Hot as hell

Greetings people,

I hope this finds you all well and making the most of the sunshine. Predictably, the good old general public has gone from loving the sunshine to complaining incessantly about the heat and moaning about about sunburn. Our local rozzers must be sick and tired of having to come to our estate to sort of disputes between some of our finest oxygen thieves......Whoah, scrub that weather talk.

It is now a week later and the weather has reverted back to the typical insipid August mizzle and high winds.

I initially thought I'd make this blog all sunshine and light and unicorns farting rainbows, but I think I'd rather be honest.

I'd almost finished the blog before we had a slight misshap on Friday. After having a quiet week, recovering from our holiday and seeing my doctor and going in for a couple assessments at the local surgery, we thought we'd go and watch the new Spike Lee movie, BlacKkKlansman. As we were pootling along in our little Sh*t-Ron (Citroen) Berlingo heading to the consumer vortex that is Southside Shopping Centre, I heard a loud snap in the back of my chair, followed by a wave of intense pain.

Once we stopped, Jay told me it looked like one of the vertical tubes that holds up the back of chair had become dislodged and she tried to fix it and we carried on. When I was buying the cinema tickets, it occured to me that I couldn't get anywhere near the counter as I was leaning back so much. When Jay arrived with the cinema snacks, we dashed into the bathroom to have a proper look. Oh the horror. The whole right tube had sheared off and was in pieces.

This may sound insignificant, but I have no balance and cannot hold myself upright, as my paralysis is from my nipple-line and below. This means I constantly feel unbalanced and ordinarily I really have to lean back into the seat to sight upright. So having nothing behind me was pretty terrifying as I thought I was going to fall out and break my neck. Jay pushed me against the wall in the indoor car park, and I balanced against the wall while she grabbed the car. Some guy told me to stop smoking in the indoor car-park and I may have given him my first sucessful death stare in 39 years, as he departed pretty sharpish.

In times of crisis, we both seem to get very calm and focused and just deal with the problem. I am grateful for this attitude and it means we don't freak out and panic. We decided to use the winch in the Sh*t-Ron for the first time ever to get me into the vehicle safely and had a slightly fraught journey home. If my chair had broken in Yorkshire we'd have been truly up sh*t-creek, 300 miles from home with a tetchy cripple with an unusable chair, a stressed wife with an unusable husband and a 7 hour car journey to look forward to. Thankfully the chair broke 2 miles from home.

Of course, the worst part was missing the bloody fillllim. I now have a broken chair and I am using my old chair which is proving to be a four-wheeled torture chamber, as it is re-awakening parts of my back that have been undisturbed for 4 or 5 years.  The chair has a much lower back-rest than the current broken chair and seems to rub and press against every bit of my back that hurts.What has not helped is that I have discovered I have gained 32kgs since the doctors put me back on Dexamethasone steroids back in October last year. It is also wider so if anyone wants a DNA sample from me I have left most of my knuckle skin on the door frames in our flat. It is amazing what a difference an extra couple of centimetres makes in a tiny flat.

Oh well, we will endeavour to get the chair sorted asap and hopefully I'll be back on my feet/wheels in no time.

Four days before our very expensive trip to West Yorkshire (make accommodation "wheelchair friendly" and you can double your prices) on the 10th August, our Sh*t-Ron Berlingo casually announced on the info screen that we had a major engine fault. It was too late to rent another wheelchair accessible vehicle, and our garage could only see us on the morning we were meant to leave which was no good.

Jay found a garage that could see us sooner and dropped the vehicle off, only to be told they'd have to order and replace a engine part*. Thankfully it was sorted the day before we left and we piled up the Sh*t-Ron with a shower chair, my massive air mattress, food to feed my numerous cousins who were visiting and staying with us and we left. After 4 hours of driving we had only reached Milton Keynes. So that equates to 65 miles in 4 hours. Needless to say it was a long drive considering the distance.
*Apparently what was needed was a turbo component. Considering the Sh*t-Ron appears to be powered by an asthmatic lawn-mower engine we were slightly incredulous that the word turbo was being bandied about.

