causes one to think how to deal with being out in the evening – answer is to take drugs (Loperamide) to block it, but then you are uncomfortable because you are blocked up and then worrying about constipation.

At a festival for 3 or 4 nights that’s too long to be “bunged” up so when do you take “unbung” drugs and then retake the bung ups. It is understandable why people with IBS and other related problems struggle with going out. It is truly NO FUN. Last year my digestive system wasn’t too bad but it has got a lot worse this year as the side effects from the cancer drugs accumulate..

When we do festivals/concerts this year I hope with drugs and VERY careful control of my diet (i.e. taking all my own food, known not to trigger diarrhoea) taking bottled water (because local water can set it off) and the careful use of drugs and it is probably manageable!

Sun 24-Mar-2019

Yet more poo in the morning, I thought I’d used it all up yesterday evening, apparently not!

Got lots of bits of stuff sorted today and then finished the third task (for my autism course) and sent it for checking to Teresa and a friend. In the end once I cracked the angle I was coming from it all fell into place.

Lunchtime nap and got feedback, minimal changes and task submitted. Now got to get down to and do the actual assignment of which the last 6 weeks of tasks were supposed to be “preparation”, not convinced I didn’t just lose 6 weeks (leaving only 6 weeks I think to finish it, but hey ho, …, if nothing else the thinking and just brain dumping of ideas I did plus the tables from the task will give me enough material to achieve something?

Apart from an enthusiastic morning, poo seems all right, but Teresa is doing one of her quick meals today which is tagliatelle, cheese sauce, ham and tinned (as was, jar now) asparagus. I suspect the asparagus will make a beeline for my digestive track and there will be trouble ahead 🙂

Last week’s blog released on time, in the end not a bad weekend and we did get out for a few hours too.

Hmm, I was right about that asparagus, despite not having much.

All quiet, lot of gurgling once eaten then all quiet, into office and the countdown starts

30, 29, office door, 27, 26, 25, 24, quick wave to Teresa as I pass her in the sitting room, 23, 22, 21 on the stairs, 20, 19, 18, 17, 16, 15, top of the stairs, 14, 13, 12, down the 3 steps to the loo, 11, 10, in the loo, 9, 8, 7, made it, 0, I lied about the 30 seconds, but I had made it in time anyway, phew! Well actually very phew but a different sort, solved, thank you Oust!

Here I am, back in my office having finished writing the above, about half an hour later and fresh pressure is building, why does it always have to be twice in quick succession, 30, 29, ….

Again, made it, this time with whole seconds to spare.

It is no fun, but it sure as heck worth it to delay dying of cancer!

Mon 25-Mar-2019

Weetabix for breakfast this morning. I usually have ReadyBrek (or cheapest substitute 🙂 ), but that’s harder in the caravan, needing hot milk (at home the uWave does the job quickly and easily). Last festival season Weetabix and Honey was perfect, but I know my digestive system is much less tolerant this year. So, though I had better do some testing (logical, analytical brain rules!)

2.5 hours later, well it’s not looking good after that dash up to the Loo. And the pressure is still there so I expect a repeat dash soon.

Will go back to usual tomorrow so I don’t get hit on the way to/from or at work in Penryn.

But will re-test for the rest of the week or until I can’t stand it anymore and see what happens (I didn’t in the end and accepted defeat, too many other digestive challenges to worry about risking one more).

Welcome to my life, food is something I love but needs SUCH care to avoid triggering problems, it’s no wonder that diarrhoea is one of the big reasons why people reduce their dose or change drugs form these TKI’s (e.g. Pazopanib which I am on). Identifying a diet that works is not easy!

Tue 26-Mar-2019

Lost a good 2 hours sleep during the night and feel rough.

Into Penryn, took a while to get moving this morning so at work just after 8am instead of 7:30am!

Had to drive in Teresa’s car as Angelique is having that bed fitted. Still I could still play my Audible story in the car and that’s all I need.

All fine, left early at 11am to make sure the car was back in time for Teresa to go out in the afternoon.

Tea, nap, well I tried, but total failure so gave up and back to work in the office. Feeling knackered!

As far as I recall no major poo issues today! Teresa was out for a bit of the evening and I had chilli for tea

Wed 27-Mar-2019

Good night’s sleep – making up for yesterday, phew

Hmm, an ordinary poo first thing in the morning, alarm bells going off this isn’t normal (nice as it is when it happens).

Getting on with work in my office and late morning the alarm bells go off and up I go, well it’s bad but not awful more loose than floods.

Afternoon nap, only really dozed so back to work

Later on, in the afternoon – a full barney – full flow! Less than an hour later another! Time for Loperamide.

