Letter from the North

A new way of eating – 29-Jun-2019

One of my fav frocks

Sorry it’s a bit late!

That pic is me at Stithians yesterday, one of my favourite frocks – beats the miserable cold Bean pic taken at Gower just a few weeks ago that was in last week’s blog!

Sat 29-Jun-2019

Mainly recovering from yesterday at Stithians, so not a lot happening.

Teresa was on a stall at Golowan today, to make parking easier I took her in in the morning and collected her in the afternoon.

Golowan is not so much fun (for me) unless I’m taking part and I no longer have the energy for that.

A Sainsburys shop afterwards to get food for me to cook for during the week since Teresa won’t be around

Got some potato skins and gluten free fish in “breadcrumbs” as a test for a “cupboard” (freezer in this case) meal. Had it for tea, worked well, will have that during the week. Also got some gluten free scampi will also try that.

Sun 30-Jun-2019

Made some flapjacks as run out

Made my chicken, pesto (well just basil actually) and pasta meal – good for lunches

Mon 01-Jul-2019

Ooops forgot to book some blood tests – quick call to the surgery and got the urgent one booked for tomorrow morning – need the results for seeing the haematology consultant next Tuesday – 1 week is just enough to make sure the tests are done in time.

Made my “pseudo” chilli con carne (using tinned chick peas as they are least problematical to digestive issues)

It will need to mature for a few days before eating

Experimenting with Xantac (ranitidine), taken in the evening to see if it does make a difference to the stomach pains

Tue 02-Jul-2019

Blood test ready for haematology consultant next week. Arrived 1/2hr early and was slotted into an empty gap and was home before the appointment was due – result!

Not in the office as blood test timing didn’t fit

Hmmm, a severe diarrhoea day today, ended up with two doses of Loperamide.

Wed 03-Jul-2019

Nil Poo

Went into the office as usual, but a fair amount of stomach/abdominal pain meant I left late morning and had lunch at home.

I suspect it’s just the abdominal consequences of so much loperamide yesterday, but, …

Thu 04-Jul-2019

Nil Poo

Fri 05-Jul-2019

Ok, the system restarts and is enthusiastic but not diarrhoea’ish during the day.

Blood pressure continues to be low so deleted the evening Moxonidine

Verdict – the ranitidine does not seem to have any material effect on the stomach pain on eating, so will stop taking and consult with GP next week

Postscript

This new diet of mine is “inspired” by the issues people with IBS deal with, some people manage it with a Fodmap diet. We didn’t go 100% into it but adopted most of its guidelines and adapted for things we know are a problem for me, so:

  • Gluten Free
  • Lactose free
  • Onion and Garlic free
  • Veg and fruit free (specific problems for me) – which along with meat being safe means it is NOT a vegetarian (or vegan) diet

A challenging diet to cook for, but fortunately there are, nowadays, products that help – gluten free pasta is OK, rice is safe, there is Lactose free ordinary milk (as opposed to vegan milk substitutes as I prefer the taste of milk). Rubbish biscuits – hence my flapjacks, …

Things are now more likely to be constipation than diarrhoea but about once or twice a week there can be diarrhoea but nothing like it used to be. Once I’m sure we understand what’s going on I will try and add a little fruit/veg, being careful of known Fodmap triggers.

As a plan it is working

On the other and this reducing need for BP meds is VERY worrying – it could be for awful treasons – the cancer drug has stopped working and tumours are actively growing and it’s another 2 months or so before I get any info on that!

Or,

It can be a result of the blood thinning that happens as a result of the venesection.

Clearly, we MUCH prefer the later and I will specifically ask the consultant as to whether it could be having such a drastic impact when I see him next Tuesday.

It’s easy to assume it MUST be good news, but preparing for not good or neutral is part of my way of dealing with the inevitable bad news that will at some point arrive. Being prepared takes the sting out of things and it is ALWAYS nice to hear things are better than I feared :-). That’s my way of coping, others do it different, horses for courses I say.

[UPDATE] – more next week, but the verdict is that the lower blood pressure is “probably” not caused by the venesections and is also “probably” nothing to worry about in terms of effectiveness of cancer drugs, so that’s all right then?

The Bean, Pendeen, 10-Jul-2019

Saturn V lift off – 22-Jun-2019

Oops, a tad late but it’s here now 🙂 , even later because the website host wasn’t working for a while – sorry, that bit is out of my control

That picture should have been in last week’s blog as it was taken at Gower – see how cold and miserable it was – this was taken in the barn where the food, drink and singing stuff (that Teresa struggled with) were held. It was warmer in the main marquee but not a lot – just less drafty (which is why I have a hat and a hood up!)

Sat 22-Jun-2019

In the afternoon felt bored and fed up and so got my act together and started building my Xmas present Saturn V Lego set.

Why has it taken so long, yes, the PgCert (which incidentally I got a (just) distinction for) took a lot of my time, but the truth is that I am suffering from a lot of “why bother” inertia and getting past that can be difficult.

Sun 23-Jun-2019

In the afternoon finished the job

Mon 24-Jun-2019

Out of the blue bad diarrhoea – not as bad as before the new diet, but enough to take Loperamide and have 2 loo trips in a short space of time.

Tue 25-Jun-2019

In the office in Penryn but nothing in the loo department

Wed 26-Jun-2019

A little in the loo department but fairly constipated!!!

The Brighton tailor whose identity became his business

Totally agree, before I dressed (publicly) the way I do now, I refused to get married “boring” posh or indeed casual and hence the outfit below made for me

Not the best pic, you cannot see the magnificent sewing on the waistcoat, I slouch awfully, …, but it’s the quickest I could find, sorry. The guy at the back on the far right is our friend Bon who died (last year I think), far better posture than me!

If I were to marry now then, like Teresa then (who made her own dress in red and gold), I would wear a dress (though not a white wedding dress – that is so stereotypical for cross dressers which I am not, but people think I am)

Thu 27-Jun-2019

Hmmm, BBC 1 news this morning talking about Transgender hate crime. Which is awful, no argument. But what environment are they shown in – a club, lots of lights and music. Most events organised by the Beaumont Society (google it 🙂 ) are of that type.

Fine, but it is very stereotyping by its own community. I know an awful lot of gay people and they don’t all love gay bars; they often are just quietly getting on with their lives like everyone else. The same is true for Transgender, Transsexual, Non-Binary (me), even cross dressing.

I get deeply distressed that normal people (who happen to be LGBTQ…) somehow are expected to “perform” a certain stereotype. For those that do, great, but let’s not ignore what is, I suspect, the greater proportion who just get on with life outside of anyone’s radar.

As part of my Autism MA, my 2nd essay was about hidden autistics, those that aren’t diagnosed, don’t even self-identify, they just got on with living their different, but fine by them, lives. Nobody researches them because they have no way of finding them. Same with LGBTQ…, research looks at people who can be found (and have no problem being found) it doesn’t touch what is, I proposed in my essay) the below the surface part of the iceberg.

Oh well, I shall continue talking to myself :-).

Fri 28-Jun-2019

The company I work for celebrated their 50th anniversary at Stithians showground. Despite it being full of people (the show itself is not for another week, but just the number attending the event is far too many for me), I wanted to be there and they let Teresa come along as my carer (which makes the whole event a lot easier for me to handle).

I could have put a pic of me here, but I shall save that for another time, I liked these pics of Teresa much more

Unfortunately, I had a venesection that morning so I went to West Cornwall Hospital for the vampires and then back home to collect Teresa and my food. The diet I am on is so difficult that it was easier for me to take along my own rather than faff with the menu options for stuff that worked.

Anyway, all was fine, it was mega noisy there but I’d taken along my noise cancelling headphones which reduced the level of noise to “manageable”.

After the main course (around 1:45pm, I was so tired I needed to have a nap so missed all the speeches (sounds good to me 🙂 ). Was gone for an hour and a half or so. Didn’t really sleep but was well rested.

The entertainment was a “circus”, they seemed to be a local “troupe” (Cambourne got mentioned). Bit of a curate’s egg act, more amateur than professional but good fun and definitely warmed up as the performance went on.

Still by 7pm I had had enough and we went home.

Postscript

And another week passes, the poo stuff is somewhat under control but still breaks free for no apparent reason but nothing like as often as it did. It was nice getting out with Teresa to the works do, tough and exhausting but look at those pics, I so like seeing her smiling.

As for the Saturn V, I feared I would never make it to the 50th anniversary of the Apollo 11 moon landing, looking pretty good so far, having my Saturn V built helps me remember – I made an Airfix version all those years ago – so many of them. How little I understood what the future would bring.

Next week will bring the odd reflection of some of the things that I wish I could do before I die but are no longer possible (for all sorts of reasons). I’ll say it then but I also say it now, do NOT put off what you can do today, tomorrow is not guaranteed!

The Bean, Pendeen, 03-Jul-2019

Out of Depression 01-21-Jun-2019

On way to Conference in Manchester – taken at Taunton Dean Services, Northbound

Although the pic above was taken during the time of the last blog, it was one of the few occasions I saw the world outside of home and a hospital!

Sat 01-Jun-2019

Somewhat faint following yesterday’s venesection, not getting anything done.

Sun 02-Jun-2019

Not sure what happened today but I’ve been “out of sorts” all weekend

Mon 03-Jun-2019

Nothing all day, diarrhoea at midnight, took loperamide

Tue 04-Jun-2019

In the office, otherwise ???

Wed 05-Jun-2019

Clinic today, I guess that’s why I have been feeling so “out of sorts”. There isn’t a conscious connection but the two cannot be separated.

No change was the verdict – no growth, no shrinkage. On balance it is good news, but I always consider no shrinkage not to be ideal.

We discussed the stomach pain I get and the consultant asked me to take Gaviscon and if it works then a more regular ant-acid drug.

So, I did, …

Lumpy diarrhoea early evening and 40 mins later jump out of bed – severe barney – took loperamide. Only diet change was the Gaviscon.

Thu 06-Jun-2019

Gaviscon and more severe diarrhoea, the link is close enough that I don’t trust it :-(.

There was an article on the BBC News web site “Are we more constipated than we think?”, yet more data on why knowing our bowel habits and the nature of what comes out is SO important. We all do it, embarrassment is not necessary (understandable because we’ve all been brought up to be ashamed of what our bodies do in that department).

Fri 07-Jun-2019

No idea what is happening.

Postscript

Teresa has been on cushion covers (for the cushions that make up the bed in the campervan) most of the week (she will finish tomorrow – Saturday) – fantastic job and done a week before we go away.

Results day does tend to screw with me psychologically, this one was the worst, partly because of those pains (abdomen and stomach). It looks like it may be stomach acid, however they do miss stuff so I remain wary!

The Bean, Pendeen, 09-Jun-2019

Sat 08-Jun-2019

Sorted out stuff from last year’s festivals ready for this year.

