Month: November 2017

Day 5, Blood Pressure

This was the blog for Day 4 (Saturday) but time got away from us and although I wrote this blog yesterday (no dictation needed, now I can type two hands for short periods), I still need Teresa to check my more wacky spelling, grammar, and choice of words so that it’s actually possible to read this without too much head scratching. She was busy making the first of two Xmas cakes (one her preferred recipe, one mine) yesterday afternoon and that was rather more important than a bit of editing. So, a day late, but here it is ????.

There are many side effects to Pazopanib; the doctors automatically give you a prescription for Motilium domperidone (10mg, 3 times a day) to help if it makes you nauseous, and Loperamide (2mg, 4 times a day) if you get diarrhoea. So, as you can see, this is not an innocent little drug.

Next on the list, and of most concern, is blood pressure. Pazopanib raises blood pressure because it compresses blood vessels as part of the way it works (deny blood to thirsty tumours). The side effect is to narrow the blood vessels everywhere – including the heart – and hence up goes the blood pressure.

They often also have to give you drugs to lower your blood pressure.

All well and good, unless you already have raised blood pressure like I do. I have been taking 8mg Candesartan for some years now and my blood pressure is now normal instead of elevated. It’s not a big dose (big would be 32mg) but it’s there. Trouble is, that it is a vasodilator (actually an ACE inhibitor) which works by expanding (dilating) the blood vessels – which is great for those serving the heart.

Virtually all Hyper Tension (raised blood pressure) drugs work via the kidney and it’s hard not to wonder whether my two conditions are related, I’m told not, but …

So, currently I have my cancer meds ready and waiting, but can’t take them because my blood pressure is too high. Why is it too high, well

  • Apparently, I have terminal cancer and might just be a tad stressed
  • One of my pain killers, Naproxen is, like Ibuprofen, an anti-inflammatory and apparently they DO raise blood pressure
  • I have a propensity for high blood pressure.

With all this in mind, we went to see my GP Friday morning and we agreed:

  • To drop the Naproxen (the Paracetamol and Tramadol don’t affect blood pressure) and should be sufficient.
  • Increase my blood pressure meds. However, not by just extending the Candesartan as that might fight the Pazopanib (nobody I can speak seems to know for sure, so will try the Oncologists on Monday). In the meantime, I am now on Indapamide (2.5mg once a day), which is a diuretic (still works via the kidneys) but is apparently one of the less “wee intensive” ones.

I am monitoring my blood pressure twice and day and so far

  • Starting Thursday evening: Worst 155/103, pulse 99, best 137/90, pulse 95 
  • Friday morning: worst 150/94, pulse 102, best 143/92, pulse 100
  • Friday evening after one of the Indapamide that morning: worst 146/90, pulse 91, best 134/86, pulse 90
  • Saturday morning, this is the first time I have measured and been off Naproxen: worst 153/96, pulse 117, best 130/93, pulse 117
  • Saturday evening: worst 149/94, pulse 108, best 124/88, pulse 103
  • Sunday Morning: worst 155/97, pulse 115, best 132/87, pulse 110

My normal heart rate is often around 90 (since I was a teenager) but this is bad even for me and the blood pressure is still too high but getting there.

The goal is to ring the Oncology department on Monday morning with an acceptable pressure so I can get started on ALL those other lovely side effects – there are so many to choose from ????.

I am planning to return to work once the collar bone and ribs have done most of their healing i.e. in a week or so’s time, and that’s going to be interesting in its own way. Going back to work is part of the process of ’normalising’ my life so that the cancer has its place but is not always up front and centre. Working out how to do that will have its own challenges.

Postscript

At the moment these posts are coming out every day, because things are changing for me (actually us) daily and I want to capture that. It is our intention that the cancer will not run (or ruin) our lives and it will become less central to our lives, though still a key part!

So, if you are getting a little weary of all the updates, please be patient, the flood will die down to something more manageable.

That said, managing all the drugs I will be taking and all their side effects will be an interesting journey in its own right.

So, although I don’t know how to stop talking (ask Teresa), I will try and slow down a bit.

On a much more mundane point:

I was due to have my back and legs waxed today. I can lie on the table on my back (just about) but not on my front, so we were only able to do front of legs and most of the backs by careful twisting.

I did however take the opportunity for a full pedicure and new toes which helped me feel good and as many women (but few men, I suspect) will tell you, that helps how I feel!

As for how I go about showering at the moment, with one arm out of action, well, I’ll leave that to your imagination – until tomorrow ????.

The Bean, at home, Sun 26-Nov-2017

 

Fear, Day 3, 24-Nov-2017

Fear vs. Brave

I am intelligent, very logical and thanks to being autistic, used to my emotions coming out of nowhere.

That puts me in a “relatively” good place to write these blogs, but it does not mean I am OK.

I am terrified of where this cancer is taking me, and I am terrified of dying. Please don’t mistake what you see on the outside (what you read in this blog) for what is going on inside.

  • Most of the time I manage to stay in control of my (logical) brain, being autistic, this is normal for me.
  • Sometimes emotions hit me like a sledgehammer, coming out of nowhere;’, again, being autistic, this is normal for me.
  • When Teresa (or anyone else I encounter) is upset, I pick up her emotion and it becomes mine even if I was OK; being autistic, this is normal for me.

I am not being brave.

I’d hate anyone reading this blog or our postings on Facebook, to think I was somehow brave, I’m not. I am autistic and that means my responses to things look different, but when you look deeper they are the same, they just look and sound different.

If you were to talk to my son (number 3 son) you’d think he doesn’t care, but he is also autistic and he understands me better than almost anyone. He understands why I am so logical and pragmatic about it, because that is where he is.

Most other people in my life are surprised by how I seem.

Autism can (and often does) make life very difficult, but there are a few circumstances, and this is one, where it gives us a coping facility not available to others.

So, I don’t want anyone reading this thinking I am super man (more accurately, super non-gender specific person). I’m not, I am very frightened.

What I do have is a disconnect between my ordinary thought processes and my emotional ones, the emotions run on their own timeline and appear and disappear without me knowing why. I could burst into tears right now because I am going to die, or because my eldest son (number 1 son) refuses to speak to me, or because I had a bad day 3 weeks ago because of what someone said to me.

