Letter from the North

Kidneys, Kittens, Sheffield and Cancer – 21-Sep-2019

The pic at the top of this blog is Jane, if you’ve been reading my recent face book posts you will know she was been given notice she has kidney failure – just disease rather than cancer, but incurable and fatal

Jane is very much in our thoughts as she keeps going, no matter how much you see and read about Mr Biggles

This blog follows on from one that finished with me getting into as right old state about new kitten basically ignoring me and me not being able to sleep and ending up going to sleep in my armchair with a duvet over me, …

Sat 21-Sep-2019

We were going to go to Truro this morning but didn’t want to overload my reserves before heading up to Sheffield on Friday, …

After a bad night (see last week’s blog), that was a good idea

I am in a lot of coccyx pain after sitting in chair for half the night (twice in quick succession)

Rest of the day passes in a blur of fatigue

Sun 22-Sep-2019

Continued to take it easy and rest, Sheffield at the end of the week will be tough

Mon 23-Sep-2019

Biggles slept upstairs all night, all four of our other cats were downstairs. Biggles appears in morning for a quick 10 second hello and then Teresa appears and bye, bye, Bean…

Popped into my office to do some work and in the space of around a minute

  • Daddy, daddy, I must come into your office now
  • Thank you, I must come up on your lap
  • Buzz, buzz, head butt, buzz, I love you best of all, I’ve missed you terribly
  • Jumps down
  • God your office is the most wonderful exciting place on earth, I so love it
  • OK, ready to go now

Ok, so it was 55 seconds not a minute but you get the idea!

Later, I go up to the loo.

  • Daddy, daddy, you’ve got to let me in
  • Thank you, I must come up on your lap (while you are doing what you need to do)
  • Buzz, buzz, head butt, buzz, I love you best of all, I’ve missed you terribly
  • Jumps down
  • Waits in bathroom and jumps up on loo next to sink while I do my morning ablute.
  • Fascinating I so love watching you wash and clean your teeth, it’s so exciting
  • Bye …

Get dressed and come downstairs and hello daddy, bye daddy

I’m back in my office and no sign of him

What is clear is that so long as there is anything interesting going on AND he knows where I am then I am irrelevant. Indeed often “so long as he knows where I am” is enough even if he’s asleep on the cat tower, with the other cats or even up on the bed with Teresa, …

Not quite what I wanted, but I guess it’s my role and I have to accept it, as things get less exciting maybe he will return more constantly?

So, no, not what I wanted, but apparently, I am his “security” and so long as I fulfil that role, he will do his own thing and come back to me as and when.

Like having children really, once they don’t need you, they only return when they do 🙂

Hey ho, work beckons

The dilemma, if my partner is bi-sexual, will he want sex with someone of the other gender and have an affair – The bisexuality dating dilemma.

Really!!!! If you are monogamous, you are monogamous no matter what your sexual preferences, for same sex, both sexes or hetero (whatever that is!). If you’re not, you’re not and that’s just as valid a choice (as long as you are honest)

Simples!

Hmmm, so I now get a FB advert every 7 entries in my timeline (yes, I’ve counted). Clearly, I have upset someone (or some algorithm more likely) in FB land!

11:45am, Teresa leaves the house, kitten wants into my office, loves me madly, kneading, buzzing, …, 10 mins later, he is off out again and asleep on the cat tower. I suspect he’d prefer it if I was in the sitting room, but that’s at 12:30pm, sorry Biggles, I love you dearly, but my employer expects some blood sweat and tears 🙂

Tue 24-Sep-2019

In the office in Penryn

Wed 25-Sep-2019

For lunch, every 10-14 days I make a batch of “pasta”, alternating “pesto” (just the basil) & chicken pasta and fish pasta (a Teresa invention, that I Fodmapped).

The last lot of fish pasta developed a horrible taste, so I need something different.

Teresa has found some gluten (and onion) free pork sausages – so I “invented” a sausage and chicken and tomato pasta – again a Fodmapped version of something. The original used baked beans, they are a no, but well rinsed, tinned in water chick peas, are an acceptable substitute (the water sucks out the nasties and the process of tinning makes that more effective, so, as long as you rinse well, ….

Worked well, looks like I have a plan B

Thu 26-Sep-2019

Moved wheelchair to Teresa car as we are going up in her car to Sheffield on Friday as the car park (by the hotel) has a low clearance and my van won’t fit 🙁

Fri 27-Sep-2019

We left for Sheffield around 7:20am, horrendous traffic all the way to Sheffield. Constant stationary traffic on all roads. Took us 10 hours to get there.

Parked up OK

Wheelchair needed bit of jiggling to get ready (first time it’s been used) but did sterling service.

After unpacking a quick meal in the hotel, did not eat healthy as body heading towards constipation. Even went wild and had 1st pint of beer in 6 months – Golden Sheep, appropriate for being in Yorkshire!

Then we went into town for me to not recognise anything. We found crucible theatre (opened in 1971, I was at Sheffield University from 1973-1978 and went there regularly) has been facelifted but while I recognised some of the shape the surroundings were all new to me.

Postscript

It is (for me) worthwhile updating where the whole cancer thing is:

1) I still have metastatic renal cancer, that is cancer that started on my left kidney and spread through lymph nodes all the way from the kidney to my right shoulder – which is the node the cancer was spotted in when I had an accident 2 years ago.

2) There is no cure, surgery, chemo and radiotherapy don’t work for kidney cancer unless it’s all contained in the kidney (or very close by), mine isn’t.

3) Metastatic means life limiting/terminal depending on which jargon you want to follow. In any case it WILL kill me

4) I am on a treatment that inhibits growth (and hence spread) of the cancer. Currently that is Pazopanib (a TKI for those that understand). It WILL fail, the cancer develops a way around it. I have 3 maybe 4 other drugs I can try and that’s it. All of the drugs, always fail, it’s just a matter of when – straight away, months, years if you are lucky, but they WILL fail.

5) The cancer is still there it has not shrunk or gone away – it shrank a bit in the first 6 months but since then “stable” is the watchword.

6) My life is not limited by the cancer (while it’s held in check) but by the side effects of the powerful drugs I take.

This is the bit of my life that has changed so here you go:

  • Blood pressure – the drugs push it dangerously high. I now take 1/3 of the drugs I was taking at the start. However, my BP has a habit of suddenly spiking (to dangerous levels) but a quick pill pulls it back into order. It means I check my BP twice a day, but that is no great hassle. Vigilance is the key.
  • Nausea – I’ve recently stopped taking my nausea meds and I’ve been OK. Don’t know for how long, but so far so good (edit, still not taking but nausea is getting harder to ignore)
  • Diarrhoea – drastic changes to my diet (Fodmap) have controlled this – I walk a knife edge between this and constipation, but it is manageable
  • Secondary Polycythaemia – the cancer causes my kidney to over produce Erythropoietin (EPO) that causes my bone marrow to produce an excess of red blood cells. That means my blood is too thick (risk of stroke, heart attack, …) and has too much iron. The treatment is straightforward, they take a pint of blood out (of my arm) once a month. This is a known effect of the cancer, not common, often there is too little iron not too much.
  • Last but the mostest – fatigue, whether from the cancer (some of it) or the cancer drugs (a lot of it) is the killer, I have very limited energy and physical/emotional/mental energy all come from the same very limited pot. So, I can only use one at a time – hence the wheelchair if I am at the University. It’s also why I can get more work done at home than in my company’s office which involves 1hr drive each way and driving costs energy – focus and attention are key here :-). It’s also why I rarely stray outside the house and don’t go to events in Pz anymore (or at least rarely)

7) The accident – my claim for compensation for the injuries and ongoing pain in my shoulder and coccyx continues to grind on with no signs of an end.

The Bean, Pendeen, 17-Oct-2019

Medical stuff, Mr Biggles continues being difficult 14-Sep-2019

Sat 14-Sep-2019

Getting ahead with work as I will lose a lot of time to medical stuff next week.

When Biggles is in the mood, this is his idea of joining me for an afternoon nap! He is totally relaxed, me just slowly coming around after my nap, it takes about 45 mins to an hour to come around!

Sun 15-Sep-2019

Still getting ahead with work

Mon 16-Sep-2019

Getting an MRI scan done today, early start to be there for 8am! Following is the FB update:

MRI scan of Coccyx done; wish I’d remembered to have a photo taken. Done as part of the insurance claim for that accident (2 years ago now!) it was done privately, paid for by the insurance companies. Done at the Dutchy Hospital (next to Treliske in Truro). What surprised me was that it was a mobile scanner (like the mobile mammogram scan units), basically a scanner in a container! Because a mobile, I don’t think it was full length, so because they were scanning my coccyx it meant my head hung out of the end – so not so claustrophobic. However, since I tend to close my eyes while being scanned it made little difference to me. Lying still is tedious, but was fine for all 4*4-minute scans. Tedious but painless – well apart from the pain from my coccyx because I was lying on it on a hard bed! But I’d taken some paracetamol beforehand to help. I do CT scans every three months and I am very used to them, MRI was a first for me, but apart from taking (and lying still) a lot longer, it was more pleasant because I don’t have to have contrast injected and my body doesn’t like the CT contrast.

Mr Biggles likes to eat when I do, this way he eats his own chicken and not my food!

Tue 17-Sep-2019

Quick venesection this morning. I warned the nurse their favourite spot (crook of arm) was too scarred from previous needles and only 1 juicy vein is reachable there. It was, she failed to get any blood, so 2nd best at wrist was good and juicy and a lot more of it is accessible.

BP at start rather high as is normal when venesection due and more normal at end when blood is thinner.

That’s the joy of secondary polycythaemia: thick blood because of the extra red blood cells.

Still this is one of the more fun treatments as it’s a friendly place as I am a once a month regular and not unpleasant if needles and blood don’t bother you and they don’t. And close to home

Still knocks the stuffing out of me but then everything does nowadays.

Bean

Exhausted, got a few hours of work done but nothing much

Wed 18-Sep-2019

So, no kitten all night, whatever is going on it looks, for now, pretty clear that whilst I “matter” there is just so much else, e.g. Barney especially and always Teresa, that I am not needed. May change, but for now, I can expect little contact. Teresa puts him on duvet between legs for afternoon nap and that has worked so far but I’m not expecting it to continue.

Food – yes please and “bye”

My office, yes, interesting, quick explore then OK, done, bye, …

Even treats – mmm, very nice off I go now, …

Off to the dentist this afternoon for a filling, not looking forward to pain afterwards (not mouth, back, shoulders, neck, joint and muscle pain from the chair). Actual procedure was fine. Used cushion for my lower back to see if it helps

Still exhausted afterwards

Spent all evening seeing Mr Biggles on Teresa’s lap and in the end, it got too much for me, started to do some cooking (8:30pm – when I’d normally be in bed)

Posted this on FB about 9pm

Well, it has been coming, but there’s nothing I can do, the kitten has decided that Teresa is his person and if she’s not available he’d rather be on the cat tower or with the other cats and not me. He’s made his decision and I have to accept it. It was always going to be an uphill battle, but I thought I was winning him around, but once he and Barney got together, well Barney is Teresa’s cat, he ignores anyone else, what else could the kitten do, clearly Teresa is top human. Teresa feels responsible. She can’t help how she affects cats; she just does and I hoped Mr Biggles would prove to be an exception. Silly me. Still Barney has the playmate he needed and that was part of the objective in getting the kitten, so I guess from his and Teresa’s point of view it’s a success. This post is for me more to read than anything else so PLEASE don’t offer help, suggestions or sympathy. It’s just one more part of my life that is hard for me to cope with right now.

Teresa went to bed, I finished my cooking and around 10:30pm, I was in such distress, I couldn’t face bed so just grabbed my pillow and duvet and watched the TV from my arm chair.

No sign of kitten, of course, eventually after dozing and increasing coccyx pain, I transferred to my bed by 2am ish. However, I woke at 4:30am and got up and was at work! (in my home office I hasten to add)

Thu 19-Sep-2019

Teresa out all day and at 10am Mr Biggles has read that FB post and decided that since she is out and all the other cats have gone back to bed, he might honour me with his presence:

Fri 20-Sep-2019

Work is OK, but as the day goes on, I am feeling increasing “flu like “symptoms (post viral). BP at 7pm was high again which explains it in part and I took extra BP meds

Sleep was OK till about 3am (say) when I went to loo and back to bed and mega stress/distress hit me – probably delayed from the Biggles, cancer, what is the point of my life, from earlier this week.

