Letter from the North

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

Cutey pie Burlington in the sun on my bed

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

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

Sat 27-Apr-2019

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

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

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

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

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

And again, this afternoon

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

Will I regret this?

Sun 28-Apr-2019

More soft but normal poo, albeit urgent this morning

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

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

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

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

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

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

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

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

Mon 29-Apr-2019

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

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

Work today has been tough, fatigue is draining.

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

Tue 30-Apr-2019

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

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

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

Wed 01-May-2019

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

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

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

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

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

Thu 02-May-2019

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

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

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

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

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

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

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

Cats were pleased to see us.

We both ate then crashed.

Fri 03-May-2019

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

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

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

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

New Seat Material for Angelique

Sat 23-Mar-2019

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

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

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

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

Ordinary poo before tea

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

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

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

Sun 24-Mar-2019

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

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

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

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

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

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

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

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

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

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

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

Mon 25-Mar-2019

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

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

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

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

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

Tue 26-Mar-2019

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

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

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

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

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

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

Wed 27-Mar-2019

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

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

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

Afternoon nap, only really dozed so back to work

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

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

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

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

Oh joy, welcome to my world of poo 🙂

Thu 28-Mar-2019

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

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

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

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

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

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

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

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

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

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

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

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

Fri 29-Mar-2019

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

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

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

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

Postscript

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

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

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

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

The Bean, Pendeen, 31-Mar-2019

Brexit, Drugs and Poo – 16-Mar-2019

Bookends – you can see Barneys face. Spooks is invisible because he is all brown and unless he opens his moth and shows his pink tongue, he is rather “spooky”

Sat 16-Mar-2019

I took Teresa to Sainsburys this morning as we both wanted a few moments out of the house. She had wanted to go on her own, but my experience is that despite feeling better she wasn’t. By the time we got home, that was confirmed and we both crashed, that took out all the morning.

In the afternoon (after my nap obviously) I transcribed my tutors video notes on Task 2 into comments on the task – easier for me to process quickly in the context of what I wrote.

Thanks to the tutor I realised a way to do what I wanted how I wanted to – autoethnography – who knew? Probably any academic out there but I didn’t and it describes exactly how I want to study autism – from the inside.

Continued to watch the video feed of the docking of crew dragon (SpaceX) I suspect most (all?) of you think it is “boring, like watching paint dry for most, but for me, a child of Apollo, it is fascinating to be able to watch so much detail. Loving it.

Popped some (dried) kidney and black eye beans in to soak overnight,

Sun 17-Mar-2019

Made chilli – always takes time – around 2-3 hours – all prep, then leave in slow cooker to cook for a few hours and then in fridge for a couple of days for flavour to develop. At this stage it’s very raw and misleading and the temptation is to “fix” it and I know its flavour changes (and improves) a lot given time, so leave it alone Bean (I did).

Had a nap

Trying for task 3 – didn’t get there.

All OK, then around 8pm needed loo, relatively normal

20 minutes later, wham the big D is back, took Loperamide and then to bed. 15 mins later – wham again dose – took another Loperamide

Went to bed (again) and laid still, woke couple of hours later and yes, wham again! This time (for the first time) it felt like things had finished and I didn’t take a 3rd Loperamide.

Mon 18-Mar-2019

I now have a very sore “tummy” feel like I’ve been punched. It’s not agony it is uncomfortable and I don’t like touching my abdomen (and the pressure of clothes!)

Oh well, the joys of diarrhoea, I just wish I knew what triggered it because there was nothing obvious in what I ate yesterday. I guess it’s just “one of those things”, but it’s really no fun.

Diarrhoea is normal for me, almost every day, but this was a particular nasty time and it leaves you exhausted and sore.

Tue 19-Mar-2019

Woke early, in the office earlier than of late but actually around my normal time from 18 months ago.

All ok, got back exhausted though I only got intermittent sleep from my nap, up and away and back in office for some work.

Poor Teresa has gone downhill with this virus. As seems to be quite common now but I don’t remember it being the case when I was younger, these virus’s come back for a 2nd and often 3rd bite at the cherry before they finish

Wed 20-Mar-2019

Yup, she is back to feeling lousy.

