Month: June 2018

Writing Without Words

As part of Penzance Literary Festival, I will be presenting a session on the trials and tribulations of writing a blog. It will be a bit different to the usual sort of Litfest presentation because I can’t really write; I can throw words onto the page, but they don’t make sense without a lot of editing and Teresa and I plan to talk about that process, and the unusual wiring in my brain that lies behind this. 

My writing process and what I write about are intimately tied together, they are inseparable. So, the talk will be as much about living with cancer, autism and gender as it is about writing. Of course, me being me, the talk could go anywhere, because my brain doesn’t really understand the concept of “staying on topic”. 

So, just to whet your appetite, the last eight months in a few words, well, a few for me. 


This time last year Teresa and I were looking forward to going to the Warwick Folk Festival, a mainstay in our festival calendar. I was in a full-time job that I loved, I was finally living in Cornwall, and we were both looking forward to our future together. 

How life changes, today we are still looking forward to Warwick Folk Festival, though the tickets are now half the price of last year’s because Teresa goes free as my carer. I am still in a full-time job that I love, but I need to work from home four days a week, only going into the office one morning a week, when I can. 

Yesterday I had my regular three-month CT scan. Today I am recovering from my body’s reaction to the contrast injected when they do the scan. For the next week we will be on tenterhooks waiting to find out whether the cancer is better, worse or the same as it was three months ago. 

Some of you already know this, but for those of you who are new to my story, our life was turned on its head last October by a traffic accident. Someone “driving without due care and attention” destroyed my Landrover, sending me off in an ambulance to casualty. There is an argument that I should thank him for the broken ribs, smashed up collarbone and other injuries, his actions may well have extended my life! I am grateful for that, but I am not at all grateful for the damage and ongoing pain I have to deal with. 

When they X-rayed my collarbone, the Casualty Consultant saw “something”. He wasn’t satisfied so did another X-ray and then a CT Scan; within a few hours of arriving in Casualty that Friday morning, he sat down and talked to us. The broken bones were of no concern to him, they were normal and easy to deal with. What was of concern was that he’d seen a mass on my left kidney as well as enlarged lymph nodes in my lungs, near my spine and a whopping great big one in my shoulder an inch or so away from the broken collar bone; that was the shadow he spotted in the first X-Ray. 

He didn’t use the word CANCER, but there was no doubt that was what I had, and that it had spread, and so was serious and my life was likely to be shortened, by how much we didn’t know. 

I’m a realist, chances are that if it had spread we were talking a few years if we were lucky, and so time to get my affairs in order. 

As part of that process, since few people seem to talk about cancer and as I’d been writing a blog on being autistic and non-binary gendered, I felt that the one thing I could do was to openly document my experience of this miserable disease in the hope that it might help at least one person understand what was happening to them and find the words they were too frightened to look for on their own. 

So, the blog was born that day – 27th October 2017. I had to dictate the first few entries to Teresa because I had no use of my right arm then, and minimal use for the next few months.  

Indeed, in the early days our main concern was trying to cope with my injuries, the cancer was sitting there like the iceberg it had been before we knew about it, submerged and out of sight, silent and very deadly. 

More CT Scans, a biopsy and nearly six weeks later we got to see an Oncologist who confirmed Metastatic Renal Cancer. Too late for surgery, Chemotherapy doesn’t work on this cancer so NO chance of a cure, just drugs that may extend life and make it more comfortable. When asked about prognosis he came up with two to three years!  

Well, better than a few weeks! 

And so, the story continues to be told, I still write my blog almost every day, sometimes it is banal and boring, but life is like that, it’s not all high days and holidays, but the story continues to unfold, the cancer is still there fighting the drugs. The drugs were fighting the cancer three months ago and I’ll find out in a week whether they still are and, if they aren’t, what Plan B might be. 