Teresa finishing cushions

Exhaustion

Made pasta chicken meal I use for lunches ready for Gower.

Made a meat loaf – totally failure, I had added bacon, it was FAR too salty

Sun 09-Jun-2019

Main load of bulky stuff into the van, some stuff still to do but we seem to have more space thanks to removing awning and adding utility tent

Mon 10-Jun-2019

Made new meat loaf and flapjacks. New meatloaf a lot better

Spoke to GP about stomach acid stuff and Gaviscon seeming to cause diarrhoea, he prescribed Omeprazole. His prescription database said be careful with Paz as it interferes with absorption so take it at night if you take Paz in the morning.

Hmmm, I want confirmation from Oncology and so asked Teresa to ring them in the morning.

Tue 11-Jun-2019

In the office, in the meantime Teresa contacted Oncology department about ant-acid pills they said all of them are Ok.

Wed 12-Jun-2019

Hmmm, I checked that assertion “they are all OK”, I don’t believe anything told to me without evidence so I did some digging. I checked for interaction on the Paz manufacturers database and it’s a no-no, so back to oncology – why is it US that have to keep on top of this – so dangerous if I take another drug for side effects that stops absorption of the only drug protecting me from advancing the cancer!”

At work at home. I knocked up some sort of curried beef without using any onion, flour, stock cube, …, somewhat of a challenge we will see!”

Fixed Teresa’s Email again – Windows on her computer (all new) seems to be determined to cause problems, but think I have better handle on it

Thu 13-Jun-2019

So, I completed my research, spoke to Oncology again and posted my thoughts on Facebook. For those that missed it (with spelling and grammar clean-up):

SCARY drug interactions!!!!

So, oncologist thinks some of the abdominal pain may be stomach acid related and suggested trying “Gaviscon” to see and if that worked try more targeted drugs.

OK, tried Gaviscon – major diarrhoea, so that’s a no then.

Rang up doctor and he suggested Esomeprazole but said that his database suggested it can cause problems with Pazopanib (my cancer drug) and should be taken at a different time of day (but not real specifics)

Hmmm, think I should check with Oncologist, Teresa rang up and get a message back – “antacids are all fine”. I was sure it wasn’t so I checked on the manufacturer’s information for Pazopanib and indeed Esomeprazole is a problem.

So, I spoke to someone different in Oncology and at first they suggested Esomeprazole but when I said that this seemed to be a problem they checked and agreed with me – AT LAST and suggested Ranitidine (aka Zantac) as being less of a problem.

Hmmm, I don’t trust the medical profession, so, though I shouldn’t have to I did my own research, thank god for the internet!

NICE (those people who control all drugs in the UK) have a database for drug interactions:

And I checked there for the two antacid types against Pazopanib and lo and behold:

“Esomeprazole is predicted to decrease the exposure to Pazopanib. Manufacturer advises avoid or administer concurrently without food.”

Not as clear as I would like but at least I can discuss further with the GP what it means, however:

“Ranitidine is predicted to decrease the exposure to Pazopanib. Manufacturer advises Ranitidine should be taken 10 hours before or 2 hours after Pazopanib.”

Ah that is clearer, so if I do anything, I will try Ranitidine but check with GP anyway.

What on earth happens if you are not awake and aware to be able to question the experts, do your own research, challenge them again and make REALLY sure what you are taking is safe with everything else.

I could just have taken the antacid, my body absorbed 40% LESS of the cancer drug and never known what harm I was doing until in 3 months’ time the tumours have grown!!!

I am VERY careful and read every single drug leaflet that I get – do you?

I check my blood pressure every day (at the moment twice a day) and discovered my blood pressure was far too low and I needed to back off my BP meds to get it back under control.

Pazopanib pushes blood pressure up but not always so I have to monitor BP – going to the doctor puts it up anyway (white coat syndrome) and anyway he can’t check it every day.

So, I am on reduced BP meds, prescribed by me (but checked with the GP so he knows and agrees) until my BP changes and I have to increase it again.

This is NOT self-medication I am not that stupid, but it is taking PRIMARY responsibility for my medication, because the NHS has not got the resources to do it for me.

I worry, a lot, about those that do not question what Doctors do and say, they aren’t perfect and we do THEM a disservice by acting like sheep and not equal partners in our care.

Wow, it seems I have got some writing mojo back, I’ll have to copy this into my blog 🙂

Bean

So, there you go, we are off to Gower Folk Festival tomorrow morning so too late to get a prescription for Ranitidine so will look out for it on the way in the morning.

Fri 14-Jun-2019

And off to Gower we go. New bed in the camper, now with a utility tent and not a full-scale awning, trying to travel with less “baggage” to make setup and tear down easier. There will be a problem for me and “loo in the night” (normal) if it rains as the tent is not connected to the van – though it will be right next to it. However, I have a lightweight mac to help and fingers crossed for good weather (it wasn’t!)

Set off 7:15am ish, stopped at Sainsburys for Xantac (Ranitidine) – you do have to check what the underlying drugs are in ant-acid’s, they vary, another one there was is based on Esomeprazole! I had already picked up some new leggings – my old ones were fine but my tummy no longer tolerates ANY level of tightness in the clothes I wear and so I need a couple of sizes larger – more baggy than I like (I like skin tight) but better for cold weather which we expected. They worked so I picked up another set as we were at Sainsburys anyway.

Next stop our usual at Cornwall services and then Taunton Dean for quick stop and then Bristol (Gordano) so Teresa could grab a quick sandwich from the Waitrose shop there. She is a fussy one over sandwiches that wife of mine, but I love her for it, I like a woman with her own mind. Massively packed at the services and hard to park so I didn’t loo but hovered.

Then Wales services (can’t remember its name, but it’s the one we usually stop at and yet again I drove in, took the wrong turning, drove out, back around the Motorway interchange roundabout and back in again for lunch and loo.

All the food I am eating (lunch and evening) was prepared at home, travelling in the fridge and eaten cold – more on that later.

We arrived at Gower around 2:30pm and all ok. We got a spot with power (which we had booked and paid for) close to the entrance. There had been some bad pitching by others arriving before us but we were early enough to sort out a slot for us.

The utility tent up in half hour – brilliant. Then rest of sorting not too difficult.

The evening was a ceilidh so I tried it a bit (not dancing in the buggy obviously, but listening to the music) but not worth stopping late and mega tired and Teresa had tried a sing around but it was too noisy for her in the barn where it took place so we had an early(ish) night.

One dose of diarrhoea during the evening so took an Imodium Instant (faster acting than standard Loperamide but massively more expensive and not available on prescription. However, when loos are difficult to use (like public ones) I like fast acting!

Second dose of more severe diarrhoea after going to bed, good job our own loo is next door in the tent, the camp site loos were far enough away I wouldn’t have made it!

2nd Loperamide (instant)

All quiet after that thank goodness

It rained heavily during the night but not when I went to the loo so all OK

Postscript

And so, we made it to Gower, the weather is not going to be great, but, …

Sat 15-Jun-2019

So, clearly blog didn’t go out so it continues.

Weather has been kind during the day and I managed to “sleep” until 8am (as opposed to my more usual 6am).

Sound tradition at Gower, the best act there (for us)

The lunchtime concert was OK, the evening less so and the “big act” useless for both of us and we had an early night.

We love Gower because it’s a single marquee and so you are exposed to all sorts of styles that you may not choose but can be discoveries at best and a pleasant listen at others.

This year’s Gower was, for me, more “I don’t like this” acts than the previous year, but that will happen. The bigger problem is that instead of being in a small marquee the workshops (including sing arounds) was held in the food barn (the small marquee was cold and wet apparently). A lovely space, full of birds singing their hearts out and very echoey. For Teresa it was impossible to hear the others singing or enjoy herself, so instead of disappearing for a lot of singalongs she was with me for the concerts and liked even less of the music :-(.

It won’t be our greatest Gower, but then that’s the way it goes when in the main they are booking small acts that you don’t know.

One big complaint I have is that many acts “bio/blurb” is REALLY inaccurate and NOT a reflection of what they do and that is disappointing.

Sun 16-Jun-2019

No more diarrhoea overnight, a lot of rain, but again missed in the loo breaks :-).

Packed up the van in dry weather – mainly Teresa doing the work. The wind caused some fun getting the utility tent down but we managed

Last day, poo quieter.

Again, very curates’ egg in terms of performance/folkyness. In the evening 1st act was good, 2nd was OK, third was OK but not Teresa’s cup of tea, perfectly pleasant but not worth staying for when we have got a long journey, so we went to the van around 10:30pm and on the road by 10:45 (just load the buggy).

Mon 17-Jun-2019

An hour or so’s sleep (2ish to 3:30am with loo trips) at Exeter Services (no other stops), a double espresso for a caffeine hit to keep me going (only coffee I ever drink) and then the rest of the journey.

Home 6am (ish) and to bed, awake about 8:30am, long afternoon nap.

All ok (ish) on the poo front

Tue 18-Jun-2019

All normal – not travelled to Penryn – being sensible, we know I will be tired after the drive and whilst I may feel OK it will take very little to push me back to exhaustion. But working at my day job all the same

Wed 19-Jun-2019

Two normal (ish) poo sessions followed by one less and then one more barney like – took loperamide.

Thu 20-Jun-2019

Last night was a really odd one for dreams.

It started with me dreaming of the moment of my death, feeling the world close around me, reaching my hand out to Teresa as I felt my world recede to a dot (like old fashioned tube televisions did when turned off). Immediately followed by hearing Teresa giggling at me and the most surreal life after death scene.

I’m not upset by the dream, I am REALLY pleased that my subconscious felt I was ready to consider death in detail, I wasn’t and am not distressed by the dream. Indeed, I think that 18 months after diagnosis to have been able to process all that is happening to me to that point is a sign of me having come to terms inside as well as outside of what is going on.

Still pisses me off immensely of course, but there is a bit of acceptance alongside, my head is most definitely NOT in the sand.

Fri 21-Jun-2019

One problem I had at the festival was that all my food was cold, now I do like cold savoury food, but it was MUCH less welcome when it was already cold and miserable outside.

One thign I discovered after we got back is that the chicken and pasta meal I had made – and was eating for lunches was MUCH nicer with some added water and a spalsh of tobasco – totally change dit. So, in a trial for future festivals, warmed up such a mix in a pan on the stove and oput it in a “lunch” thermos to keep warm till lunchtime. If that works, I can do it in the mornign at the van before going into/down to a ferstival and not need to rush back for lunch. Fingers crossed. Can prob do that with an evening meal as well.

Postscript

One of the things I did differently this year was hot water. We get through quite a few kettles worth:

  • Morning tea and coffee
  • Fill my hot water thermos for hot drinks during the morning
  • Washing Teresa and I manage on one kettle’s worth – just
  • Washing up

Since the hob in our van takes 10-15 mins to boil a kettle that is crazy. This year I invested in a “furnace” designed for mountaineers to boil snow in freezing temperatures, quickly. It was VERY expensive, but 3 mins and over a litre of water is boiling. An excellent investment, especially if it raining since the job needs to be done from the outside and the les time the better (even with the back door open as an umbrella, the sides are exposed.