Because of this disconnect, I am used to managing my emotional responses and not letting them drive my rational mind.

So, I appear, cool, calm, collected and in control. And, to be fair, a lot of the time I am. But underneath that I remain a very frightened Bean.

Typing makes it much easier than talking would. Indeed, talking to me face to face is quite likely to result in tears.

Because I can look at this calmly, it means I can describe quite clearly what is happening to me. However, the emotions are there too, even if I describe them in a logical fashion, they are very real and very present.

You can’t see on the page all my tears while I am writing or editing. You can’t see the tears running down my face as I read your comments, indeed as I write and edit this paragraph (but the rest of this blog was fine, no tears at all, go figure).

Postscript

Having cancer that is survivable is incredibly scarey. Having cancer that is terminal is also very scarey. Knowing you only have a few days, weeks, months or years to live is scarey.

I’m not immune to that, but I hope that I can help shine light on that fear and the process I must go through and make it a little less scarey for others going through it, especially for their friends and family. Most of all, if there are autistics involved (on either side of the equation), please try very hard to understand just how different this can be for them and be quick to understand difference and slow to criticise what might seem like unthinking or uncaring or inappropriate reactions.

Tomorrow the dilemma of having high blood pressure and one of the many side effects of treatment with Pazopanib. I’m hopefully off to the GP this morning to discuss this.

The Bean, at home, Fri 24-Nov-2017.

Day 2, the morning after the night before

Day 2, the morning after the night before

As is usual for me, I was awake before 5am and I am here at my desk at home at 6:50am, that’s about the time I usually arrive at work. I am an early starter and that has been the case since I was a paper boy, 50 years ago.

There has been an awful lot of love on Facebook, especially on Teresa’s re-post. That is as it should be and as expected.

  • She is active on FB and Twitter, I am not
  • Whilst I am a social creature, it is very hard for me to do, both in terms of how hard I have to work at it and the impact it has on me.
  • She is the one that needs it most, she has to watch the person she loves deteriorate and die, long before she expected it to happen – 2 years not 20 years!

That said, I do appreciate all everyone has said, whether it is comments on my blog, my FB page or Teresa’s.

Also a lot of people have been in the situation where they don’t know what to say and so either say nothing or say what they feel they can say and feel frustrated that it is not what they want to say because there is no vocabulary for this situation. That is why I have introduced the word “bugger” to the situation. At one time, I asked Teresa last night to tell me what she needed from me. She said, right now I need to say f*ck, now Teresa doesn’t swear (I do!) and even if she did, she would never use the “freddie” word (an in joke). I agree with her it’s a right f*cking pain. Cancer is horrible, it’s OK for us to call it nasty names if it helps us cope or talk about it.

I know that it’s hard to know what to say. Cancer and death are not things normally talked about and yet they are incredibly common. Fortunately, nowadays, many cancers are curable, indeed mine would be if it had been caught sooner, but it wasn’t (more on that tomorrow). Death however is waiting for all of us.

I needed purpose to my life which is why I started the letters from The North, talking about living as an autistic and a gender diverse person. I also need to find a purpose to my death and I have chosen the same path, to bring out in the open what it means to go through this and to try and encourage people to engage and talk about it.

There’s nothing worse than feeling isolated and there is no need to, there is just the fear, both of the person with cancer and/or facing death, and of their loved ones and those around them.

I’m not fragile, I won’t break, please engage with me, compare notes, make jokes, help me make this less scary for everyone who is facing it.

When I asked for my prognosis, the consultant said I was very brave for asking. How awful is that? I cannot tell anyone else how to face this, but I can say that I was not brave for asking I was being practical, death needs you to be practical, if I buried my head in the sand I would be leaving Teresa to pick up the pieces and sort out the mess after I’ve gone. How cruel is that?

Now I have a timescale I can make sure that she is as prepared as I can manage and I’m not leaving her with MY mess to clean-up.

Asking for my prognosis was not brave, it was loving, it was also VERY autistic, we autistics do like control and not knowing is far worse than knowing.

Yes, we are both in shock, not because we didn’t expect the news, because we, and especially I, were sure. But because it became the first day of my last days (well years, I hope), in a sense, that clock started the moment he told us.

The side effects of the drug I am starting on are many and I have no idea how they are going to affect me, but being me, I will be documenting them.

Hooray, there is no contraindication to drinking beer in moderation so, once I’m off the heavy pain killers, I will be back at the North on Fridays.

That said I am going to be back at Treliske every month for tests and scans to monitor the tumours’ growth or, hopefully, lack of growth and preferably shrinkage.

To quote the Consultant (well paraphrase given my memory)

You will be here monthly for some months for me to monitor, if you behave yourself that will be every two months. I asked, and he confirmed, that it was the cancer not me behaving myself he meant.

That said, me and the cancer are both here in this body and I need to find a way of staying the majority partner for as long as possible ????.

Well, I have managed to type all of this with two hands, but I think I need to give my right arm a rest now.

Teresa is going through hell right now, but I think I can say for her (she has checked this blog and agrees), the best thing you can do is not to try and wrap her in cotton wool, and not be concerned if she bursts into tears because I know that’s her greatest worry (well apart from me dying that is ????), that people will be uncomfortable if she gets upset.

I want her to return to her normal social activities while this is going on. We will both burst into tears at times, it’s OK, it’s normal and more to the point it’s healthy, trying to bottle it up and be brave for others is not healthy and I want her to be healthy (in mind, emotion and body).

The Bean, at Home, Thursday 23-Nov-2017

The beginning of the end, a letter from Treliske, Wed 22-Nov-2017

I had to type this as asking Teresa to take dictation would have been cruel and got the keyboard wet with tears,  so this will be brief as my typing time is severely limited.

We went to see the Renal Oncologist at Treliske this morning.

I have stage 4 Renal Cancer, too late for radical treatment, just drugs (Pazopanib) to slow it down/shrink the tumours. It’s too late for surgery and this sort of cancer doesn’t respond to Chemotherapy 🙁 

The 5 year survival rate is less than 10% and the consultant said I would probably have  2-3 years if the reduction goes well, less if not. So, however you look at it, its not the worst it could be, I have a few years not days or months.