Gave up sleep, made cup of tea, grabbed a biscuit and pillow and duvet onto arm chair and watched the TV.

Biggles liked this idea and decided to join me, he’d ignored me in the bed – go figure. I slept. More dozed, until I got up around 6am.

Postscript

I’m sure the pics of the kitten are far more interesting than my trying to work out how this kitten lark works. It’s not logical (in a binary way) and kittens (animals in general) don’t follow easy to understand rules. I’ve studied NT’s (non-autistics) for over 60 years and whilst I will never understand them, I can often predict their behaviour. It’s quite clear that for cats I am at square one. Why does that matter – well imagine I hadn’t spent all those years learning how to “read” NT’s, imagine the stress. Of course, the stress is still there but I have learnt to tolerate it – mainly by never letting anyone get close to me (Teresa being the exception and even then, she can hurt me badly without ever realising – and vice versa I hasten to add).

Trying to integrate a kitten into my emotional life is both difficult in and of itself but also a metaphor for how hard I find non autistics. New kitten would be easy if I wasn’t bothered (as I wasn’t without Barney who was always Teresa’s and she has the knack of bonding), this one, well it’s so hard forming relationships I hoped a cat was less complicated than a human – it is, but I haven’t had 60 years of learning some rules of thumb.

What I think I am trying to say, is that I risk a lot trying to form a relationship with anything or anyone and I don’t have the natural instincts on how to do it, so I have to find some rules that are a very poor substitute. In the human relationship world, it’s made me ultra-cautious about assuming someone else feels even slightly the same way I do – and that’s acquaintances, friendships never mind romantic entanglements.

Seeing the same thing play out with Biggles highlights for me how much I do and avoid doing on the human arena, so much so that I don’t realise I’m doing it, I just don’t have anyone really close to me (apart from Teresa), others may be, but I have absolutely no way of being sure, hence I am always insecure even with friends who I am sure I am friends with, I’m never confident in that state.

So, by talking about Mr Biggles so much I am really trying to show you what is happening invisibly when I have contract with any person.

Oh well, as I finish this blog things are taking some sort of shape and I’m developing some behavioural and relationship rules that are working better for both of us, but it is REALLY hard.

Imagine an autistic child (me) in a neurotypical world, is it surprising we exhibited “bad” behaviour trying to make sense of a world that just doesn’t get that we are so different to them?

The Bean, Pendeen, 13-Oct-2019

Weight Loss Panic, Kitten drifting away from me 07-Sep-2019

Sat 07-Sep-2019

Sitting in my office on Saturday morning. Mr Biggles (our Tonkinese kitten) on my lap doing that two-tone buzz (purr) we had only heard from Spook before – buzzing on the in breath and the out breath.

My phone/camera is in the other room and he is settling to sleep, so I am pinned here as long as I can hold out needing to go to the loo.

So, no “cute” picture, sorry, but trust me, he is looking mega cute.

Well I can’t disturb him, can I?

Our 4 adult cats all seem fine but are missing Teresa terribly especially her Orientals (Barney and Spook), they appear a bit but really very passive. I do know that when Teresa gets home there will be wild excitement and even the Tonk will desert me to say hello to her.

Hard working with a kitten asleep on your lap, but there’s something really rather nice about it too.

Son arriving today and his girlfriend tomorrow, so I am not completely on my own.

However, it’s not just the cats that miss Teresa, I miss her too, but I also love her getting on with her life, well outside my rather claustrophobic one and I am 100% behind her and obviously sending regular pussy cat updates!

Doorbell rang so grabbed my Camera:

He is very sweet, that’s why we chose a Tonkinese for me (well clearly I was for him not the other way around) as they are 50% Siamese genes (so fit in with our other cats) but also much more lap cats (from the Burmese genes) so, hopefully more likely to bond to me. However, time will tell and the force (“felimones”) is strong in Teresa so, we will see (indeed we do and not for the best), hopefully these 5 days without her will help, but who knows!

And what am I doing while he sits here sleeping and buzzing? Adapting and testing FFT (Fast Fourier Transform) code!

Oh, and he is a very good listener and really understands the problems I am having with my very rusty mathematical brain this morning, though he is also finding it hard work and needs a rest now (me too Mr Biggles, me too!)

 Teresa has an attraction to cats (what we call felimones) that they cannot fight (and neither can she), cats on the street just come up to her. So, as a rule if she is in the room, I don’t stand a chance. The only upside is that she is VERY fond of her Orientals and Mr Biggles will be turfed off her lap if he is interfering with them sitting with her and then I am a good backup lap. Ditto if she is out (which she often is)!

Collected Son from station, this is what greeted us:

Later that evening this lovely picture of Mr Biggles taken by my son

Sun 08-Sep-2019

My weight down to 15st 2lb, losing about 1lb every 2 days or so – no change in eating. Weight loss is usually the first sign of renal cancer, so, I am somewhat terrified at the moment!!!!

The following appeared on FB that day

The next blog is in preparation and should make it out by the end of today, Mr Biggles willing!

However, I have been noticing a worrying weight loss trend since we got back from Shrewsbury (less than 2 weeks ago) and I seem to be losing 1lb in weight every 2-3 days at an increasing rate. Between 4-6lbs in those 2 weeks, but it’s getting faster.

Normally – brilliant one would say, however I am eating the same and unexpected weight loss is how this cancer (renal) is often diagnosed, so I am rather worried, well terrified is the simple word.

If/when I hit 15st I will contact the cancer nurse. At the current rate that would be Monday or Tuesday!

Now even at 15st I am overweight (down from over 16st at diagnosis 2 years ago, but most of that loss has been VERY slow). So, I can afford to lose the weight, but I need to know WHY I am losing it and if it’s down to the cancer picking up steam then that is NOT a good reason. The last set of blood results (3 weeks ago) showed no reason for concern but unexplained is unexplained!

It could be because I have allowed a bit of diarrhoea to return by easing off my fodmap diet and add some goodness (a few grapes and a bit of broccoli) and hence I am absorbing less nutrition, but even when the diarrhoea was severe the weight loss was not this quick.

I weigh myself at the same time in the same way every day and done so for years, so I KNOW what my normal weight ups and downs are and this is NOT normal for me.

So, this may be just another Bean panic, I am probably crying wolf? I am very aware of that and could stay quiet, but this is what is real for me today and so I wanted to share it.

Hopefully by the time this makes it into a published blog (in a few weeks’ time) I am laughing about it (or worrying I won’t see Christmas and the Strictly final).

Bean

I am very careful with fluid; it is Kidney cancer. And I drink to a regular schedule being autistic and have had the same to drink and just been to the loo when I weigh myself. But I will of course talk to the doc but it needs to be the renal cancer specialists on Monday/Tuesday and I know they will just want to monitor for a bit but I will talk to them

On a lighter note, Mr Biggles is in my office with me, he seems very good at knocking expensive PCB’s off my desk and operating the mixing desk I am working with, moving sliders, operating the touch screen … He has now found the open bag of cat biscuits stored in here and getting into it – what a clever boy!

And to bring the cycle to an end, the worry is still there but is assigned to the background since there is little that I can do other than try eating more and backing off the diarrhoea triggers and monitor. On the other hand, Mr Biggles has finished wrecking my office (my choice, I’d rather have him in here than not, especially as none of the others are and so it is “special” and there is no competition for me 🙂  ). He is now fast asleep on my lap and I am continuing with trying to wake my VERY rusty maths to work and it is fighting me every step of the way, that itself is quite worrying!

Collecting son’s girlfriend later on today

Working in my office on FFT

Hmmm, it seems that Biggles likes salad cream!!!!

Mon 09-Sep-2019

Mr Biggles feels I don’t need to get back to work. But I will have to move him and get on. Those FFTs wait for no non-gender specific person.

Also, will be weighing myself shortly ……

Well, I am in my office, the weight has stabilized at 15st 3lb for now (eating larger portions), one day is not helpful to know, but at least the downward trend has stopped for 1 day – before it was constant, every day a bit more, …. Oh, and after a bit of, I want to be in your office, no, it sounds more fun out there, no, it’s boring out here, can I come in, … He is in here in my office, on my lap and my FFT’s are looking good – I am getting the results I expected, phew! Put a 12KHz sine wave in and the FFT sees a big peak at 12KHz! However, the next blog seems to be delayed – work or blog, I need to get paid, so work wins for now and what little time I have left, Mr Biggles owns! But I will try … (because I want to, not because I feel pressure to). Collecting Teresa this evening YEAH! Even though it means less Biggles time, it will be nice to have her home and Mr Biggles and I have established a few routines – like my office that may help my cause.

Boiler man serviced the boiler today, apparently, we need a new oil tank.

Teresa home around 9:30pm (of course I collected her). I have lost Biggles,

Blog 17-Aug-2019 released – whew catching up …

Tue 10-Sep-2019

Teresa got home last night and I never saw Mr Biggles all night. However, he can drag himself downstairs to eat my breakfast and use my lap to stop me getting ready to go to Penryn but get ready I must. Blah, rather stay here with kitten on my lap.

Ever tried putting on tights with a helpful Kitten?

Work, exhausted, Kitten virtually all night

While I was at work?

On way home from work, a bit of Sainsburys, wiped me out. Stuff moved to bottom shelves from where it used to be. I cannot see what’s down there, if I bend, I will feint, so I have to kneel, it hurts and it’s a devil of a job to stand again and I still get woozy. Just like stuff high up on shelves from a wheelchair. Did anyone offer to help – did they hell. I need a personal shopper, to be fair online shopping would be OK but I like the “touch and think” rather than trust someone else’s idea of a “substitute”!!!

Teresa picked up fish and chips for all four of us – cost a fortune, … I had loads of chips for weight gain purposes. I have to say I am not enjoying these larger meals I got used to my smaller ones – never thought I’d say that!

The following story needs some context for those new to Teresa, me and strictly (come dancing – LINK). I met Teresa in 2007 by the time we started going out Christmas was upon us and I never knew of her secret vice.

The following year, she told me of it, she watches strictly every year. Well, what could I do, so I watched it with her in 2008, I knew it was a load of tosh but I love her, so it seemed right to try and share her passion. I was hooked, I cannot explain why, I was engaged with the people, the process, we forever discussed and debated, …, it was most definitely our big Xmas lead in. Eleven years later it is just the same. Even when I was working up country, we’d record each episode and even though sometimes there were 3 or even 4 episodes waiting for us when I got back to Cornwall, we watched it together.

Two years ago, in 2017, the season had started, we were watching the early episodes and BANG, the accident hit me on Friday, we found out about the cancer at the same time. Now, it’s a case of will we get to see the end of 2017 – we did. The much bigger question was will we (together, she still would, it would be me missing it!) get to see 2018. Yes, the drugs are holding (just) the cancer in check and I got 2018. Given my initial prognosis of 2-3 years, I really worried about 2019 (I still do).

So, Teresa was away on Saturday when the announcement of the dancer’s show was broadcast, so, of course it was recorded and on Tuesday we watched it.

The reason for this long story is that as it started, we both burst into tears at the same time, we weren’t looking at each other or talking to each other but spontaneously it happened. We had to pause, wipe the tears and laugh at ourselves.

Having a death sentence affects you all the time, you might not be aware, you might deny it has any effect at all, but it’s there, all you need is the trigger. For us it was Strictly 2019. I would like to make 2020, but right now seeing the final of 2019 would be good, then Xmas, then New Year and THREE.

Wed 11-Sep-2019

Weight looking better, got it to rise but far too much food

Trying no nausea drugs see how it’s going?

Thu 12-Sep-2019

Had Mr Biggles for a few hours during the night – either with the other cats on Teresa’s chair or on top of cat tower. So, not really WITH me.

Teresa was up early so we missed most of the breakfast ritual – him helping eat mine while my spoon going in!

Then loads of chasing.

Went into my (home) office to work.