So, please remember World Kidney Cancer day on Thursday 21st June 2018 – and why not join me at the Penzance Litfest (4th – 7th July 2018) at 1:30 pm on Thursday 5th July 2018 where I will talk a bit about my experiences and how the writing process works for someone like me. Be assured that we – that is me and anyone who turns up and wants to talk – will talk a lot because my blog is about communication, and it takes at least two to communicate. 

So, there you have it. We very much hope to see you in Penzance in July. 

The Bean, Pendeen, Wed 20th June 2018, still here and still writing. 



Three weeks to Gower, autism, transgender and a bit of cancer too

Don’t forget you can listen to and talk with me at the Pz Litfest on 5th July, just three weeks to go! 

Once again, I ran out of time so here are another two weeks’ worth of blogs ????. 

Actually, Teresa is busy making curtains for the Campervan for our trip to the Gower Folk Festival this weekend and so won’t get a chance to review this until next week, so chances are it’s going to be three weeks’ worth 

Actually, it is two and a half weeks’ worth 🙂 

Sat 19-May-2018  

Today Teresa starts the second weekend of her singing workshop, so I’m here on my own. 

As usual I need to catch up on my time from Mon-Fri, so work in the morning. 

Once Teresa got back we measured templates for the window covers. These are like small bubbles bubble wrap coated in a foil-like material. 

Sun 20-May-2018  

Teresa is at her last day of the singing workshop 

Once she got back we cut out all the templates (in paper) and cut out the screens ready for fitting with the suckers supplied. I then took a scrap of the screen material and tested a couple of the supplied suckers to see if they would stay on overnight, I feared they wouldn’t as they were of the “lick and push” variety, like the old-fashioned sucker on an arrow from a child’s archery set!!  

Mon 21-May-2018  

Just a day in the office working. After I’d finished, back to Angelique. 

The suckers are useless, one came off in an hour, the other overnight – not much good for privacy when asleep! We need a plan B, I ordered better suckers – the sort used for attaching phones/sat navs where there is a mechanical component to sticking them to the window. They come with a hook on them as they are intended for hanging things up, usually in bathrooms, but I felt if they worked I could come up with a way of using them. 

Tue 22-May-2018  

At work in Penryn as usual. Because Angelique is off having leisure batteries and a fridge fitted, I went in Teresa’s car. I never thought to tell the folks at work I was in a different car as I know it is me in the red car in the disabled slot at the office. However, more than one person took umbridge on my behalf when this person put their car in Bean’s parking slot, to the extent an email went around the office. I had to apologise for not realising they didn’t know what I knew – classic autistic “theory of mind” problem. 

By the time I got home, the new suckers had arrived. They seem to work better, but testing overnight will prove the point. 

Wed 23-May-2018  

New suckers are brilliant for staying on, but I can’t see an easy way of making them work. It’s complicated because the car radio aerial is “printed” on two of the windows (as it often is nowadays) and I don’t want to be putting suckers on that section (top and bottom) in case it damages the tracks. So, despite being great suckers, I’d have to add something to the screens to make them more ridged for mounting in the middle of the window and also, they will be some distance from the glass and not so good for Mrs “I want a total blackout or I’ll never sleep”! Hmmm, we need plan C. 

I thought of an expanding (shower) pole for the rear/tailgate window and Teresa suggested café poles for the sides (I’d never heard of these before) then we (that is Teresa) would make some blackout curtains. Last minute!!! 

Thu 24-May-2018  

There’s been no mention of autism, cancer or poo recently, all must be ok? Well, no, it’s never OK. I am always worried about the cancer; my shoulder always hurts and I continue to have less than great movement in it. I’m always exhausted, …, it just gets boring going on about it :-). 

Just today, Teresa and I got into a crossed wires situation – awful when it happens and our joint stress levels make it more likely to happen on occasion, I felt awful/exhausted and the dreaded poo issues were back with a vengence. 

What was the problem? It’s going to be one of those “trivial” things that partners can argue about so easily, it gets added spice for us thanks to autism and the base level of stress from my condition on both of us. 