But it still stinks, however you look at it.

Time to asses what matters and what doesn’t and make sure life is sorted for Teresa once I’m gone.

All I can say is

Bugger.

I will continue the letters in proper sequence in a few days, but we need a few days to properly process this and work out our strategy moving forwards.

The Bean, Treliske, Wed 22-Nov-2017

Another view of the poor Landrover, aka Blossom

Letter from Treliske 30th Oct, a testing Time

A testing time

When we left Treliske on Friday (the day of the accident) they said we had an appointment with the Ambulatory Care Unit at 9.30am on the following Monday. My understanding was that this seemed to be a follow-up after the accident and for a biopsy to be taken. It seemed like we were the first to arrive at the ACU that morning and we were taken to a small side ward where the usual tests took place (temperature and blood pressure) and then a consultant appeared and we told him all that had happened including that we understood that a biopsy had been booked. He went to check this and no, it hadn’t. Fortunately, he was able to get one arranged which took place later that morning.

Whilst this unit didn’t address gender directly, they did ask what I wanted to be called. I said ‘Bean’ and that is how they addressed me and introduced me to others. In addition, compliments on how I was dressed showed, to me, that they were comfortable with how I presented myself and my ambiguous gender.

The next stage of the process was to check my tummy, I believe to see whether there were any other suspicious lumps and bumps, and for this I had to remove my top and camisole.

Getting Dressed

Putting on and removing clothing is an extraordinarily tortuous process when not only can you not move your right arm, but any twitch is excruciatingly painful.  It is surprising how standing up, sitting down, moving your left arm tugs on the right-hand side. Surprising, that is, until someone installs pain sensors and then YOU KNOW”.

When I was 22 I broke the big toe on my left foot. The joint itself is still locked. Again, it’s only when it doesn’t work you discover how useful it is when you walk and you need to re-learn. I am learning very quickly what is connected to my ribs and collar bone – there is a lot, including breathing and as for coughing (which is, apparently, essential for lung health), that’s great fun (not).

So, it had taken us an hour and a half that morning for me to have a basic wash and get dressed and we didn’t make the best choice of top, pretty but difficult to get on and (as we later found), off… Subsequently we made sure that my tops always had buttons up the front. However, with Teresa’s help, and a lot of fuss, I was able to get dressed in the morning and remove the clothing in the side ward. So there I was, sitting on the bed with my cerise knickers (dark pink, for the boys, though they weren’t boys knickers ????). One of the nurses offered me a standard hospital gown to cover me up while we waited. This was a considerable step up from my previous experience of such gowns. It didn’t feel fragile and the ties let it close completely at the back.

My tummy was then palpated and I was told I could get dressed again. I REALLY did not want to go through the whole undressing, dressing thing again so I asked if I could keep the gown on and just put my skirt over the bottom of it. They were quite happy with this and, as it turned out, it was a good move.

So now it was waiting time until they were ready to do the biopsy. They were going to take a biopsy of the enlarged lymph node they had seen in my right shoulder and to do that they use an ultrasound scanner to be sure they are aiming at the right spot. Consequently, we were summoned to the ultrasound unit and I was offered a wheelchair but I fancied the exercise and so was escorted (with Teresa) to Radiology. After a bit of a wait, in we went in and then had to find a compromise between how flat I laid and what I could tolerate because of the pain. In retrospect I should have asked for some Oromorph before I went down. The radiologist proceeded to give me a local anaesthetic and warned me I’d feel a prick and a scratch. She seemed to be concerned that I would be worried about the pain from the local anaesthetic. I had far bigger pain worries than whatever she was doing and I think she could have used a red hot poker and I wouldn’t have noticed. I didn’t see the actual biopsy being done but from what I felt and heard, and what Teresa describes, it was a bit like having your ears pierced except with a much, much, much, bigger needle. She took two samples and whilst I felt the pressure of the sample gun being fired, I didn’t feel any pain at all – other than the intense pain I was already in.

When I was doing my PhD, it was using Ultrasound technology that was 40 years behind todays, real time ultrasound scanners are the norm now, they didn’t exist back then (ditto CT Scanners). As well as everything else going on in my life at the moment, my love and interest in technology has not waned.

A small plaster over the wound, and that was that.

I later noticed blood all over the shoulder of the gown and I was glad I was wearing a hospital gown and not my pretty top.

The radiologist’s assistant offered me a wheelchair to return to the ACU but, as I had arrived under my own steam, I wanted to go back the same way, so I politely declined.

I headed back towards the ACU but hadn’t got very far before I was hit by intense waves of pain from my collarbone and ribs and had to lean against a wall to support myself. We were right by the reception for the radiology unit so I asked Teresa to organise a wheelchair, please. That seemed to be taken as an unreasonable request by the reception staff who said they hadn’t got one and couldn’t possibly help. I could tell that Teresa had gone into major protective mode and was ready to have a major wrangle with them and it was quite likely she would make them carry me if they couldn’t find a wheelchair ????. However, the pain subsided to a dull roar and I couldn’t tolerate any fuss so I just set off walking back to the ACU and, once Teresa realised I’d gone, she came after me. At the speed I was moving, catching me up wasn’t exactly a challenge.

I have to say this was the worst attitude I encountered. Most of the staff were helpful and supportive, some officious but ok; this lot were just belligerent and really could and should have tried harder.

Once I was back in the ACU I asked for some more of that Oromorph stuff. We were now back to waiting for another CT scan, this time of my abdomen. After some hours we were told by a junior doctor that they were too busy and we would be sent a letter in a week or so, notifying us of when my appointment would be. I wasn’t happy about this because I wanted the test done as soon as possible. Fortunately, other staff on the unit agreed with me and were able to organise a scan for 9.00 the following morning. I was very grateful for this, and for the biopsy being arranged and this confirms how I felt on the Friday when I could see that most staff did their best, sometimes in spite of the system, some went more than just “the extra mile”.

And so we went home, me still wearing the gown. I was in a lot of pain when we got home and could not face removing the gown, so that was my nightie for the night.

