Tag: Letter from the North

Outing with the wheelchair, MA crash looms ever closer and what does LGBTQI+ mean? – 19-Oct-2019

Sorry, no photos, all this mucking around with phones means Teresa and I haven’t consolidated yet, we will, … 

Sat 19-Oct-2019 

Teresa appeared downstairs at 2am, in tears. No obvious reason, but we cannot avoid the incredible stress we are both under. It does come out, but it’s usually just us that know, to the outside world all is well. Thank goodness we can share our grief and distress with each other, I know some other families are less able to share their feelings, especially about life limiting illness, in the same way.  

I suspect the grief from Sheffield Hallam regarding the MA is the straw for both our backs at the moment. 

We went shopping in Truro, using the wheelchair – quite different from mobility scooter in terms of manoeuvrability – not perfect because shops and people don’t understand, but better. 

It was my first-time shopping since the spring (or earlier), so nice to not be a total hermit. 

One of the things I wanted to do is replace my phone – way over 5 years old and been on SIM only, long out of contract. 

We went into Carphone warehouse and I found a Samsung S40 that is only £25 contract instead of £12.50 (both figures approx.) SIM only. So, ordered one, in Coral (of course). By the time I had started the order process, Teresa decided she would too (same phone and colour – how could she not) and the assistant processed both our orders in parallel –  

Hers upgraded, old phone lost number, new phone got old number, just like it’s supposed to. 

Mine didn’t, it really didn’t, it neither changed number nor was my contract updated, this resulted in lack of sleep. Being autistic, I never handle things not going the way expected well, at the moment I am on such on edge that it only takes stupid little things to tip me over. Yes, of course it will get sorted, but I need to not have to spend the time getting it sorted! 

This is the day that I first “complained” (in a really nice way, Teresa made sure it was “nice”) about what was happening with respect to my learning agreement at SHU. 

Sun 20-Oct-2019 

Rang EE 8am sorry no contract, can’t change phone number speak to Carphone Warehouse 

Spoke to Carphone Warehouse 10am, told me they would “push through” contract change. Also told me to ring EE and as them to do a “SIM Swap”, which is the process of moving old SIM phone number to new SIM. So, I did, told them the SIM number of new SIM and that was that. What was scary is I could have told them ANY SIM number and that SIM and phone would have my number. Remember, at this stage they have no info at all about my new phone, JUST the SIM number – which was originally a PAYG SIM! 

Why the F*** couldn’t EE have done it this morning. By Monday morning it had completed. The phone responds to the new number but still thinks it has the wrong one – hey ho! 

I wrote umpteen drafts of concern about what was happening in year 2 of the autism MA, I even “slept on it”, as much as I ever sleep 

Mon 21-Oct-2019 

Final drafts of list of my concerns about the MA sent to all three tutors. 

Got replies from two talking about “investigating and thinking” 

Tue 22-Oct2019 

Decided that, from those responses I needed to be more specific and sent a much clearer Email than the first, in the hope that the course tutor would understand when they got around to reading my email. 

I was in the office today 

I was standing in reception and noticed a bruise on my right arm from below (closer to elbow) the first puncture from last week’s venesection to above (close to fingers) the last punctures on that arm – about 6” or so and covering all the outside of the arm (½ the circumference) 

I panicked! 

Eventually I realised that a blood vessel had probably re-opened, not that morning but previously and the bruise is the result.  

I rang oncology nurses just in case, probably a stupid panic but, …, they weren’t concerned but I was unsettled for the rest of the day 

A camera not really capture the effect so no photos, sorry, would have looked great 🙂  

Next week in the office, I will be doing a walkthrough (sic) of my wheel chair in the to see what problems there are. My office is a fair distance from the green room (canteen) and reception. I don’t do phones so “walk” everywhere and I am finding that by 11am I am too tired to keep going. I found in Sheffield last week that if I use the wheelchair, I have more mental energy to keep going. 