About 9am he was wandering around the kitchen and I offered my office door and in he came.

Was almost settled when Teresa was getting ready to go out and even came out with me when I said goodbye.

But after a biscuit snack he came in and was fairly settled, then I had to step out for drugs and loo 10 mins later. Left him on my chair and I’m now back in with “dead cat”, wish I could take a pic but …, he is classic kitten – wide awake, wide awake, spark out on the spot in whatever position he was at that moment.

So here I am working away with a kitten fast asleep on my lap – heaven

Does seem that my office is the one advantage I have over Teresa as it’s “special”.

We are going to ensure that chicken when daddy eats becomes normal as he likes that and mirrors the “daddy biscuits that ferret got into – I kept his kitten bics in a Tupperware (to stop the other cats eating them) and he came and asked. Then even when he was having grown up biscuits that he had from the bowl with the rest. If I was home he’d come and ask for the daddy stock – even though identical.

This one not interested in kitten food, but chicken, he’ll take it from my plate if I didn’t put some in a bowl for him.

So that’s what I’ll do with every meal; they say the way to a man’s heart is through his stomach (it’s not in my case but it does help 🙂  ) but it also seems to work with cats so I shall exploit it, I need every advantage against the overwhelming force of a Teresa, and she is bending over backwards to avoid enticing him, but her and her Orientals are a powerful attraction.

Fri 13-Sep-2019

And so it proves as Barney starts to get into playing with kitten then Barneys closeness to Teresa means kitten is pulled to both of them and away from me 🙁

Work is fine, got everything working nicely.

Postscript

That weight loss panic may seem rather over the top but “unexpected” is worrying and cancer and weight loss are, unfortunately, close allies!

As for the kitten, this is a long and slow and painful process as he migrates from total need in a strange place (the first 24hrs) to slow but sure integration with the other four cats and Teresa’s sphere of influence.

Whether I am a loser in the long term is hard to say, but the short term is highs and painful lows and you’ll see that in these blogs.

Just remember, autistic bean doesn’t make or keep friends easily. As a result, I rarely commit myself to anyone for fear of being hurt (Teresa being one of the few good examples and even then, sometimes, … 🙂 ). So, leaving yourself totally exposed to give a kitten chance to bond with you is a risky and stressful thing. When your reward for that effort is loss, it is remarkably traumatic. If that doesn’t make sense to you, then it means that you aren’t (yet 🙂 ) attuned to the sorts of issues autistics are very good at masking (hiding from you) because what I am describing would make total sense to many of the autistics I know.

The Bean, Pendeen, 30-Sep-2019

Lots of kitten stuff, Teresa off to York and Poo scare (but not mine!) – 31-Aug-2019

Sat 31-Aug-2019

Blog 3-Aug is out, otherwise I have no memory of today but probably a lot of kitten time wasting

Sun 01-Sep-2019

Ditto

Mon 02-Sep-2019

I’m at work in my office, Teresa is out and the guy came over to replace our gas (cylinders) changeover valve, the plastic shroud had fallen apart due to UV and it was no longer automatic. The new one is nicely sorted, not cheap but well done.

Tue 03-Sep-2019

Went into office, otherwise???

Teresa did send me this picture of the cats puddling on her bed – nice to see all five of them in the puddle.

Wed 04-Sep-2019

Getting close to Teresa’s departure for York but apart from work I am blank

Thu 05-Sep-2019

Went to Pz station via Tesco (for sandwiches, more likely to have fresh ones out at this time of the morning), arrived at the station to put Teresa on the train for York, the first one was cancelled but a second (50 mins later) was OK, so took her to Sainsburys for other stocks for the journey.

This is the occasion when the power brick I got her for Christmas that got a wtf response (what the f***) turns out to have been a brilliant one. Teresa panics when her phone drops below 95% fully charged (I joke not) and though trains do have power, …

Back home and another, almost puddle, but Barney hadn’t really got out of bed yet!

Got a blog out (10-Aug, but it’s a start)

Afternoon no sleep no Biggles no Teresa

At long last got an appointment for an MRI of my coccyx at the Dutchy hospital (all done via insurance, so all has to be private!!!)

Made flapjacks for snacks and potato salad for lunches

Tonked to my chair 4pm …

He was a great help with eating my tea stealing chicken …

Had the kitten all night tonight

Fri 06-Sep-2019

Crap (ha) sleep last night worrying about cats.

At a loo trip (mine) around 1am there was black poo (cats) on the floor outside the cat litter tray. The solid component looked too big for Biggles, and Jane seemed very lethargic, so I took Biggles to vet just for a check over and Jane to be checked

The vet was happy with Mr Biggles but gave him his first Felv (Feline Leukaemia) jab and he gets his second plus microchip in a few weeks.

Black poo was almost certainly upper intestinal bleed. Probably caused by Jane eating kitten food (too rich). I have now stopped doing that since Biggles only wants big boy food anyway.

Fingers crossed just an (expensive) panic.

My weight is starting to tumble, starting to get worried

Couple of FB posts:

Sorry Facebook I don’t care how many ads you throw at my feed (must be 20 – 30 today) I will mark them as irrelevant and block the company.

I know you aren’t listening. I know you don’t care. I know it’s how you make your money.

But I will not passively sit back and let you do it. They are not even targeted at me!!!

Love Bean

Then a frustrating school Uniform thing on the BBC news

REALLY, who said gender neutral was what boys wear?

The answer is simple – have a single uniform including skirts and trousers and let whoever wants to wear skirts wear them, ditto trousers.

They can then choose what works in the summer and winter.

If you are bothered about skirt length (and my daughter used to wear a “belt” length skirt) then mandate that, but don’t go stupid like a certain other school about length of trousers.

Children GROW – shock horror, yes, they really do!

It’s not difficult!!!

Postscript

Odd being on my own, no idea what’s happened this week, not sure other than work that I have done anything?

The Bean, Pendeen, 23-Sep-2019

Shrewsbury Folk Festival continues, a new Kitten – 24-Aug-2019

Teresa calls the Bellstone tent at Shrewsbury,
the nipples tent!

Late (as usual) but took time to write, a lot happened this week! And I’ve only just got my University Laptop configured again after it destroyed it’s disk – disk working, contents garbage, no explanation!

Sat 24-Aug-2019

Day two at Shrewsbury folk festival, not a bad night other than being in a lot of pain (see last blog re consequences of dentist visit on Wednesday)

As Teresa woke around 8am, I was still in bed, also awake and said to her “I think I need to go to a hospital” she sat up so fast it is surprising her head didn’t go through the roof! Of course, I knew why I said it – because the pain worried me, she thought it was something even more serious!

My logic was that the pain had gone on for too long to be muscular so must be an infection from dentist.

As I said in the last blog, logically I could argue that the pain was from Paz (the cancer drug I take) upsetting muscles and joints that were already upset, but you cannot afford to risk this stuff as things can go downhill in hours!

I hate pain killers, but agreed to try some of my strong anti-inflammatory pills – I carry a full pharmacy when I am away to cover ALL eventualities! I need to be careful with them as they are processed by the kidneys but despite the tumour (on the kidney itself) mine seem to be working OK

So, I had anti-inflammatory and paracetamol. On Thursday and Friday, I hadn’t touched any pain killers – as I said I STRONGLY dislike taking them.

By the afternoon I did feel better and so continued them that night and into the next day and things did settle and I could stop the drugs and the pain stayed away!

Dehydration is major battle; poo is more distant than I am happy with. Eating (bad for me) food to encourage, but nothing yet

Lunchtime we were in the Sabrina tent – the smallest and the most acoustic.

  • The Exmouth shanty men were entertaining,
  • Amethyst Kia was NOT for me,
  • Granny’s Attic have much improved but their stage presence still needs work.
  • Steve Knightly was excellent as expected and a fine end to the concert.

There were loads of announcements about not blocking the passageways with instruments, …, apparently that doesn’t apply to people as they were all over the place. If I needed to go out in the Mobility Scooter, it would have been a nightmare but people just don’t think, they come in late and go wherever they want, whereas someone like me is there early to ensure I can get a sensible place for my scooter/wheelchair, oh well, people, …

Sabrina was poor for the disabled, especially if you don’t want to be in the front row! However, the stewards are very helpful. The Bellstone has a fenced off dedicated area but right at the front

Heat – mega hot, Teresa went out to get some ice creams for us, they were dripping everywhere by the time she got back!!!

Teresa found some “normal” loos on the site, not smart but they work and anonymous so easier to “settle in”, I will try and find one for me. Trying to deal with constipation takes 10 mins, 15 sometimes 20 mins of waiting patiently. It means I need to not feel there is a queue outside (which there will be with the disableds)

Evening, Teresa was in the Pengwern (second largest and pretty loud) and I was back in the Bellstone with my headphones on!

  • Daphne’s flight were fine.
  • Gary Stewart’s Graceland, mega loud and just didn’t work for me
  • Martin Barre celebrates 50 years of Jethro Tull was abysmal! Stupid loud (like two drummers, two electric guitars turned up to 23, MEGA stupid loud, cannot make out the lyrics, Jethro Tull meets heavy metal. Tull like it was not and people kept walking out. Many of the people on the stage have left (been pushed from) Tull over the years and this felt, to me, more like a vengeance gig (destroy the music) than anything to do with the music itself. Very disappointing and all in all the worst gig of the festival.

Sun 25-Aug-2019

Still baking hot but that Solar Panel is keeping the batteries well topped up and the fridge is coping admirably with the heat keeping the food and milk fresh and the batteries pretty much still on full charge after a night (without sun on the solar panel!!!)

Lunchtime back in the Bellstone with Teresa for

  • Paul Downes – excellent
  • Phil Beer Band – a much rockier Phil, but excellent performance, thoroughly enjoyed
  • Merry Hell – enjoyable

All in all, an excellent afternoon.

Of course, we had an Ice Cream, of course it dripped while Teresa fetched it. I got out two tea towels I carry with me (as I am a messy eater) for protection.

Teresa’s loo trips are working for her, not so much for me even if I gave it 15-20 mins!!!! Bum hurts from the seat!

Second attempt later on that day was no better

In the evening, we were in the Pengwern (quietish) tent for

  • IOTA and Burden of paradise, don’t remember them but don’t remember hating them either, a pleasant evening
  • Headline was “While and Mathews Big Band”, they had organised the whole day in the Pengwern and there was an awful lot of everyone bigging up everyone. The fact that they are female, I don’t know (or care) what their sexual persuasion is. HOWEVER, there was an awful lot of confusion of what rainbow, LGBTQ… means and implying it is primarily about L and G, forever confusing gender and sexuality. I do wish people would try harder to maintain the separation because they are VERY different worlds. Oh well, the music itself was fine and nice to see Belinda O’Hooley there on Piano Accordion.

Third poo attempt saw me scuttle (on the buggy, Teresa having to defend my “spot”) back to the van during the concert to use our loo (not ideal but nobody else “waiting” so a relaxing place. A lot of “bad” eating is, at long last, having some impact. Missed a bit of Belinda O’Hooley but progress was eminently worthwhile!

Lest anyone think I have a downer on the needs and problems Lesbians and Gays have, I don’t, they have and continue to fight hard for their rights and I support them. But society’s desperate need to combine minorities means that there is an assumption that Lesbians and Gays are the same – well from a sexual point of view they couldn’t be more different, one set only likes boys and the other only girls!

Confuse the mix with Bisexuals who are often considered as not one thing or the other.

Add Transgender which is nothing to do with sex but does stick to the gender binary (either male or female)

Then add gender non-binary (me) who nobody understands.

It’s like saying ALL animals are the same because we use one collective word for “not human” (animal). It just makes no sense.

In addition, the groups within LGBTQ … can often be more antagonistic to each other than the outside world. It is not a simple as a rainbow and a label (LGTBTQ).

In particular there is often an issue between the lesbians (and heterosexual women) who want female only safe spaces and the male to female transsexuals who are males trying to infiltrate their space and must be a danger to them.

However so long as they pass it’s “don’t ask, don’t tell”. But the non-binaries like me or the Transgender who don’t pass – we don’t get a safe space – the male spaces can be dangerous for us and we aren’t “accepted” in the female spaces so exactly where are WE safe.