We also used much smaller water and waste water containers which reduced the amount of “stuff” in the van.

I think we are getting to a better way of doing things as time goes on (not that I have lots, but well, you know, …)

AND the blog is published, sorry it’s taken a while, writing got very “blocked” for a while, not so much the writing process as some think it was, it was the “fuck writing I am dying, who is interested in this anyway” type of blockage.

And I really do not mean any offence to those of you who read this, but I have always wanted it to reach much further and to help more people but it doesn’t and I get depressed over that – sometimes severly.

The Bean, Pendeen, 23-Jun-2019

Not so much poo, a lot of fatigue and medical tests 18-25-May-2019

On our way to Manchester, nice Teresa smile

This blog may give you some clue as to the lengths we are going to try and get the poo under control, but don’t try to second guess us, it’s not quite what it may look like, but we want to keep our powder dry until we are sure especially since this weekend was a major setback.

Sat 18-May-2019

We need some shopping so I went to Sainsburys so Teresa can do wall painting/cushions. Of course, by the time I was back I was tired so rested.

After my afternoon nap I made some onion free tomato chutney.

Still got bad diarrhoea – Loperamide

Sun 19-May-2019

Not awful this morning, nothing else, very tired

Made chicken/pasta (sort of) meal – no onion, no tomato, no garlic

After my nap I sorted out Teresa’s cushion measurements, they are now accurate 🙂 I love Teresa to bits but her spatial/measurement skills are not great (rubbish), but I didn’t interfere while she did her thing and then helped sort it out when she was ready. Mind you easier for me to “fix” her mistakes than get it right in the first place but as a quasi-male I couldn’t possibly admit that could I? Oops I did, ah well 🙂

I wanted some more flapjack for “snacks” but Teresa too busy, so I sorted myself. Now that should be NO big deal but I’ve never done “sweet” cooking before and it was mega stressful. Logically that is stupid, flapjacks are easy, but autistically it is something different and a nightmare of stress. I realise this won’t make sense to you unless you are or live with an autistic, but trust me, rows can grow from something so trivial.

It didn’t but it was tough all the same, Teresa, bless her, came in a provided some comments and encouragement and that got me over the finish line. Darned nice flapjacks too 🙂

Mon 20-May-2019

Moderate diarrhoea in the evening, took Loperamide

Tue 21-May-2019

A good day in the office today, best for some time.

Almost no poo in the morning, regular Diarrhoea this afternoon – no worry. Bedtime – severe abdominal cramps, major diarrhoea, a deeply unpleasant 20 minutes on the toilet. Loperamide – obviously.

Feels like our new “regime” has failed disastrously, but we are not ready to throw in the towel yet, we need time to see how things proceed and tweak, so far, we have explanations for problems.

But however positive you are it was not a great evening

Wed 22-May-2019

Digestive track not too bad today, maybe we learnt something new over the weekend?

Thu 23-May-2019

Voted in the European elections, digestive track a little happier still, fingers crossed?

Tomorrow is CT scan and assignment results, could do without the stress especially as I won’t have access to the assignment results until I get home from the scan. No stress there then?

If I pass the assignment, I get a PgCert in autism studies, so it’s not just another exam, it’s also the gateway to the 2nd year of the MA, failure means I don’t proceed and wouldn’t want to as I did the best I could, given my current limitations.

Fri 24-May-2019

Hmmm, CT scan easy peasy – lie down, quick needle in the arm, hold your breath for 15 seconds, move your arms, wait another 10 seconds, job done! I’d arrived 45 mins early and was out 15 mins before I was due to go in 😊

Mind you, one hell of a bruise – compare it to the pinpricks in the last Blog!

Lots more colour than it seems here!

That pic was taken 10 days ago, still plenty of colour this morning!

At West Cornwall hospital I’m now “David Bottomley (aka Bean) and people call me Bean, no fuss, no demands, low key recognition, that’s how I like it. It came about because of a conversation I’d had with nurses at my venesection clinic about gender (well I do swan around in a frock) and I asked how easy it was to change my records, this was a simple change since I haven’t legally changed my name (and not important to me to do, dying seems more significant!)

At West Cornwall hospital I’m now “David Bottomley (aka Bean) and people call me Bean, no fuss, no demands, low key recognition, that’s how I like it. It came about because of a conversation I’d had with nurses at my venesection clinic about gender (well I do swan around in a frock) and I asked how easy it was to change my records, this was a simple change since I haven’t legally changed my name (and not important to me to do, dying seems more significant!)

However, assignment results still not available (4:50pm), apparently maybe not until 6pm. Last time it was around lunchtime, so you can imagine the stress and tension in waiting, especially knowing it’s a bank holiday weekend so if late, may not be until Tuesday!

Apparently, the results came in around 9pm, I was asleep and saw mine around 2am. The feedback was right, the mark was decent, I cannot complain. I knew I hadn’t done a good job, but apparently, I hadn’t done an awful one, quite content. As an autistic I prepare myself for the binary (abysmal fail or total excellence), this wishy-washy middle ground is hard to process!

Only real criticism I have is that the results were very late but there was no explanation from the University that a) they would be late and b) why. “Stated” policy is that they should be done by 6pm, so 9pm was a long wait for all the students.

Postscript

Hmmm, this should have been it and I publish over the weekend, but things got on top of me, so here is next week too

The Bean, Pendeen, 26-May-2019

Sat 25-May-2019

We are off to Manchester tomorrow for the Autistic UK, “The future is Gold”. The worry about the journey, the hotel, the event and getting home again is more than sufficient to paralyse me. Plus, the after effects of the CT scan are never far away.

Nothing happened today

Sun 26-May-2019

Left at 9am, arrived 6pm, 360 Miles later. The hotel was fine – though not up to Teresa’s standards as she repeatedly communicated :-). Still a couple of gins inside her and she mellowed out a bit. There was a wedding in the hotel that night and it wasn’t the most restful, but I got an OK night.

Mon 27-May-2019

Got to the venue OK, everything was organised for me in my mobility scooter, couldn’t ask for better.

The venues audio was rubbish, in particular they had set up their mic’s so that there was a constant low-level low frequency feedback hum. It had me (and a number of others) crawling up the walls. Autistics often have noise sensitivity and low frequencies are mine. In the end I was forced to leave the hall, in tears and retreat to the quiet room (they specifically have one as is normal at autistic events) until the problem was sorted. The organisers did their best, but the venue was just incompetent, no need, the fix was to move a mic, not exactly rocket science and could have been done 45 mins earlier!

The venue also excelled itself by putting the disabled loos off a narrow corridor with a tight turn to get into the corridor and another into the loo. I was walking (staggering) so OK, but those in wheelchairs faced an impossible challenge.

What is worse they had moved the disabled loo from somewhere with easy access to that location!

Oh well, the conference itself was brilliant, I went up there to hear Steve Silbermann of Neurotribes fame and it was also interesting to hear my PGCert supervisor (Luke Beardon) talking to a non-student audience.

A conference organised by autistics for autistics, brilliant.

As for flappause (google it), is there anything cooler?

Left 4:30pm, home 1:30am, shattered, crashed into bed

Tue 28-May-2019

Awake 8:30am and took it easy for the rest of the day, except in the evening we needed to move the buggy from my car to Teresa’s, that exhausted me.

Wed 29-May-2019

Blood test 8am and then into Truro to meet ex-wife (#2) we still keep in touch, as much to talk about the children, but I like the fact that divorce doesn’t have to leave a bad taste.

Got home exhausted and crashed for the rest of the day

Thu 30-May-2019

Phew got some work done

Fri 31-May-2019

Venesection at 9am, particularly affected me and indeed after I’d had my BP meds in the evening, I was not safe standing up due to low blood pressure – not surprising having had a pint of blood taken out.

Otherwise just an exhausted day.

Postscript

So, last week just disappeared. The diarrhoea is a long way from being gone but it is more manageable nowadays, I think we may have a handle on its worst excesses, keep monitoring.

This was an intense period:

  • Fri 24th May CT scan
  • Sun/Mon Conference
  • Wed 29th May Blood Test
  • Fri 31st May venesection
  • Tue 4th May drive to work. Why does this matter? Because on the way I need to fill up Angelique’s tank. This is what I had done on the way to work that fateful day and I still get a powerful emotional jolt when I have to do it – I usually try VERY hard to avoid it but at 1:15am last Tuesday on our way home from Manchester I just didn’t have the energy to stop and start again and she is running on fumes.
  • Wed 5th June, scan results, can’t be stressful, can it? All the abdominal pain of late “must” have a non cancer explanation? Hope won’t make it true, fear won’t make it false. It will be what it will be, but it remains stressful
  • … Now we know, panic or momentary relief?

The Bean, Pendeen, 03-Jun-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

Self-care, depression and our friend poo – 20-Apr-2019

Sat 20-Apr-2019

Easter Saturday, Teresa is fast asleep. First day of my three-day break – I have decided to stop trying to do work, assignment or anything else and try to unwind and relax.

I will still faff around a bit but fundamentally I am going to try and do as little as possible to see if I can’t then take a good run at the assignment (deadline is in a couple of weeks!)

I will need to try and put up Teresa’s seed incubator, actually it was assembled at Xmas but after blowing down twice and being tied to the wood store, it needs screwing to the woodstore so Teresa can plant her seeds.

Whilst I need a break, it only seems fair I have a go at doing this today, it’s not a big job and will mean a lot to her.

Daddy one day is the well-known refrain about me as I like to think things through, so I need a nudge to complete. Teresa is saying she is buying seed compost this weekend and planting no matter what, so I find myself well and truly nudged and quite right too 🙂

Off to watch some Beiderbecke

I put up the Seedhouse, I decided to use string not screws because it makes it easy for Teresa to move it around when needed and I am not here to do it, horrible but have to think about these things 🙁

While I slept Teresa went out shopping for compost and stuff and came back happy and smiley – enjoyed buzzing about in her “new” car and no bean to get in the way, works for me 🙂

It’s not a good day for me, physically it’s OK, mentally/emotionally it’s a crap day.

Poo, well it’s always here

Sun 21-Apr-2019

Hmmm, my new day is not starting any better than it finished and as it’s Easter day and everywhere is full of the joys of resurrection, I am afraid my thoughts are of a much darker tone and I will do my best to capture them.

Yesterday evening I was fed up with TV and suggested to Teresa we listen to some music, and so we did, but at the end I (for reasons I cannot explain) gave Teresa a quick tour through “Beans Anthems”, a place on our music system where I keep songs/tunes that have an importance for me.

