Letter from the North

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

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