Hate it, I feel that I am “lazy” because I can walk, but … 

So, yes, any workplace should make disabled access better, but how many do – not so many based on my experiences of workplaces (e.g. Sheffield Hallam University). I am in the office some Tuesday mornings and they are looking at automatic opening doors, extra ramps by fire exits, height of facilities in the green room. 

I am not asking them too, it’s just automatic. This is the same company that has bent over backwards to be supportive of me as I deal with the consequences of the accident and the cancer. 

They really are a beacon. 

Wed 23-Oct2019 

The bruise is fading a little 

On a totally different topic, but one that is a constant source of frustration to me: 

I struggle with the whole “lets wrap all aspects of sexual and gender diversity into one term” and treat them as a homogenous collective. Often that means people talk LGBQT… but actually mean Gay/Lesbian or Trans (gender/sexual) but don’t actually understand they are two very different things!  

Anyway, there seems to be a consensus as to what the letters all mean and I found this to be quite helpful: 

L- Lesbian 

A lesbian is anyone who identifies as a woman, and is attracted to other women 

G- Gay 

Gay is relevant for anyone who identifies as a man, and is attracted to other men. Gay can also be an umbrella term for anyone who identifies as homosexual. 

B- Bisexual 

Bisexual is anyone who is attracted to both men and women, this can also encompass being Pansexual, which describes people who are attracted to people regardless of their sex or gender. While bisexuals are attracted to both men and women, pansexuals are attracted to “people” and don’t see gender or sex as a defining factor. 

T- Trans 

Trans is actually an umbrella term for those who are transsexual or transgender. Exact definitions of these terms vary, but it is generally accepted that transsexual refers to a person’s biological “sex” so is applied to those who have had, or desire gender affirmative surgery, whereas transgender is about someone’s gender, and so one can identify as either gender regardless of physicality 

Q- Queer/ Questioning 

This is also generally used in terms of gender- many people would use this term to describe themselves, including those who identify as both genders, neither gender, or parts of each. It should be noted that although the word has now been reclaimed by the queer community, “queer” used to be used as a derogatory term, and some people may still find it insensitive. 

I – Intersex 

Intersex is another umbrella term, for those who have variations in biological sex characteristics that mean they don’t fit the exact biological definition of “male” or “female”. A lot of people would argue that these terms are reductive and unnecessary anyway, and many intersex people identify as one gender or other regardless of variations. 

A- Asexual 

Asexual is when someone experiences no sexual attraction to anyone else (there are other terms for those who only feel a very small amount). Asexuality has only recently started to be discussed and understood in the mainstream press. It’s also important to understand that Asexual people can feel romantic attraction (although some don’t), the term only refers to attraction of a sexual nature. 

+ 

+ refers to any groups of people who don’t feel that they fit into any of these categories, or fit into more than one. Identity is an enormous spectrum, and everyone would really struggle to remember the acronym if it was 44536786345 letters long. 

It’s important to remember that you can’t ever really “learn” all identities and preferences, everyone is different and has their own understanding of who they are.  

Thu 24-Oct2019 

Got reply from course leader, I wasn’t happy, it was perfectly reasonable and logical and was based on their discussions with the other two members of the team and reading my emails. 

Conclusion, in broad-brush strokes, in some cases I am making a mountain out of a molehill and in others I have unreasonable expectation. 

There was no attempt to check their understanding, ask me anything, even request a face to face (the only way to truly interact with me) 

I replied and said so, so that it was clear what I “heard” even if that wasn’t what they meant (and said so, it wasn’t an accusation, it was “I don’t know if this is what you meant, but this is what I heard”) 

Fri 25-Oct2019 

Tutor doesn’t work Fridays so have to wait until Monday at the earliest, blah! 

Postscript 

The train wreck that is year 2 of the Autism MA is happenign in slow motion but it clearly happening. 

A “this is not what we meant to happen can we sit down and talk” and that should have been problem solved. But no, we can talk about autism. It’s just “talking the talk” is easy, “walking the walk”, not so much. 

