Month: September 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