Treliske ACU – Take Two

The following morning, we were up again at 6.00 am and went through the same painful process of getting washed and dressed, except this time with a buttoned-up blouse. It didn’t quite match the skirt, the blouse being coral (orangey pink, for the boys) and the skirt a dark pink. I wasn’t happy about that, but needs must, and I did apologise to the staff on the ACU when I arrived having been complimented on having a matching top (and knickers) on the previous day. The knickers today were purple, but at least they toned.

We arrived at the ACU in good time, had the usual tests, and were taken down to the CT scanner. However, this time I asked for some Oromorph first, and for a wheelchair. The scanning process was exactly the same as Friday, although this time as well as the ‘taste’ and warmth in the crotch, I felt a warmth in my chest area as well.

I wouldn’t say that the taste in my mouth was unpleasant, but if I were an autistic with taste sensitivities (which I’m not) then I could imagine it being deeply unpleasant and distressing, especially being unexpected, and I do wonder whether, as well as asking if we are allergic to the contrast or the chemicals in the contrast, they might check whether we have taste sensitivity issues.

Teresa wheeled me back to the ACU and a different consultant on the unit told us not to bother hanging around for the results as there wouldn’t be any information and we should just go home and wait. This was the first time I had a real sense that the oncology unit has its own way of doing things and some people weren’t altogether happy that we’d worked around some of their processes. The biopsy results would take a week or so and the Multi-disciplinary Team (MDT) (to decide what it meant and what to do would) would meet once they had all the data.

As it happens, we got a call from the ACU consultant on Thu/Fri telling us that the biopsy indicated the cells in the shoulder were from the kidney and that was likely to be “the primary” and they would expect the MDT to take place the following week and we should hear by the end of that week about what would happen next. In fact we got a letter on the morning of Friday 10th telling us that we were to go to the oncology unit on Wednesday 22nd November.

The Aftermath – and Visiting the Ailing Blossom

Since we were finished quite early (about 10.30) and I’d had a message from my garage saying that they’d collected Blossom from where she had been towed to, I decided I wanted to call into the office to say hello and then across the road to the garage to see what state Blossom was in, and so off to Penryn we went.

Fortunately, our Human Resources man was in and he was able to walk me through the whole sick note/sick leave process which meant that I now knew that I had to go to seem my GP to get a sick note because that is required after the first six days.

It was nice going into the office and Teresa came in with me. I know it’s a good company to work for but I think Teresa was surprised by just how friendly, supportive and caring they are and she told me that as she went round the office with me, she felt she was going round with royalty the way everyone stopped to say hello and ask how I was.

It was then off to the garage and you will already have seen a picture of Blossom, this one shows my exit route, just remember the driver’s door side was on the road and the windscreen (well where the windscreen used to be) vertical!

Goodness, she was a mess and would need a complete body transplant. I know just how she felt. We then headed home and by this time I was tired, in pain and somewhat away with the fairies. I don’t really remember much of the rest of the day.

I am pretty sure that I tried to book an appointment with my GP on the Tuesday afternoon but our doctors have a system where you ring at 8.00 am on the day you want your appointment. On Wednesday morning Teresa was off to have her hair done at 9.00 am so on the principle that I wanted to get to the GP asap I decided that if I could get an appointment while she was at the hairdressers I would accept it, rather than wait for her to get back, and if it meant I had to wait for her to get back from the hairdressers before I went home, that was all right by me. So, for the third morning in a row we went through the washing and dressing routine.We were getting quite good at it by now, and could do it in about 45 minutes.

We rang the GP at 8.00, got an appointment for 9.30, and Teresa dropped me off at the doctors in St. Just on her way to the hairdressers in Penzance. What I didn’t want to happen was for Teresa to cancel her appointment. This is likely to go on for a long time and I want Teresa to still have her own life, not just be my nursemaid and servant. I have seen (too many) females in my (and other) families being exhausted by males demanding 100% of their time. I will do as much as I can without help and encourage Teresa to do as much social stuff as possible. I want to care for her wellbeing as much as she does mine.

I don’t remember a lot of the doctor’s appointment, but he organised a sick note and changed the pain medication to something that should work better.

So as prescribed by the hospital it was

  • 1000 mg paracetamol, every 3 hours
  • 500 mg ibuprofen, every 4 hours
  • 5 ml of Oromorph as required (but no more than once an hour).

This was changed to

  • 1000 mg paracetamol, every 4 hours but I do it twice a day to fit in with the others
  • 500 gm Naproxen (morning and evening) this is supposed to be better than Ibuprofen as an anti-inflammatory
  • 50 mg Tramadol morning and evening. The Tramadol is a slow-release opiate and should keep the pain under control all of the time. His expectation was that I would start with 50 mg twice a day reducing the Oromorph and after three days go to 100 mg twice a day and no Oromorph. Another advantage of the Tramadol is it doesn’t produce constipation and I could stop taking the laxatives.

I had to wait around at the doctors for about 45 minutes for Teresa, I just couldn’t face the hassle of a taxi, and then we went home. I have to say that that the new drug regime is brilliant and although I have had some bad pain episodes since, in the main it has controlled it very well.

On the CDU I was given a sling that’s clearly meant to be comfortable and easy to put on and take off – something like this. By the Saturday I was starting to get itching in the crook of my arm and a week later I had rash from my wrist all the way up to my shoulder and all the way down my right-hand side to my waist. Clearly, I was allergic to this new-fangled style sling. I can’t take anti-histamines as they conflict with my blood pressure pills, so I needed to get rid of the source. Teresa and I constructed a temporary replacement using a scarf. More on scarves and slings in next weeks thrilling instalment ????.

And so the first week comes to an end…

Postscript

I am not suggesting my pain meds are ‘right’, but they work for me. I suspect doctors vary with what they think is best so the info above isn’t a recipe, just an explanation of what worked for me.

Letter from Treliske Fri 27-Oct-2017, how it all started

It’s nearly three weeks since the accident and I am just getting some limited use of my right hand for typing – although only just enough to write this paragraph. The rest of this letter was dictated to Teresa and subsequently edited by me, even slower than normal. That’s enough says my collarbone, my right arm is ready for a rest …

The first day, morning

I was up at 5.25am this morning, unlike the rest of the week when I’ve been up at about 5am. I filled Blossom with diesel at Tesco in PZ at 6.15am and with a full tank, headed off to Penryn.