Maybe one day, I will explain the contents of that directory, but when Teresa said that she would make sure that my children got a copy of it “when the time comes” I was pleased in one breath and incredibly sad in another because of what that phrase means

We all die, that is an unavoidable fact, it comes to all. Some never know, it catches them out of the blue and they are gone. Some know it’s coming and it’s welcome, whether to end suffering or at the end of a long and happy life.

Some, like me, live in a frozen moment, I know the what and the how and the when has already passed, I am frozen in the moment before when, held there by medical treatment, held there until that fragile string snaps and it WILL snap, that’s the nature of my cancer and time restarts and death comes galloping on, all the more enthusiastic for having been stopped.

Untreated I would be dead now, the treatment holds my life in its hand, imperfect as it is, I am grateful to it whilst at the same time loathing what it does to my body and how hard each day is.

You can live for the day and I do try to, but I’d like to be alive to look back on the day with pleasure, but I can’t allow myself to view good days as future memories when the future is so uncertain. So, they are an ephemeral feeling as they pass me by; but I must let them go and not try to hold them.

Apart from the unpleasant side effects of the treatment there is no sign of that sword hanging above me by a thread. Every three months I get a picture of the thread, how frayed it is, whether it looks like it is getting weaker. Trying to judge if it will snap today, tomorrow, next week or will still be there in three months’ time.

A different and more powerful analogy for me is standing there with the hangman’s noose around my neck, my death sentence has already been passed (the cancer). Al I am waiting for is the trap door to open, but no, it stuck (the drugs) and I am left here standing waiting for it to release itself.

It’s no good telling me how lucky I am, I am the one with the noose around their neck, still standing on that trapdoor. Yes, I can move, I can go and visit people and places but I take that noose and jammed trapdoor with me wherever I go, you can’t see them, everything looks OK, but I can feel the noose around my neck and the trapdoor beneath my feet and I can hear the creaks and groans of that trapdoor as it tries to free itself and open.

Nobody can remove that noose and fix the trapdoor, if I am lucky constant maintenance will hold the door in its precarious state but the repairs don’t last and it can only be cobbled back together so many times (3) before it finally fails.

That’s not a fun thought on this morning when people are enjoying their eater eggs (and I WILL enjoy mine), celebrating everlasting life, I don’t believe in resurrection, certainly not into any form of life I could recognise, so death (of this life) for me is final.

There are really good days – like Teresa’s birthday, Christmas and Easter, but that noose reminds me that this one may have been the last one.

Yes, I know, that is true for all of us, but for most people they are not aware the noose is there, it isn’t tugging on their neck, the trap door isn’t loudly creaking daily worrying you that it’s on its last legs.

So, why do I write a lot about poo, well, it’s fun because people think it isn’t and I like challenging perceptions.

But also, the constant battle with poo, the diarrhoea and constipation are an everyday reminder of that noose and trapdoor. The fatigue and my need for an afternoon nap is a constant reminder of just how fragile is the stick blocking the trapdoor from opening.

Scan day, the letter for that arrived on Friday, how did that come around so quickly, is the moment when somebody gets to look at the state of the trapdoor, they make me wait a few weeks and then I get to see the picture, or at least the description of the picture the “expert” gets to see.

The reminders never disappear.

We continue to fight to get compensation for the damage I suffered in the accident which I still suffer from today, I cannot sit or lie comfortably due to pain in my shoulder and particularly pain in my coccyx.

The last expert decided that the pain I have was due to the accident but is now due to the cancer. Well he did google Pazopanib that says it MIGHT cause joint pain, so that must be the reason I have it now. It may well be; however those two joints were damaged in the accident and wouldn’t be suspect today were it not for it.

So, 18 months after the accident and half way through my initial prognosis of 2-3 years (IF the treatments work) I am now due to see yet another “expert” the third, one a GP, the second an orthopaedic consultant and this next one (the last one we hope) an orthopaedic consultant who is also a cancer specialist – not of kidneys, but at least he should have a better understanding!

That is yet another reminder of the creaking and groaning, what is the point of compensation if I’m not in a place to enjoy it?

The only reason we had the money to do the work on the Camper van is that I sold my Contrabass Saxophone at a significant loss (less than half of its well over £20,000 value) because I will never get a chance to play it again and it was just sitting there.

I know I am incredibly lucky, without the accident I would be dead by now, I should be grateful and at one level I am, but that doesn’t mean it’s all OK.

Being dead is not the problem, at that point I am beyond giving a damn. I cannot even care about those I leave behind; they are on their own. It’s the dying that’s tough because I am aware of what I will lose, I am aware of what they will lose.

I can still feel that noose around my neck and nothing can change that, I can still hear and feel that trapdoor creaking and groaning.

Every Easter day I get to celebrate means that I am less likely to see the next one, the drugs are guaranteed to fail to hold the trap door closed, it’s only a matter of when they fail NOT if.

So, I am sorry, Easter day, despite the glorious sunshine and chocolate or indeed the meaning of resurrection if that is important to you, is NOT a happy day for me, it’s just another day I may never see again.

Should I be grateful I am still alive, yes, of course I am, very much so, but that noose and that creaking trap door are impossible to ignore,

Outwardly I act and talk as if it’s easy, I suspect many in my situation do, some may even believe it, but deep down, we all know what’s going on and in the quiet and dark moments I remember and I weep and that is my Easter message, a lot of tears.

So, to lighten the mood, back to poo, after last night I am concerned but later this morning things were almost normal, but the tenderness in abdomen and/or feeling of a (it varies) need for the loo means I never forget what is going on, I’m not obsessed, but it never goes away!

Ordinary afternoon nap

In the afternoon I ended up watching Top Gear then Teresa sat on my bed (I had moved to an arm chair) watching birds and then both of us watching Top Gear.

Made a sort of curry yesterday from leftover filling for the actual poo pie and had it with rice this evening. Teresa preferred tagliatelle, but as expected didn’t like it, leaving rather a lot for me to finish off.

Oh well, I was always known as dustbin dad as I hate to throw food away and concoct all sorts of meals to use up leftovers.

I reckon I now have enough curry to feed me every day for at least the next 7 days. That will be boring.

As a precaution I took a loperamide just in case, later on it felt like a waste of time but no, just a lot of fart and that was it.

However, as I write 15 mins later, I suspect there is more to go, my abdomen is getting very sore (a bad sign) and I feel pressure.

Could be more gas but I have my doubts!

A few ideas for the assignment but nothing concrete in terms of writing.

Nope it was just gas, oh well, …

Mon 22-Apr-2019

Hmm, nothing happening in the digestive department, I fear we have a shutdown (aka constipation), we will see

Tue 23-Apr-2019

Well I was at work as usual and no nothing happened yesterday

Mid-morning, strong messages but no, I was right, locked solid constipation, push any harder and there will be bleeding, if I haven’t already pushed too hard.

Decided best act was to get home where I had drugs to soften and easy access to private loo in case it then flipped into the other.

Got home, instead of my cheese sandwich had a curry for lunch – known to be a diarrhoea trigger.

Had a nap and then yes, we have movement, relatively normal but I suspect cork out of bottle syndrome will apply

Yup, 1/2hr later we have explosive pebble dash. I refrained from Loperamide to try and avoid the violent swing from one extreme to the other.

For the rest of the evening, warning signals but no activity, crashed out at 9pm and that’s pretty much it

Wed 24-Apr-2019

And normal poo this morning well normal except poo in the morning is now highly unusual, evenings seem to be favourite.

However, no Loperamide yesterday and no blood so fingers crossed that battle is over. My abdomen is still very sore and I need to ensure I eat “mildly” trigger foods today just to stop things locking back up again.

This knife edge I walk is a nightmare, an acceptable price for living, but that doesn’t make it easy.

Thank goodness for being able to work from home, although the primary reason is to manage fatigue, nowadays, the confidence that comes from having both a loo easy to hand for as long as I need it (and that is often 15, 20 minutes) and access to drugs to help manage issues, is priceless.

It could stop me going out, but with three folk festivals, two concerts, an autism conference and assuming I carry on with the MA, six trips to Sheffield before Xmas. I’m not avoiding going out, but I will have to ensure that I am prepared and alert 🙂

This violent swing between diarrhoea and constipation is a relatively new thing with my digestive tract, but that’s the nature of these cancer drugs, their side effects ebb and flow and change as the toxic effects accumulate vs my body adapts to them.

There was a post to our members only Kidney cancer Facebook group so I cannot repost it or the picture, but I will summarise:

A picture of someone with a shocked face with the words “The moment when you realise it was not just a fart”.

For those scratching heads we are talking about the point when what you thought was wind turned out to be a change your knickers moment.

Mildly embarrassing when you are at home, excruciating when away from home!

That plus those farts are often pretty vile smelling (I call them fatal/killer farts for a reason!) and they come out when they do, there is only so much self-control you have, plus the pain if you don’t is horrible and …

Well, there were a lot of “me too’s” to that post, one of the joys of staying alive with renal cancer 🙂

If I dashed to the loo every time I felt a “fart”, I would be exhausted from all the “running”, the majority of time that is all that it is, but sometimes it is explosively not so and you don’t really know until the moment it’s clear it’s not gas or not only gas!

I am pretty open about this stuff, but when I left work yesterday I just said I need to go home, not because I am embarrassed, but others are more uncomfortable and there is only so much education you can offer people and in my office they have the autistic and non-binary gender stuff to deal with every day, that plus the generalised cancer mess.

If they want the full details, they can join you in reading my blog 🙂

Well today started out, surprisingly, as very normal poo, within an hour it was less so and by lunchtime explosively so and time for loperamide.

That is 24 hours from locked up constipation and needing treatment to full flow diarrhoea and needing treatment and at no time in-between was I comfortable, it varied between ache, bloated, painful, need for loo, but trying not to let things settle down, … And all of that was proceeded by 2 days of nothing following a day of free flow following a couple of days of nothing.

In an earlier blog I tried to describe it as careering along in a car with brakes and accelerator either full on or not working.

It’s also like walking an invisible line between two cliff faces (faeces 🙂 ?) in the dark, you have no idea where your next step will take you or how to tell which way the path goes. You think you know, you don’t, it’s a lottery.

As for carrots helping eyesight in the dark, well they might but they are guaranteed to trigger diarrhoea so they are out 🙂

I spoke too soon, post evening meal two, increasingly vicious attacks, the second after I had gone to bed, another Loperamide.

No idea if connected or not, but then I didn’t get to sleep until gone 1am, just after I had popped to the loo because it felt necessary, it wasn’t, a small amount of fart and that was that, but, I suspect, it was enough to re-assure me that things were now stable, having been bad all day and I crashed

Thu 25-Apr-2019

Dragged myself out of bed around 7:15am (as opposed to 6:15am) and feel awful, yesterday was a crap (pun intended) day.

