Letter from the North

From explosive to restricted, Poo is ever changing – 08-Sep-2018

Why a picture of my scooter on a ramp? Well, first GWR require you to have a “permit” to take a scooter on their trains and the permit requires a Passport picture of the scooter!

Also it shows off the ramps I use so that I can get the scooter into and out of Angelique single handed!

Sat 08-Sep-2018  

I felt great when I woke up today but then I had breakfast and after that felt tired, sick and lousy, so a day of taking it easy and catching up on blogs. Not the editing polishing phase, but the just getting words down so I don’t forget what I want to say. 

Shoulder pain is building for the third time, this is becoming a habit :-(. Thinking about it, only twenty-four hours ago I pushed my shoulder as far as I could during physio; I suspect that, since all the other possible causes on previous occasions seemed to have occurred around a day earlier, maybe there is a delay from cause to effect and I can pin it down this time to my shoulder having to do work it doesn’t like. 

I’m not sure if I’m happy or sad about that. Will monitor. Coccyx also causing a lot of pain too. 

Last and certainly not least, the diarrhoea is doing its thing this evening and drugs are called for to slow it down. 

Sun 09-Sep-2018  

Slept long again, it’s definitely taking time for me to recover from that Sheffield trip. 

This afternoon Teresa and I went blackberry picking, close to home (five minutes walk, if that) and yet I was so tired that I sent Teresa home ahead of me as I was walking so slowly; I got home (about fifteen minutes after her – she really didn’t like leaving me but I insisted!) and crashed out for two hours, moving at 5.00 pm and up at 6.00 pm. It was time for tea and yet by 8.00 pm I was desperate for sleep once more, and so to bed. Two hours later, I was still wide awake. First time that’s happened for a long time. I suspect my nap, and bedtime were too close, even though I felt ready to sleep. I guess we are seeing some of the differences between fatigue and tired: sleep cures tired, it doesn’t cure fatigue nearly so well. So, the sleep helped the tired side but the fatigue side only a bit but not enough but by then I wasn’t physically tired enough to sleep although that’s what it felt like. 

Oh well, cup of tea and then out I went! 

Mon 10-Sep-2018  

Awake at 5.00 am and in my office by 6.00 am. I’m still tired and expecting to have my afternoon nap after lunch! 

In one of my recent Blogs, it was news about the progression of cancer in Rachel Bland that triggered a rant from me about being open about cancer.  

I wondered what had happened to her, found out and I posted the following to Facebook: 

I commented then that I had seen in the news that she only had a few days to live, I hadn’t seen anything since so I looked. She did indeed only have a few days. This article was released on 5th September. I have no recollection of seeing it or hearing of it, however we were travelling to Sheffield that day so I may well have missed it. 

It is good in a way that this article shows pictures of her healthy, I can see some of the newspapers show her looking a lot less well and a part of me regrets that the good AND the bad are not shared equally. I for one realise that I will not look radiant when I am close to death, chances are I will be in a hospital bed or hospice or maybe at home and “waiting”. 

No matter how hard it is to stare this bloody disease in the face and no matter how many tears I shed, it isn’t going away and I’m not shutting up. 

Bean 

Hmmm, as I read comments on Facebook, I wonder what peoples’ perception of my goals are? 

My experience of cancer before having it was (in some respects) the same as my experience of autism and gender before I started talking about it. It’s there, some people talk sometimes, sometimes they talk cobblers and sometimes they make sense. 

I write about how this affects me. I’ve been around for quite a few years and seen an awful lot of people try to deal with all those issues, myself included. Yet the world outside of those experiences seems to not show a lot of interest. 

Whether you are being open about autism, gender or cancer, you are considered “brave” for speaking out. If you die, then you were the best brother, father, husband, wife, cousin, neighbour, … 

I know that the one thing I would like to be said at my funeral is that I was not “perfect”, not “wonderful”, not “brave”, not the “best father, husband, worker, …” 

I know am NOT any of those things and anyone who knows me knows that too. Why should death change me into a saint? I don’t want anyone to remember me through rosy coloured glasses. The pressure in society to remember people this way tends to generate a polarised view of people – saints or devils. Rarely is any of us either, we can all be both at times. 

That is why I don’t like the “brave” word or anything like it, we are just ordinary people and the more those who speak up are labelled brave the more those that don’t are left feeling that they aren’t, and that’s not helpful. 

By the same token, there are bad people and good people with autism; bad people and good people who are gender diverse; bad people and good people with cancer, …, something that those who use a subset of any of those groups to identify the nature of everyone in those groups could consider. 

I am very aware of a group of people down here in West Penwith who seem to believe that they can speak authoritively (and aggressively) on matters of gender diversity using only extreme examples to make their point. Whether that is for or against doesn’t matter.  

There is a saying in the autism world – if you’ve met one person with autism, you’ve met one person. The same is true for gender diversity and just as true in the world of cancer there is no ONE breast cancer, renal cancer, lung cancer, …, every cancer, despite gross similarities, is different in every individual. 