Once we'd found our lodgings, we were much happier. Sh*t-Ron had survived. I wasn't weeping with pain and my lovely wife had recovered from tripping up on the pavement and face planting at a motorway services as she went to get us some food. Her mishap was concerning and funny in equal measures, but she was quickly up, briefly looking around for any witnesses, whilst I was trying to phone her to see if she was okay. Helpfully her phone was in the car. 

We were staying in a cottage called Jerusalem Farm Barn in between Hebden Bridge and Halifax, right in the middle of Bronte Country. What an amazing place West Yorkshire is - the countryside and views are stunning. The cottage worked out okay for us and was fairly comfortable and had two spare rooms, so my friend Ryan and his girlfriend Yu-Jeong came down from Edinburgh to stay, and were joined by cousin Ross and Amanda. As usual Jay was continually grafting and prepared some lovely meals and looked after everyone. She really is amazing. She even baked herself some birthday cup-cakes on the 11th. Cousin George and Maddy joined us on the Sunday for a great meal, as they live fairly close in York.

Once Ross and Amanda left on Monday we had a fairly quiet time exploring the area. My newly discovered Greek relatives visited on the Tuesday for some chicken. mushroom and bacon pie. My cousin Mike is a chef and even he was effusive in his praise for the pie. Did I mention my wife can cook up a storm? Mike and his family live in South Yorkshire. I'll explain what I mean when I say "new" family in a later blog. Anyway we had a great time there and made our way back to London, feeling like we'd had a good break, but as usual, could have done with few more days.

So back on Friday and of course, reality bites with a neuro-oncology appointment on the Monday and Round 12 of chemo. Lovely Dr. Saran has emigrated to New Zealand with his family and I wish him all the best. He has been my doctor since 2011 and has been supportive, kind, honest and I've always felt he has treated us like humans with real fears and worries, rather than faceless cancer sufferers. Anyway the new guy prescribed the 12th round of chemo and has booked me in for a scan next month.

So Round 12 of Chemo? My hair has fallen out again and Jay gave me a wonderful skin-head shave. I have been throwing up regularly. I can't stomach anything but soup at the moment, which is really unusual for me as my appetite has never been affected by treatement and steroids usually make me constantly hungry. So when I ate soup three days in a row, my wife was seriously worried. Anyway I'm hoping it'll pass and Ginger Root tablets seem to be working pretty well for the nausea and sickness.

In terms of the future and treatment, we have a scan and take it from there - All I know is that I'm giving chemo a break irrespective of what they tell me. I've had so much poison over the last year and my body is now rejecting it severly so I need a break. If I was a bear I'd be planning my hibernation right about now as my battery is on low-power mode and I feel like I could sleep for a year. Hopefully I'd wake up feeling better and have enough energy to do more than just function.

At an NHS assesment at my doctor's surgery a nurse asked my least favourite question, which is "how do you feel within yourself?" My answer was I feel cr*p. That was a big mistake as that meant I then had to answer a heap of mental health questions. Am I suicidal? Do I feel there is no hope? Do I sometimes feel alone in the world? Pretty big questions.

The truth is what else are you meant to feel, if not a bit cr*p? Of course the nurse was just doing her job, but it made me remember a classic Zimbabwean T-Shirt slogan that simply read 'cancel my subscription to your issues.'  Needless to say I'm think fine and I convinced the nurse I wasn't going to go postal and am actually surprisingly mentally sound.

Of course, the reality is whatever my malaise may be, there are millions of people out there in far worse situations.

On that note, Happy 70th Anniversary to the NHS. We may have had our ups and downs but I am truly thankful to all the people who have kept me ticking over. I think that the average Joe has no idea how lucky we are to have the NHS, even though I'm the human version of a Panda when it comes to being cost-effective. If you have no idea what I'm talking about read https://www.nytimes.com/2006/02/12/us/eats-shoots-leaves-and-much-of-zoos-budgets.html

Love to you all and over and out.