Saturday we are planning to go to the Porthleven Food Festival (LINK), clearly the food is out of the question, but the parsity of loos means I will need to be careful on Friday and make sure I take preventative drugs on Saturday morning, I’d rather pay the price for that later than deal with a diarrhoea attack in a place so restricted for disabled toilets! I can manage the single porta loos if I have to but it’s not enough space to clean up after an attack!

Blah, no fun, not stopping me, of course, but no fun!

Back to work

Blah, heard a car outside my office and then voices. Now the track by the outside of my office is NOT a right of way, we have a right of way written in our deeds, it is what permits me to use it to park my car behind the house – not blocking the track.

The track is also used by the school for access for maintenance.

The car that had just parked outside my window had no right to be there. It blocked my ability to get my car to the road and was downright anti-social as my car was visibly there.

I went out, took photos to make sure I had a record, spotted a gaggle of what I suspect were parents in the car park talking, same sorts of voices and laughter I heard coming out of the car. They had to have seen me taking the photos but nobody approached me.

I went for Teresa to provide moral support before going up to talk to them and needed her to help ensure I kept control as under such circumstances I am likely to over react in the face of “I was just popping to the nursery/school/shops, I will be gone in a minute, no harm done!”

Almost certainly a parent dropping off a child to the nursery/school, they park in all sorts of strange ways, obstructing cars in the car park, but the one on the track was a new thing.

Anyway, Teresa threw on some clothes and came out with me and the car was gone, I suspect the offender was in the gaggle by the car park and once I was out of sight hurried and moved their car and the whole gaggle had evaporated.

Mountain out of a molehill, yes from a PNT (non-autistic) point of view, yes, live and let live.

From an autistic point of view, it was

1) Illegal – not a vehicular right of way

2) unnecessary – there is more than sufficient street parking available

3) Discourteous – they had no idea whether I needed urgent access to the road for my car

4) Selfish

I felt trapped and the state of panic I was in in indescribable and will last for at least the rest of the day.

I felt well within my rights to fetch Teresa’s car and block them in. In the old days I would have done and yes it may have been out of proportion but I wouldn’t have cared. Nowadays I can recognise that my actions would be seen as wrong and I would be the anti-social party.

So, I didn’t do that, I have not sent the photos to the police or the school/nursery and everyone can pretend it never happened. Unless it happens again that is!

Why am I the one that has to be decent when the person involved clearly simply did not think that their action could have caused any distress.

You can’t argue with selfish people who only think of their own needs, that car could have blocked the track above my car and left me clear access, so even if they had some unknown need to be so close, they could have been closer AND not in my way.

As an autistic I get very stressed when I see people doing selfish things and desperately need to a) inform them and b) make them do something about it.

Guess who is ALWAYS in the wrong when that happens?

Not sure if there was any poo today, I feel there was because I had some poo curry (plus tagliatelle) left over from Teresa’s failed try of it and took a precautionary Loperamide, I wouldn’t have done that if things were locked up.

Fri 26-Apr-2019

Hmm, well whatever else, today was a barren day for poo and my last attempt said – constipation time! I even had poo curry tonight and nothing.

Took a softener (Docusate) before bed and hope by morning things are moving because the longer I wait the more locked up it gets and then things get really painful. Took another about 3am.

Took a 3rd softener this morning and by mid morning a bit of relief!

Work was fine today, getting along fine, not much else to say.

Postscript

I need to remember to write about the whole high and low functioning autism over the weekend, it is an incredibly divisive battle in the twitter verse and I suspect in general and there really is no need.

Otherwise, it has not been my best week and I have been rather reflective this week. The title uses the word depression because I believe in calling a spade a spade. It’s not the end of the world, I knew I was down, what I was down about was quite sufficient to depress many people so I didn’t feel bad about it, I explored it, talked to Teresa and moved onwards. What other choice do I have?

The Bean, Pendeen, 28-Apr-2019

Poo pills, Blue Pills, it’s all pills 13-Apr-2019

The base of the bed for the campervan before mattress cushions are added

Sat 13-Apr-2019

Decided to go for a walk this morning, didn’t go far but more than I’ve done for ages.

Poo incidents in the evening, no loperamide

After my nap we tried the Blue pills again, well they are getting better but no ramrod effect yet 🙂 , oops should I not mention the blue pills?

How little you understand me, nothing embarrassing about erectile dysfunction it is incredibly common and chemical help is available, the fact that it’s struggling to help me is part of my talking about things that nobody likes to 🙂

As it happens, I also read the list of side effects – I do this with ALL drugs I take for safety to spot possible interactions and issues.

The list for Sildenafil is long and very scary, I wonder how many people bother to check?

Sun 14-Apr-2019

Woke up exhausted, however a very normal poo day, tea this evening was Teresa’s chicken and mushroom pie. The original “Poo Pie” which is an awful thing to say about a lovely pie, but does describe the consequences of those mushrooms for me.

So took a loperamide before tea and all was well, I suspect I will pay a price tomorrow, but such is life

Did some detective work to try and find where the power to some of our lighting is shorting out (blue sparks at the distribution panel) only to find that there is NO power. We had an “electrician” replace the distribution panel and find the original fault. He failed to find the fault but did put the faulty circuit on its own circuit breaker and left me to find the problem! We had left that breaker off since he was here since I was rather pre-occupied with broken bones and cancer.

Well, it turns out the circuit breaker is fine but there is NO power to anything from it. Unfortunately tracing the cable to find the fault is difficult since it starts behind the distribution panel and disappears into a wall.

So, I have one place where it might go and I will check that and then we need a better electrician to

  1. Remove the replacement panel
  2. Help find the connection that is not doing anything
  3. Replace the panel and this time use something better than “choc boxes” (my name, there is a pic here from Amazon. In any case their use has made the distribution panel a rat’s nest of cabling and not what I would consider professional or safer 🙁

Frustratingly I could fix it but I am

  1. Not “certified” for electrical work – stupid rule, I seem more competent than many that are! Away from the distribution panel I have no worries but inside it is permanently live!
  2. It would need removing the main (service) fuse into the house am I definitely neither qualified nor trained for that and I wouldn’t trust myself either especially with my (now) shaky hands.

So, I don’t mind paying someone to do it, but finding someone who is both competent at doing the job properly and also not fazed by the bizarre wiring we have in this house – more spurs than rings, indeed I’m not sure we actually have any rings!

Hey ho, but need to get sorted (before I die), so trying to crack on despite all the other pulls on my massively limited time (because of fatigue)

Mon 15-Apr-2019

All quiet on the loo front which is worrying, even though expected. Just plodding on with work.

Tue 16-Apr-2019

At work, tired not much else to say

Wed 17-Apr-2019

I’m sure there was stuff,, but clearly I didn’t make a note, so it’s ben and gone!

Might you have noticed how exhausted I am?

Thu 18-Apr-2019

Hmm, nothing all day ion the poo department, starting to get concerned, especially as we are out all day tomorrow!

Oops, I had all of Teresa’s presents ready, had sorted them at Xmas and was sure I had wrapped them, I hadn’t, I quickly did so, all I had was Xmas wrapping paper, oh well, oops!

Fri 19-Apr-2019

Teresa’s Birthday, sadly no photos, we both forgot, shame

Still mega exhausted but today that MUST take a back seat.

Me up at 5am and Teresa around 6:40am (I said I would wake her around 6:15-6:30, but I couldn’t. It meant we were late leaving and later arriving, but, ….

Still all quiet on the digestive front

Antiques fair at Royal Cornwall show ground in Wadebridge. No big difficulty with traffic (my worry) and in OK.

Disabled parking helps and easy extraction of the buggy.

We went a year ago (not on her Birthday, it’s just this year Good Friday aligned. Anyway, I didn’t have the buggy then and moved very slowly, it was cold and damp and Teresa did not have a good time. This time, with me whizzing around we had a lovely few hours. For me it’s all boring but I love seeing Teresa enjoying herself so I do vicariously … Also, it was a lovely sunny day – I had sunscreen on (necessary, the drugs make my skin hyper sensitive to the sun) and I felt really good, albeit exhausted!

I had also booked us into the Gurnards Head for lunch, 2pm was the best we could do, however we arrived around 1pm and they ushered us straight in so Teresa lost her time sitting in their garden drinking Pimm’s or whatever 🙂

A nice meal – not great but nice, we often find the lunchtime menu is not always as good as the evening but I get tired in the evenings.

Anyway, despite lots of warning signals and me eating a small amount of veg all was well in the bottom department.

Drove home along the coast road, god what muppets! Exactly how do the 4 cars behind me think that we will ALL fit into a passing place for one vehicle and how is the oncoming vehicle(s) is going to get past them when they are blocking the road so I can’t get out of the passing place.

Not once, not twice but every time – there seems to be a lack of learning going on.

Still it’s true every holiday season, it can be true with the locals who are in a hurry and feel if they drive up your exhaust pipe you will drive more recklessly.

Tough, I drive safely and read the road well ahead.

Once home, my body did the, ah so I can have unrestricted access to a toilet, off you go Bean.

I managed to wait until Teresa had unwrapped the rest of her presents and I dashed off.

45 mins later, off I went again, much more severe and a Loperamide.

As I sat on the bed before getting into it, more signals, more evacuation and more drugs. Oh well that drought is well and truly broken 🙂

Still, Teresa liked her presents, the trip out and the meal, I managed to organise (with mega help from her) a nice Birthday. Phew.

Hope I’m around to do the same next year (it’s an awful thought, but my reality is that every occasion like this may be my last, it’s not morbid, but you can never escape the thought and I am quite sure that neither can Teresa.

No nap today so bed and crashed

Postscript

Not such a ranty week, well apart from the muppets who seem both unable to read the road ahead and have no idea how passing places on narrow Cornish roads (with Cornish hedges) work.

It’s the same every year, surely some of them learn, but it seems they don’t, expensive cars frightened to scrape their paint leave no room for anyone and as for finding reverse gear to back into the passing place JUST behind them, heaven forfend they must actually be courteous.

Around here we wave when someone leaves space for us to pass, it is amazing how that changes once the tourists and holiday homers arrive.

Ah well, no rants for paragraphs and the same one comes along twice 🙂

The Bean, Pendeen, 21-Apr-2019

Fatigue and the odd rant, 06-Apr-2019

Sorry no pic this week

Sat 06-Apr-2019

We collected Angelique from Firehouse this morning, happy with the work done, but we need to explore further before finishing the bed (e.g. we need a mattress) and sort out safe transport of the solar panel. It won’t be on the roof because we will rarely be using it.

However, by the time we got home I was wiped out.

After a nap, Teresa and I spent 1/2hr sorting out some of the old campervan gear that we won’t be using this season to make space in the shed to put the solar panel away safely.

By the time it came to move the solar panel from the van to the shed I was shaking so much that Teresa got rather worried.

I had to stop, lean on the van to stop myself falling over and fainting. After a few minutes rest I was able to move the panel to the shed. Went into the house, grabbed some malt loaf, Teresa made me a cup of tea and I crashed out in my arm chair.