Me, well apart from being constipated (go figure, my digestive system has its own life independent of me!) I am fine, just getting on with work. I had a constant waking night and a struggle to get out of bed (it took a good hour) but once moving I am ok.

Thu 21-Mar-2019

Went to my GP this morning for a blood pressure review – something that happens once a year when you are hypertensive (which I already was before starting on the blood pressure raising cancer med – pazopanib).

He told me that one of my pain killers is not available at all – fortunately I rarely use it but he suggested I hoard what I have like gold dust. My primary Blood Pressure drug is getting hard to find, without it I cannot take my cancer meds!

Whilst there are possible alternatives (at the moment), my body is stable with my current mix of meds, any change is a problem and my cancer is only “stable”, instability of ANY sort is worrying. I take a cocktail of drugs all of which interact with each other, me and the cancer, at the moment there is a balance, I am not keen on anything that could disturb that.

What happens if my cancer meds themselves go short supply; I am truly screwed! For now, I have a three-month supply of that, but in three months’ time who knows what further mess our wonderful prime minister and government will have achieved?

This is MY life and that of very many others that our government is playing Russian roulette with. Hoping for the best is just not good enough.

I don’t care which side of the Brexit debate you sit on, the currently level of Mupitude displayed by our Prime Minister and her government and our MP’s is simply unacceptable and they ALL should be …. insert appropriate blood thirsty comment

One of the side effects of the amount of blood pressure meds I have to take (so that I can take the cancer drug – it’s 3-4 times what I was taking for high BP before) is that it can cause ED (erectile disfunction), all the fun of “brewers droop” without the beer (being tea total now!)

I discussed it with both the oncologist and my GP and fortunately, that blue pill, Sildenafil (aka Viagra) does not conflict with ANY of my meds or the cancer itself and its apparently not in short supply, can’t imagine any men in power letting that one run short?

However, it’s another drug I need (as part of our quality of life) in dealing with this cancer. At least it’s free for me, small benefit of either being over 60 or having cancer (both qualify for free prescriptions)

Nothing all day in the poo department, then there is this (very common) pattern:

I lay down and watch bargain hunt with Teresa, no hint, an hour later I roll onto my left-hand side to go to sleep and urgent messages and great gurgling’s in less than a minute and all out, well a rapid dash to the loo and then … Clearly moving my insides to that position “releases” something!

Fri 22-Mar-2019

Woke 4am, gave up at 5am and here at work 5:30am

Desperate loo messages then all that happens is a pencil eraser size bit of poo + fart. That’s it, just exactly what was SO desperate?

A couple of hours later, similar milder messages, a bit of patience sitting waiting on the loo (where bit can mean 10 minutes) and all is well in the bottom cleansing department.

There is no rhyme nor reason for the variation. Maybe there never was and I’m now “obsessed” so notice it, …

So, stop obsessing Bean it doesn’t matter – it does if you are driving or in a public place and trying to find a loo is a major problem only to find – no need, but knowing that quite the opposite could be true and that REALLY is a problem.

Postscript

The potential impact of impact on drug supply, indeed NHSA treatment in general is not a theoretical concept for me now, it is real and it is here. I am NOT alone. There have been warnings about this since Brexit was first mooted. Has effective action been taken, has it heck. So, if you voted for Brexit is that “really” what you voted for? I doubt it, no matter which side of the fence, most people are reasonable, albeit sometimes frightened,

But this is the real world and it’s not a game and I am all right might work if you truly are, but an awful lot of people are NOT all right and I did not vote for ANY government that would be this incompetent (no matter the party-political flavour). Oops yes, I did, and I have voted for all three of the “major” players over the years. Their level of competence has not really been any different, different sorts of incompetence for sure, but overall, nope, …

As for our old friend poo, well, it trundles on its own sweet way, taking no notice of me or the trouble it causes. Bit like the government really 🙂

Post-Postscript

You’ve seen pics of the detritus after I have portioned out my drugs, this is what a weeks supply looks like:


The cancer drugs are the two large pills in the centre compartment. ALL the rest are to deal with the nausea, blood pressure and muscle spasm issues that are side effects of the cancer drugs. Add on the extra drugs I take to control diarrhoea and constipation which I take “as needed”, the pain killers, and the new “blue pills” (to be taken as needed 🙂 ) and it’s not a small cocktail (though I know some have a much larger load than me).