My email address is now bruceallardyce@hotmail.com

The pain drain

Greeting Earthlings,

I am writing from sunny London after a weekend of blissful sunshine and genuine heat. According to the experts, we experienced the hottest May Day bank holiday on record. My memories of the May Day long weekend are usually three days of driving rain, howling wind and a general feeling of disapointment, so it was nice to have some sunshine and get outdoors.

Kevin and Leigh, my uncle and aunt, were over from South Africa to see their kids and have a holiday in England and Scotland. We had a family reunion at my local pub in Putney Heath and it certainly proved the old adage that "Hell hath no fury like an Allardyce drinking in the sun".

There were 15 of us and we really took over the pub. What a great day. We enjoyed it so much that we relocated to Hyde Park the next day with the folks in-law too and did exactly the same thing but without the alcohol and in more grandiose surroundings.

I have been teetotal for ages and I miss being the funniest person in the room (according to me) but otherwise there is not much else about drinking that I miss. Chemo and steroids, plus alcohol, results in a rather spectacular gastric apocalypse. The fact a pint is now sometimes £5 is the primary reason I don't miss it too much methinks. I am tighter than a duck's butthole and would never spend £5 on a pint.

I drank a thimbleful of my single malt Scotch with Den, my father-in-law, to celebrate Robert Mugabe giving up and finally deciding to Foxtrot Oscar back in November, but that is it.

My aunt sent over some old photos and it was really amusing to look back at life growing up.  They included this one of my uncles and myself at my graduation, looking like the Mafia,. We appear to have taken my mate Ryan hostage.

So how are things? Well, I am now full of empathy and understanding for chronic pain sufferers. My previous attitude was - there is always someone worse off out there. That still rings true but I have decided that I cannot treat things like a competition of sufffering; I always thought well, I'm only a paraplegic, so a quadraplegic is far worse off.  Plus I have food, shelter and lots of love in my life, so I have nothing to complain about and feeling sorry for yourself gets you nowhere. As they say, have a cup of concrete and toughen up. My attitude has changed a little bit now that I am in pain pretty much the whole time.

Last week, I only had one day where the constant pain abated for a few hours. And this is despite taking painkillers regularly. I can see people in the same boat as me when we are out. We have a strange haunted look on our faces, dark rings around our eyes and look slightly Zombie-fied.

When it gets really bad, I cannot concentrate or think straight, and start sweating like a barber giving Kim Jon-Un a new hairstyle. So I really have a lot of empathy for those of you out there who are in a lot of pain, because no matter how you spin it, it really is draining and affects every aspect of your life. Because you are in so much pain, you move less, get progessively stiffer and end up in more pain. I think I'll try meditation next.

Here is my daily drugs menu: Gabapentin, OxyContin, OxyNorm, Abstral, Charlotte's Web Hemp Oil (£300 a bottle), some magical resin from the mountains of Jamaica and of course, good old Paracetamol. Combined with stretching, a hot pack, heating blanket and various other things, I can safely report that nothing works. Unfortunately, going to sleep is the best remedy 'cause when I'm sleeping, I'm not awake to feel any pain. Any advice or tips are welcomed.

Ironically enough, I think I suffer from Allodoxaphobia, which seems to be named after me and is the fear or phobia of other people's opinions. Given that I can argue with my shadow and love to be obtuse, I am slowly learning that there is something to be gained from other people and the advice they proffer. Sometimes. So any ideas about pain, bring it on.

What I don't want or need is advice about the right way to be sick/dying/riddled with cancer. I was cornered by someone who gave me her views on pretty much everything based on the fact she knows someone with cancer - don't we all unfortunately. The last time I looked, there were over 100 types of cancer, all unique and all treated differently. She told me how to cope, how it is worse for friends who can't do anything to help, and how your mind can heal your body. Give me a break. People also die suddenly when hit on the head by falling coconuts, so life really isn't as simple as being able to focus your mind on not dying from cancer or in some random tropical-fruit-based accident. At that moment I wished my mind would discover a worm-hole in space to help me disappear. Anyway that was an hour of my life I'll never get back.