That was it for a couple of hours and I slowly came around and had a tad more energy.

For goodness sake, it was 1/2hrs work on top of a pleasant drive.

I’m sure there was poo, but I have no memory

Sun 07-Apr-2019

Really normal poo in the morning, the sort that doesn’t leave any mess to wipe up.

That didn’t last, by the afternoon normal service resumed

Still exhausted, starting to wonder if this fatigue is not just the drugs but also the cancer itself. Fatigue can be one of the “signs”, we will try and look back over the last few years to work out if there were in fact warnings we missed.

As I write the Poo Chronicles (a book on cancer), I have been looking at what signs there were, in hindsight, that I had cancer. Fatigue appears to be one of them, however Teresa has a clearer memory of that than I do, I think it was so slowly incremental I never noticed and maybe it’s only now when the cancer is well developed and the drugs make the fatigue worse that I am noticing?

Interesting thoughts and we will think more.

Mon 08-Apr-2019

Tired, headache but plodding on

Blood pressure higher than ideal again – 125 ish over 87 ish which is more than the preferred 120/80 and worse than my usual 115/75

Tue 09-Apr-2019

Tired, drove to work and the main road out of the village was blocked (nasty accident), so it took me longer to get to work as I took a rural route.

At work, I normally avoid poo issues, but today was a bad day, severe abdominal cramps and an urgent need for the loo. At work there are two disabled loos. Both were occupied and based on past observations, not by disabled people. Given the mess I get in with diarrhoea, a loo with a sink that doesn’t require me to clean my bottom in public is quite a nice thing (too much information, yeah, but if nobody says it out loud, nobody thinks it may be a problem for the people around them). Ignore my mobility issues, gender stuff, it’s a matter of hygiene and as for the smell when it’s bad, well best kept private!

I understand why people who have no need to use disabled loos do, they are more private, …, but unless you need to, please don’t, some of us have no choice and when we need to go, we need to go NOW!

The road was still closed on way home, so another diversion and by the time I got home I was so exhausted I slept 2 hours and still felt lousy afterwards.

Evening more diarrhoea, took loperamide, 50 minutes of sitting quietly downstairs and yet more poo and took another loperamide

Going to be bunged up tomorrow, oh joy!

Still got a headache so checked blood pressure (headache can be a sign of raised blood pressure and it’s something I have to watch like a hawk). Higher than ideal again.

Wed 10-Apr-2019

Feel even lousier, headache, abdominal pain, exhausted. Checked BP laying down before I got up in the morning and it’s back to its “normal”, decided to swap evening BP meds from 8pm to 6pm. Apart from anything else it puts them well before evening diarrhoea and hence gives time for body to absorb before being explosively evicted!

Something odd is happening to me

Heart feels like it’s racing (it’s not), body feels like it is shaking violently – minor tremor in hands only

It feels like I am incredibly nervous/frightened – I’m not.

Autism comes with delayed emotional response – not all, but often, so this might be my reaction to something from hours, days, weeks even months from some triggering activity (that at the time was not at all traumatic), like PTSD without any felt trauma at the time.

This current feeling is new to me with no obvious triggers than I can remember, they are so extreme and I’m not sure why. I am not talking frightened; I am talking terrified!

Thu 11-Apr-2019

What do you mean you skip the poo bits? 🙂

There has been some chatter on the BBC news about how CBT cures IBS (irritable Bowel Syndrome) – Web therapy ‘calmed my irritable bowels’

Of course that was not quite what the specialists were saying, because, of course, it can’t, however it can make it easier to cope as it can redirect your focus from obsessing on the negatives of living with it.

A link to an opinionated article by Will Self A Point of View: ‘How I stopped being intolerant of food intolerance’ was also interesting.

The real problem I have is the gap between the headline and the reality of what was found. The actual research wasn’t even on CBT, but on delivering CBT remotely by phone or internet. That is a totally different subject!

Fri 12-Apr-2019

Ever wondered what a day without a poo blog entry would be like?

Postscript

As Thursday’s article notes, a PMA (positive mental attitude) is important to let you live with the consequences of IBS or similar (like mine) poo issues without it taking over.

There is a point of view that I should listen to such an argument and shut up and like Friday exclude poo from this blog, my answer is why?

Yes, of course, I have to ensure my head is not in an “oh, it’s too much, I give up” state.

On the other hand, anybody who thinks poo or cancer is easy to live with or that you don’t get depressed at times is incredibly naïve, insultingly so

So, in these blogs I try to be honest about what is happening to me, not because I am obsessed, but because there are far too many experts – armchair and professional who know what I need to do and are wrong.

I trained to be a counsellor alongside Teresa, the fact that I couldn’t complete the last month or so was because of unacceptable abuse from one of the course tutors; does not change the fact, that, putting aside the “physician heal thyself, problem of “don’t do what I do, do what I say, I live my life very aware of my strengths and weaknesses and try to not be dominated by either.

There are two fundamental ideas I bring out of that training

1) Being self-aware, that is, at its heart, what talking therapies are doing (CBT included). If you understand yourself and why you are reacting you can often do something about it when it causes you a problem.

2) Congruence, that is what the outside world sees and what is happing inside you is consistent. Another way of putting it is “not living a lie”.

I left the course because in order to pass it I had to behave in class in a way that was not consistent with who I am (in my case being autistic).

So, I write about my everyday thoughts and experiences because they are what my life is, poo is frequently in my thoughts, it doesn’t stop me doing what I want to do, it does make me aware of what can happen and what plan B I need.

I am sorry (no I’m not but apparently saying so stops people being offended) no amount of positive thinking will stop a diarrhoea attach when it’s happening and the absence of access to a loo is not a problem, problems are easy, it is, for the individual a humiliating disaster. The fear of that is real and unavoidable, CBT (or anything that increases self-awareness) means you recognise it could happen, you know your body well enough to know if it is more or less likely, you know what drugs to take and what food intolerance to be especially careful of, make sure you know where toilets are and then just get on with life.

That’s not obsessing, it is being realistic. I am autistic, obsession comes easily, but I know it does and I monitor myself and so does Teresa and she has no fear of pointing out if she thinks I am obsessing too much and I DO listen to her because I know I can miss it no matter how self-aware I think I am.

I write about feeling depressed, depression is not an evil, it is a natural part of the human condition, without it where is elation? The problem is when it takes over, sometimes drugs are the only way to deal with that if you have a chemical imbalance, otherwise “talking” therapies can help a lot. Self-awareness helps.

I know when I am depressed, that I am depressed, and that no matter how it “feels” that it will pass, that’s because being concerned that your body is not working properly or that you may be dead by Xmas is perfectly reasonable, but it’s not the end of the world, well it might be by Xmas 🙂 .

I would like to make it clear that this is about ME, depression hits people for different reasons and to different intensities. People vary with the support they have around them, they differ in the internal resources they have and some, as I said, have chemical imbalances in their body which mean that they have no choice as to how depression hits them or how they cope with it.

But for most of us, PMA helps and accepting that not every day can be a good day and that it’s ok to sit sobbing at the awfulness of it all.

So, I write about poo, depression and anything else that crops up in my life as a balance to my external appearance which is “you look good”. That’s congruence, ensuring that my inside and outside are consistent which makes it much easier to be self-aware.

So, the poo reports will continue, I have given you a day’s break from them, normal service will be resumed.

OK, I can’t help myself, poo has been awful for the last few days and I didn’t say. Does that matter. It depends, if you don’t have the problem, it’s a relief, I guess. If you do and think it’s only you that gets ground down by it, then maybe not, I hope the latter is the case because that is who that part of the blogs is for.

For the rest, just remember if we meet, I can go running off to the loo for no apparent reason and if things are bad, the farts are loud, extensive and really horrible. In public that is acutely embarrassing. It’s bad enough at home just with Teresa. Imagine in public, at work. At a friend’s house, I have no control, I really don’t, so for anyone who ever finds themselves in my place, it’s OK, if it happens when I am around, I hope we can both laugh, hold our noses and accept that fatal farts beats being dead 🙂

The Bean, Pendeen, 14-Apr-2019

Food, Poo, Angelique and the problem with not having a dog – 30-Mar-2019

A longer blog than usual, but it is, I think, still worth the effort

All will become clear 🙂

Sat 30-Mar-2019

So, to start the blog where we left off last week:

Friday morning was normal (ish for me) poo and all was “well” with the world.

Friday evening, wham bang out of the blue, sensible diet, no triggers eaten and severe diarrhoea, what we call a “full Barney” which is “gushing”, even on its own it is very distressing. On wiping bottom finding traces of blood, now you are into SCAREY territory, has the cancer gone into my bowels?

Well, it should just be that problematic blood vessel that bleeds when I’ve pushed too hard. But I hadn’t – it was explosive and needed no push at all, quite the contrary. Is this a trace of blood from the morning when I may have “pushed” ever so slightly?

The loo itself looks more brown than red, so maybe a smear, maybe not, start worrying.

Took Loperamide, got to stop it running out of my bottom 🙂

It did,

So, Saturday dawns, nothing, all day, nothing, worrying my socks off about what might be happening, but nothing, all day absolutely nothing. So, no bad news, no good news, but starting to feel rather uncomfortable and worrying we are in constipation land which means “pushing” without pushing, …

Plan – need to have a plan. Assuming nothing happens (it didn’t) take a “softener” when I wake between 12-2am on Sunday morning (I did).

In the meantime I did some work, didn’t get a lot done, Teresa and I had some issues, personal stuff that revolves around her difficulty understanding sometimes that my autistic world and my PNT world are in the same place – nature and nurture are VERY different in me but are part of who I am and it’s dangerous to only pay attention to the nurture part because the nature part – my autistic nature, can get very distressed by something that my nurture – PNT sensitive side understands is perfectly reasonable, but sometimes that’s not enough

Anyway, we both lost a lot of the day and didn’t feel great.

Later on, when we were starting to recover, I decided to make some Malt loaf with a bit more zip so added some stem ginger. I also mixed it differently to normal. Whatever the result it was lovely and most and had risen better than it usually does. Prob needs a bit more ginger (ground ginger) and maybe more malt extract.

But I’m liking this new version

Sun 31-Mar-2019

Woke up at around 5:30am but since clocks went back it was more like 4:30am, got up and had breakfast. No signs of action so another softener.

Four or five “I might be interested” messages, but nothing, bit of a fart and that’s it. This is not unusual, with luck the fat is in the loo, occasionally I am caught unawares and it’s in a public space. We have gas masks in all the rooms for this eventuality. They are not called fatal farts (or killer farts) for no reason!

Bout 11am and this time, YES, some very gentle not pushing, pushing – hard to describe, the pushing is more mental than physical.

Anyway, plenty of poo, soft but NO blood, phew think I escaped there.