So, this whole lumping everyone together in one label (LGBTQ…) and wrapping us all in the same rainbow flag can hide a complicated mess and subsets of LGBTQ… end up hijacking the label (and flag) for their own particular “branch”. It’s a mess and I think it just needs a bit more care and awareness and acceptance within the community and outside, the media love labels and boxes.

Mon 26-Aug-2019

Last day – time to pack, includes emptying the toilet and grey water containers. I took the toilet cassette on the buggy, Teresa pulled along the grey water. The disposal point is 2-3ft above ground and there was no way Teresa was handling that toilet – especially with poo in it! So, we got the bits as close as possible, I got off the buggy, lifted and emptied them. Hard work (and one day I won’t be able to 🙁 ), but job done.

Teresa did virtually all the packing apart from the Solar Panel which has well justified its expense and inconvenience transporting.

The only other thing I have to help with on tear up and down is the utility tent. We’ve got better at it, but it’s still a two-person job. I stand on one side pretending to be two polls while Teresa puts up the two polls and their guy lines on the other side, then the 3rd poll from my right hand and then the last pole which has its guy lines tied to the roof rail (it’s only a foot or so from the van). The system seems to work, you just need to get the sequence right. We were lucky it was not throwing it down with rain or blowing a gale, but I think we’ve pretty much cracked it and so long as I am fit enough next year, it’s looking good for our current setup working for another year.

For the last concert, I was in the Bellstone (with all the volume issues), Teresa was elsewhere doing her own thing

  • AKA Trio – really not my cup of tea
  • Andy Fairweather Lowe was good entertainment albeit loud and not folk music, not even close!
  • While, Mathews and While – more of yesterday evening from the Pengwern – perfectly pleasant
  • Skerryvore who were mega loud – and would I suspect have sounded a lot better, further back in the venue. However, I do like them and they helped me stay until the very end (something that is rare)

I suggested and Teresa had already intended to bring an Ice Cream on her way over after her lunchtime concert was done, she did, the drips were the mildest ever, but still there. She came over and joined me part way through.

 I just do not get it, in sensible acoustics putting disabled people with the best view seems like kindness, with a high stage not necessarily as you get a crick in the neck trying to see UP to the stage.

But in this venue with that PA, it is an act of cruelty, especially since we were sat right in front of the main RH stack and fill stack, plus the RH bass bins. At times the bass was enough to move clothing, it was Deep Purple loud (for those old enough to remember!) without my headphones I would have had hearing problems afterward. I understand, it was great if you were in the adjacent food court area and could hear the main band loud and clear, but, for those of us who are disabled, being shoved right in front of that was just not right despite, what I suspect, were the best of intentions.

And that was Shrewsbury folk festival. Very hot, very loud, a bit curates’ egg (good in parts), but a decent end to our festival season this year. It was orders of magnitude better than Towersey was last year. More organised layout, better provision of disabled loos. Better provisions for disabled (albeit I disagree with the locations, they did try much harder)

By the time we got out of the main marquee and packed the buggy in Angelique we left around 7pm. We needed petrol and wanted to avoid motorway prices and spotted a sensible petrol station just before the main road out of Shrewsbury and filled up.

Off to view the next kitten, in Gloucester at 9pm. We were there to see some Orientals, but I could not help but be attracted to some Tonkinese (a breed we’d never heard of before). We liked the breeder and the cats; however, they were allowed to run around outdoors before their vaccinations were complete. Especially after poor Ferret that was too much of a risk for us and so we ended up saying no (after a day or so’s deep thought).

Oh well, it was late by the time we left (10pm at least) but I feel awake enough to make it home, we stopped at Exeter Services for loo and coffee (for me) around midnight and got home 3am.

Shattered and to bed!

Tue 27-Aug-2019

Slept till 9am ish and then had a rush to take drugs in time for lunch – it is 3hrs from breakfast before I can eat again and I like my lunch at 12:30, so I needed to get skates on!

I had a good sleep in the afternoon too.

It was clear to me that I wanted a Tonk not an oriental – more affectionate. Given the competition I have from the cat’s attraction to Teresa, I need all the edge I can get.

Both of us investigated Tonkinese (a Siamese, Burmese cross for 1st generation)

Teresa found some in Plymouth but not available till the weekend.

I found some in Bristol and Teresa rang and was able to arrange for Wednesday (tomorrow). We agreed late morning (11:30 our guess). It was a mad thing to do when I was already tired from the journey home from Shrewsbury, but when looking for a kitten, …

Wed 28-Aug-2019

We left about 7:30am (4 hours no prob), Cornwall services as usual

As came near to the A38 at Bodmin I saw overhead sign saying something like (accident at Cheriton Bishop) take A38

Didn’t sound very definite so did not do a last minute “swerve” off onto A38

About 1/2hr later, after Bodmin Moor we hit (NOT literally of course) stationary traffic. It took over 2.5hrs just to get to the diversion (via Tedburn St Mary), another 1hr to get through it.

While sitting there, engine off, I felt some bottom stirring’s and took Loperamide – no way I was handling that!!!!

I needed a wee, so while we were stationary I popped out of car (we were in the outside lane) and did the wee in the bushes next to the inside lane (there was a lorry in a layby there that provided a modicum of shielding!). A time when having male equipment is so much more useful than female gear (and needing to squat), I had some spare loo roll in my handbag (from festival) and so …

We arrived Bristol 3:30pm – we had been keeping the breeder up to date and she wasn’t going out, phew on that!

I was immediately in love with both the male Tonks the breeder had. She had clearly looked after and domesticated then well. In the end I selected the one that seemed to have a bit more spirit, not great for me, I wanted the more passive cat, but great for Barney who needs an active playmate, so, do the right thing Bean, …

His name was Whisky, we left at 4:30pm, mega exhausted.

We decided to avoid the A30 at Exeter, even though West bound was supposed to be clear. It meant needing to stop off for more expensive petrol than we liked and going via the A38 and Taymar bridge, but …

Every time we stopped, I put my hand in the basket to stroke him and was rewarded with lots of buzzing (purring)

And home around 9pm – really exhausted.

Not much sleep but he did “sleep” with me. The other 4 cats were terrified and ran upstairs and hid and never appeared. He stayed downstairs with me.

Thu 29-Aug-2019

All day with kitten (holiday off work)

Fri 30-Aug-2019

All day with kitten (holiday off work)

By now the kitten rejects all kitten food for big boy food, however our forays into kitten food that was stolen by the other cats – especially the wet food by Jane was to return to bite me BIG TIME in a weeks’ time.

The following is a Facebook trail (well, almost the same but tidied up a bit) and relates to a bit of yesterday as well as today, it’s just all here for completeness.

New kitten, a Tonkinese (Siamese/Burmese cross but a breed in their own right). Collected from Bristol and we got stuck in that A30 accident in Devon for 3.5hrs on way there. Kitten and new father exhausted. Rest of our 4 cats total wimps. We know it will take time for them to adjust so we give them the time they need. They are currently camping out upstairs with own food water and litter tray!

His original name was Whisky. His currently working name is (Mr) Biggles but its early days yet. Currently fast asleep on my lap so I am going nowhere. Having to take time off work for this bonding and settling in with the other cat’s period.

Having driven back from Shrewsbury Monday night and then an 8hr drive to Bristol followed by 4hr drive back on Wednesday my fatigue levels are stratospheric!!!

Update: As I feared, the pull of the other cats and in particular the fellimones (cat pheromones) emitted by Teresa have won and I am able to write this update and release a new blog because he’s upstairs sitting with Teresa (she doesn’t encourage him but she is just such a cat magnet). IF she is out of the house and IF the other cats are all asleep then he MAY sit with me, otherwise, I’m just not interesting enough. I knew this could happen even when he seemed to have bonded so well to me, it’s sad (for me) to see it happen so soon, I got just 2 days before I lost him, being rejected because you “don’t understand” is my norm (as an autistic) but it’s hard when a cat does it to you so easily 🙁 🙁 🙁

Teresa posted this:

Little one’s first tentative snuggle with jane this morning:

Of course, this occurs on Teresa’s lap, not mine 🙁

Postscript

We’ve done three festivals, like last year, we’ve certainly had our ups and downs both personally and in the quality of the festivals, but we did it and with my body in the state it is, that is pretty darned good.

We are also now a five-cat family, always good to have a spare cat for when one of them dies which given their age is going to happen at some point as we have three of them all in double digits.

If I were Teresa, I’d have a spare husband all setup for when the cancer overwhelms me, but she says she isn’t going to do that, she doesn’t really understand the “spares bean” philosophy. Spare tin of beans, spare husband, all the same to me.

Mind you, I do draw the line at a spare wife, so I suppose she isn’t being that silly 🙂 .

The Bean, Pendeen, 15-Sep-2019

Scan results, dentist, a lot of pain, oh and off to Shrewsbury Folk Festival – 17-Aug-2019

Random pic of Burli

There are probably suitable pics somewhere but I can’t find them, so here is a random and old picture of Burli and my less than stellar legs 🙂

Sat 17-Aug-2019 

Time to start packing the van for Shrewsbury folk festival. 

First, fold the stuff that came back wet from Warwick (tent, groundsheet, windscreen cover, … The buggy kennel was still damp so we just left it in the sun for a few hours and all was well. 

As we did in Warwick, the solar panel is loaded, forecast is for cloudy so I hope it still generates (just) enough power to keep the batteries going for the full 4 days of the festival. If we make it the full length, we are talking 3.5 days (7am Fri – 6pm Mon). 

My sun hat should have been in the door of the car but it wasn’t. Today was the first sunny day for ages and so not worn since Warwick. Hmmm, next place the buggy basket or buggy bag. Nope, somewhere in the house we should have a spare – we had two of them. Nope absolutely nothing. 

Later on, I felt I could imagine it getting into the same bag as my full waterproofs, no real good reason but it could have been or in the draws where we store stuff in the tent as I remember putting the hat on top of the draws at some point. 

Well, not in the draws but YES in the waterproofs bag. 

Sun hats for my (man sized) head are hard to find unless it’s boring man, white, khaki or camouflage. But this hat was from M&S and fitted my head and is totally crushable and hence works well for festivals where there’s limited space to carry around and the sun tends to come and go. 

Phew, that was a relief. 

I have no idea what else happened, that was more than enough to wipe me out. 

Sun 18-Aug-2019 

Cooked flapjack and fish pasta this morning, it totally wiped me out – as in unsteady on feet, unable to be coherent, … 

Fish pasta is a Teresa recipe that I fodmapped, pesto pasta is a recipe of my daughters originally, that I Bean’ified and subsequently fodmapped. I alternate making a “large” batch of the two recipes and that provides me regular lunches. A batch usually does me a couple of weeks which keeps fine in the fridge. 

I’m autistic, I think it’s great I alternate lunch’s every 2 weeks. I used to have the same lunch for years (like 20) at the time, I don’t like change! 

Slept after lunch – well I should have; it was only 45 mins but … Totally groggy afterwards and should have known better and instead did some more packing the van. 

BAD Move I should never do anything “physical”, which, for me is a very literal thing, anything more than sitting down, even standing can be too much! 

Checked the battery charger in the van (for the buggy batteries) making sure they are fully charged after Warwick – that’s how little I get out, not used it since. 

Anyway, charger insists on showing a RED led or if green pick up the charger and it goes back to red. Panic – need to replace buggy batteries? I know that they need to be kept charged but, … 

I tried both batteries, one should have been fine and at first seemed so. I checked a few hours later and it behaved the same so I tried my “backup charger (I’m not called spares Bean for nothing!) I had already packed it to go (so I had both chargers with me – I always do when away anywhere “just in case”. 

Anyway, it was happy that both sets of batteries were fully charged so the other charger was working apart from the “it is charged” led. 

Phew – saved money, new batteries around £90. Still now I need a new spare charger – but that’s £20, ordered! 

Interestingly the “official” charger is circa £150 and lasted a bit over a year of not intensive use. So will stick to “low cost” replacements and carrying a spare! 

I got myself in an awful state and although I crashed out around 9pm, the subsequent poor night of sleep is very understandable. 