I am trying to rediscover my artist talents by drawing. Apparently art is therapeutic and so far, so good. I went for art lessons as a kid and loved drawing and painting. I find it relaxing, plus it is saving me money on gifts for my lovely wife. This focus on art is a direct replacement for my failed attempt to achieve "wellnesss" by making scale models of cars.  This is something I tried once and ended up totally losing my temper, becoming obsessed with completing the bloody thing and racking up a long list of unforseen expenses. I bought the model kit for £20 and thought okay, this will focus my mind on something else and at the end, I'll have a model of a Camaro.

Unfortunately, there were about 200 tiny pieces of plastic to remove, paint and glue. My hands cramp so I'm constantly droppings things; at the time I needed glasses, so couldn't see what I was doing half the time and painting proved logistically challenging because I kept having to touch my wheelchair rims to wheel somewhere to wash my hands. I also lost various tiny car parts down the sink trying to wash off failed painting attempts; I had bought model paint that didn't do what it said on the tin - just be model paint.  It instantly bubbled, resulting in me stripping the paint off the whole car and repainting  it by hand.

Relaxing? My ar** it was relaxing. Hand painting a plastic valve cover, waiting for it to dry and then gluing it to another tiny piece of plastic when you have no hand dexterity, can't see etc, is the least relaxing thing ever. Hand painting a car at least 5 times is not therapeutic. I even watched a YouTube video where some guy suggested buying a professional model spray gun for £350 in order to get a decent coat of paint on the bloody thing. Seriously? To be fair, the dude in the video had clearly never been anywhere near a real, live, breathing female and had devoted his whole garage to the pursuit of making models. He called it his specialist paint shop. Hell no, that is not me.

My obsessive nature meant I had to finish the car at great mental and financial cost. Every time I see the bloody thing I get a shiver down my spine. Well not literally. So drawing is proving to be more sucessful as a stress relieving exercise.

Jay is well and helping her colleagues with the SATS tests for the kids. Again this year, I tried answering some of the grammar and numeracy questions and inadvertantly answered the question: "Am I smarter than a 10-year old?"

No. It seems, clearly I am not.

Jay suffers from Restless Leg Syndrome (RLS) which is apparently some medical mystery where your legs twitch randomly. Usually, when Jay's tired, she can be known to kick like an angry 'orse. Many moons ago, in a doctor's surgery in Gabarone, we thought we had found the answers when we picked up a pamplet called 'So you've got Retless Leg Syndrome' . Unfortunately, it only repeatedly described the symptoms and the parting advice was to consult a medical professional. Thanks. For. That.

It was possibly the most useless pamphlet since 'Paralyzed? You may have Restful Leg Syndrome.' I can say with confidence that I have got Restful Leg Syndrome. Apparently one of the treatments for the real RLS is the wonderfully vague advice to improve your quality of life. Wow, that is a lofty goal. I was hoping for pills or gin or something less esoteric.

So in between the pain, RLS, and endless infections we have had some fun.  We went to the West End during a blizzard to watch The Book Of Mormon which was great; we watched a band Gomez (big when we students) at the Royal Albert Hall with our mate Kate and spent 3 days in a countryside cottage amongst the chickens, sheep and piglets of East Sussex.

I am determined to do things. Speaking of which, Kate has also managed to get us tickets to watch Pearl Jam next month in a private booth at the O2 Arena (that is a gift you cannot better). As a grunge child of the nineties, that is a big deal for me as they are one of my favourite bands of all time so I cannot wait.