I believe it’s really important that we meet and treat people where they are, not where we think they are or we think they should be. I also think we should meet them where WE are not where we think we should be, if cancer scares us (whether we do or don’t have it) then say so, don’t pretend, that’s not healthy for anyone.  

I’m sure there are many wonderful people who die, but I wonder if any of them are the perfect humans being you read about in the press or see on TV or hear on the radio, never having a bad day or uttering a cross word! To hold someone up as the ideal for how one copes with death is to set a bar too high for most of us to reach, and we end up feeling like failures. 

I’m not a failure because the incessant poo drives me nuts, I’m not a failure because I can barely drag myself through the day. Nor am I brave for carrying on regardless, it’s just what my life is, it is NORMAL for me. 

Tue 11-Sep-2018  

Went into the office in Penryn, more tired than I have been when going there and with a sore stomach and shoulder, … When people asked how I was I said “lousy” … 

Came home early and crashed out. It didn’t seem to help, and I woke as tired as I was when I went to sleep 

Wed 12-Sep-2018  

Hmm, I woke almost hourly during the night and every time felt exhausted. I got up at 7:00 am and all I wanted to do was go to bed. I went to my office to work and I still just wanted to sleep, but I needed to get on, so I am focussed on that post-prandial nap 🙂  

Hmm, side of face/jaw getting really painful. Last time it happened (a few weeks ago) I went to the doctor and got some antibiotics that seemed to work. Of course, I spoke to the cancer nurses first, you report ALL problems to them, you never know when they are a sign of cancer or drug problems 🙁 . So, today I rang them again and we agreed that since my scan was on Friday they would amend it to include my jaw. Why? Because that’s one of the places the cancer likes to visit and whilst it “might” be just an impacted wisdom tooth or abscess, it might not be. No point a dentist X-Raying it as they are not looking for cancer so better to amend the CT scan and get someone to look more closely. 

Fingers crossed it’s nothing much – though even if it isn’t, any surgery whatsoever requires coming off the cancer drugs (which restrict healing) leaving existing tumours to grow freely. If it’s a minor problem that might just be a few weeks, but with cancer as rampant as mine, any stop is worrying. As for the worry that there might actually be cancer growth, well, I had a weepy moment and then put it back in its box (though writing about it now a day later and the tears are back). 

Thu 13-Sep-2018  

Booked an appointment with the GP to have another look at the jaw, in case this time they can spot something. It will be nearly two weeks before I go to clinic and I really could do without the pain and discomfort for all that time. Plus, infection of any sort is dangerous with a compromised immune system (the drugs and cancer do that) and you just can’t leave even the smallest problem to “brew”, they turn nasty REALLY fast. 

Doctor doesn’t want to do antibiotics so it’s painkillers till I get the result of the CT scan. After some prodding he felt it was more likely to be “inflammation” of the hinge area of the jaw (there was some proper medical term!), apparently, it’s not unusual and it may be that I am just more susceptible now?  

So, on anti-inflammatory (Naproxen) as it only screws with blood pressure and not the Pazopanib as I thought all anti-inflamatories did, so I need to monitor BP that bit more closely. 

Interestingly (or not) poo seems to be heading in the direction of constipatory! 

Fri 14-Sep-2018  

Scan Day 

No problems, I was in early, they weren’t expecting to do the jaw but apparently “neck” goes up to eye sockets (I guess they mean spine not neck!). 

The scan is also done a bit different: 

Contrast goes in a bit slower so it’s still there for the longer scan time. They do the body and breath-holding as normal (from shoulders downwards) and then the scanning table returns to the “top” and scans my “neck” – from my shoulders to my eye sockets, i.e. the lower half of my head which “should” include the jaw and so hopefully I can get some feedback on that because the pain from my jaw is really becoming quite unpleasant 

Poo continues more constipatory! 

Postscript 

My CT scan was on Friday, that lights the blue touch paper for my results 12 days later (Wednesday 26th September) and the tension is already rising and will only build. There will be some who will say “you can’t change it, so don’t stress”, “it will be what it will be”, …, for anyone who thinks that about anyone in this situation, my reaction is unprintable. Even if I could ignore the light coming towards me from the end of the tunnel, who says that Teresa can, my children can, … 

Whilst I refuse to let it paralyse me, I cannot and will not say that I don’t feel an icy hand reaching out to me whilst at the same time hoping it won’t find me “this time”. Is that a mixed metaphor with the tunnel and the train? Maybe, but there you go 🙂  

The jaw problem adds an extra frisson – yes, I know it is almost certainly benign and just “pain”, it “may” be just the Paz side effect known as “can cause muscle and joint pain” or it may be more cancer. I don’t see how convincing myself it is nothing helps me if it is something.  

My (neuro-diverse) brain does not cope well with surprises of any sort, so making sure that things aren’t surprises is a major “coping with life” strategy that should be well known to any autistic and is certainly not even unique to us. 

So, being prepared for any eventuality whilst NOT fixating on any one (worst or best) seems, to me, to be just common sense. Oh well, horses for courses. It’s still a right royal pain in the ass (whatever its current poo state!) all the same. 

Scanxiety Rules KO. 

The Bean, Pendeen, 04-Oct-2018 

 

 

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