As is usual at that time of day, the roads were nice and quiet. I pootled along the dual carriageway section of the A30 towards the Long Rock roundabout, at my usual 70 miles per hour (so, probably not ‘pootled’). I was in the right-hand lane because the left-hand lane turns left towards Crowlas and St. Ives.

I can’t be sure what happened next, but I slowed down for the roundabout, made sure there was nobody on it and that nobody was joining it from the right. On the road coming down from Crowlas, an ambulance had stopped and was waiting for me to finish going over the roundabout; nobody else was visible. As I crossed, I glimpsed a white blur coming down the A30 from Crowlas/St Ives, which I thought at the time was a Ford Transit but turns out was a Mercedes Sprinter. Despite the stationary ambulance, the driver obviously didn’t see me and didn’t slow down for the roundabout and T-boned me (that is, hit the passenger side of Blossom, my Landrover) with some force.

Oh *****, I thought, this is going to be messy, and I’m going to be late for work. I was more worried about being late for work than anything else.

Blossom started rotating anti-clockwise and was now travelling sideways, as well as forwards. Next she did her impersonation of a motorbike on two wheels. I’ve always thought motorbikes going around corners at high speed look incredibly dangerous at 45 degrees. I can confirm that Landrovers feel equally dangerous and scary at 45 degrees on two wheels.

After spending a few moments doing her motorbike impressions, Blossom completed her pirouette and landed on her right-hand side, and the world stopped moving.

Ouch, I thought. My shoulder hurts. The engine’s still running, better turn it off. I hope the ambulance crew is still there, they’d be very useful right now.

Yes, I really was that calm and logical.

Happily, they were still there and appeared shortly afterwards to talk to me through the windscreen, or at least the place where the windscreen have been – it having gone walkabout during the landing phase. Once we’d established I was still relatively in one piece, the ambulance crew and I worked out that it was safer for me to get out rather than remain lying inside Blossom; Blossom herself was lying in a pool of diesel.

That was easier said than done as I was still in my seat, my shoulder against the current bottom of Blossom (i.e. on the road), but what used to be the driver’s side. The only obvious way out was over the steering wheel and through the missing windscreen.

However,

  1. I still had my seatbelt on.
  2. My legs were still down by the pedals, and Landrovers really don’t have much room in that area.
  3. I’m not exactly what you would call slim or short and the gap between the top of the steering wheel and the original roof of the Landrover, is very small.
  4. My shoulder hurt like hell and I couldn’t use my right arm to lever myself; more to the point, I was on my right-hand side with all my weight pressing down on it.
  5. So, as I usually do when presented with a problem, I worked out a solution. One of the ambulance crew undid my seatbelt, rescued my phone and handbag, and I made sure my handbag was nice and safe (well, you would want your handbag to be safe under those circumstances, wouldn’t you?); my phone was put in my handbag because I knew I was going to have to talk to Teresa and tell her what had happened.

One of the crew took my left hand and braced so I could pull against them, not them pull me (I needed to be in control, and do it my way). I then proceeded to try to get my legs out from under the steering wheel and over the top of it. If you’d asked me before, I’d have said that was impossible, but it’s quite surprising what you can do when you don’t have a choice. I got my feet through the windscreen and warned the crew that they were likely to ‘get an eyeful.’ I was told, ‘Don’t worry, we’ve seen it all before.’ Given I was wearing tights and a short dress, I’m not sure the view was one they’d seen that often. Anyway, I wriggled and pulled on the crew’s arm and got myself onto the ground outside without too much pain. I was now lying on my right-hand side on the road, my back against the bonnet, in a mixture of glass and diesel.

Stage one complete. …

The next challenge was to get me upright and to the ambulance. Fortunately, adrenalin and shock are wonderful things and whilst I couldn’t use my right arm, the pain was manageable (this didn’t last much longer). After a few minutes to recover, the ambulance crew helped pull me to an upright sitting position and, after another few minutes, to get vertical; with a little help on my left arm (because I wasn’t letting anyone near my right arm) I walked over to the ambulance and carefully, slowly and gingerly, climbed up the steps and sat on the bed. After another few minutes, with one paramedic bracing my hand and the other lifting my feet, I got to a sitting position.

I can’t tell you much of what happened next, but I know they checked me over, concluded I probably had a broken collarbone, but otherwise not badly injured. In chatting to them, it turns out they were five minutes from their depot at the end of a 12-hour night shift, so I was incredibly lucky they were there. More importantly, it was very clear that my health and condition were all that mattered to them; being late finishing their shift was irrelevant. I was aware of some discussion about a replacement ambulance to take me to hospital, there was talk of it coming from Helston and being at least half an hour away. At some point during all of this, I rang Teresa to let her know what had happened. I told her all I could and said that once I knew where they’d taken me, I’d let her know, and would she please contact work at 9am (this was about 6.50am).

Why did I worry about work? Simple, work has a process and the ‘rule’ is you ring in to report your absence; I was going to be absent and I needed them to know. Of course, they wouldn’t be worried about me obeying the rules after such an accident, but I NEED to follow rules and that’s the rule so that’s what had to happen. Teresa knows this and didn’t argue with me despite wanting to get straight in her car to be with me asap. Just because my needs don’t seem to make sense, it is important to accept they do to me. I was concerned all the time I was in casualty until Teresa confirmed to me that the office knew; if she’d decided it was unimportant, my stress levels would have rocketed.

Rules matter to an autistic like me and even at a time when common sense says, ‘don’t worry’, I will worry and the best thing to do is NOT to tell me not to worry, but to respect the worry even though it makes no sense (to you).

The ambulance crew decided they didn’t want to leave me sitting around waiting for the Helston ambulance and so, despite the fact that it added a long time to the end of their shift, they would take me direct to Treliske (Truro). I can’t remember how much I said to the crew, but I do know how much I appreciated the care they took, and the priority they gave to my health over any inconvenience to themselves.

At some point during all of this, the police arrived and asked a few questions, brought in a breathalyser, which was fine by me, except it was broken so they never actually used it. They got most of the details from the ambulance crew, so I really had no great contact with the police at the time.

