When in doubt what to do with yourself when things look grim? Hmm? Any ideas? Socialise it seems.

 Since I last appeared I have been trying out my new chemo.

From day 1-21 no real side effects.

The day I stopped on Day 22, my hair started falling out in clumps. That's the definition of ironic.

It looked like a brown labrador had been sleeping in my bed. Oh well if vanity was an affliction I suffered from then I would topped myself a long time ago with all the psoriasis, steroid face, pressure sores, losing a nut etc.

So I am going to get my head shaved and go full Walter White from Breaking Bad. I'll look out for the Heisenberg hat n'all. Even my beard is on shaky territory. Apparently eyebrows aren't affected. What a bonus.

The pain is still bad, but I am dealing with it by starting my own opiod epidemic. I always stupidly  thought taking painkillers was a sign of weakness and I was a bit of a cowboy, trying to tough it out for 5 years by grimacing a lot.

That was until the pain went to DEFCON ONE (That's the most serious btw) and I realised what proper pain was. It was when I couldn't think straight and was sweating like only male Hollywood producer at an feminist conference.

Look there is a positive flipside to all of this. My friends and family have descended en masse and I have seen my Mom and sister Kim from Australia.

My uncle and aunt are coming over from Botswana for a week tomorrow.

My sister-in-law Gaylyee came for a week from Spain. My cousins Ryan, Ross, George, and Katie and their other-halfs have all been around loads. I know I've forgotten someone. If I have, remember I love you and I blame chemo brain for my forgetfulness.

 That list isn't counting numerous visits from good friends, people sending food so my poor wife doesn't spend her life cooking, generous gifts and loads of messages and support.

No matter how bad the situation, and you really cannot polish this particular turd, I may not have the best luck, but I have the most supportive wife, friends and family I could wish for, and that's enough for me right now.

Love to you all.

Our NHS charter: Come in sick and leave sicker

Hello people

I hope this finds you all well. Thanks for all the messages while I was in hospital.

When I last left you we were in the middle of our trip to Scotland. The doctors had just told me that my disease progression had accelerated and I needed immediate chemotherapy. We had already booked a holiday and were told it would be a good idea to just go on our trip, as the future was a bit murky.

So after a quick 10 hour drive we spent 10 wonderful days in Edinburgh, Lochgilphead and Stirling. It was well worth the trip, but was very painful and uncomfortable. I started my therapy the the day after we returned and was pretty sick from the begining and was suffering from severe sweats and pain throughout.

Unfortunately all of these symptoms culminated in a trip to A&E at St. Georges Hospital for 3 days with a suspected infection and severe vomiting. They scanned me and thought the IV antibioics were causing the technicolour yawns so kept changing them. They discharged me and I came home and promptly got worse the next day. I couldn't speak and was totally disorientated and was rushed to hospital, where CT scans showed there was pressure on my brain. This is called hydrocephalus and isnt't a good sign. Google it, if you have the energy.

This pressure is caused by excess spinal fluid which is a result of the tumour growth, which in turn was causing the sickness and temporary madness.

I can just about cope with the pain and constant discomfort, but when your brain goes, then you start to worry. It is very strange knowing what you want to say, but being unable to say it coherently. They gave me a huge course of steroids to reduce the swelling and booked me in for a range of MRI scans.

The problem was that when I was admitted the second time, I was left on an A&E trolley for 12 hours during which I was in and out of conciousness. Because of this time spent on a flat hard surface and because I was on an MRI trolley for 3 hours a few day later, I now have pressure sores on my sacrum and I am now totally bedbound as the skin and flesh has broken down.

I spent nearly a year and a half stuck in bed with a Grade 4 pressure sore and managed to recover. We are so careful at home and on holiday,  but after a couple of days in hospital I now have a debalitating pressure sore. Being stuck in bed for that long last time was a form of mental disintergration I don't know if I can repeat, I am happy that it is already showing good signs of improvement thanks to the efforts of my darling pressure sore-whisperer wife. What a job, eh?

We are obviously upset and p**sed with us and the hospital for letting it happen, because I have to lie on my side to take pressure off my butt, which hurts a lot with this tumour. It also means I cannot get up and go anywhere or do anything for longer than a few hours. I also have to change position every few hours and this means Jay cannot get a break or even sleep properly.

On Monday we met up with the oncologists and they told us what the scans have shown.

There is now significant damage to the top of my spine and neck, as the disease has progressed considerably from the scan of 3/8 till the last one on 29/9.

I am now onto the last resort in terms of treatment. I have started Etoposide chemotherapy and we will see if that makes a difference. Side effects are bone marrow loss, hair loss and the usual infections, but I have no choice but to take my poison and hope for the best.

We have always known that this would come eventually, but it doesn't make it any easier. You have to roll with the punches and take each day as it comes. I meet the oncologists next Monday and I'll have a better idea whether the treatment is doing anything positive by then. My mom and sister are out here from Australia visiting us which is great and I am slowly getting my pain medication working for me, as I am have been so uncomfortable recently.