Mon 19-Aug-2019 

Posted this to FB this morning: 

4am! Been awake since around 3am and given up and popped the kettle on. Can’t imagine why I am awake. 

Oh, well, maybe I can. Last Tuesday CT scan, this Tuesday venesection, this Wednesday scan results. 

Nope, absolutely no reason at all for my brain to periodically go into overdrive and refuse to switch off. 

Oh well, the advantage of working from home, I can sit here in my home office and get ahead on the weeks work to cover the time I need to spend in hospitals this week. 

Oh, the joys of cancer are so rich and varied, you just have to laugh? 

Oh, and yes, I am mega fatigued, I am exhausted after the weekend, but being fatigued and being able to sleep, well 

Oh, why do I keep writing Oh, … 

So, there you go, this week is going to be tough, especially as we still have to finish packing the van for Shrewsbury. We leave around 8pm on Thursday evening and will prob sleep somewhere on the way arriving at Shrewsbury around 7am (when the gates open) so that we can get a pitch that we like – reduces stress. 

After our problems at Warwick a month ago we are both rather trepidatious, be surprised if we weren’t. But we are trying, it shouldn’t have to be this difficult and it’s REALLY bad timing I have so much medical stuff at the moment – Wednesday is NOT just scan results, in the afternoon it’s to have the temporary crown removed, the new one fitted and a filling done. That’s going to be “fun”. 

Poor Shropshire Folk Festival really does have some challenges being thrown in its path. On top of which it’s a new festival with all the worries I get about that (hence the 7am arrival to give me time to find a nice pitch without too much pressure). However, it’s a bank holiday weekend and … 

Worse we are due to finish at 6pm bank holiday Monday, apart from getting off the site with everyone else, we would be hitting Birmingham and the M6/M5 roadworks around 7pm on a bank holiday Monday afternoon with loads of people heading home after a day or weekend out. It WILL be so much fun, the thought of it is enough to stop me leaving the house to go there in the first place, I will, of course, and I will “manage” my worries about the journey home and try to stop them taking over our time in Shrewsbury, but it’s hard to keep the obsessive worry (thanks autism) about my inability to control EVERYTHING and that journey home. 

Suffice to say that I use a well-established “counselling” technique and cope by keeping an idea in my head of my relief at parking the van on the drive way, late Monday or early Tuesday morning. Keeping focussed on that image helps me cope with the worry. That technique is fundamentally CBT. It’s something you can do for yourself; it can help to have a therapist to learn and understand the technique but it’s really not rocket science. The NHS like CBT because it’s quick and easy when it works, but it needs to be used for that sort of problem, there are a LOT of problems for which it merely sticks a band aid over an underlying problem. However, for this specific circumstance I find the “visualisation” (which is not actually visual for me) of my goal helps me jump over the worry over the process of actually getting from A to B. 

Otherwise, just getting on with my day job. 

Tue 20-Aug-2019 

Venesection at 8:30am, went fine as usual and home quickly, but, as it always does, it knocks me out for the rest of the day 

Wed 21-Aug-2019 

This was, I think a fairly normal day, oh no, it wasn’t, I had clinic followed by dentist for a filling. 

Clinic was OK – no change (stable), the closest I get to “good” news nowadays. Actual good would be “reduction”. 

Then onto Pz and the dentist. At the time it seemed to go fine and the new crown was fitted and the filling done. 

The dentist’s chair was as uncomfortable as it always is but … 

Thu 22-Aug-2019 

Awoke in a lot of pain, back, chest, shoulders, neck, … As far as I could work out the muscular tension from being in the dentist chair plus Pazopanib’s penchant for muscle and joint pain worked together. Coughing hurts, breathing is not fun, … 

I am not capable of anything, including packing the car, so the last bits are down to Teresa, thank goodness the bulk was done at the weekend! 

I hate pain killers so avoiding them for now. 

Our original plan was a departure around 8-9pm, sleep in the car and arrive in Shrewsbury nice and early (gates open at 7am), 

However, Teresa decided that yes, it was time I was allowed a new kitten (after my Ferret died so young a few years back). It does mean “we are five”, but in reality, three of them are getting on a bit and Barney (3 years old) is still frisky and full of beans and nobody wants to play as much as he does. 

So, we are looking for another Oriental (as Barney and Spook are) and a boy. Teresa found a place with a kitten near Taunton and we decided we could call in on our way up to Shrewsbury, agreed that with the breeder and set off around 5:30pm. 

Arrived and found the place easily enough but the kitten was a very frightened little thing and so we decided no. We drove on as far as Gloucester services arriving sometime after midnight – I don’t remember when and slept in the car. I was in so much pain I didn’t really sleep so by the time I woke Teresa (who went out like a light) at 6am I was exhausted. 

Fri 23-Aug-2019 

However, Teresa got her almond croissant and then off we went, getting to Shrewsbury around 8:30am (gates open 7am), it was quite busy but we got pitched up in the disabled area OK.  

Teresa did the bulk of the work in setting up camp and we then got our wrist bands and I went to bed in the van to try and catch up on sleep. Not easy since it was Mega hot and I ended up sleeping with the door open, exposed to the world and very hot. 

I rested more than slept, but it worked. 

The main loos were all at one end of the site but disabled loos were scattered around the whole area. Hmmm, it’s amazing how many people become disabled for “convenience” :-). Fortunately, they put padlocks on the door that use a Radar key. Brilliant except radar keys are cheap as chips and available on amazon for anyone. The festival also “rents” a radar key to anyone who wants one (something I was later to be grateful for). Oh well, the system clearly got abused but not too badly and less than without the padlocks. 

Things been all quiet on the poo front, that means TOO quiet and so I’m starting to “stretch” my fodmap rules. At Gloucster services this mornign I had a sausage bap as my 2nd breakfast – onion in the sausage, gluten in the bap. 

Quite nice as these thigns go but no impact on the digestive tracks, this does NOT bode well. Decided to go “al fresco” for tea and got something from the food court, can’t remember what, may have been pizza? May have been a curry thing that I either had tonight or tomorrow night! 

First night I wanted to see the Oyster Band. Being me, I did not want to move around (Teresa does) and so I am subject to whatever else is on. 

The main venue is the Bellstone, it is a massive area and they have some “good” disabled space however it is RIGHT at the front and in front of the main speakers and STUPID loud! Nothing further back, even my noise cancelling headphones were overloading it was so loud! 

I did not get on with first group (Mankala). Grace Perry was ok (a protest singer) and the Oysters brilliant. All old familiar tunes but still fun. IO was falling asleep on the buggy all evening. 

Back at van 12.30pm and crashed, I woke once during the night for the loo and once at 6am and dozed till 7.45am. 

Saturday onwards will be in next week’s blog. 

Postscript 

I don’t know what happened to my body after the dentist visit but it was really unpleasant and did not clear up for some days. 

The scan results were as good as they can be, almost anti-climactic, but trust me, we feel a lot of stress before getting them. 

Long may stable last, though as more up to date blogs reveal, the road is never smooth. 

The Bean, Pendeen09Sep-2019 

More medical stuff, relationship still hard work, prepare for Shrewsbury folk fest – 10-Aug-2019

New wheelchair, I wonder why there is no power?

Sat 10-Aug-2019 

Hmmm constipation continues from Friday not surprising after taking loperamide on Thursday, today is worrying 

Sun 11-Aug-2019 

Constipation continues, even after three softeners overnight. Action MUST be taken. 

For the squeamish, move right along and skip the next paragraph 

For others, as I have had to work out, when in this state and things are clearly “impacted”, the best thing to do (since all else has softened but is backed up), is a little (digital) help. Not as disgusting as it sounds but a very practical thing that deals with the immediate blockage and lets everything else come through “naturally” and stop the situation getting worse. It was only after I took this action during the Warwick, 3 day “hiatus” that things got moving. Not the sort of thing you want to learn, but I remembered it was necessary when one of my children had the problem. Now as soon as it feels impacted (it’s waiting to exit but cannot complete the last few millimetres, I will act, no waiting for a few more days. 

Ok, the squeamish can return 🙂 

Mon 12-Aug-2019 

Blood test 8:30am. A perfect opportunity to compare one person’s experience against mine when I meet someone. 

So, on arrival, I knew the phlebotomist (well I would, I go there regularly!) and so we chatted about the test to be done. Selected the best vein to use (I am a bit pin cushioned so, …), after all I know where works better than others, it’s me with the holes in them! 

We discussed the blood flow, what happens if the needle moves and there we were, the phlebotomist making sure the blood was flowing and me watching my arm and the needle to make sure I didn’t move. 

Once done as she batched up the blood and did the paperwork, we discussed the problem with Oncology blood tests – they are not available to the GP, but they have worked out if they take the request, make it from themselves and then copy the results to Oncology then they get their results. Crazy! 

Anyway, as we were chatting, I suggested that maybe the tourniquet come off now. We laughed and off it came, she’d forgotten, it happens. 

So, that was a fun visit, lots of chat and banter, no stress at all. 

Well, I’m sure that’s what the fly on the wall said. Me, I got home absolutely wiped out by the effort in delivering such a command performance! Welcome to the world of autism and masking! 

Otherwise just got on with work 

Wheelchair arrived today (pretty quick) 

After assembly, it was as dead as a doornail, so being me, an analysis followed, this was sent to the supplier: 

  • The chair was received today, no damage to packaging. 
     
  • When my wife returned home, we assembled the chair, connected the batteries as instructed. 
     
  • Pressed the “on” button, nothing happened.  
     
  • Lead Acid batteries will have power in them on delivery (unless they are dead) so I expected some level of life even without charging. 
     
  • But, just in case, I plugged in charger. Nothing happened. Pushed “on button” again and this time the top 5 leds ripple from nothing to all 5 and then back to nothing again. Second row of LED’s do nothing – this means chair is locked because charger is plugged in. 
     
  • Checked both batteries and the rear battery (red connector only) is faulty, one of the two terminals has a loose wire (not attached to the battery!) Looks to me like the crimp to the connector wasn’t properly crimped and the wire fell out! 

I online-chat’ed to the supplier before sending the email and though it was 6:20pm (I think) I got a response from Josh who was providing out of hours cover! He asked for photos and said they would look at in the morning. 

SERVICE! 

The company (Glebe Healthcare) were wonderful (and cheap) and after some discussion as to whether they would get a whole wheelchair sent out to replace the “broken” one, we agreed that since I had stuffed the detached wire into the connector as a temporary fix and everything worked, there was really no need and a new battery box was quite sufficient and I could sort. To be honest I could have just re-crimped the cable but I didn’t want to have to. 

Glebe contacted the supplier; a new box arrived the next day (Thursday by now). 

Tue 13-Aug-2019 

Did some day job stuff, didn’t go to Penryn this week as today I have a CT scan. 

So, off to West Cornwall I toddle at 10am. Arrived bout 1/2hr early for the scan. I worry about parking and also know that if I arrive early, chances are they will take me in early and so they did. 

Again, the person putting in the canula (for the contrast) and I chatted about the best vein, what size canula they use. 

Scan, yup, I know the radiographer doing the scan, well, you do. Contrast hooked up and scan went fine as usual. 

A wait of 10 mins to make sure no adverse effects and off home. I was finished with my scan before it was due to start. The next patient didn’t arrive as early as me and so they had to sit idle for 10-15 mins before being used. Expensive resource to sit idle. 

Anyway, back home and wiped out not only because of my (usual) performance but also the contrast seems to have that effect – or maybe it’s the stress caused by the fact that what follows the scan are the results and they are bloody scary! 

Wed 14-Aug-2019 

Lost today down to usual post scan exhaustion 

Thu 15-Aug-2019 

New battery box arrived, took me 10 mins to swap over the battery and all is running nicely, I can’t wait to test the wheelchair out and about. 

We will keep the mobility scooter for  festivals, it is more stable, we have a spare battery – festivals have charging points for batteries but while charging you can’t use your chair/scooter, as we have a spare battery for the scooter AND it fits in front of my feet I can use the scooter to carry a heavy battery to the charging point (because I carry a spare). 

In general, the buggy (as we call the scooter) carries an awful lot of “gubbins” that we take around a festival and does the job so well – even with limited ground clearance (2” vs 4” for the chair!) 