That’s why I worry about drug supply issues, it’s not just the key drug but all the others necessary for me to be able to take the cancer drug and (literally) survive the experience (the BP issues alone would kill me if not controlled)

AND they need to be in balance, the anti-nausea drugs increase the risk of constipation others can increase the risk of diarrhoea, as does what I eat. Most of them affect (make worse) the fatigue.

I walk a tightrope and when successful I have an acceptable quality of life (albeit not at all what it was), when I slip, it’s really quite unpleasant. I’ve had the BP meds go wrong a couple of times and it is very scary, you know the difficulty I have with poo. The nausea is usually OK but I take strong drugs every day to keep it that way.

I am NOT alone this affects a lot of people, some more badly than me

“Ooops, we didn’t think about that” or “we hoped it wouldn’t be a problem” or (worst of all) “it’s not a problem” when it manifestly already is, is simply NOT good enough, especially given all the advice that it WOULD be a problem.

The Bean, Pendeen, 24-Mar-2019 5

The scan results are in and Teresa is poorly – 09-Mar-2019

Sat 09-Mar-2019 

A rotten night’s sleep, slept till about 1:30am and then the stormy winds down here in West Cornwall kept me awake. When you are as noise sensitive as I am, it’s impossible. So, all day I was totally exhausted. That was a problem because I needed to make “significant” (thanks Teresa May for destroying the meaning of THAT word, progress on the next task of my assignment due tomorrow. 

Needless to say, I did not make significant progress (hmmm no surprise in either sense) 

Also, I had bad diarrhoea (that’s what woke me initially) and had to take the second Loperamide of the night (the first was when I went to bed). Diarrhoea always knocks me out, today was a waste of time. 

Teresa has a cold/virus that has knocked her for six, so I went and fetched in some wood while the sun was shining to avoid her being tempted to do it because “but Bean you are poorly” 

Sun 10-Mar-2019 

Well, slept a little better and feel a little better, but it still took me an age to get moving 

I managed a sort of draft of the task and sent to Teresa then crashed out for my afternoon nap. After I woke up, she’d looked at it, I did some minor titivation and managed submission, it’s rubbish, but fortunately these three tasks are 0 marks, meant to teach us a particular way of thinking academically. I don’t think it works for me, but you have to try to be sure, so I am trying and struggling. 

Otherwise I have tried to take it easy as I can feel all the signs of my own cold (probably picked up from Teresa) and need to try to fend it off as it’s the last thing I need! 

Mon 11-Mar-2019 

Well, feel rough but OK to work, so working. 

Teresa thought she was better yesterday (I didn’t) she is worse today and has accepted the need to have another flump day (she had one Saturday, decided she was cured Sunday and guess what, she is back to flump today. I keep telling her we both have to accept we are no longer the spring chickens who “fought” through a cold. Now we have to be sensible. 

Tue 12-Mar-2019 

In office, all ok, but had to Sainsburys on way home as Teresa still very poorly, so by the time I got home – exhausted, crash and … 

Wed 13-Mar-2019 

Teresa would normally insist on going with me to get the scan results but she has a nasty cold/virus and it would have been wrong to take that into a cancer clinic where people are immunocompromised, so I was on my own for the first time. Just for a brief time I am the healthier of us! 

So, got CT scan results. Yes, there is still a large cancer load but it has neither shrunk nor grown, so status quo. We are happy with that. Onwards the next three months. 

It is so easy to see no change as goodness, but all that cancer sits there like a coiled spring, one moment of weakness from the drugs and it WILL escape its clutches and be back to growing like topsy. 

Back at the beginning over a period of three months, half of which I was taking the drugs and half not, the metastase in my shoulder grew by about 1cm (from a size of 6 or 7cm) so when it grows, it GROWS. 

So, it’s more like the car is in gear the engine at full throttle and the clutch pressed and someday the clutch WILL wear at and then … 

So, yes, I am happy with no change but I know what a knife edge I live on, Of course I am grateful for every moment but I cannot pretend this is a happy ending. 