I suspect I have somehow touched a raw nerve for the course tutor and the reaction is not “typical”. I’d like to believe that, but it doesn’t take much to say so, talk and move on, does it? 

I am not happy – did you guess? 

The Bean, Pendeen10Nov-2019 

My autism MA continues to unravel, Jane (my cat) is dying, a shitty week – 12-Oct-2019

The scratches in that picture of Jane where courtesy of her and 6 weeks later only just fading, that’s how slow healing is for me!

Sat 12-Oct-2019

About a week ago Teresa made me a meal that used the proverbial chicken, potato and a sauce made using cream a meal she often did pre diarrhoea challenges). I told her that I felt that there wasn’t enough of it (cream) to trigger lactose intolerant diarrhoea. Boy was I wrong, 2 tries of it and two explosions. So, I “washed” the chicken (yes, I really did) and tried an alternative, – my preferred standby – a sort of fry-up, but the potatoes just tasted odd and so I gave up on that.

Kept the Chicken for Mr Biggles (he put up with it, but he didn’t really like the 3rd hand chicken) and decided to make a curry I often make. Usually chicken I decided to try beef (minced), Teresa persuaded me lamb would be more tasty. Made my usual (mega) quantities. It was disgusting, even Teresa agreed. Straight in the bin it went.

Getting desperate now to find a meal I haven’t had for a while that I can eat and enjoy the taste.

So, I made my version of chilli con carne. It has no onion; the only garlic is the garlic oil used to brown the minced beef! It has no “beans” in it as they are all Fodmap negative, but I could have chickpeas so long as not too many, tinned in water and well rinsed. The water sucks out the non-Fodmap stuff and the canning process assists that.

Phew, it worked, I have food!

Just in time for tea on the go on my way up to Sheffield for MA, Year 2, Day 1 on Monday.

Rather trepidatious as to how the whole “learning agreement” issue will be dealt with.

Sun 13-Oct-2019

Up to Sheffield, was going to leave late afternoon, early evening and sleep on the way. But after lunch I realised that I wouldn’t sleep for my afternoon nap and so best thing was to get packed and away.

So, chilli in a thermos for tea later. Lunch and breakfasts in the fridge in the van. Duvet and pillow and away I go.

Some hassle with the Satnav – it needs careful programming as the default route to the building I’m going to Aspect House. Fails as it’s on a one-way street and the route joins after the car park and entrance!

So, I needed to give the satnav a couple of way points (Street names) to help it get it right. I had of course “walked” the route using street view dozens of times so I knew what I was doing, but ….

The Satnav can be easily programmed from my phone but needs Internet access. Fine in the house, not at the car and between the two points it forgets it’s route.

In the end I programmed it for Tibshelf (the services before Sheffield that I’m aiming for) and wrote on paper the way points so I could fix it later on.

Wasted over half an hour faffing with that.

Still away by 2:45pm ish

Excellent journey, stories from audible passed the time. Roads OK. Was mainly listening to Ice Station Zebra by Alistair Maclean – first read as a child, MANY years ago.

Stopped for cup of tea and loo at Exeter. Tea at Gloucester Services

Arrived Tibshelf around 10:30pm

Went in to pay for car park so could sleep overnight in car, saves hotel bills – not Teresa’s cup of tea but just me and I used to do that all the time travelling between Cornwall and Cambridge.

Went in – all shops closed apart from McDonald’s and they don’t have tills now, you select and pay away from the counter.

Hmmm, went outside and checked and sign says pay at restaurant, well McDonald’s a restaurant????

Slept OK but cold, forgot coat, after a loo trip in the early hours dug out my fleece and a thin blanket Teresa uses to keep her legs warm (I like it cool in the car when I drive, she doesn’t!). Took ages to warm up, but I did.

Mon 14-Oct-2019

Hmm, my Sheffield experience did not go so well.

This is a summary from an Email I sent to SHU:

Support worker arrangements ran like clockwork, they did a good job.

The building itself (Aspect Court) had a number of disabled unfriendly issues and in general there was never any one on the main desk to sort things – one of the students had to make 2 phone calls to facilities to get some loo roll organised!