First thing, I went with Teresa for her to have a hearing test, she was very stressed about this. 

After we got back we did measuring and testing on Angelique for the blackout curtains.  

When done we came in to the house and Teresa commented that there were a lot of cardboard boxes on the floor (a lot of Amazon deliveries!) and would I please break them down. Why is this an issue? Well, it’s part of a general problem.  

Take the cupboards in the kitchen as an example. To my way of thinking, they are a disorganised nightmare, everything pushed and shoved and never in the same place twice. It is a nightmare for an autistic and my solution would be to have everything in its place, neatly organised. Never going to happen with Mrs Push it and Shove it, it’s just not her way, so, rather than try to change her (impossible), I said that she can do what she likes with the cupboards but will be asked to find things for me if I can’t easily find them. That happens far more often than I’d like, but I can make it work. 

Recycling is another example. The bags provided by the council are useless in terms of how much they hold and we have nowhere to store them. Teresa has her way of pushign and shoving stuff and it works for her, but I hate it, I get stressed every time I try to put the recycling in the bags so I put it where I can for her to deal with.  

So, nowhere for me to put the cardboard so I stack it on the floor in the kitchen and she puts it wherever she needs to, ready for recycling. Her complaint is that I don’t collapse the boxes down and today, after an exhausting time outside, at the end of the day when I’m always exhausted, she decided to “mention” it. So, we had to go over why I do what I do – if I collapse the boxes, the cats scatter them over the floor and Teresa can leave them in the kitchen for days (weeks sometimes it feels like). I had difficulty articulating this – that language problem, and she had got herself worked up so wasn’t working hard to understand. 

That’s a row in anyone’s relationship, but a problem for us was because it was unfair, I wasn’t being capricious, I had good reasons, but because they were “unusual” reasons, I had to persuade rather than having them accepted. 

Once I’m “accused” of being “wrong” (my language) then I need to resolve that and the problem of the cardboard is secondary, it’s the unfairness needs sorting first. Teresa wants the cardboard issue sorted. I have no problem with that but my issue first, not because it’s mine, but because it’s the first. Autistics are often very sequential, we have to solve problems one at a time and in the order they impact on us.  

And so, it all goes belly up and we lose my ability to engage emotionally and I become a cold fish and Teresa finds that hard and so we are in a mess. It doesn’t happen all the time, but when it does it’s really no fun and me worrying about this stupid cancer is NOT helping my ability to cope. Likewise, Teresa worrying about me and cancer isn’t helping her ability to cope… 

Still, the new poles for curtains in Angelique arrived, we tried them and they work without us needing to screw into her bodywork – a bit dodgy as we have no idea what is behind the plastic moldings. So, a bit of string and job’s done. Worked out how to make the curtains and will go hunting for material and stuff needed. This is, I think, the last thing needed before we head off to Wales – well last after the electrics are done but that’s not down to us 🙂 

Fri 25-May-2018  

Today I went to Physiotherapy. It’s always the same: they check my strength and mobility, tell me I’m doing the right thing and to come back in 6 weeks. It may sound like a waste of time as they don’t actually do anything, but the reality is that the slow healing of the collar bone is such that they can’t manipulate the joint at all. It’s clear my policy of pushing how I use the shoulder in doing day to day tasks is doing more than enough physiotherapy for them to be very happy with my progress, and I’m happy someone is monitoring that I am continuing to do the right thing. 

On top of our cardboard-stress we then had another Falmouth-like problem (see an earlier blog), this time regarding Truro on Saturday. I was worried about rain as that is difficult with the lawn mower, so Teresa said we could stay home and do paperwork, rather than suggest a Plan B – it felt just like Falmouth for me but not for her, so, not having recovered from the bad day yesterday, another bad day today 🙁 

Last week I took Angelique to our local (Citroen) garage (although she is a Toyota, the garage is excellent and both Teresa and my daughter use her) and they checked her over and were very pleased with her condition. Only problem was the tyres which were in a very poor state, so they ordered 4 news ones (£££ OUCH) and will be fitting them today, so that’s a couple of hours out of the afternoon, but then she will be mechanically ready for wales, which is good news. 