I recall Teresa’s father, oesophageal cancer, slow growing, nothing to worry about, except it happened to grow into a nerve controlling swallowing, a week later he was dead. Do not doubt that left turn instead of right hits any of us at any time and “hope” wont’ change it, all I can do is enjoy and live today. 

Poo (in case you thought I’d forgotten 🙂 ) is normal today! 

I also got the results of that task for my assignment, apparently what I did was OK, so onto the next one. 

Thu 14-Mar-2019 

Morning was normal, even poo was 

… 

Had afternoon nap and woke up, still lying in bed, massive stomach cramp – I cried out in pain and had Teresa reaching for the phone and 999, it seemed to me to be the same massive pains I had in London late last year which were down to digestive distress.  So, I tried to explain that I didn’t think she needed to panic and kept talking as the pain crescendoed and then died down. All over in the space of a few minutes, but those minutes … The cramps eased, I started drinking my mug of tea and then quickly headed up to the loo. 

Oh no it says; I just needed a small fart. I knew better, we’ve played this game of bluff before and I waited, …, a few minutes or so later, “oh well, if you insist” and there followed a series of explosions and the truth was revealed and yes that pain was for an understandable reason. 

The cause, I’d had lentil and tomato soup for lunch, I knew lentils could be bad but, …, this was way beyond diarrhoea bad, this was frightening – all from a can of soup (probably)! 

Wiped out, but able to get work done, so plodding on. 

Fri 15-Mar-2019 

A reasonable day’s work, otherwise not much to say, fatigue as always, poo challenges, as usual, just a regular day in the life of dealing with (NOT fighting) cancer. 

Postscript 

Poor Teresa has felt awful for over a week now. Yes, it’s just the usual winter cold virus, but it seems to have been quite a strong dose and has knocked her more than she is used to. 

It has however given her a better insight into just how hard constant fatigue is, she struggled to be sensible and accept restrictions for a week. 

It  has given me the chance to look after her and make HER take it easy as opposed to here constantly worriting (a Teresa word) about me. That has been nice (apart from her being poorly that is!)

For me it’s a (rest of my) lifetime task to learn to manage fatigue and when that’s the case you aren’t fighting you are just accepting and finding your own path through it (same for poo, nausea, joint pains, …) 

The Bean, Pendeen17Mar-2019 

Scan results are close and fatigue – 02-Mar-2019

Welcome Home Bean!

Sat 02-Mar-2019

Angelique over to Firehouse for some investigation of new bed. Up at 6:30, exhausted. Called into M&S at Hale on the way home just for an “outing” (how simple are my needs nowadays!) and had a hot choc at Costa first. By the time we were finished in M&S it had only been an hour since we arrived on site (including Costa) and I was exhausted.

Upside I did find some nice simple “beach” shirts, long, lightweight “shirts” perfect with a cami and long skirt for the summer. They didn’t have my size but as soon as I got home, I ordered some.

Nothing done for the rest of the morning and nap.

After lunch I needed to move Teresa’s computer form our bedroom (where it has been while she decorated her office) into aforesaid office. No problem but that hour of crawling around was too much and I achieved nothing for the rest of the afternoon.

Got some work done on the assignment, but nowhere near as much as I hoped

Sun 03-Mar-2019

Got some work done on the assignment, but … well you know the rest of the sentence

Evening, Teresa out at an event, I had a total flump evening bed at 10pm when she got home and fell asleep while watching antiques road trip as my bedtime TV program and I do fall asleep to it 50% of the time, that’s why we watch it, Teresa likes it and I’m interested enough to listen but not so much I concentrate so can easily fall asleep. It’s a lot better than most of the stuff Teresa watches – Doom, misery, blood, death, mayhem, doom, death, more death, doom, blood, death, …

Mon 04-Mar-2019

Slept solid till around 3:30am and then quite well till waking 6:30am and up at 7:30am,

Work as usual, but staying on top of it

There has been a Parmesan type cheese wrapper on the worktop for a few days now, I check it’s not finished and move it next to next to the kettle so Teresa could sort it out (it’s her cheese, I don’t know why it’s left out). She moves it out of her way, I move it back, …

Teresa would say I should have said something, I couldn’t, I had no way to tell her

  • She wasn’t there
  • I would have come across (been) angry
  • I would be literally tongue tied trying to explain

Until tonight that is, I had to do something or throw it in the bin or at her!