Thanks for all the messages as always and take care.

Queasy Rider

Greetings all,

My throwaway comment about this year being better than the last has gone for a ball of ****.  It seems as if it is much worse than anyone expected, a bit like Neville Chamberlain telling the British public to not worry too much about the Nazis, as they just love dressing up, brass bands and marching.

Terror and disasters seem to be closer to home than ever, and hopefully the great and the good will make a concerted effort to alleviate people's problems. I just can't work out who the great and the good are yet.

My darling wife continues to expand the yoof's grasp of the English language. Things took a strange turn a few days ago, whilst she was engaging in an activity with two of her pupils.

"Which word rhymes with the word 'back'?", she said.
"Sack", one piped up.
"Crack", the other added.

Ah the old back, sack and crack male grooming regime. I can only hope they are too young to see the funny side of it.

We recently went to a diabetes foot clinic as my right foot is constantly a worringly purple colour. We were in the waiting room for ages and I was being my usual impatient self.

A nurse walked out and screamed "Alice Diaz!"
Again "Alice Diaz"
I looked at Jay and shook my head.
Bloody Alice Diaz keeping me waiting I thought to myself.
Jay whispered that it was probably me.
Of all the bastardisations of my lovely but unique surname, Alice Diaz has to be the worst. Instead of Allardyce, I have been called A Lard Ass and Acid Arse before.  So of of course Alice Diaz was indeed me, and I gave the nurse my most withering look as I wheeled past. My foot is fine in case you were wondering.

Recently I have been in excruciating pain and managed to get an emergency MRI on my birthday. Magnetic Resonance Imaging is the gift you give to the man who has everyhting. When my pain levels are this high it is always a bad sign.

We went in to the Marsden last Monday and waited for the news. The first sign of trouble is always the sight of the head oncologist coming into the room.  The poor man must be able to see the despair and dismay his patients exhibit whenever he walks into a room. If it is good/average news then they always send in the Registrars or other minions to tell us what's going on.

So the sight of the El Commandante, Dr. Saran, made us both extremely worried.

The actual tumour has grown a bit, but the main concern is that the scans have shown significant signs of change north of the tumour including swelling, which would account for the pain in my sides, back and neck.

So things are not looking so good. I am immediately back onto high doses of steriods after spending months reducing them and gradually losing weight. They also have to start me on chemotherapy treatment as soon as possible. This is where it gets interesting.

I was given three options for chemotherapy:
A. Chemotherapy that has a high percentage (10%) of causing permanent irreversible hearing damage. As simplistic as it sounds, I couldn't bear to lose my hearing, as music is one of the few things that has kept me happy and sane during this little adventure.
B. A course of Avastin that costs between £60,000 and £90,000 for a year, including all blood tests and administration. It is not funded by the NHS as it only adds 3 months on average to your life expectancy and is therefore not seen as a cost effective treatment.  I always wondered if there was a real price on human life and that is it.
C. Something else I have tried 6 years ago. I had stopped listening by then.

When your choices are this bad, the only setting I have is my default maximum denial setting. So I told my Doctor that I had a holiday to Scotland booked and we all agreed we would worry about me 'elf when I returned.

So we drove up to Scotland last Thursday and spent a couple of days in Edinburgh seeing our friends Glynn and Anita, who treated us to a lovely lunch at a restaurant at South Queensferry. We also met up with our mate Ryan at a seafront mall called Ocean Terminal which somehow contains the Royal Brittania.

As I wheeled around a corner of the mall I saw an enclosure containing some huge fake ferns and foliage that interested me. On closer inspection, the foliage moved to reveal a huge mechanical T-Rex towering over me. I screamed like a six year old. One of the problems with being in a wheelchair (No.675) is that you have a tendency to never look up, thereby giving dinosaurs the opportunity to frighten you.

We are now staying in a cottage in Drimvore near Lochgilphead in Argyll. It is really beautiful and quiet here and the air is so fresh. The cottage is fully accessible and is really comfortable. And I have enough morphine to sedate a drunk herd of Alt-Right protesters. My ever practical wife made me look up the nearest hospital just in case.

We are off to Oban tomorrow to try and find some decent seafood and have a birthday meal. That is the great thing about having our birthdays so close together, as you can save a wee penny or two by having a combined birthday dinner. So the scallops had better start shivering as we are coming hungry.

I meet with the Doctors on Monday 21st August and choose my posion for the forseeable future. So once again I rejoin the magical roundabout of treatment and once again the future is uncertain. Until then I am going to re-read Cormac McCarthy books and ponder my existence. I am also reading a book written by a pastor that attempts to answer questions about Christianity that sceptics have. I am a sceptic, but I also have an acute fear of missing out. Jay is loving the countryside and taking some incredible pictures as always. She is also birdwatching and exploring the Scottish flora and fauna. Be afraid Instagram, be very afraid.