Thu and Fri coloured the whole weekend and indeed start of following week. In the end I am going to (and did) have to “fake it” for us to get out of it. 

While I am (emotionally) shutdown, Teresa just cannot cope with me and doesn’t know what to do. So, I fake not feeling as bad as I do, she starts to feel more positive, I am getting more relaxed that we are improving our emotional equilibrium, that makes me easier for Teresa, …,  

The problem (for me) is that my autistic mind is very clear that I am lying and I hate having to do that. I’m sure the NT amongst you have other phrases for it, but this is mine and I have to deal with resenting the fact that it is me, the person who struggles most with relationships, who has to do the work to start the repair process. 

Of course, Teresa is not doing nothing, it just feels like it to me and my emotional side being shut down it’s not something I can see. 

Mixed marriages (as we call them) are very difficult for both parties and can require MAJOR compromise to get through the difficult days! 

The Bean, Pendeen, 26-May-2018 

Sat 26-May-2018  

The death today of former US astronaut Alan Bean means there are now just four men alive who have walked on the Moon’s surface! 

So what? Well, I was 14 when Neil Armstrong stepped on the moon and had been glued to the space program since Gemini. It is the most significant milestone in my life, the time when I really connected to the world outside of me. 

I am seeing the moon walkers slowly die off, knowing that the 50th anniversary of that first landing is just over a year away and, although I hope to be still here to celebrate it, I am acutely aware that there is no certainty. 

Angelique is off having her electrics sorted, so, over to Perranporth before heading to Truro with the Lawnmower.  

It went fine in Truro but I was very tired at the end, especially after a Sainsburys shop on the way home. 

My concern is that the pain in my coccyx, having eased and become manageable, is now getting worse again, even with my special cushions, on top of which I am also getting general lower back pain. It’s probably just normal aches and pains, but I am afraid it’s hard not to see cancer everywhere 🙁 

The icing on the cake was getting an acceptance letter from Sheffield Hallam University for a PGCert Autism course I’d applied for. However not for November as I requested but for next June, that means: 

  • Start June 2019, a years’ time,  
  • Completion in 1.5 years’ time  
  • Graduation in 2.5 years’ time.  

It really feels like “why bother fighting”, I can’t any longer look forward to the 50th Anniversary of the Moon Landing. Graduating in 2.5 years’ time is further away than my initial prognosis. 

Now I know that prognosis is just a guess, and not a very good one. But I also know that this cancer can flip from being in control to out of control very quickly and when that happens it is quickly fatal. 

So, what is the point in fighting? Why don’t I just give up and wait to die? 

No matter how often people tell me how well I look, this is what is going on inside me and dealing with that is exhausting all of itself. When, if you are autistic like me and the whole of your life has been a battle to understand and cope, there really does come a point where giving up is the only answer. 

Sun 27-May-2018  

No idea what we did! 

Mon 28-May-2018  

Office work in the morning, sorting out campervan stuff in the afternoon 

Tue 29-May-2018  

At work 

When I got back from work, I met up with my second wife at the North. We usually meet up when she comes down to visit our daughter, part of keeping the parental link working between us. 

Wed 30-May-2018  

I was annoyed to see, on the BBC News website this morning, 

Twitter ‘bans women against trans ideology’, say feminists

More usefully the article also referenced this one about transgender arguments dividing society on 5th March 2018. 

That article contained the interesting and to me, more revealing comment: 

“The moral panic we see at the moment isn’t really about the gender recognition act, in the same way the really undignified public discourse around gay marriage wasn’t really about gay marriage – it is just an excuse for people to vent really ugly homophobia,” Ms Lees argues. 

“All we are hearing about is all of people’s imagined fears about how it will be the end of the world if we make it easier for you and I to change our birth certificates.” 