For going to the University or shopping or anywhere else, the wheelchair is far more manoeuvrable and easier to use 

A diarrhoea attack tonight but then I’m having grapes (at lunchtime) and broccoli (Calabrese at the moment but proper broccoli earlier this week) with my tea.  

Clearly it can be a tad too much for my digestion but a Loperamide stopped it, … 

Fri 16-Aug-2019 

Just work, though poo is on strike for now, so will have a less ideal lunch and grapes and so if it restarts without going nuts. 

Actually, I am, hopefully, having a chicken chow mien from the Chinese takeaway as a special treat. It WILL get things moving so I may have to take a loperamide before eating just in case, but worth it to just have some normal food (and a treat for me) in my life. 

Fodmap RULES, it gives me the space to have a bit of nice without things getting out of hand. 

Postscript 

Teresa and I are moving onwards slowly, we are preparing for our next folk festival, I’m not convinced I want to go if it there is any risk of a repeat of Warwick, but if we don’t prepare then the decision is taken out of our hands – we won’t go.  

It’s hard for both of us, in many ways I’d rather just not go than take a risk. Teresa can’t plan the things she wants to go to which is part of her pleasure in going. We both have to try and mentally (and emotionally) “dance on the head of a pin” so that we are hoping for but not expecting against. It’s hard, albeit in very different ways, for both of us. But we are trying – that’s what you do, you just don’t give up. 

The Bean, Pendeen05Sep-2019

The stress continues, but it is not pitch black at the end of the tunnel 03-Aug-2019 

I am a bit behind, we’ve been away at Shrewsbury Folk Festival, there is much blog material to come, but it’s going to be a while to catch up. Still this was finished so here it is, a couple of weeks late.

Sat 03-Aug-2019 

The aftermath of our strains at Warwick, followed by a psychologist visit and then the dentist continues, if anything, things are getting worse between us 🙁 

It’s not that we don’t want to sort it, but my insistence on more “balance” is proving difficult. 

I know in the end I will have to “disconnect” to take the pressure off Teresa, but from many years (and 3 marriages) of experience I know the relief at that by my partner means any effort to change things stops. 

So here I am, I can take away the pain for her (it remains for me) but that only guarantees that next time will be worse (because, for me, nothing changed) 

It is awful, I don’t want it to be like this, Teresa doesn’t want it to be like this, but she is having to climb a mountain and has no skills or tools to help her. 

It’s not fair, as an autistic I long ago had to learn to climb the neurotypical mountain and whilst I’m not very good at it, I do have some skill and some equipment. I’ve had a whole lifetime of experience of the challenge. 

Teresa like most NT’s has neither the experience nor the skills and in reality, is sometimes unaware there is even a mountain that needs climbing. 

It would be easy without love, I’d just turn my back, but I do and I can’t, not without a fight. 

So, here we are struggling. 

Sun 04-Aug-2019 

Still struggling 

Mon 05-Aug-2019 

Still struggling but reaching a crescendo of pain 

Tue 06-Aug-2019 

I went into work but had an email from Teresa, she wanted to talk, that sounded ominous and I said so. 

… 

So, we talked, not sure it’s any better but was less fraught. 

However there seems to be some understanding that  

1) I understand that there are things I need from her that Teresa cannot and will not be able to do and I need to do them – that’s hard. 

But 

2) There are things (often mundane) that Teresa can do that just reduces my workload enough that I have room for 1) 

3) Not being good at spatial awareness/diy is not an excuse for not making an effort outside your comfort zone, just like being autistic is not an excuse for bad behaviour.  

It’s unnecessary to get into details here – but we are more than happy to share 1:1 if our experience could help anyone reading this. 

Bottom line, neither of us give in easily, Teresa is aware albeit dimly (and sometimes) of the mountain between us, she is not really skilled but is willing to at least to try and climb a few inches. That’s all I need, if she will do a few inches on her own I can help her up the next few, … 

Wed 07-Aug-2019 

Teresa is busy today doing a number of things that have fallen by the wayside (ordinary stuff but it causes me stress), including helping me decide on a wheelchair – I’ll talk about it a lot more in another blog, but in enclosed spaces (buildings of any sort) the mobility scooter is not much use, having a turning circle akin the titanic! 

Thu 08-Aug-2019 

Ordinary (for me) diarrhoea like I get once or twice a week, no big deal, Loperamide and expect things to be quiet on Friday. 

Well after much agonising, the wheelchair is ordered – the one I wanted remained the one I wanted even after Teresa had looked for alternatives and had a “preferred”. However, when I went to double check it would fit in the space in Angelique occupied by the buggy, it didn’t! So, I needed one that “folded” in some way. Finding that and electric was difficult without spending thousands. So, we ordered the one Teresa found at a reasonable price. It’s not perfect, but will do the job. 

Fri 09-Aug-2019 

Today we drove to Plymouth for a Coccyx exam as part of the accident claim 

A storm forecasted (the one that cancelled Boardmasters) meant I was worried about rain and wind building. In the end I decided to chance it and we went. No great problems except managed to lose my stick (causes some walking and standing issues. We (Teresa, I was sure it couldn’t be there) found it in Teresa’s car which already had one. Only explanation I can think is that in the panic to go to the dentist last week I grabbed my cushions from my car and disabled badge and must have grabbed the stick. We were in Teresa’s car because there’s no parking so I needed dropping off. I guess it shows the state of panic I was in that I moved a stick despite knowing I have one in her car (always) and didn’t remember 

Visit basically OK, arrived bit under hour early and parking had been reserved for us. 

Consultant was nice, had to do an exam, now the only way for him to “examine” the coccyx area is the same as a prostate exam. I have had the indignity of such an exam a few times and it is really not any fun! However, it’s not fun for the doctor either so one just relaxes and thinks of England :-). HOWEVER, the point of the exam was to see if there is inflammation in the area of the Coccyx – oh yes, I think I expressed that very clearly at the time. Desiring someone to stop hurting you whilst having their finger up your bum is a difficult situation, fortunately he stopped and did confirm – yes there was still something going on there. 

Consultant was very apologetic about the “procedure”. 

Well, at least we know that, fix is a bit unpleasant as it involves “manipulation” of the area (guess how they do that!!!!), under a local anaesthetic so hopefully not painful just uncomfortable and then they inject cortisone (a steroid) that should (may) reduce inflammation. If may require 5 or 6 injections a few months apart and even then, may not sort it. Plan B is to remove the coccyx – wow, apparently that IS a thing. However, that is surgery and requires stopping cancer meds and tumours start growing so a difficult calculation!!! 

He also wants an MRI of the area (clearer than CT scans for bone mets). I can have one in Plymouth which means a day’s travel or I can try to persuade the NHS to do it. Not optimistic on that one, but will give it a try. 

The journey home from Plymouth was OK in all that wind however we did hit a squall on the Hayle bypass that was double speed wipers and 20mph and still mighty dangerous. 

As the fodmap diet is working quite well we had decided to try and extend things by Teresa getting me some grapes and she also got an Indian box meal from Sainsburys which we had for tea today. 

Oh yes, the Fodmap diet was working, having eaten an unsafe meal, oh yes, we are full explosion territory and another Loperamide. 

Postscript 

Mixed marriages (autistic and non-autistic) are never easy there is such a gulf in understanding (which can be in either direction) add in the stress of terminal cancer and well, hard verges on impossible. 

It cannot be helped by my awareness of limited time left to live and a desire that I am not going to “wait” for things to happen in the future, I may never arrive, so I have a strong sense of urgency. 

When that’s connected to someone you love (like Teresa) having to learn “new tricks”, well, it can be explosive 🙁 . 

We still love each other a lot, it’s all there is to hold us together at times, but that’s no bloody help at all in actually sorting things, that is, unfortunately just bloody hard work and persistence for both of us. 

Yup, all that on top of dealing with the f**** cancer. 

Oh joy! 

The Bean, Pendeen, 31-Aug-2019 

Warwick, Part 2, a row from hell 27-Jul-2019

Remember last week? I had to turf them off the bed to get into it, this is what I found when I woke up, my legs pinned in place!

Sorry this is late, but at least it is on the heels of Warwick, Part1. Hard to write, difficult stuff in here, for me, Teresa and you.

Sat 27-Jul-2019

When we got back to the van late Friday evening, after the concert, it was raining, something that is one of my big worries for festivals, especially with our new arrangements and the awning/tent not connected to the van, so if it rains you have to go out in the rain for the loo, to get washed, dressed, …

We got the buggy into its cover with some difficulty, Teresa’s spatial awareness is poor on a good day, at night, in the rain, useless and I got annoyed as I was getting wet and was VERY tired – no nap in the afternoon and all those people does that to me. Teresa didn’t enjoy me getting annoyed (why should she?) and had been tetchy all day, getting worse as the day went on.

Once we were in bed, I asked her why she had been increasingly “snappy” all day.

After denying it, she told me that she didn’t want to say but felt it was me that had been unreasonable and she couldn’t “stand it” (her word would be “struggling”, I know because I asked this morning as I write this).

I am paraphrasing and I KNOW she has a different version and quite rightly, I am biased, I see things from my perspective no matter how hard I try to see it from hers.

But therein lies the problem,

I know my autistic nature – the need for control and correctness, to deal in absolutes. The difficulty being with people causes me, no matter I DO want to be with them.

It’s too much for any NT to cope with, I know that, I’ve seen two wives before AND Teresa fall at that hurdle, so I mask it, I hide it, I wrap up my nature in a package that feels friendly to her and to others. I do it with everyone, that’s one of the reasons that being with people is so exhausting for me even though I want to be with them.

I went to the head steward on our arrival about the lack of disabled toilets, actually ALL the toilets were locked and moving the water, …, but I was extremely careful to make it a chat, to say I understand the pressures they were under, …, all I wanted to do was scream at them, but I didn’t, I controlled myself. Autistic me would have screamed, masking, social me was “Mx Charming” (as Teresa refers to me under those circumstances)

In my terms I lied to them, but in theirs I was a reasonable person unlike many people who’d just complain!

BUT and it is the moral of this story, sometimes it gets too much for me and I can no longer mask and hide and I need the people around me to “get it”, to realise if I’m seeming to be difficult it’s because I’m over stretched and they need to help carry the load for a while. This help is needed BEFORE I get to “breaking point” not after (when it’s just tolerating my grumpiness)

In general, I hate having to ask for help of any sort. Festivals are orders of magnitude harder because I am away from home, I have a desperate desire to control all that I can to give me enough reserves to cope with all the things I can’t control – at a festival full of people is a lot!

I can avoid a lot of the conflict between Teresa and I, if I just do everything myself (properly 🙂 ).

Thanks to the cancer, I can’t do that anymore and that causes friction. It means that it is more important for Teresa (or anyone else) to provide the help I need, how I need it and do it well. No, not all the time, but at critical times, better than usual.

Yes, that is difficult, but then being an autistic in a non-autistic world is not easy, I’m not asking for something more than I am willing to do, it’s just that if I seem “normal” people think that I’m not doing any work to seem like that so when they are asked to do some “work” it feels unreasonable to them.

It’s not, if you aren’t autistic in a neurotypical world, female in a male world, coloured in a white world, disabled in an abled world, …, you really do not understand what it takes for those who are to cope with a world that isn’t.

I may have written a few weeks ago when we went to Manchester how vulnerable I felt at a petrol station in a seedier part of town in a dress. Never occurred to Teresa because I seem so sure and confident in how I dress. Because I make it look easy doesn’t mean it IS easy to be different. Constantly having “looks” being called Mr, …, it is constant pin pricks (and sometimes brick bats).

So, yes, I was struggling that night, but what I needed was understanding and more effort NOT being snapped at, after all it was ME that tried to talk about what was happening, something autistics (and men) are supposed to be rubbish at.

In order for Teresa to help me how I need the help, I would prefer she worked it out herself, but often she can’t, she just doesn’t have the practical skills, I love her, but she is a “push it and shove it and tap keys at random until it works sort of person. I am MUCH more precise, careful, read the instructions, plan, run trials and tests in my head and practically. I am not known as “daddy one day” by my children, I am cautious and take my time to do it right and safely.