So, I said, her reaction was I should have said. Whilst that is a perfectly reasonable NT reaction it is an utterly stupid one to this autistic, why would I communicate in language, I did communicate, I moved it, it’s a valid communication, albeit not one that works well with miss “pushy shovey without thought of consequence” as evidenced by her approach to delicate objects that subsequent are no longer delicate 🙂

I did manage to control myself although I was on the verge of a meltdown. I know how hard I have been dealing with this, a flippant (to me) response of “well, you should have said”, would in the past have automatically triggered my melt down and I would have been the bad tempered, argumentative, unreasonable one.

Teresa wasn’t deliberately nasty in any way and yet her unawareness of how this autistic was communicating was, at best, careless, she should know better.

This stuff happens between partners at the best of time, when one of them is autistic, a lot of the time. Learning to manage it is the biggest challenge Teresa and I face in our marriage (well nowadays me dying is up there too 🙂 )

Tue 05-Mar-2019

Into the office, though had to borrow Teresa’s car, still exhausted. Had some useful conversations about autistics and employment, including an excellent idea for my current assignment, can’t say what yet, need to keep powder dry.

Diarrhoea is confused today, just can’t make up its mind

However, slept for 2.5 hours this afternoon, I was that tired

If legs scare you, look away now!

Yes, I really do wear a nighty, though obviously with an apron when cooking!

I did manage to do Pancakes – barely, for the first time I had to ask Teresa not make the batter as she uses a machine and I do it by hand (I insist on doing it that way, it’s the way I always have and as an autistic it is the way I always will, routine rules!) and I did not have enough energy.

I did cook them all and Teresa and pigged them down (as you do!) I tried honey on mine but found that proper sugar worked better with the lemon, yet I prefer honey as a sweetener otherwise, odd, but my taste bugs are screwed up.

Wed 06-Mar-2019

Had a blood test at 8am this morning, except I didn’t, I was so exhausted that I forgot and had to ring up and grovel. The surgery were brilliant and I have an appointment on Thursday morning.

Angelique is ready for collection so quick dash over to Firehouse, discuss the new sliding bed plan and she’s due back in to have the work done around the end of the month – looking forward to it.

We also need to get some blinds sorted for her, I need to chase this up

We got back around 2pm and again I crashed out, becoming rather a habit this

Thu 07-Mar-2019

Quick dash over fop blood test – no problems. They have 4 working days instead of the preferred 5 to do the tests, so fingers crossed. I did have them done 6 weeks ago so reasonably current.

Tomorrow it’s another venesection (vampire session at West Cornwall Hospital) and hopefully that’s going to be getting my haemoglobin down to safe levels. I see the consultant in two months but I dare say at clinic on Wednesday there will be the results after the first three bag fulls!

A lot of stomach cramps this evening but no poo despite Teresa’s “poo” lasagne, still I feel gurgling’s so maybe it’s following its natural course and I’ll be dashing upstairs in a few minutes time (it’s 8:45pm)

Yup!!!

Fri 08-Mar-2019

Venesection was no problem, it’s an easy peasy process but yet any medical procedure, no matter how trivial seems to knock the stuffing out of me.

Poor Teresa is rather under the weather but still went to collect her new car so the house was empty when I got back from the venesection and as you can see from the featured image the cats all rushed to greet me!

Exhausted – managed to get work, work done and crashed :-(.

Postscript

Only 3 days to results, no matter how laid back you try to be, the wait and the worry are devastating, you know it won’t change anything and yet it still knocks the stuffing out of you. Still, it is worthwhile going through it so long as the news is good and it’s better to get bad news whilst there still may be time to do something (you hope)

Hey ho, onwards, …The Bean, Pendeen, 10-Mar-2019 

Grinding on, scan results in ten days – 23-Feb-2019

Again no photo, sorry, just too exhausted

Sat 23-Feb-2019 

Still very tired and constipated, went to Firehouse to discuss mods to the van (mainly bed, blinds and solar panel) 

Got back in time for lunch, shattered. Had a bit of stroganoff for lunch in the hope that things would ease. I got up after 3 hours sleep (I was that tired) and yes it did, nicely thank you 🙂  

Got a 2nd draft of my assignment task to Teresa 

Sun 24-Feb-2019 

Did final three drafts for Task 1 and submitted – phew, exhausted 

Diarrhoea is grim again today 

Mon 25-Feb-2019 

Diarrhoea is grim again today 

Managed to work in between trips to the loo 

Got results back from the assignment task – it was fine, onto he next task due in two weeks’ time, it never stops. 