  • The lifts are difficult to access in a motorised wheelchair. I had to remove the foot rests and push my knees hard against the wall to fit!
  • The gates to the car park were locked, without a key (got sorted after a while),
  • The pavement outside the building was not useable (so I had to travel along the middle of the road to get between the building and my car, some warning/ coned off access would have been nice, I was vulnerable being a wheelchair in the middle of a road with cars on it!
  • Don’t SHU have a policy of providing water points in their buildings? We couldn’t find one in Aspect Court.
  • I understand that fire doors may need stiff springs, however for those of us with weak shoulders, the doors can be very hard to open and hold open while in a wheelchair.
  • In the classroom I had to ask people in the class to open the door for me. In the loo I could manage but needed to set my chair on “fast” when half way thru the door so I could get past it before it slammed into me and the chair!  This is a problem in many places (not just SHU) but this building seemed more problematic than Charles St.
  • VERY importantly, there is no fire refuge (for when the lifts are out of action during a fire) on the 3rd floor at least). It looks like the area outside the lifts is “supposed” to be one but since it includes a staircase (also known as a chimney), I would NOT sit there waiting for rescue in case of fire!

I was ignored by the tutors with regard to the learning agreement neither the temporary or actual course leader spoke to me about it.

A few students spoke to me, most ignored me and on an autism course I would expect everyone there to be aware that initiating conversation can be more than difficult for autistics. Some places (seemingly more autism aware) have badges that say (colour coded) “Don’t talk to me”, “I don’t mind if you talk to me”, “please talk to me”. Not on this course and apparently not the policy of the autism aware tutors

Also, some students didn’t know when to stop “having their say” even if it was totally off topic. Of course, it happens, but I think it’s the tutor’s job to gently cut it short – apparently no it isn’t.

Safe to say, I did NOT have a good day

Journey home was OK, but I had messages from Teresa that Jane (who’d been to the vet) had kidney disease, fatal for cats. I only ever read messages before I left and when I stopped at Gloucester services (no using phone when driving!!!)

Jane was my 1st cat, not great news.

Had a bit (hour and a half or so) of a sleep at Gloucester services and then a quick stop at Exeter.

Tue 15-Oct-2019

Home 3:30am,

Facebook post on yesterday and particularly the fun we had today

The vampire takes a nibble!

Monday was 1st day school of the MA Autism, Year 2. In Sheffield. So, more details in the relevant blog (this one!), but drove up Sunday afternoon/evening. Drove back Mon evening/night. Got home 3:30am this morning.

As is usual I got dehydrated on the journey, I shouldn’t, but stopping every hour for the loo is just tedious, …, This may be relevant.

This afternoon (yes same day I got home) I had a venesection – they take out 1pt of blood to stop it getting too thick and sticky.

Four tries, four times needle in a vein, four times blood doesn’t flow or stops flowing. Gave up, going back in a fortnight.

They do the venesection because my blood gets too thick and sticky. The blood doesn’t flow easily because … well you see the catch 22! However, dehydration also causes thick and sticky, so even though I was sure I had re-hydrated, maybe I hadn’t

Blah, 4 puncture wounds is no fun for me or the nurse. Getting a needle in right is about “feel”, four failures makes you question your feel, tough for both of us.

Remember me worrying when my weight hit 15st 2lb and dropping? I had been holding it around 15st 3/4/5ib. This morning 14st 12lb.

Suspect the dehydration has something to say about that too.

Looks like a lot more peeing on my long car journeys, this cancer just keeps finding new indignities for me to learn to smile through.

Oh, and just to spite things, Jane (my oldest cat) has been diagnosed with renal failure (not cancer, just failure, but normally fatal all the same).

For goodness sake life, do you have to rub my noise in it

Bean

This is the letter re Jane I sent my children, dealing with the whole death issue. They have both left home now but their formative (teenage) years were spent with Jane and Burlington:

You’ve both heard from Teresa about Jane and she’s tried to answer your questions.