So, knowing the gulf, I hope Teresa will work out what needs to be done, but I realise I need to give her precise instructions. The trouble is Teresa and precise are just not good bedfellows and they fluster her and she gets worse.

The obvious answer is “do it yourself then Bean”, that’s what I used to do and it worked we didn’t get friction over that sort of stuff at festivals.

But since I no longer can, plan B is for it to be done “badly” (for me yes, but my feelings do matter).

I need Plan C which respects the level of difficulty I am having, more than enough for me to not go to a festival ever again and help is more helpful than usual because it’s recognised that my way isn’t wrong or bad, it’s different, harder for some yes, but it’s NOT unreasonable for me to ask for it and to get it.

If you don’t live with an autistic all of this will sound horribly unfair, unrealistic and selfish. It isn’t but I know it’s hard to believe me, that’s why I usually hide all this stuff from all of you, because you don’t understand and would (and probably do) think less of me when I try and articulate it.

Hey, ho, if you are in a relationship (parent, partner, employer) with an autistic, I hope this makes some sense, it certainly cost a lot to write it.

Please don’t think I am “slagging” Teresa “off”, far from it, she has to cope with a lot and is quite entitled to struggle. But even she is guilty of not realising how much I am struggling because I make it look easy so much of the time.

People at work always tell me how good I look. They cannot see the pain, the fatigue, the worry (about poo never mind cancer), …,

Good night from Mr Grumpy 🙂

p.s. I have let Teresa read this as it is rather intimate and she has passed this version of it as “acceptable” though I am sure she has her reservations 🙂

Sleep 2:30am Sat morning, woke 6:30am Saturday morning, including TWO loo trips :-(.

Constipation still locked solid and starting to panic, took softeners during the night, it made no difference.

I (and we) decided to leave at the end of the day so I could get near to my own toilet – or at least a service station with plenty of them when taking more serious action. That’s after 4 hours of sleep, so I suspect we won’t get far (the nearest service station is only 20 miles or so and that has decent loos, …)

One of the problems with festivals, especially when they have ONE disabled toilet is that in order to get my system moving when it fights me, I can be sat there for 15 mins or more, that’s difficult to do when you know others are waiting to use the same loo and psychologically that “blocks” activity.

It was raining all morning; indeed, I was dressed in full waterproofs working at the back of the van heating water, making tea, eating breakfast. Standing because sitting required the buggy and it was safe and dry under its cover, taking it out would have left me a wet seat for the rest of the day. When Teresa woke an hour or so later, we ended up locked in more discussion, indeed, when I was dressed and so was she, it was still raining, so we just sat in the van looking out the back door and enjoying the view.

Eventually the rain stopped and we packed the van, including everything (empty the loo, …)  it took 2hrs tops. A good result. We put the cushions in bin bags to keep them dry – everything was damp after all that rain. I dried off the solar panel and it wasn’t too bad, everything else that was wet went into bin bags. The bottom of the van (actually the bed base) always has a tarpaulin on it anyway, to keep the seats clean (and now dry too).

Anyway, all that caution worked and what should stay dry did and all the damp stuff was laid around the shed to dry off (after we got home). It would have been worse if actually raining while packing, but still it worked well.

I took the Toilet cassette via the buggy to be emptied and then went onto check that the exit would be open when we left around 12:45am Sunday morning – nope, locked at 10pm.

The advice was to find a security person when we wanted to leave – not up for that need a better option so decided would go back to the head steward’s office when we finished packing.

Once packed we went to head steward’s office and explained the problem, did so in a chatty manner like I had on arrival about the loo’s and we chatted, turns out they already had posters ready with a mobile number to ring when ready to go. Clearly my question had percolated through the system and an hour later by the time we had got to the stewards, all was sorted, with a laugh and a joke. NT world is happy! The stewards on the gate have no idea how angry I was and how much I wanted to scream at them, it wasn’t their fault, I knew that, but the problem was just as frustrating and my default brain action is to shout first, worry about who hears second. No, of course I don’t do that nowadays, but I have had to learn that (I did so during my teenage years). Not all autistics ever do which is why some of us seem very anti-social, angry, aggressive, ….

This is what is known as a meltdown and in a child would be visible, in adults we lock that down but the stress in doing so is incredible because the pressure is the same. We are not talking annoyed; we are talking white hot anger (in NT terms).I know what angry sounds like but it is the best analogy, it is not anger it is intense frustration, anger at myself, the world, very rarely the people that would be in the firing line if I did not manage it

It would be easy to misunderstand my explanation

1) I am not good with words (dyslexic and just not a language thinker)

2) My vocabulary for emotions is highly unusual and atypical, words are what they feel like not what the dictionary or common use defines them to be

3) If you’ve not lived with an autistic, it is very different to an NT person and the whole relationship thing is very different.

We watched the lunchtime concert in the main marquee for the first time (yes a sudden and total change of subject, another characteristic 🙂 )  – they had space for disabled – good, directly in line with posts holding up the marquee, not so good, central mike on stage in line with posts – so I never saw the artists on that spot – NOT so good!

Constipation continues

Evening concert, same marquee but the venue manager was someone we knew as a (different) venue manager from last year and was brilliant, sorted out a slot closer to stage and hence I could see around post. As is often the case at festivals, the stewards on the ground will often bend over backwards to look after you. Not all, but that’s just being human, but enough to be a source of pleasure. Warwick, despite my criticism of its organisation, has more than its fair share of nice stewards.

A good evening – we saw the Magpies again and the difference in sound quality was like chalk and cheese, however even they commented (on stage) that there were issues with something resonating in the sound system.

O’Hooley and Tiddow brilliant and as I posted (on Twiter I think):

Discovered @OHooleyandTidow via #GentlemanJack, saw them at Warwick with @TeresaBenison. That song was the climax to their act, but even if they hadn’t performed it, I would be a happy camper – it was a brilliant set. We would travel far (from West Cornwall) to see them again.

Concert ended 12:00, by the time we had loaded the buggy it was 12:30 ish, rang for the gate to be opened (using phone number on the poster) and told someone was already there, so off we went no probs.

Yes, we are still on the same day as when you started reading this bit!!!

Sun 28-Jul-2019

I felt very alert (relief at “escaping” I suspect) and just drove, we were going to need up with fuel eventually but I decided to stretch as far as possible until either I felt tired or the car felt thirsty. Both arrived at the same time and we stopped at Michael Wood for loo and possibly sleep. Still no loo activity and more awake so decided on fuel and keep going. Felt surprisingly awake – Teresa been asleep all the time and me listening to stories via my phone and a mini Bluetooth speaker.

Got to Sedgemoor services, well south of Bristol (and where we stopped on the way up having skipped Taunton Deane) and felt sleep might be OK. It’s 2hrs free so I set my alarm for 1.5hrs, which is often all I sleep for in one go anyway. If still tired we would pay for the night, if not, …, slept like a rock but woke 30 seconds before the alarm!

Went for a quick loo – turned into a very long one but success. Poor bottom feels bruised after all that pressure and pushing but phew

Off we go, think we were still in time limit – guess we will get a letter if not 🙁

It’s now daylight – albeit 5;30am How on earth have I driven so far on so little sleep and why do I feel fully recharged? Given how fatigue normally hits me. I know this is what happens when I drive and the fatigue catches me up and can take a week or more to discharge, so I WILL pay a price, but this is getting me home and near my own toilet and that is VERY motivating!

After discussing with Teresa, we decided to stop for breakfast at Exeter – ooops we were talking and I missed the turning.

So, plan B (I ALWAYS have at least 6 backup plans in place 🙂 ) and we stopped at Cornwall Services. I had coffee (for me to keep going) plus a ham and cheese wrap – normally a no-no as not fodmap but with current digestive problems maybe a good idea to keep things “moving”. So nice to eat normally!!!

We got home around 9am?

I did have a nap in the afternoon for 2 hours but otherwise all OK so far.

We unpacked the Van in the afternoon.

My system is still not as good as I would like, still very constipated, I got some old-fashioned Chilli Con Carne from the freezer (made and frozen before the new diet) and had that for tea – again really nice to have “proper” food. I like my fake chilli but no comparison to real deal.

An early night and crashed out.

Mon 29-Jul-2019

Lunchtime some more of that chilli, poo still on the move, firm but moving – rather nice food than drugs to help it along 🙂

As part of the accident compensation I had an appointment with a Psychologist this afternoon – only in Redruth but more driving than I would like.

It did NOT go well – this is from the Email I sent to the company that organised it:

I attended the appointment yesterday and can confirm there was indeed one step into the building.

Finding that entrance was impossible until after we left as the level of sign posting within the area was appalling. The only entrance we found required more steps to be negotiated first. It was only after we left that we worked out where we should have parked to gain direct access to the building.

However, I cannot confirm the step into the disabled loo as that was not available as it was only accessible from a consulting room being used by someone else. If we hadn’t happened to bump into someone who was using that room we would have just walked into someone else’s session. There was nobody “on reception”.

The only toilet available was up a flight of stairs.

The consulting room being used was also up a flight of stairs.

The whole reason for the appointment was the distress I have in driving since the accident. Given that I had to drive to the appointment and hence was already stressed, the lack of access was the final straw. It meant that the first half of my meeting with the Psychologist was marred by my distress at the lack of respect for my needs despite my having made my needs clear in advance.

Apparently, the Phycologist herself had not been made aware of my requirements and allocation of rooms seems to be done between the individuals using those rooms.

That was NOT the professional experience I expected.

No afternoon nap of course and we called into Sainsburys on the way home for a food shop. Why, oh why, do they let their stocks run down in the afternoon – makes shopping after lunchtime frustrating.

Got some grapes as a treat as I seem to tolerate them a bit under the new diet and my system still needs some help to avoid blocking up again.

Fish and Chips from Frasers, had gluten free batter

Again, crashed out at bed time

Tue 30-Jul-2019

Was a fine day till I bit on a chorizo stick (we bought at Gloucester services on the way up to Warwick) – felt like a bit of bone crunched against teeth. Removed couple bits of bone from mouth and popped into bin. Felt with tongue – not right rubbed finger on side of tooth OUCH!

OK emergency appointment time

I hadn’t visited our dentist for years and so we had lapsed and our reduced private patient costs due to lack of NHS dentists had been taken away from us and I could only go fully private – OUCH.

But got appointment – at full Bupa private rates – £80 – worth it

Before we left I had panic attack as I do not need even more medical interventions than I already have to cope with.

To be fair the dentist was brilliant. Saw me ½ hr after the phone call, a quick drive into Pz, Teresa dropped me off and parked.

He examined the tooth – I had lost the whole side of it – OLD fillings of amalgam inside a thin shell of tooth, god knows what they were doing back then (my childhood and young adult years.

He repaired the tooth on the spot and included that in the charge

Long term solution is a “crown”, there are other shorter-term solutions but have a risk of failure, as the cancer gets worse a problem like that could be the last straw so fix now.

Not cheap – £800 by the time all the cleaning up of teeth and fitting …, but worth it for peace of mind

Private care very nice, appointment for stage 1 is tomorrow so no waiting!!!

Wed 31-Jul-2019

Work in the morning and then dentist in the afternoon. Had lunch early and managed a bit of a nap before heading off to the dentist.

About an hour in the chair being battered and bashed. Loads of noise, pressure and water – the latter the biggest problem (for me) as I have a bad gag reflex – I gag every morning when I clean my teeth!

Still I survived and temporary crown in place to be replaced by the proper one in three weeks’ time (unless it comes in early).

A couple of fillings identified as needing doing which at “private” rates of £144 each is rather OUCH. We need to try and find a more cost-effective solution, but difficult down here as waiting lists are impossible even for “private at reduced rate”.

Oh well, onwards?

Thu 01-Aug-2019

No idea, I worked, other than that, I have no idea it was a Traumatic week

Fri 02-Aug-2019

Ditto

Postscript

Warwick was tough, because I normally “seem” to cope so well, it’s hard to realise (for me and Teresa) that I am so often near the edge, especially nowadays that it doesn’t take much to push me over the edge.