I was offered morphine but as I dislike painkillers intensely, I declined; as it turned out, my blood pressure was far too low to be given morphine anyway. At the time, the pain wasn’t that bad, but they organised Entonox (also known as ‘gas and air’) in case I needed it. I didn’t feel I was about to give birth, and thought I’d be ok, but I said thank you anyway. However, during the drive to Treliske I was extremely grateful for the happy gas, it made an unpleasant journey comfortable.

Throughout all this, I kept Teresa up to date by texts, and I gather from her that on the local tv news there was a note that the Long Rock roundabout was blocked by an overturned vehicle. I’m not sure that’s how I’d really like to appear on television.

Treliske, like most A&Es, is incredibly overworked and is as notorious for ambulance crews having to wait to check people in as any other. Fortunately, at the time I was going, 7.30-ish, the ambulance only used their nee-naws once, that I remember, to move traffic out of the way, and I sailed straight into A&E on arrival. I did have to change beds from the ambulance one to a hospital (A&E) one, but I was still mobile enough at the time to be able to do that because I was still sitting up. They then wheeled me into A&E proper (Majors 1) and into a bay. There was various testing of blood pressure and temperature but by now the pain was starting to grow. There was a bit of assessment, I’m not sure by who, and I asked for something for the pain. I got paracetamol and ibuprofen.

Hmmm, I thought, when I broke my leg they thought that would be enough. It wasn’t then, and It was even less effective this time. I texted Teresa to tell her I was at Treliske, but the message didn’t seem to go, no signal, though it turns out signal came and went, and it did actually go. The consultant wanted an X-ray of my shoulder to confirm the broken collarbone and the X-ray department was nice and quiet at that time of day.

By now the pain was excessive, unbearable, and was laughing in the face of the paracetamol and ibuprofen. Fortunately, they could do the X-ray while I was still on the trolley and in my semi-seated position. They did however need me to lean forward while they put a plate behind my back; I found it necessary to express myself in Anglo Saxon at that point: not at the staff, they were incredibly helpful and understanding, but it was quite clear that me and pain were not going to be best buddies today, and I think pain took offense at that and wound the ratchet a bit tighter.

After this, I was wheeled back into the bay where I enthusiastically asked for some painkillers that would actually make a difference. The doctor came up after some time and said that wouldn’t be a problem as I clearly had a major injury!

It still took time for the painkiller to arrive and I heard a call-out for the ‘green key’ which I had deduced must be the key to the ‘fun medicines’ cabinet. When it did arrive, it was a cup of an odd-tasting but not unpleasant liquid. This was Oromorph, something I would get to know very well over the following days and me and Oromorph were definitely best buddies. The consultant told me that yes, my collarbone was broken, and they were pretty sure some ribs were as well, and there was some stuff they were not sure about, so they were going to do a chest X-ray.

The Oromorph was working wonders with the shoulder, but was doing absolutely nothing for my bottom which was in extreme pain because it’d had the rest of me lounging around on it in the same position for some hours. The chest X-ray was not long in coming and leaning forward for that plate wasn’t so difficult this time.

The verdict on the chest X-ray was that yes, there were four broken ribs, also on the righthand side (2, 3, 4 and 5 if anyone is interested) and the consultant said that he still wanted some more information as he wasn’t quite sure about some stuff and was going to organise a chest CT scan.

Oh joy, I thought, there is always a massive queue for the CT scanner, but it was still early in the day and I hoped it wouldn’t be too long. I have no idea what time it was at this stage, I’m pretty sure Teresa arrived about 10.00 (having left home immediately after speaking to the office) and I think I’d been waiting for nearly an hour up until then. During this time the pain had come back but I hadn’t seen the nurse and I didn’t want to bother anybody, I understood that they were all very busy. At five past nine I said to myself, I’ll wait until ten past nine and then I’ll press the buzzer to call for a nurse. I desperately hoped I wouldn’t have to, but the pain continued to get worse and I felt very alone. I had told Teresa not to rush over but I bitterly regretted it now. So, at 9.15 I did push the buzzer and asked the nurse to see if she could organise some more painkiller. My shoulder was in agony, my bottom was in agony, I just wanted somebody to turn out my lights.

Teresa arrived about 10.00 but the painkillers still hadn’t pitched up, so we pushed the button again, and again nobody turned up. After a while Teresa suggested she go and see if she could find somebody and I was really pleased she was there to help. At the time I was sure I had already asked her to, but it is quite likely I asked her ‘in my mind’ and expected her to mind-read (see theory of mind, a classic autistic problem). She found a different nurse who organised some more happy-juice, which was very welcome. I then asked the same nurse if it was possible to find out how much longer the CT scan would be, and she said she would. She returned a minute later with the porters ready to take me there and off to CT we went.

It was, as it happens, the same CT unit that I’d gone to with my smashed-up ankle five years ago, so at least it was familiar territory, something which, as an autistic, I found extremely reassuring. The CT people needed me to be lying on the CT bed and by this stage, even with the Oromorph, I couldn’t move my body, the pain was just too intense. And so, bless them, with the aid of a board and a sheet and nurse-power, they moved me from my bed to the CT scanner. Unfortunately, I had to be lying down for this and that really wasn’t any fun.

It turns out the CT was ‘with contrast’ which meant a canula was fitted to my left arm so that I could be injected at the right moment. Fortunately, I knew what contrast was, but I didn’t have any idea what it would feel like. They plumbed me in, organised me, and the scanner told me when I had to stop breathing, and then could breathe again. That was very hard to do, given the pain, lying still when you want to scream in agony is not easy. And so, two ‘sighting runs’ without contrast, each taking 15-20 seconds, then the final scan run. I could feel the contrast being injected (automatically) and it had an odd ‘taste’. I could also feel it in the area of my crotch, which was very strange and unexpected, but, apparently, quite normal.

And that was that…

They got me back onto my trolley, but left me much flatter. This took a lot of pressure off my bottom. For the next hour or so, that was the happiest my bottom was going to be. Even now (20 days later, at the time of editing) it is still not a very happy bunny, but I can at least move around a bit now.