Whilst I am not recovered from travel to Sheffield and yesterdays failed venesection, I am alert enough to try and explain this in my language – I will try and cover everything I can think of, so it will be the usual Dad essay!

1) Jane changed some months back (before Biggles) and started being more affectionate – I wondered why and was “suspicious”

2) When Biggles arrived, I got very worried about black poo in the litter tray and Jane had been spending days just sitting on the UPS so I asked David (our Vet) to look at her. He felt she seemed OK and didn’t do any blood tests and said “watch and wait”.

Since then, Jane has kept sitting on my lap (usually something she avoids) – because of Biggles we suspect and sleeping on the bed with me all night every night.

However, she is also currently mega sprightly and running around looking as fit as ever.

As son said when he came down, Jane is getting skinnier and whilst is not really any different to then, her fur is not the same, it doesn’t lie down nicely and sticks up in clumps – best way I can describe it is that she looks “scruffy”.

She has been eating more and more.

For different reasons Teresa and I felt it was time for David (vet) to give her a better look over.

She had a blood test done – which was actually a number of tests for all sorts of conditions that “older” cats get. He was sure it was an overactive thyroid, but it turns out to be kidney failure.

This is very common in older cats – it is often what kills them. It is incurable in cats (humans can have dialysis but cats can’t).

It is always fatal.

There are drugs that can slow it down – but how much is cat dependent.

We have no idea how long she has had this problem; how aggressive it is and hence no idea “how long”. The second blood test may indicate how fast (if at all) she is deteriorating and hence provide a better indication. We will, of course, let you know the results when we get them.

However, just like with me, nobody really knows, it will be what it will be and all we can do is cross our fingers that it’s longer rather than shorter.

That said, the moment Jane is showing signs of distress from it then we will have her put down, neither Teresa or I believe any pet should suffer just to prolong their life, not even for a day.

You will need to trust us to do the right thing if/when the time comes. If it happens, it will happen fast – ring the vet, go there and done, no time for anyone to visit. With Gus it was prob an hour from making the decision until it was over.

Yes of course we WILL tell you both but there’s nothing you can do.

Hopefully Jane will just die in her sleep, but as I said we will not permit her to suffer, so fingers crossed.

So, we have no idea how long but the best we can all hope for is months.

However, you have to understand it could happen this afternoon and we can’t give you any warning.

It’s shit, but it is the way it is.

I hate having to think about and explain this as I know it’s also my fate, but that won’t stop us taking the best care of Jane and making sure she doesn’t suffer. That’s all we can do.

Daughter, you need to be aware that whilst Burli seems OK, his fur is also starting to get that same “scruffy” look. We aren’t worried yet but you need to be aware. Jane and Burli (and Spook) are all the same age within a few months of each other.

I hope that answers any/all questions

Oh, and since son asked. Hide and Seek were buried (by me) up in the trees in Hill Row (we had a lot of space).

But just like it will be with me (and Teresa), Jane will be cremated and scattered – arranged by the vet. We will not know where. That’s how it was with Tyler, Gus and Ferret.

Oh, and son, I wasn’t here when Ferret died, I had a phone call from Teresa and the Vet while I was at work in Cambridge saying that his time had come and I agreed with his decision to put him down and that was that. So, I do understand how it feels to not be able to be there, but it’s part of how it is to have them. To prolong Ferret’s suffering for another day while I tried to get back home would be for me not him.

Not going to happen, we love our cats too much to do that to them.

Love

Dab

Given that you could almost have changed Jane to Bean, that was a TOUGH letter to write!!!

Wed 16-Oct-2019

At work

Thu 17-Oct-2019

FB posting for the day:

Bit of a general update since blogs are a long way behind reality. Jane (my cat) is eating like crazy but still all skin and bone. It will be another 2 weeks before her next blood test and we find out how bad the kidney disease is, i.e. how long she has

Yesterday I sent a long email to my two children, now left home, but who grew up with Jane (and Burlington) explaining what was happening, what happens “at the end”, that Teresa and I refuse to extend suffering by a moment for the benefit of humans so the end could happen VERY quickly, cremation …

Of course, that letter is made far more poignant as it also addresses what happens to me as the cancer advances (and advance it will), so I am also talking to them about my own death – tough, but necessary stuff and plenty of tears.