This matches the attitudes I hear from a small group of women who are very aggressive in their opinions about trans, incidentally ONLY about male to female as far as I can tell, not about female to male! 

They are unwilling to enter into discussion and instead keep on stating the same pieces of prejudice with the same lack of actual evidence. 

I am NOT Transgender by many definitions, but I am closer to their community than the average person on the street.

So, I don’t wish for a new birth certificate stating I am female, I don’t want my old birth certificate that says I am a male if people are going to judge my needs based on it (and they do). 

I don’t want to use female toilets as I respect some women’s (biological or trans) concerns (whether valid or not) particularly since I am an imposing figure not trying to be ANY gender. 

On the other hand, I’ve not heard a single one of those individuals express a word of concern over how vulnerable I feel in a MALE toilet, or out on my own late at night and what their proposed solution is.  

It seems to me they want “their” safe space, even though it is perfectly possible that the biological female next to them and who may be as large, strong and aggressive as the average male they fear, may be REALLY keen to have sex with them! 

The statistics show that the Trans community are at least as likely to be abused as a biological woman and just as much in need of safe spaces. 

It seems to me that so long as those that fear Trans look in at themselves, then, for them, the problems for the Trans communitydon’t matter. I don’t consider that a good indication of humanity never mind femininity! 

Thu 31-May-2018  

Just a normal day at the office 

Fri 01-Jun-2018  

Just a normal day at the office 


This has been a difficult old week for me, the feeling of “what’s the point of fighting this, it’s going to kill me anyway” is overpowering. I have talked elsewhere about the problems of feeling suicidal as part of being autistic. That you cannot connect to the society around you so what’s the point in being in it. Take that stress alongside a limited life expectancy and unpleasant death and I hope you can see that things don’t get any easier! 

The Bean, Pendeen, 02Jun-2018 

Sat 02-Jun-2018  

Ok, clearly the last two weeks won’t get out before we go to the Gower Folk Festival, so, I’ll tack on the start of this week onto the last two weeks and write up Gower on its own. 

I made a meatloaf with the new recipe (just as nice as last time, it’s a keeper) and then did some work in the morning to catch up. 

We collected Angelique in the afternoon. Teresa left while I finished looking at the work that had been done. As I went to drive away at 3:30pm I found the air conditioning was not working. The next hour and a half were spent exploring why. This included checking the fuse for the aircon. My translated version of the Alphard handbook was clear which fuse and where the fuse box was (there are four in different parts of the car) but we could not find it there. Eventually I got out the Japanese handbook (no I don’t understand a word of it) and looked for pictures that matched my handbook. For this fuse box, my handbook says where it is, shows a picture and says get your Toyota dealer to sort, which was ominous. The Japanese handbook showed another bit of trim to remove and lo and behold if you stand on your head twist your eyeballs through 90 degrees and have the hand of a child, you can change a fuse. We (me with Owen, the guy who did all the work) managed to get out the fuse and replace it: bad news, it was fine. 

He’d routed the charging cable through that area so could have knocked something but nothing we could find so in the end I decided I would take it to the garage where they could plug in the diagnostics and see what the computers thought. 

Darned and blast, problem not fixed before we go away to Wales, so have to hope it’s cool while we drive because I’ve never handled heat well, now I’m on these drugs I REALLY suffer in the heat, the slightest increase triggers a major hot flush. 

Oh well, the new leisure batteries plus fridge and chargers were well fitted into an impossible small space – though Teresa is unhappy as she lost the two under seat storage areas – each one is now filled with a 110Amp Hour battery plus various chargers, inverter, … 

On the other hand she will be pleased with the cold fridge and charging for her phone, …, so I hope I will eventually get some credit? 

Got home and wanted to put the Campervan on charge but couldn’t find my 13A plug to Caravan power connecter adapter. I’d changed into my nighty and was settled but it worried away at me and so I had to throw a dress on over the nighty and have one last go at finding it. 