Tue 26-Feb-2019 

Didn’t go to the office today (as I usually would), exhausted from the diarrhoea and even though today has turned out to be OK, it is surprising how exhausting the blasted poo is, never mind the general fatigue. 

Managed an hour this evening researching the law on “reasonable adjustments” at work (for autism in this course) it is a fascinating subject and an example of how the law makers (our wonderful governments) abdicate responsibility and pass to the lawyers the responsibility for working out exactly what is reasonable, why and when. 

The fatigue is really bad at the moment, partly fallout after last week, partly it just always is and partly the diarrhoea, that triple whammy is quite paralysing and I have to drag myself by the scruff of my neck into my office to do anything – even this blog 🙁  

Wed 27-Feb-2019 

Crashed out last night, woke around 6am, up around 6:30am and at work 7:15am and I am exhausted before I even start, I am ready to go to bed. Waking up just as exhausted as you were when you went to bed is tough, I can see how easy it would be to just stay in bed all the time and become bed ridden, it takes will power to keep going. This is something that I have seen in those dealing with ME, you cannot deny the fatigue but you can choose to work with it and get on with life or let it take over, I was always impressed by those who did not let it take over, never thinking I would find myself fighting a similar battle. 

You think that’s all there is, go to the loo, normal poo, yeah, wipe your bottom and blood! Almost certainly the “usual problem” but I didn’t push hard so no obvious reason why it should. 

I hate this constant dealing with stuff 🙁  

Had some poo stroganoff at lunch (just a bit) and yes, what was left loosened nicely AND no blood, it was the usual problem, phew! 

Thu 28-Feb-2019 

Just got on with some work tasks, actually writing code rather than fixing/diagnosing, though it needed some of that along the way. A good day and I got some work done this evening too as I knew I would lose some time tomorrow. 

Poo seems Ok, albeit diarrhoea’ish 

Fri 01-Mar-2019 

Took Angelique into the garage for her service, then got on with work. Usual poo issues, but normal. 

After nap collected Angelique, she sailed through the service. One brake light had failed in the two weeks since the MOT, they removed some of the Japanese gizmos attached to the dashboard (for toll roads, GPS navigation and stuff) and identified that the remote controls for two of the passenger windows were broken. That means replacing the master unit on my door and it’s an import form Toyota in Japan and £450, so I will cope without and/or wait till one comes up on Ebay or somewhere at a more civilised price! 

Finished the work I wanted to get done. 

All in all, a good day, however still exhausted by the end of the week and nowhere near as advanced on my assignment task as I hoped. Hopefully the weekend will be better. 

Postscript 

I am sure some people must be thinking, “well, we expected him to be dead by now”, after 15 months I am pleased to still be going but because the cancer is invisible and the side effects of the drugs are invisible (apart from the white hair and at 64 nobody notices that), well invisible to all but the closest to me, I look and sound fine and clearly there has been a bit of “cry wolf” going on. 

I get my next batch of scan results in 10 days and I am (and Teresa is) as terrified as always as to whether it is still “on hold” or has defeated this drug I am on. 

For me, the cancer is ever present, I guess for most people it’s just not obvious it’s still there and I seem much the same as before. 

Teresa and I know things aren’t like that and if you read this blog, I hope you trust me that I’m not over egging how it affects me, but I remain concerned that cancer like mine is so invisible – no hair falling out, …, until the end when it’s down to weeks 🙁  

So, I keep blogging and hope you aren’t getting bored, well the select “you” that are reading this 🙂  

In the meantime, I have just finished moving Teresa’s computer from one room to another, a simple task that took an hour. I am so shattered I can’t think straight. 

The Bean, Pendeen03Mar-2019