Last year on the MA I found it very hard to feel connected to almost everyone on the course, especially since we spend so much time remote from each other. I thought our FB group would be the place where we communicated. It wasn’t. I tried asking why but never got an answer that made sense.

We are studying the same subject, I feel we are all interested in the subject, but the level of engagement with others on the course seems minimal.

I had higher hopes for this year (2nd year of MA), as there are a number of different “cohorts” merging together to make up year 2.

However, it seems that I have the same problem. I have no idea why, that’s always my problem. I want to interact with others and talk about the course (in detail) but nobody else seems to want to. I don’t know if that’s just with me or with anyone. But it does leave me feeling very isolated.

Being autistic is isolating, being in a wheelchair is isolating (you’d be surprised how much), living 10hrs away from the University is isolating, dying is isolating (people don’t know how to talk to you).

Frustratingly the nicest thing that can happen for me as I navigate my “end of life” is not to feel isolated and yet I feel more isolated now than I ever did. In the past I could make the effort to reach out to others, not good at it, but I kept trying, I now need all my energy to do what I need to do and need others to reach out to me. They don’t.

Hey ho, maybe the fact that I am happy to talk about anything and am pretty blunt (straightforward) saying what I think and feel (without much of a filter) makes me scary! I know some people don’t read my blog because the cancer/dying bits are too hard for them to read, as can be the sections on poo.

Experiencing it is pretty scary too!

Oh well I can do this MA on my own, it’s just so disappointing I am going to have to as it is probably the last “thing” I will do. Maudlin, NO, honest Yes, I don’t know how to lie (even little white ones) without a lot of effort and I refuse to do that, especially now even though I know it makes others uncomfortable and probably drives them further away. Catch 22.

Digestive tract still well locked up, talk about tightropes

Getting on with work but very tired

Fri 18-Oct-2019

Still very tired,

Come to conclusion that staying on the MA is not healthy for me.

We are planning to go into Truro tomorrow for some shopping – something we haven’t done for a long time. Be the first real outing for the wheelchair.

Postscript

If I end up leaving this course, I shall be very angry.

[Update, I am leaving and I am angry 🙁 ]

The Bean, Pendeen, 03-Nov-2019

The beginning of the end for my autism MA – 05-Oct-2019

Sat 05-Oct-2019

Hmmm, seems I cannot get to my blog at the moment, raised ticket at hosting provider and wait …

Made (usual) pesto pasta – in my case “pesto” is just basil and (garlic) oil, add chicken, add dose of Devils Powder (asafoetida and fenugreek mix) and pasta, decent amount of tabasco and gazillions of (low fat) Hellman’s. Simples!

Not everyone’s cup of tea but works for me and is Fodmap friendly. The chicken is de-boned thighs – not as dry as breast of chicken and baked in oven with garlic oil.

Why garlic oil? Well my diet precludes onion and garlic (hence using asafoetida). However, the nasty in garlic is NOT soluble in oil so garlic oil gets the flavour but not the nasty – yeah, I love garlic!

Once done, I was exhausted and that was me for the day

Later on, I was working on MA stuff – reading and listening/watching

Sun 06-Oct-2019

Hmmm, my Hosting supplier moved my Blogs and although I think they are visible, I cannot get admin access to post updates at the moment. So, it’s not me being even more slow than usual, it’s a technical glitch, which I will get sorted as soon as I can, …

Well, it turns out (support only took 36 hours to respond) that yes, they moved my domains to a new (faster?) system, but they didn’t change the name servers to the new ones they want me to use. Why? I now have to manually change it for each one – blah! I’ll try and get the next blog out tomorrow evening if I can

Got our Websites back.

Ditto on the MA stuff – it takes me a LONG time to get through course material as I have to re-read and re-watch many times before I really absorb it.