In the meantime, we went to watch Surrey and Somerset play cricket at The Oval. We arrived 20 minutes late, Surrey lost 3 wickets, got bowled out for 129 and it was over 3 hours earlier than expected. At least we got upgraded to the posh section.

Thanks for all of your messages and love to you all.

New Year Same Old Story

I hope you all had a wonderful Christmas and a festive New Year. We had a relaxed Christmas and spent it at home with with Jay's parents Den and Pegs and sister Gaylynn. We were all thoroughly spoilt and overfed and warm and couldn't ask for more.

On New Year's Eve I managed to watch Jools Holland and the fireworks on TV and then was fast asleep by 12.05.

Fast times and endless excitement in the Allardyce household. Not being able to drink or be particularly mobile takes the jam right out of my party-animal doughnut.

Back in the day those who know me well can testify that my theory for the sucess of any type of party was to throw in a bottle of Sambuca to be consumed with total commitment by everyone in the room, no matter what the time or situation.

This made me pretty unpopular with those wanting to go home and popular with those raging against the dying light. Those days are long gone. However, I really do miss drinking and dancing.

I went for a MRI scan in December and I can honestly say it was the most painful 90 minutes of my life, even though I had dosed up on morphine and every other painkiller I could find. I cannot lay down flat at the best of times, let alone on a hard plinth, unable to move a muscle.

Again choosing the music option proved to be another fatal error. I chose a 'rock radio station' rather optimistically, whilst my decent CD selection was somehow left in the car. A mixture of big-hair spandex 80's aural tripe followed. Once the scan was finishing, a Pearl Jam song I love came on just to remind me what could have been.... Oh the indignity.

Luckily, I was in so much pain none of it really mattered too much.

So a week later when we went to meet the oncologist to discuss the results, I was expecting the worst. I have been feeling terrible and my pain has skyrocketed and I have increased my OxyContin doses and now on top of it al,l I also take Abstral, which is a type of Fentanyl. 

Quick quiz.

Which famous musician has died from taking too much Fentanyl?
a. Tom Petty
b. Michael Jackson
c. Symbol/TAFKAP/Prince or Prince Rogers Nelson as his mom knew him
d. All of the above

The answer is D as Fentanyl is much much stronger than most ordinary opoids, but more importantly for me, it really works. It also seems to kill people rather easily if they misuse it.

So back to the matter at hand. The oncologist said that the scans showed some stability and told us I need to continue the Etoposide Chemo for now. I am now on Round Five of chemo and getting progressively more lethargic and listless.

So while the scans look better, I am feeling no better. People - yes, I mean YOU readers - have a tendency to over-react to any good news as a sign I'm somehow recovering or that your prayers have been answered.

This isn't the reality, and as I said, I generally feel worse, but I am taking each day as it comes. My pain has to be managed carefully, otherwise I spend all day writhing in agony and nervously sweating like Oscar Pistorious faced with an obstacle course of Cattle-Grates with only his blades on.

Jay has the uneviable task of trying to get me to take painkillers regularly, but for some unknown reason I have always been resistant to taking them. But I am now admitting defeat on that count and now take the drugs as soon as I need them.

In unrelated news we have been trying to remain busy and keep our minds off things, and went off to the British Motor Museum and found loads of interesting cars to look at, including a few that had made it through my home town Bulawayo en route from Cairo to Cape Town, as well as a few vehicles from the movies.

In other unrelated news, my giant bottle of Pino Silvestre shower gel is finally finished after nearly 500 days.

Farewell sweet prince, and do not go gentle into that good night. That is my poetic mash up for the world's hardiest showel gel.

However as much as I loved Pino, I prefer regular soap and not some heavily pine-fragranced nuclear-waste lumo green alternative that is shaped and sized like an artillery shell.

But it was fun while it lasted. This should be a salutory warning to all to make sure you check the size of something on Amazon before clicking 'buy' otherwise you too could end up with 1500ml of shower gel. I hope you all appreciate this life lesson.

Love to you all.

Baldies United- shaving their heads in solidarity

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