Why during the day? Well, I had a bit of chilli for my mid-morning snack, so I wonder if my chilli has a slow burn impact (unlike fruit and veg which are fast to react) but one all the same – the fibre in the beans is probably the issue?

So, despite the fact that I love it, will need to take some Loperamide before I eat it in the future – bugger!

So, now I’ve had tea and back in the office and my digestive system feels like it’s been given one almighty punch. Plus, there are signs that one Loperamide may not be enough and another trip called for!

Oh joy, welcome to my world of poo 🙂

Thu 28-Mar-2019

Well, in the end all was quiet and it was not an awful night (aka good for Bean) and I am back in my office working away.

We have been reconfiguring Angelique for this year’s festival season (three booked so far) hence the new bed (instead of the original seats plus airbeds), a larger water tank, curtains that fit into the windows as opposed to the café poles we currently use – they work but they are a faff and we need less faff as I get less able.

We are also adding a solar panel to keep the batteries topped up. The fridge uses the most power and it uses most when it’s hot and sunny so a solar panel that works best in sunny weather seems like the ideal solution. It won’t be permanently fitted, but will travel inside the van when we go to festivals and be fixed onto the roof bars we have when we get there.

The company supplying it however has screwed up with its courier and I’ve had to send them a “by Friday or I go elsewhere” message (that’s a week late)

We also are replacing our drive away awning – attached to the side of a van for a much simpler, stand alone “utility” tent. Big enough to hold our loo (which I need with my digestive system) and the buggy and have enough space to stand and wash and dress. It’s not as luxurious but simpler to erect and part of our “do it light” having found how hard setting up and tearing down was last year and I was reasonably OK to help then. That’s getting less as time passes and the drugs/cancer dig deep.

The final wrinkle is hot water – we have a dual gas ring in the back of the van but to boil 1L of water takes some 15 mins or more and we use that water for tea, coffee in the morning, to fill my 1L thermos so I can have drink during the day. We use 1 kettle for washing up and 1 each for washing ourselves in the morning. That’s a lot of 15 mins!

So, I hunted around and there are MUCH more efficient ways to boil water – actually used by climbers up mountains who are heating up snow and want to get it done fast. With the new system I can boil 1L of cold water in 3 mins! It is brilliant, but expensive, but I am looking forward to avoiding long periods of just waiting in the mornings!

The new utility tent is here but I need to test putting it up, I’ll try to find the energy to have a play with that over the weekend, a good time to try as Angelique is away and hence the courtyard where I park her is free. I can put down our large tarp to protect it from the stones and we can have a fiddle. I remember doing this last year with the awning (there are pics I believe) and it exhausted me doing it on my own and I remember it being tough on Teresa on site at the festivals. I am hoping this one is a lot easier, fingers crossed, will report back. Of course, we could just try putting it up in the back garden on the grass as Teresa suggested! I forget we have a garden as it’s only reachable by going around 2 sides of the house and through two gates. I see it (and it’s a mess) every day, but I don’t think of it as ours!

Off to work, hi ho, hi ho, …, oh I’m already here 🙂

Well work was fine; I didn’t get much of a nap.

Teresa and I tested the little blue pills, not as effective as we hoped, clearly the meds I take are having a profound impact on my body (what a surprise)

After yesterday’s poo issues it is no surprise that nothing is happening today, however it means I feel very uncomfortable and I could do without that too!

Fri 29-Mar-2019

And Friday is here, though my body has no idea what day it is! That is a me thing (autism related?) in that I don’t have a time sense, but it is difficult when you are not sure if it’s the weekend or Monday!

I used to have a marker on a Friday when I went over to the North for some beer, now I no longer do that, my week just drifts aimlessly

Anyway, normal poo this morning after a 24-hour break. So, all is “well”

Well it was then all hell broke out with severe diarrhoea and some bleeding but we’ll leave that cliff hanger until next week. All is well now (Sunday) as far as I can tell, but it was a difficult 36 hours

Postscript

Although I have delayed the full explanation of the most recent poo challenges until next week, I am only ever OK until the next worry and they come thick and fast at times and not just with poo.

Stuff you’d never normally worry about, but in this new world of ours, is it OK or is it a sign that things have deteriorated? From a headache to poo, from I can’t sleep to I need to sleep, from a scratch that doesn’t heal to …

You can’t obsess, well you can (and I do), but you need to try not to as it ruins your life, but you also can’t ignore problems – that’s what keeps me alive, catching things before they become bigger problems.

It is so hard to keep going sometimes and yet one does, what’s the alternative? Life has always been a terminal condition, it’s just one tries to ignore that simple fact until you are made to stare it in the face every morning 🙂

The Bean, Pendeen, 31-Mar-2019

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