But why – severe diarrhoea to constipation in 24 hours, what next?

Oh well, crisis over for now, but …

Quite a lot of work done as I’m going to be losing Tuesday morning going over to Firehouse to discuss some of the things he is doing and deliver the seat covering – fantastic pattern and colour – I suspect most people will think it’s wrong for the van, but we love it, everything else in there is so beige, even the new curtains are boring black!

Plus, the new solar panel to decide how it’s going to be wired up and made removable so we only carry it around for festivals. Trouble is it is rather bigger than I thought it was, I accidently bought the larger size. Given the supplier “lost” it a week ago (well their courier lost it) and I had to jump up and down and metaphorically “shout”, I got the replacement on Friday but I really can’t say “oops” that was the wrong one can we exchange it.

Still, hopefully it can be used and it will, in the sun give us an excellent top up for the batteries in Festivals.

I also decided I wanted to make scotch eggs. We had some sausage meat in the freezer left over from Xmas, I hard boiled some eggs and had a go. I didn’t egg and breadcrumb because I didn’t want that.

Our sausage meat doesn’t throw out a load of fat when cooking so I was optimistic about shrinkage.

Too optimistic, two were almost OK and two NOT ok. I think the covering was a bit thin and maybe I cooked them on too gentle a heat and the outside was soft for too long.

I don’t want them deep fried – too fatty, so oven baked and I will use a VERY hot oven next time until the outside has firmed up then turn the over down to finish cooking, Teresa also suggested adding some egg to the sausage meat to “bind it”.

We will see. All part of making sure I have “safe” (for bottoms) food for the festivals. Meat is OK and eggs tend to “bind” (Teresa says euphemistically) so they shouldn’t be a trigger.

Anyway, I will have another go in a few weeks and these, even though cracked open still taste nice, but I’m sure I can tinker more with the flavour yet.

Hmm, an hour later and we back to watery poo again, only a bit so fingers crossed it’s just a side effect of the softeners!

I wish I could describe how it feels, but here we go:

Imagine driving your car, all is fine, accelerator and brake all working fine and then suddenly the accelerator goes flat down when you aren’t touching it, car careering along at full speed, panic. Then you find a way to stop the accelerator, unfortunately this applies the brake at max and suddenly you are decelerating like you hit the brick wall. You sort the brakes out and the accelerator goes wild again

Or, maybe, you sort the brakes or accelerator and the car feels OK, a day later, a week later it all happens again, maybe it’s careering out of control for hours, maybe days, maybe the brakes are stuck and you are going nowhere for hours, maybe days.

You find you no longer trust your car, just getting in there raises your stress levels, you are always planning for what to do if the accelerator/brake play up again.

THAT is my life living with my digestive tract. The big difference is that I have to live in this body (well that or die!) so all I can do is make sure that I have all the tools to hand to fix the accelerator and/or brake but I also need a toilet ALWAYS handy to deal with the consequence of that accelerator pedal.

On top of that what can people see from the outside – nothing! None of you would know how grim it can be if I didn’t write about it, incessantly I hear you say; however, it IS incessant and it is perfectly normal in my situation and there are a lot of people in the same position and not just drug induced

Oh, and now public toilets are harder and harder to find which means ANY trip out is choregraphed so that I am never far from a shop (coffee or retail) or other facility with a toilet.

When the need calls, “disgusting” is the least of my worries, awful as public toilets can be, at least they are (well were) there.

So, it was normal this morning, however later that morning the dreaded D poked it’s head out, not much but enough to worry about. Shortly after lunch but before my nap I felt great gurgling, after the blood on Friday I really didn’t want that (it was a stupid fear but that’s what it gets like) so I stayed very still in my chair and asked Teresa to get an Imodium Instant – still Loperamide but it acts faster and usually not so strongly. Expensive and not available on prescription, but when needs must.

Stayed sat for over an hour frightened to move in case the messages got worse. Eventually I nipped quickly to the loo for a wee and crossed everything (which makes doing a wee a tad tricky – you try it with your legs crossed 🙂 ). So far, so good. Into bed for my afternoon nap and laid on my back – I know my side is my preferred sleeping position (less coccyx pain) but it also tends to encourage Diarrhoea if it’s in the wings.

So, I got my nap, things settled down and now, of course, it feels like I’m heading towards constipation land AGAIN!!! I only just got out of it this morning.

This drives me mad, in the end it will calm down (it usually does) but it’s difficult and since I am out on Tuesday and hence not always near a loo, even more worrying.

Oh well

Mon 01-Apr-2019

A good night, but my tummy is very sore, of course it’s not my tummy that’s higher up, but it’s an easy shortcut/metaphor?

Fingers cross things just start up some time today “normally”

We have another “celebratory” talking about cancer on the BBC TV this morning

I’m glad he did awareness is vital, poo or wee, get it checked – absolutely.

However, it all sounded very jolly, caught early enough, colonoscopy not too bad (from feedback, that’s not always true), chemo not too bad, prognosis excellent, …

Well, he did say that he was fortunate in that his experience wasn’t too bad.

BUT, all that jolly laughter must

  1. Seem hard for those whose “journey” (awful word) has not been quite so easy or jolly
  2. Sets an expectation of something being easier than it can be.

I was lucky (hmmm), my cancer was sufficiently established that there was never any chance of curing it. All my consultant could talk about was quality of life while you are still alive, that is what treatment was for!

Take a couple of pills and we will see and since you asked (how brave you are) your prognosis is 2-3 years.

As anyone who has followed this blog will know, the impact on my life of those two little pills is quite severe, the fatigue and poo, never mind the myriad of other side effects, changes your life. My quality of life plummeted when I started treatment, however my time alive was extended. Not quite what the oncologist talked about. For me, that is the preferred option. For others, they would rather a higher quality of life for a shorter time. We are all different.

So, good for Jeremy Bowen talking about bowel cancer, but can we please be a lot more careful about making it all sound so simple and easy, cancer is FATAL, but if you are lucky other things (like old age) will kill you first.

Out and about I am a cheerful soul and the constant refrain is “you look so well”, so I could be accused of doing the same, that’s why these blogs exist –

  1. I get the “jolly” aspect, I feel jolly when I behave jolly – that’s how CBT (Cognitive Behaviour Therapy) works, I have no problem with that. I rarely answer the “how are you” with “fine”, the best they get is “as well as can be expected”, if they really want to know I have no problem supplying the highlights 🙂
  2. But the reality is nowhere near as much fun and finding that out when you weren’t expecting it or worse feeling you are the only one struggling is awful and so the blogs are not quite the unvarnished truth – that would be tough to take, but it’s close.

Hmmm, we seem to be having “#TransDayOfVisibility, well if you ignore the fact that I am non binary and not transgender (as far as I can tell, since I am happy being neither/both genders and feel no need to become a different one) then EVERY day is Bean awareness day!

It’s also #AutismAwarenessMonth / #AutismAcceptanceMonth and whilst laudable in its aims, I prefer #IAmAutisticGetOverIt

I am aware these blogs tend to be more about #cancer these days than #autism #NonBinaryGender (bloody hash tags, I can never keep track of the “right” ones so just make them up 🙂 but my reality is:

I AM autistic. I AM non-binary gendered. I HAVE cancer.

The first two are just part of Bean being Bean, the latter has been imposed on me, I neither had a choice, nor is it a core part of me, it arrived as a Johnny Come Lately and is not welcome.

The first two can be challenging, but it’s a challenge I am fine with, it’s the challenge of being alive. The latter is most certainly challenging but it’s been imposed on my body by chance and I’m NOT ok with that.

Well, no poo, no surprise but worrying. Teresa was having a salad for tea so I decided to have some “poo lasagne” that was in the freezer, hopefully that “eases” things without needing drugs?

Well, at first it did the job perfectly, pretty normal poo, bit of loose stuff that helped but really RESULT. Except, …, I know better and there is the phenonium of “bung out, all out”. That is when I experience something almost normal that has been “liberated” by a food reaction, then as night follows day, within the hour it’s one out all the rest out at high speed.

And so it was 🙁

I did not lay on my side till gone 2am just to avoid triggering anything else. I hadn’t taken a Loperamide to give my body chance to settle and I know that laying on my side can encourage it. That bottom of mine needs no extra incentives, so I put up with the discomfort of laying on my back (that coccyx problem never goes away) and it worked.

Tue 02-Apr-2019

Off today to deliver extra bits for Angelique’s updates. This brief article describes the previous mods and shows Angelique looking very fine too 🙂

All quiet on the poo front, all day, no surprise after last nights “evacuations”. For tea I had some chilli that seems to have an “easing” effect and would, I hoped, just ease things without any consequences.

Well, it was a battle of wills this evening, but I out waited it and after 15 mins sitting on the loo, yes, I can do it normal, there you go, what were you worried about?

However remember “bung out …”, I’m now waiting for the inevitable, it’s not 100% guaranteed, but, .,.,

Away from the poo, I am getting very distressed at the movement that says Women are not diagnosed autistic because they manifest autism differently (less aggressively), that is absolutely true, our current diagnostic process is rubbish for ANYONE who does not fit the stereotypical male model for autism.

However, their solution is to have a “female” autism with separate diagnostic criteria.

Now it is blindingly obvious that not all males fit the male pattern and some females do. And vice versa, so what we really need is more diverse diagnostic criteria to catch the different ways that autism manifests.

Non contentious you’d think, oh no, I am a typical male imperialist bastard trying to oppress women. Really? ask Tereasa if that’s the sort of person I am.

Once they realise that I am non binary, oh my goodness, the claws really come out, and the trans haters (not a proper female, not got a womb, so must be a male chauvinist pig desperate to hurt women) apply their claws, they are really quite unpleasant about it.

As it happens, I am NOT transgender, I know some Male to Female transgender that continue to display very male behaviours and some that display very female behaviours. Typically, they display the same behaviours before and after transition. Same for female to male.

However never let the truth get in the way of a good prejudice?

Dammit yes, I am a biological male who wears a dress and is far more feminine than a number of women I know.

However, in the end I am just BEAN, I am not male/female, autistic/PNT (predominant Neurotype, aka not autistic), …

I am far more likely to be assaulted for how I dress than any woman despite the fact I am 6’ tall and 16 stone. Indeed because of that I am easy to spot and as any of you who know me know, I make no attempt to hide who I am.

Hey ho, this blog is my “speakers’ corner” but I would happily sit down and talk about any of this (autism, gender, cancer, …) face to face. Just meet me with an open mind and it will be fun. My worry is that especially in these days it is so easy to take an extreme view and ignore any evidence that doesn’t support your argument and listen to any evidence, no matter how crazy that does support it.

Don’t get me started on those that think vaccines are bad and it’s better not to take them!

My cancer drugs are bad, pure evil, you all know that, I write about it all the time, I willing take them because the alternative is worse. Yes, my drugs may easily kill me, before the cancer would have, but the odds are they won’t, especially if I take an active part in monitoring them.