Mon 07-Oct-2019

Not sure what happened today!

Tue 08-Oct2019

Office very tired left early – this is becoming the norm and concerning.

Wed 09-Oct2019

Starting to get very stressed. My learning agreement with Sheffield Hallam University says that I get copies of presentations five days before they are given. Despite it not being written, that apparently includes weekend. Ok, but so far, I only have two out of four and no idea when or even if the missing two will appear.

Sounds like a trivial issue, but as you will see in future blogs it isn’t.

Thu 10-Oct2019

No sleep from 2am, rubbish before midnight. All about how much can I trust the people delivering the course to deliver on the learning agreement? I’ve tried trusting people too often, now I require evidence and on the basis of what I’ve seen so far, I am distressed – hence lack of sleep.

Presentations are now available but I’m still twitchy as no explanation or apology. It’s like it’s not a problem (despite the fact I made it very clear it was for me)

As an autistic, dyslexic, I really do need time to process a power point before I see it presented. I have difficulty (i.e. can’t) listen and read. Reading means I miss all the extra words in the talking. Processing the talking without a framework from the slides – I end up having to replay the recording (I am allowed to make) at home and listen to the whole lecture again, this time having read the slides – very time consuming and I can’t participate in the flow of the sessions.

So yes, it really does make a difference – hence learning agreement that says 5 days and my requirement it’s kept

Sick around tea time – heavy retching and sick bowl but just phlegm. Took anti-nausea drugs but they can “loosen” up those bowels and yup, into bed around 8am and off we go and severe diarrhoea

Perfect end to a perfect day, except it wasn’t …

Fri 11-Oct2019

About 2:30am Teresa came downstairs for some Ibuprofen. Biggles had been on the bed with me. I rolled over, Jane came on the bed and suddenly I felt wet – yup Jane was weeing on the bed – it is something she does, we think it’s because she was annoyed Biggles had been there and also, I was not laying how she wanted me to (in hindsight although she has that tendency anyway, the kidney disease affects bladder for them, …).

Anyway, I enlisted Teresa’s help and we stripped and changed the bed, duvet included. Oh, what a happy pair we were at 3am!!!

Unacceptable’ delays in diagnosing secondary breast cancer

Cancer is never cured, once it’s struck there will always be a risk it will strike again. We must remain vigilant even when “cured”. I’m fortunate in a way, I know I’m incurable I will never face that “oh no” moment (well apart from the time I was diagnosed but we all get that moment.

Postscript

The incident with Jane and wee did add to the list of concerns we had and subsequent trip to the vet confirmed it, however more on that in later blogs.

Now there are two of us with problematic kidneys, however that hasn’t happened yet in the chronology of these blogs, I’m just so far behind writing them up.

Issues with the MA are just starting to brew, at the time of writing I think “it’s all over”, we shall see.

The Bean, Pendeen, 27-Oct2019

Blasted virus and a day in Sheffield 28-Sep-2019

Sat 28-Sep-2019

At a hotel in Sheffield city centre before the intro day for the MA later today.

Not a great night for sleep, Teresa and I have different needs – I need the TV on in the background, the light from it disturbs her sleep – one of the main reasons we sleep separately now 🙁 . Eventually I put a rubbish book on audible and it sort of worked.

Course was OK but tiring, wheelchair did sterling service

Digestive track loosened up overnight and during the day and I took Loperamide before we left to keep things quiet while driving!

Left around 4pm, traffic horrendous until out of Sheffield and then fine.

Rain came and went; it always does when we leave Sheffield!

Then Gloucester – something to eat, took drugs for usual stuff and then painkillers due to muscle and joint pain from driving Teresa’s car (I know there is a risk of BP being pushed up by the anti-inflammatory, but …)

As we drove, Teresa tried to sleep and the heavens opened.