I was wheeled back to A&E for the third time, but now I had Teresa with me and I felt so much less isolated and trapped. It wasn’t long before the consultant appeared again and said, yes you have a broken collarbone, yes you have four broken ribs…that was the good news. He didn’t say ‘that was the good news,’ but when he said ‘but’ it was clear there was bad news to come. The X-rays had revealed a growth on the kidney, enlarged lymph nodes in the lungs and (as it happens) the same shoulder that had the broken collarbone. Nobody mentioned the ‘C’ word but he said that they were getting someone down from oncology to see me. Now since oncology is the department that deals with cancer, it wasn’t difficult to add one and one and get two. At the time, I think, Teresa was somewhat in shock at the news (she says that’s an understatement) but my rational brain was fully in charge. This sounded to me like cancer with a number of secondary’s, which sounded like it was well-established and spreading. That was not a good prognosis to me. However, there was no emotion attached, just an “oh, ok, well now I know”.

As for the shoulder, as expected the treatment is to put on a sling, take painkillers, and put up with it. Or, ‘pain management’, as it’s known. The consultant said we’d be moved somewhere for that to take place, then left us with the curtain closed. We did then discuss the meanings of what he’d just told us and we both understood that it was worse than it sounded (if that’s possible).

Whilst, at this stage, I was in no fit state to do anything, I was metaphorically climbing the walls and just needed to get moving. I hadn’t actually done a wee yet and whilst I felt no need, I also didn’t fancy any of the possible ways of achieving this whilst still immobile. It’s a control thing…

It then occurred to me that the consultant was most likely neurotypical and thought we needed time to deal with the emotional shock he had delivered. Clearly he’s not dealt with this autistic before. There is no emotional shock (that may come later). Right now, I wanted facts and to resolve practical problems. Interestingly (and luckily for me), although Teresa is most definitely not autistic and did feel the emotional shock when then news was delivered, her own coping mechanism is to roll up her sleeves and focus on the practical stuff.

So, I asked Teresa to go and find someone so we could get on with sorting out my shoulder and ribs because that’s something we could be getting on with. She did; he did; and so came the next change of beds.

The first day, afternoon

I was wheeled from casualty to what I read as ‘The Clinical Depression Unit’ but was in fact the The Clinical Decision Unit. I was allocated to a room and we proceeded to the ‘how to get me from a casualty bed to a clinical decision unit bed’. This seemed to be overly complicated and confusing. My bed was wheeled into the room where their bed was and there wasn’t much space to move between them. Up until now, all transfers had been by ‘board and sheet’ as I was unable to get myself to a sitting position without significant pain. However, the staff in the CDU decided I was clearly making too much fuss and if they pushed and shoved me to a vertical position, I could transfer myself between the two beds. I was actually told, ‘We don’t pander to people in here…’ Personally, I would have liked a less assumptive approach (that I was being feeble, or a wimp) but my objective for this move was to get vertical and mobile so, what the heck, I thought…

I asked for some more Oromorph to help manage the pain and for one of the nurses to provide support to my left arm so I could pull myself up. Again, I don’t think this is how the staff wanted me to move but I knew what I needed. After a few test pulls, I got myself to a sitting position and yes, it did hurt! As I was sitting there, I became aware that I was about to faint – and I told them so. Again, I got the impression that I wasn’t doing things how they wanted things done, and that no I wasn’t going to faint, I was just making a fuss and they had no time for that…

But I did faint and the next thing I remember is pain in my right shoulder as I hit the bed and, as my legs were pushed back onto the bed, even more pain. Somehow it felt like the fainting was my fault, but I did warn them.

So, attempt number two and I got myself to a sitting position and told them to just wait and let me gather myself. Once gathered, I asked them to lower the bed so my feet could touch the floor, again I used one of the nurses as a bracing point, and pulled myself upright. I could now rotate 180 degrees and sit down on the other bed. After all, they were only about two feet apart.

The casualty bed was removed, a foam sling fitted, and I decided that lying down again was the last thing I wanted to do, I wanted to be up and moving. By now, the staff seemed to have decided that I wasn’t a wimp after all, and did know what I was doing. They got a chair for me to sit in and that’s where I settled for a while.

At no time in all of this did anyone display any understanding of the issues of hypo and hyper sensitivity (to pain) that autistics often have, despite me telling them that I was autistic – and despite the fact that a board in the corridor declared (with photos of the individuals concerned) that the hospital had an ‘autistism team’, however that’s for children. Apparently autistic adults don’t exist ☹.

In this area I feel that there is a need for more training and understanding. I could and did stand up for myself, but that’s not always the case and sometimes a wimp is actually a very brave person and a brave person may have no idea they are damaging themselves because they can’t feel the pain!

As for ‘processing delays’, I was lucky to have Teresa with me!

From the chair, I dictated to Teresa a number of text messages to be sent to various members of my family, so they knew what was happening. I then just wanted to start moving. Using Teresa’s shoulder for stability, I walked around the Casualty unit and for the next four hours, I did this over and over again. Every now and then I had a word with the nurses to try to find out what would be happening next. The original consultant had said that they had expected to keep me in overnight and would only let me go today if I was clearly mobile, eating and looking after myself – and the pain management was working, and maybe if oncology wanted me to, stay for some of their tests.

I declined a morphine pump (more powerful than the Oromorph) as that was something I could only use in the hospital and I wanted to prove that I could manage at home. We agreed that they would only give me the same drugs I would be taking at home for pain relief. So back and forth and back and forth I walked, initially with Teresa’s support, but after a couple of hours she fetched my stick from her car and I used that left-handed and did the walking on my own.

During my walks I was able to convince the casualty consultant and the nurses on the unit that the only reason I would need to stay was if oncology were able to do testing over the weekend. It took forever to get the confirmation that they wouldn’t but eventually we did get it (by about six pm) and I was primed for escape.

Hospitals and all that ‘stimulation’ (noise, activity, the need to communicate and process complicated issues) are not good places for autistics and getting out of there was very important to me.

Food

The whole time I was there, every hour or so I was offered a cup of tea and a biscuit, both of which were very welcome. The same happened in the CDU except, apparently, I was considered an in-patient so was offered a sandwich for lunch and a selection from the menu for tea. During this time, no wee was apparent but around four p.m. I was mobile enough that I felt I should give it a go. I asked Teresa to come in with me to provide clothing support, which she duly did. The wee bit I could manage myself although it really wasn’t worth the effort, despite all that tea. I suspect my body was still in shock and the digestive system was on strike.