Yeah, after turning both sheds upside down, dropping a piece of the seating that had been taken out of Angelique onto my right foot, leaving my big toe hurting and filling the toe end of my sandal with blood, I found it. Plugged it in, connected up the cable to Angelique and left it on overnight charging up the batteries ready for testing tomorrow. 

Sun 03-Jun-2018  

Disconnected the mains charger, turned on the fridge and started monitoring the battery voltage and fridge temperature so I could estimate how long the batteries would last. 

I made a loaf of bread this morning for the meatloaf sandwiches, then worked out a way to bend and fix our gas hob’s wind shield so it’s better protected when the back door of Angelique is open (its’ designed to be used from the outside, but that’s no good in the wind and the rain, even standing under the tailgate 

Back in the house, I investigated our macerator loo which is misbehaving, but I will need to take it all out and replace – not trivial. 

Spent time with Teresa testing the first curtain she’d made up (of eight!) and we are pleased, it’s not perfect, but the two café poles on the side tied onto some grab handles above the doors plus shower rail fitted across the back plus the curtains looks like it will work. If we (Teresa) had more time, we could have planned the curtains better, but I’m really pleased with what we have worked out. Unfortunately, that is now all down to Teresa to make the other seven curtains!!! 

Then I made the meatloaf sandwiches. 

Then I was exhausted! At 7pm I switched off the fridge in Angelique as that is what we would do anyway to save power and reduce noise when sleeping there. 

Then daughter found an infestation of large flies (blowflies I suspect) in her bedroom and I had to go in and smother them with fly spray, then later hoover them up then later spray the room with Oust to try and clear some of the fumes; then later still, move a load of stuff stored in there so I could open one of the windows to add ventilation. All of this after 9pm. I sat downstairs, feeling totally exhausted and yet manic at the same time – that overtired child condition I have described before. Indeed, once I settled down I crashed to sleep very quickly. 

Mon 04-Jun-2018  

Turned the fridge back on, it hadn’t lost very much cold and given it was empty I’d expect it to do even better when full or at least as well if full and much hotter. 

Put thermometer in the van (as well as the fridge) as it promised to get quite hot in the van during the day (it did, mid 30’s centigrade). 

I then got most of a day’s work done, still very tired after the weekend, recovery times are rubbish 🙁  

Switched off the fridge at the end of the day and am pleased, it’s still holding up very well after two days. Hopefully real-world tests in a field, especially one of the festivals in August, will show how well things work. 

Teresa got Angelique booked into the garage on Wednesday and they will hopefully find the aircon fault and get it fixed before Thursday evening! 

Tue 05-Jun-2018  

At work in Penryn as usual, Teresa spending all day on curtains, not yet half way through, she is working hard and much appreciated. 

Wed 06-Jun-2018  

Took Angelique to the garage, fingers crossed 

Otherwise, an ordinary day’s work 

Thu 07-Jun-2018  

Another ordinary days work. I am really on holiday today but needed to catch up on work time I’d lost earlier. 

It turns out that Angelique’s aircon is gas free, so something done to her has caused a leak and that’s why there is no aircon. We’ll take it back to the place that did the work to investigate, but it does mean we will be travelling without aircon and that does worry me. 

Once we got Angelique back from the garage we packed her up, including the fridge, so it will be a get in and go tomorrow morning. 


The trip to Gower, our weekend and the trip home will appear in a report on the festival. I need to get this out as soon as I can. 

I get the results of my next scan on Wed 27th June, two weeks time, the scanxiety is up in the stratosphere, unless you also live this three months at a time life, you cannot appreciate the difficulty of coping as the date for the scan (next week) and results (two weeks) crawls closer and closer, it is a very unpleasant and drawn out torture that makes even trying to live one day at the time a nightmare.

Finally, just to save you from scrolling back to the top 🙂

Don’t forget you can listen to and talk with me at the Pz Litfest on 5th July, just three weeks to go! 

 The Bean, Pendeen13Jun-2018