Measles, mumps, rubella, whooping cough, …, they are evil diseases and quite preventable. Risks, yes of course, cause autism – no way, that was proved eons ago.

Yet, people don’t listen to facts but to assertions. The harm – well there are a minimum of two

  1. Parents are choosing on behalf of their children, but it’s the children that live (and die) with the consequence – whether it is vaccines, global warming or Brexit, …
  2. Immune compromised people are only safe from those diseases if the population around them don’t carry it – herd immunity it’s called.

We live in a shared world, compromise, tolerance and respect are the entrance fee. Selfishness is not.

Wed 03-Apr-2019

Let’s leave politics alone for a bit and get back to a much less contentious subject POO 🙂

All quiet on the poo front and plodding away at work. I do feel very vacant/detached, no idea why, maybe fatigue, but just pushing onwards.

30, 29, …, yup out of nowhere urgent messages and this time it wasn’t crying wolf. Still diarrhoea yes, but not the nasty sort (define nasty Bean!). Better out than in?

Back to work …

Late evening after tea of Teresa’s Tagliatelle plus ham, asparagus and cheese sauce without the fatal asparagus and yes, the urgent messages are building, off I dash, goodnight, 19, 18, 17, …

1, 0. Nope, nothing happened (well obviously a quick fart)! But I daren’t ignore the warnings.

Getting ready for bed an hour later, 3, 2, 1, …, woosh, away we go.

Now what caused that? Was it the small amount (150g) of chilli I had for my mid mornings – very diluted with rice, but it was white rice so little roughage, probably not. Was it that today, being a Wednesday (could have been a Saturday) is a day I don’t take Ondansetron for nausea, one of whose side effects is constipation. Because another of its side effects is that it stops working if you take it too often, I have found skipping it every 3 days works. On those days I take Metoclopramide which has less of a constipatory effect, but less of a nausea control effect.

Maybe it was the drugs, maybe it was the food. Maybe it was the that the asparagus was in Teresa’s ham rolls in the same disk as mine and it “contaminated” my food with a few grains of “freshness” and my digestive track rebelled at such an insult.

I don’t know!

The cancer screws me up, the cancer drugs have massive side effects, the drugs I take to manage the side effects have side effects, the drugs I take to manage those side effects (like blood pressure, diarrhoea, constipation) have side effects.

Some of those side effects balance each other, some re-enforce and some just play silly buggers

To an autistic who needs clarity and order and rules it’s a mess (literally sometimes 🙂

Oh well, to bed and fingers crossed it will settle down without needing Loperamide to calm down the diarrhoea (I didn’t thank goodness)

Thu 04-Apr-2019

A good night, one loo trip at 12:30 ish upstairs in case of poo, nothing, second around 4am downstairs as feel safe and was.

Post breakfast (I want to write post Brexit, to my dyslexic brain it’s the same word) loo trip, just expecting a wee but you never know.

…..

Sorry my alarm had gone off – 2 hours from when I took my morning cocktail of Blood Pressure, nausea and Vit C pills and it’s time for my cancer meds. Once taken and set timer for another hour and then I can eat if I want to. That 2hrs before and 1hr after are necessary to ensure maximum absorption of the cancer drugs (found during trials) and I am fanatical about ensuring I stick to the times even when it’s very inconvenient. The times are sometimes extended form 2hrs and 1hr but NEVER shortened no matter how hungry I feel.

….

So back to poo, it was normal (for me, not constipated hard like a rock or diarrhoea loose like a fluid), I felt I could gently push, yes, no blood, a second wipe, oh no a touch and on thumb too – oh double no (at this point the Freddy word is appropriate), when blood is bad it gets through loo paper (even three sheets that are needed to cope with soggy (not quite diarrhoea) poos, so alarms, …

Closer look, there is a small cut on my thumb where the blood came from. Oh great, not satisfied with diarrhoea, my bottom department now really does have the knives out for me, this is getting silly.

No, I haven’t lost my mind, I realise that there are no knives in my bottom – though the pain I get sometimes feels like it!

I had been reading a camping site catalogue that has thin but tough paper and it was probably that gave me a paper cut!

Still, just for a moment I tried to work out how my bottom could have cut me – stupid I know, but dealing with so many side effects does things to your head!

After all of that, back to work, thank goodness I am working from home, being in the office would be so much harder in terms of bottom worries!

Woke up from my afternoon nap, alarm bells ringing, 15, 14, 13, …, just made it, where did that come from – well not so much, where I know that, but why?

Is my new malt loaf to blame?

Hmmm

All quiet.

I am fed up with my limited diet and so asked Teresa to get me a Chinese takeaway. I know it’s unhealthy but what I have (and it’s always the same, of course it is!) chicken chow Mein and chicken curry. I could not eat all of that but I divide it over 3 plates so I only have 350gms each day.

I know it’s terribly unhealthy but I can taste it and it’s different what I usually have.

For me it was medicinal – have to ask the Dr if I can have it on prescription?

7:30pm, great gurgling and pressure, yup Mx D is here, dealt with it and took a Loperamide, don’t want to but it’s been gurgling all day and clearly not happy.

Sounds like Angelique is finished but I can’t collect her before the weekend (at the earliest) 🙁 because Teressa needs her car and is out and about.

Oh well, I was due to go to the vampires tomorrow (for a venesection) but they needed to postpone for a week, so I don’t need to book a taxi – phew, I hate having to have anyone drive me anywhere and the logistics of dealing with a taxi, giving verbal instructions paying a tip, it is just so stressful, but it was needs must. Now it’s not a problem.

So, did you read that and realise that’s just one small bit of how being autistic can try to control my life. I would have coped with the taxi, but the stress involved in “coping” would have wiped me out for the rest of the day.

Fri 05-Apr-2019

Today was set aside for working on my assignment, but I am feeling very fragile – I was yesterday hence the “comfort food”, so I decided to do some self care.

Don’t know why I feel fragile (physically AND emotionally), well obviously I can guess, but not specifically at the moment.

I have tinkered with the assignment, but in a gentle, relaxed way – not a lot done, but I enjoyed what I did which is good

Poo is ever present and it was gurgling well before lunch and straight after, away we go! Now, just before tea there are strong messages and I suspect a trip is called for. There’s always an added “frissance” (oh it’s spelt frisson, who’d have guessed?) when I get painful stomach cramps, those massive stabs of pain are so much fun 🙂

So, what did my self-care consist of – watching three episodes of The Beiderbecke Affair, the first of The Beiderbecke Trilogy, with the two sequels series being The Beiderbecke Tapes (1987) and The Beiderbecke Connection (1988).

I was set in Leeds in 1985 with music in the style of Bix Beiderbecke

Apparently extensive use is made of leitmotifs for the various characters. I wouldn’t know that but I love how there are different musical phrases that always precede each character 🙂

Set in 1985, I would have been 30 then, I first saw one of the sequels in 1987/1988 then the repeat of the first. So, it was very much of “my time”.

I come from the North East of England (Teesside not Tyneside where James Bolan is from), the school it is set in looks just like my secondary school in Billingham. It was set in Leeds which is very reminiscent of (just down the road from) Sheffield where I was at University between 1976 and 1981.

All in all, it hits so many nostalgic buttons it’s worse (well I think better) than porn in terms of its addictive properties for me.

I have watched the videos many times but not recently and certainly not since “diagnosis”.

I have written before how getting a “death sentence” results, for me, in a very slow effect of the “my whole life flashed before me in the moment of impending death” trope (often stated fact but not necessarily true)

My whole life gets replayed in my dreams (and nightmares) more frequently and more intensely than it ever did before.

Anyway, I have been emotionally fragile for the last few days and it fitted my mood, it was a gentle touch that fitted rather than aggravated my mood and was soothing and worthy of the term self-care NOT self-indulgence though it was the later too 🙂 .

I loved what Wikipedia called leitmotiv (a “short, constantly recurring musical phrase”[1] associated with a particular person, place, or idea) that flows through it. I love the jazz music, I love the female character, I love the male character, I love the supporting characters.

Watching through the lens of autism (the first time I have), there is a lot in there that one could “surmise”, repetitive behaviour, obsessions, inability to handle relationships, it’s all in there.

But for me it’s just good fun.

I was able to “encourage” Teresa to watch it with me once (mind you she saw it when it was first released with her husband, also David), she has no ability to watch repeats, certainly not the number I indulge in, so I watch it when she’s out or busy – not clandestinely because of course I tell her what I am doing, I tell her EVERYTHING, she is constantly monitoring me, having your spouse in my state does that to you (her). I told her this morning I still felt fragile and her first reaction was “I won’t go to my seminar” I told her not to talk cobblers and bugger off, I would be fine and look after myself. I did, thank you Alan Plater.

Postscript

Now I appreciate for many people my “obsession” with colour, texture, and fluidity of poo comes across as obsessive, downright weird in fact. However, issues with poo are a direct result of the drugs I take and it is vitally important that I manage them as my body is no longer, on its own, able to do so. It is totally different to something like having to inject insulin every day to help the body when it can’t produce enough on its own and yet it’s helping the body along when it’s unable, for whatever reason, to regulate itself, something we take for granted.

Yes, poo is rather unattractive compared to a needle – but ask those who have to do the injection I doubt they will consider it to be a bunch of laughs either.

So, I manage my poo, I keep a close eye on it, I manage my wee too as my kidneys are under attack directly by the cancer and also by the blood pressure pills, I need to take.

I live in a world where staying alive means taking an active involvement in how my body functions and what I need to do to keep it going.

As parents you monitor your babies’ poo, ensure it is working all right, worry about the colour in the early days (it is vile), but over time the baby and its body learn self-control and regulation and all is well. As time passes, sometimes we lose control and end up in incontinence – not something that’s fun for those that suffer it, but neither is it fatal, so we cope. Sometimes regulation breaks down as it has for me. It’s not nice but it is manageable and you cope.

I write about it so much, not for sympathy but because “we” (the English in particular I think) get so embarrassed about bodily functions – even the fun ones like sex for goodness sake 🙂 and I want to demystify what living with bowels that like to do their own thing is like, I’m not alone but I am visible – pretty much like my poo.

I have started writing a book with the working title of “The Poo Chronicles” taken from these blogs and extended into the world of poo from a personal perspective.

I doubt it will be a best seller, but I do hope it will help some people who find it difficult to talk about and ask questions about, and, when that is life and death like bowel cancer or prostate cancer (if we are talking wee) it must not be hidden away or feel any sort of embarrassment.

Nowadays if I am in “public”, I make no bones about my need to suddenly dash out of the room or double up in pain. Where appropriate I have no qualms confessing to fatal farts, what’s the point, it’s not something I have any control over and to be honest I’d rather laugh about it than be embarrassed about it!

After all, I don’t have a dog to blame!

The Bean, Pendeen, 07-Apr-2019