It was grim driving but OK. South of Bristol over the Avon bridge I was in lane 3 of 4 (so much traffic) and found I had slowed so much because of the rain that all the lunatics intent on aquaplaning instead of driving were flashing me to get out of way so they could drive stupid fast. Hard to see in mirrors if someone inside of me was undertaking, also mega stupid, but that’s so many drivers now – invulnerable in their little tin boxes until they kill someone (sorry then it’s the other cars fault not theirs).

So, I signalled and slowly moved over and eventually made it to the inside lane and pockled along at 45MPH. Bad all the way. Felt more tired than expected.

Stopped at Exeter and set timer for 1hr 15min, wrapped myself in a duvet, grabbed a pillow and woke up one minute early. Then quick loo and coffee and the last bit.

I have a rule when driving at night (or any other time nowadays. If I feel tired, stop, sleep, doesn’t matter how logn journey takes so long as I get there safe. So, always duvet and pillows in the car. Golden rule – one “head nod” and stop next services and sleep no discussion or debate.

Felt much better and more focussed on driving. Rain still variable, …

Got home around 1:30am and as soon as engine off I felt awful.

Got to house and asked for “sick bowl”, I managed not to but close. Checked blood pressure and through roof and so had to take some extra BP meds – caffeine plus anti-inflammatory. Need to watch that combo.

Sun 29-Sep-2019

Got up around 7:30am and just feel very tired and run down. Very nauseous so took strong anti-nausea drug, it will push my body towards constipation, but that’s OK for now.

I feel awful, I don’t understand why!!!

Teresa always tells me that I always say “I feel awful, I can’t think why” and then points out what I’ve just done – Like drive to Sheffield, a day at the University, drive home in less than 48hrs.

It’s clear that whatever virus bug hit Teresa with being sick last week is what I’ve got on top of normal exhaustion from travelling. Have spent the day sitting in my dressing gown under a duvet with the fire on!

Oh, and a LOT of sleeping

Yup the Loperamide on Saturday before we left plus Ondansetron (anti-nausea) this morning has added up and my body is on strike

Mon 30-Sep-2019

Doing a bit of work, but not a lot is going to be going on

Still very tired

Added a small amount of broccoli to my tea, just the florets, no stalks so Fodmap safe, but not to my body, seemed OK when I went to bed and normal poo, After an hour in bed, a run to the loo and “whoosh”

Tue 01-Oct2019

Hmmm, my digestive track is still somewhat wild, the nausea is back but took the non-constipatory type of anti-nausea drug (more diarrhoea causing but that’s easier to control), …

Wed 02-Oct2019

Just dragging myself through the day, work is about all I can do

Thu 03-Oct2019

Just dragging myself through the day, work is about all I can do

Fri 04-Oct2019

Teresa and I took Biggles in for 2nd Felv (Feline leukaemia) injection and microchip – he didn’t care, then onto Sainsburys where Teresa did some basic shopping and I sat with Biggles (he stayed in his basket of course). Cannot leave an animal in the car, especially when it got hot v.quickly when the sun came out

We both got home exhausted but job done and left the weekend clear

I don’t recall all the timing but there has been some low-level SHU (Sheffield Hallam University – MA Autism, Year 2) sorting out of stuff.

I need a “carer” to help me unload the wheelchair (and reload it) and get into the building in a weeks’ time when I will be driving up to SHU on my own for the first time. Teresa hates me doing this, but I’m trying to give her more time to do Teresa stuff, plus there will come a time when I cannot do the drive on my own and that’s when I will need her more. So long as I can be (semi) independent it’s a good thing.

The University provides this service for free!

Similarly sorting out parking permit (disabled for free)

The Module site went live (I think it was) today and so a lot of effort to start to absorb what is going to be happening. I have to read and reread information dozens of times to actually understand (process) it, so it’s going to be a long weekend!

Postscript

Whatever the virus was, it wiped us both out completely. Teresa was often sick, I just got nauseous and took drugs. She got tired, I got totally wiped out with fatigue, but it’s been tough for both of us. Still need to get flu jab, will sort mine out when do next blood test – which I must remember to get done!

The Bean, Pendeen, 23-Oct2019

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