At least it is serene and peaceful here and there is no phone signal. I am working on developing a death-ray I can send down the phone to the various imbeciles that cold call me every day about non-existent PPI claims and imaginary car accidents they think I have been in. In the meantime splendid isolation is one way of not letting the b***rds grind you down.

Peace out.

Sticks and stones

Greetings earthlings.

I hope this finds you all well.

Let us hope this year is a better one than last year. It is highly likely it will be, but having a fatalistic attitude has served me well down the years. My expectation levels are always reassuringly low, so nothing comes as a surprise anymore.

I often see disabled people on TV who are doing amazing things and fighting adversity. They are inspirational and often exceeding what we thought was possible.

I don't fit into that "can do" category.

Instead I keep on discovering things I can't do.

For those of you who know me too well, I am a bit retentive. I hate mess and I am constantly tidying up, or more realistically, stuffing drawers and cupboards to give the impression of being tidy.

Anway this brings me on to "Things I cannot do in a wheelchair No.1435." I recently managed to burst a bag of split peas when trying to make a lentil curry.

I learnt that I cannot pick up individual split peas off the floor, either with my hands, or with a reacher. This took me a painfully long time to realise and was accompanied by horrendous industrial language. I spent the rest of the afternoon with the mess on the floor, taunting me, before I decided I'd leave it for my poor wife.

Another thing to add to the "Things I cannot do in a wheelchair" list. Ski-jumping and Ballroom Dancing are not things I'm resentful about not being able to do, but not being able to clean up the kitchen floor seems to have sent me over the edge.

I have been complaining to various medical professionals about a burning sensation in my side. This has gone on for about 3 years and I have been prodded, tapped and had an x-ray in my wheelchair. In the meantime I've been using hot packs, painkillers and oils to relieve the pain, all without much joy.

I was referred to a Gastroenterologist at the Royal Marsden in Chelsea as my stomach has been destroyed by steroids, chemo and radiotherapy and of course I had my mystery pain. I finally got to see him and was sent for tests and scans of all descriptions.

I don't think I've ever had so many weird and wonderful tests. This included a version of Orifice Countdown, where your only options are a big one from the top and a little from the bottom. For those of you who have no idea what I'm talking about, this involves what looks suspiciously like two garden hoses being shoved where they have no right to be. The probe down my throat was especially brutal on the way out, and felt like I was regurgitating a snake.

I now know what it feels like to be a rotisserie chicken.

I was also informed that having x-rays in a wheelchair are pointless so two other hospitals obviously have no idea what they are doing. The Marsden in Chelsea did it properly by laying me flat and found out that I have some pretty serious intestinal blockages.

They followed this up with an ultrasound and found that I also have many many gallstones.

I am also having two Radio-Isotope Nuclear Medicine scans to complete the tests and will be slightly radioactive for a few weeks. The letter says "avoid children for 2 weeks in order to prevent exposing them to harmful radiation." Hopefully I'll get the summer glow.

So hats off to Royal Marsden Chelsea for actually doing a thorough job and I feel like I am getting somewhere. Essentially I am full of c**p and an assortment of stones. Who knew. I'm just sorry it took so long to get the right tests done.

Whilst I am on the topic of missed medical problems, I was also told recently that I have Type 2 Diabetes. All the pin prick tests I have been having when I see the oncologist are not the most effective way of testing for diabetes. My thirst was ridiculous and I was constantly tired so I asked for a proper blood sugar test and it showed very high blood sugar levels. Being on steroids for six years has now given me diabetes. At least that is manageable. The ironic thing is we had almost eliminated processed sugar from our diets ages ago because we watch loads of health-paranoia telly and thought processed sugar was the devil. I was a few years too late it seems.

Apart from the blockages, stones and diabetes all is well. I am hoping that in the next couple of months I'll start to feel better.

Jay is well and has been creating a variety of writing exercises and grammar booklets for her pupils. English grammar is pretty complicated and it appears I have been guessing my way through the English language my whole life. I cannot believe how much 11 year olds are expected to know.

They are in safe hands with Jay as she is determined to help them as much as possible.  Plus drawing dragons once in a while in a while takes their mind off the past perfect tense and how to spell words most adults never use. Nice one government - whoever thought the best way to improve literacy amongst 11 year olds was to try and make it impossible for them to pass exams and be expected to be Dickens needs his or her head examined.

We recently went to a local borough Home Ownership day  after many years of renting our place and I spoke with various mortgage brokers. The first guy thought I was joking, the second was very grave and respectful and the third looked at me like I was mad. It turns out that lenders aren't very keen on the terminal illness thing. I did try and point out that technically I should have been dead 5 years ago, but they weren't impressed.

It looks like I'll have to invent something or design an app for a phone to make any money. I have no idea how to become a tech millionaire.

Have a good summer or winter depending on your hemisphere and I'll keep in touch

Love to you all.
Bruce