This week was further proof, the stress of the extra medical intervention (seeing the psychologist and the dentist) was just too much. I can handle the cancer treatment, it’s tough, but I cope, but this peripheral stuff is just too much and I just collapse into floods of tears.

Next week, yet more (unwelcome) interventions, to be followed in subsequent weeks of 4 different appointments to do with the cancer.

I get away VERY lightly compared to some but it remains a stressful business no matter how much I joke and smile and make little of it.

The Bean, Pendeen, 19-Aug-2019

The Eagle has landed, off to Warwick – 20-Jul-2019

Going to bed, Part 1 (see next post for what happens next)

Yes, three weeks late, sorry, this is Warwick Folk Festival Part 1, part 2 will follow shortly

Sat 20-Jul-2019

Spent the morning making permanent the electric fixes I did last weekend to get some of our dead lighting working.

Totally exhausted, nothing else got done.

Do you know what day it is today? May not mean much to you (except for the TV going bonkers over the last few days), I was 14yrs old and sleeping in a tent in the back garden listening to a radio when I heard those words, actually I was sitting around the yellow Formica table that now sits in my upstairs office, it was the “one small step” I heard in the tent.

When I was diagnosed, 21 months ago, I feared I would not make it to the 50th Anniversary. I did, so many of them did not, including 1st man.

I was given 2-3 years, hopefully that is wildly inaccurate in a good direction, but I have had optimism taken away from me because optimism means I plan for a future that I assume I’ll be there for.

Now I live for today, we make some plans for the future, but in my heart, I don’t assume I’ll be there, so if I need it today then today I do it, whether it is altogether sensible or not.

Today is a very important day for me yet the world around me seems almost indifferent to the power of the event. It was always going to be big for me, spaceflight always has been, but this anniversary is much bigger today than it ever would have been.

Our wedding anniversary will be in another 10 days, yet another of those milestones I can no longer take for granted.

I graduate from my PgCert in autism studies in November. On almost every level possible it’s pointless attending. But on one level alone, “fuck you, cancer” it’s worth trying to be there and we will. I’ve written about this before, but when I was planning to do the PgCert, I knew I may not make graduation (still may not), when I booked on for the next two years to complete the MA, I realise that the odds are against me making it, but what’s the point if I don’t try?

Whether you read it here or not, I wonder and worry every day what the point of being here tomorrow is, because if there isn’t one then why go through the treatment and the waiting?

So, I look for reasons to keep going, Teresa and my children are a powerful force, but they aren’t enough because that time will come and that’s all there is (Al Bean, my namesake and the 4th man on the moon asked “is that all there is”). So, for me, the question is, what difference do I make today?

The MA is part of that, these blogs (and their surviving my death) are. Getting your head around this is not easy. Plan B is to bury one’s head in the sand until the day arrives when burying is all there is left. I know that works for many people, it just doesn’t work for me, so I get to “think”.

Sun 21-Jul-2019

Packed Camper Van ready for Warwick – or at least the major packing – included the solar panel (it will be its first outing).

Assembled Teresa’s chipper (for prunings from the garden) for her, she is so enjoying it:

Please note she didn’t like being told to wear leggings nor a flowy skirt and have her hair up. Not Health & Safety conscious :-).

But doing that wiped me out for another day

Mon 22-Jul-2019

Knocked up a new version (version 3) of the Frittata that Teresa did that started us down this Fodmap road. I’ve now removed cheese, or at least I was going to and I did add bacon to compensate, but Teresa managed to find Lactose Free cheese (but still dairy – from Arla same people as do my milk). I find I do like familiar flavours and though the cheese is expensive (about the price of a “organic normal cheddar) it does taste “right” and when so much flavour has been denied to you, all bits are welcome.

Will have that for lunch tomorrow, my taste test nibble today says I may have over done the bacon and it’s too salty – we will see, I am VERY sensitive to too much or too little salt.

Like everything else in my life, I seem to be on a knife edge!

Emailed work about my varying Blood Pressure as there is a “risk” that I could be hit by low BP in the office and “faint”. Seemed like the right thing to do, however it does of course trigger H&S, training (for the first aiders), …, and as a result I couldn’t go in to work Tuesday morning as I usually would.

I know I did the right thing, and I realise I should have expected the reaction as well – but I didn’t. They are a good employer so I needn’t be worried but other employers could use it as a reason to not employ me (on health grounds) which would encourage “untruth’ness” which I hate.

Tue 23-Jul-2019

So, working from home today 🙂 .

Wed 24-Jul-2019

Work plus final van packing, major diarrhoea attack so needed to take loperamide – these attacks are not common nowadays so clearly the new diet works, but they remain no fun at all!

Ordinarily it wasn’t bad enough to justify loperamide, but with an 8hr drive tomorrow, better safe than sorry (boy did I live to regret that!!!)

Thu 25-Jul-2019

Up at 4:30am, Teresa at 5am and we were off at close to 6am. As always, the van looks (and feels when driving) packed to the gills! Part of the problem is that our lovely bed base (4” thick foam divided into six manageable “cushions” just takes up space. However, when stacked it makes a perfect cocoon to protect the solar panel whilst it is in the van, it just takes about 1/3 of our room for carrying stuff – the buggy makes a big dent too!

Stopped at West Cornwall services as normal. I couldn’t eat but did take the cancer drugs and got a flapjack ready to eat in an hours’ time. Cup of tea for me, no coffee for Teresa, she slept all the way to here and expects to go back to sleep again

Next stop Taunton Dean Northbound, a place we always stop. No, Tereasa still asleep, so I keep going and she wakes up some time later so we stopped at Sedgemoor Services – about ½hr up the road. Still nothing happening in the bottom department, mildly concerning but to be expected after loperamide yesterday. Keeping fluid intake up.

The forecast today for Warwick is 34 deg but right now it isn’t hot yet – was positively cold when we left home.

Lunch will be at Warwick services as usual, so cup of tea for hydration and on we go, traffic cooperating.

Arrive at Gloucester – scorching hot, had lunch and a minty tea, replaced 1/3 of the water in the tea with cold water to make it cool enough to drink – in that heat we would have been waiting for ages for it too cool down.

As usually happens Teresa bought some meat sticks, she likes from there and I got a couple of Chorizo ones – last time around we checked they are safe for me to eat (BOY, were we wrong, but not for the obvious reasons – see next week’s blog!)

And on we go, getting to Warwick shortly after 1pm (opening time), the camp site is already pretty busy, I later found out that the gates open sooner but they don’t advertise, it looks like people have worked that out!

Still we found a spot, the heat is awful and not only have they moved where the loos are, the map they supply on arrival with where the services are is wrong and the water location has moved as well – much to Teresa’s annoyance as it was further away and hence further for her to pull the water container. I cannot pull these new (smaller) ones on the buggy, rolling resistance too high with the small wheels..

Still we got everything sorted quickly, the new tent works wonders and we now use a cover for the buggy instead of putting it into the tent which makes more space in there.

There was some cloud as we put the pitch together so not so bad as last year, but still pretty tough. I keep drinking and did so the whole festival and it was certainly passing through but …

In general, I would say that we were disappointed with the organisation of the festival – not only had we had a lot of hassle over getting Teresa’s “carers” ticket, the facilities were poorer. The only disabled loo was by the main marquee – a LONG way from the field we were camped in. In general, the disabled facilities provided by the festival were poor.

Once pitched up we went off for an explore and for Teresa to have a gin. I felt I wanted something close to normal food for tea and since “Moor & Coast” were there with their Whitby Cod, that seemed like a good idea since they did gluten free batter.

Mega expensive and not a lot of fish, deeply unimpressed and felt ripped off even for festival prices.

Oh well, off to the Ceilidh house for the evening concert a Folk Opera by Mick Ryan. Rather unrehearsed and somewhat disorganised but Tereasa felt that added a bit of “folksy” feel to it.

It was a pleasant enough evening but marred for me by three things

1) We were early so they did see me and arranged somewhere for the buggy to go (why can’t they expect a certain number (we later found out they did in the main marquee, but to not do so in any other venue was poor).

However, we were put at the back of the venue – why is it that disabled people are put “out of the way”?

2) I don’t know what the sound engineer for that building was doing, but it wasn’t his job as far as I was concerned. The sound in that building remained poor all festival.

As is often the case there is an obsession with low frequencies and in that room, turning them up just caused “booming” and distortion. I would have thought that was easily remedied (and I am not completely ignorant in such things).

As it turns out, this was a festival wide problem and in totally different venues (a marquee with no walls and a building designed as a performance venue) the same problem persists. I know the mixers were up to the job so it was the people driving them and the sound equipment being used and that’s just not good enough.

Folk festivals are NOT rock festivals, loud MUST be blended with audibility – it’s all about the songs for goodness sakes.

Oh well, rant over

3) The air conditioning wasn’t working – really, they didn’t think that it might get warm on warmest day of the year? Really? I think this was down to the school not the festival, but even so, …

And so, to bed and crashed!

Many trips to the loo for a wee during the night so well hydrated, however no signs of poo, not worrying yet, losing a day is not unusual after Loperamide, but that’s usually the case when I’ve had to take two, it was only one on Wednesday.

Fri 26-Jul-2019

Rained overnight so a bit of padding in the damp for those nightly loo trips, but not too bad this morning however although I had a lie in till around 8am, for Teresa it was 10:30 before she stirred.

So, washing, coffee, general getting up stuff and then off to the festival, trying the only disabled loo on the way, more in hope than expectation, nothing doing, …

I/we (Teresa came and went) went to a lunchtime concert in the same Ceilidh house as last night, with The Magpies and Trials of Cato. Now

1) Aircon still not working!

2) Sound still rubbish – we were to see the Magpies on the last night in the main arena – that had its own sound problems (including the ubiquitous bass issues) but the difference in the intelligibility of the voices was like chalk and cheese, something was definitely not right in this venue.

Trials of Cato were excellent. We first heard them at Gower last year and liked them then too.

There was a 1hr session by a band called Skerryvore for an hour in the Ceilidh house at 6pm, they were different but fun, much louder than the other gigs and of course the “turn it up to 11” approach worked much better with them, but still – hearing the voices was a challenge.

For the first time I wore my noise cancelling headphones – they take out a lot of the low frequencies and whilst they dull the higher frequencies (voices) the voices were much clearer without all the “mud” from the lower frequencies.

For the evening we went to the Bridge House Theatre to see more acoustic acts and things change a bit

1) Disabled access even worse, you end up getting “squeezed” in and they seem somewhat surprised to see you! For an expensive public school, you’d think they would make better disabled access?

2) The sound was gentle re-enforcement and SO much better, first time you could easily hear what the artists were singing. So, it can be done! I don’t recall who were on, rather curates’ egg for me but finished off by John Kirkpatrick who has oodles of stage presence and skill.

Even more exhausted than yesterday (if that’s possible) however once back at the van things fell apart rapidly and it was well gone 2:30am before we got any sleep, more on that in next week’s blog – sorry for the cliff hanger but it all occurred after midnight and so by the rules of blog …

Postscript

I understand, most of the time folk music is unamplified and there are two sorts of amplification

1) Sound re-enforcement, adding just enough amplification so everyone can hear but retaining the acoustic nature of the performance

2) Loud for fold rock type acts

I’m fine with both (there is also a whole mire of in between too but we’ll skip over that). I’m always up for some loud exciting music, plenty of bass – go for it. My old ears require me to wear headphones to protect them, but yes.

However, I don’t know what the sound engineers were doing but they seemed to think that acoustic performances needed the bass end so loud it resonated and boomed over the audience. They also failed to ensure clarity of voices so you could make out what was being sung.

I hesitate to use the word but I have to question competence. It was the worst I have found it at Warwick this year, but not by a lot, last year they didn’t have a marquee and all the concerts are in the big hall they usually use for Ceilidhs and last year the sound in here (when it was the main venue) was as bad as this year (when it was a minor venue), and I am sure it’s not just down to the venue, after all turning down the overall volume would help almost all their issues, but the desire for “loud” seems to ingrained.

Audio matters to me – it’s my job as well as my passion and I don’t like to see (hear!) it done badly.

As for poo, oh boy we are only just getting started!

The Bean, Pendeen, 28-Jul-2019