I was able to remove my tights now, they’d been laddered as I extricated myself from the ambulance, and I wanted them off. My legs were freshly waxed and I was happy to have them out and about.

Oncology

At some point in the afternoon an oncology nurse came down to discuss what would happen next, which seemed to be a biopsy on Monday, if it wasn’t going to be over the weekend. Getting hard information out of them was nigh impossible.

Escape

Having been given the release, Teresa went off to collect the car and the nurse ran through the exit tests with me. They had been taking my blood pressure all day long and it had been bouncing around all over the place. When she checked it, it was too low to release me.

I was having none of this, so I went for a couple of quick walks up and down the corridors and we repeated the tests. I was now fine.

Was that altogether right? Given the way my blood pressure floats around, yes it was, and I was clearly completely mobile, coherent and stable on my feet.

We were given the discharge letter and the prescription for all the painkillers. Bizarrely, I couldn’t fulfil the prescription at the hospital because the patient pharmacy was closed!!! Fortunately, there is a 24-hour pharmacy at Boots in Hayle so we could call in there on our way home.

The first day, evening

It wasn’t a fun journey home. Teresa had to drive very slowly and carefully because I felt every bit of grit on the road and I was absolutely terrified of traffic and kept shouting ‘Stop,’ whenever I felt it was too close – ‘close’ meant I could see it, even if it was two miles away. I’m never a good passenger, but I was an appalling one that day and poor Teresa was in enough of a state with everything that had gone on, without me seeming to criticise everything she did during the journey.

But we made it home. What to do when we got there was an interesting conundrum as I needed to find a place to be comfortable and to sleep, and lying down was out of the question. In the end we nested cushions in one of the armchairs, set up a footstool, and I settled there.

At some point during the afternoon, Teresa had picked up a bottle of something for me to drink (Sprite) because I knew I was very dehydrated and I couldn’t face water. Once I’d sat down at home, I felt it likely I could be sick. Both of us having been through a bout of gastric flu only a couple of weeks previously, we were prepared and had medium and large sick bowls to hand. I opted for the medium. Whatever I had for tea that evening at the hospital, plus the sprite, plus whatever should have been turning into wee, but clearly hadn’t, came back up. And up. And up. The medium bowl was not big enough. But, better out than in and I felt a lot better afterwards. That was the first and last time I was sick.

I really don’t remember much of that night, or indeed the following two days. I know Teresa slept on the sofa, for two reasons. One, so that she could help me whenever I needed help because the pain continued to be quite severe and two, she didn’t think she’d be able to sleep upstairs in our bed while I was downstairs like this. Indeed, that was the case for the next two weeks until I was able to sleep on the sofa instead of a chair. My nights were punctuated by between 30 minutes and 2 hours of sleep, and being woken up by the pain in my coccyx, all the while with the television in the background. Teresa hates having the television on at bedtime, the flickering lights and the sound disturb her sleep, but I find it distracts me and stops me worrying about the fact that I’m not asleep. The truth is, I spent that night and the following two days and nights drifting in and out of sleep, being awake and alert, but about as much use as a wet dishrag.

Postscript

There was no gender recognition at the hospital, and a lot of ’Mr’ Bottomley, they just never asked – you’d think the floral frock (well, the accident did happen on Floral Friday) would be a hint that they needed to be a bit careful…

Nor was there any understanding as to how differently autistics experience pain, noise, lights, smells and all the rest that is part and parcel of a busy hospital.

I was incredibly lucky to have Teresa with me most of the time and to be strong willed and self-aware enough to cope. But, I’d have liked to have seen more awareness and I will try and follow up with the hospital to see if there is some practical training that can be done.

That said, I cannot praise highly enough the members of the NHS I encountered, from the ambulance crew onwards. Sometimes it took a while for staff to get used to the idea that I knew what I was doing in terms of deciding what I needed, but they all did eventually and, despite seeming to be unaware of my needs as an autistic, they respected me as a human being albeit, I suspect, more strange than the average patient ???? and I am very grateful for the care I received from an NHS that is under far too much pressure.

That was the first day, once the weekend was over we were scheduled to head back to Treliske for the Biopsy, but that will need to keep for another letter, even with left handed typing and a hand held mouse, writing is very tiring, despite having dictated the bulk of it.

Letter from Treliske Fri 27th October 2017

No, I’m not at The North. Yes, I am at Treliske (The Royal Cornwall Hospital in Truro). This is just a short letter to explain my silence for the past two weeks and that changes are afoot.

On my way to work this morning I was on Long Rock roundabout and a Mercedes Sprinter, coming from my left, decided not to stop (not my fault).

Poor Blossom (my Landrover Defender) is a right-off. I wasn’t written off and whilst my injuries (broken collarbone and four broken ribs) are unpleasant and painful, they will heal.  All on the right hand side so I am reduced to doing everything with the left hand and dosed to the eyeballs with pain killers. They say collar bones and ribs hurt, we are way beyond hurt :-).

Fortunately, or unfortunately depending on your point of view, the X-rays they took for the broken bones revealed there was much more going on in my body. Subsequent CT scans and a biopsy indicate cancer in my kidney, lungs and elsewhere. No symptoms and without the accident we’d never have known there was a problem. I’m due at the oncology unit on 22nd November to hear how bad the news is and what, if anything, they can do. I’d love the idea of “they caught it early”, but that doesn’t seem to be the case as it’s spread about somewhat.

I suspect Treliske is going to be my new home but I hope I can make the odd return to the North.

These letters won’t stop and me being me, they will be open about everything that is happening to me, but their publication may be even more random than usual.

There is a MUCH longer version of this letter with a lot more detail, particularly about how hospitals deal with autistic, non binary gendered individuals, it has been and will continue to be, an interesting journey.

Some of what will follow in subsequent letters may well shock you, especial my reactions to what is happening to me. You’ll not get a better chance to understand just how different, as an autistic I process the world and especially emotion than sharing this journey with me.

This is is what it is and I will walk whatever road I find myself on, for as long as I am on it, until I run out of road.

Bugger!

The Bean, Treliske, Friday 27th October 2017