Shingle Bells, Shingle Bells, Shingles All The Way....

Greetings  Earthlings

So this blog finds me writing to you from the rather calming environment of Royal Trinity Hospice in Clapham, South London. I have been here for 21 days now.

My Palliative Care Nurse, Joel, has been managing my pain and after endless meetings with the oncologists it was decided that he should assume overall responsibility for my pain control. Unfortunately, no matter what we have been trying, my pain has remained a constant thorn in my side, or in my case a pain in both sides, as well as my back and front. Thankfully, it is beginning to feel like progress is being made

So 80mg of OxcyCodone has become 120mg and now 200mg. 100mcg of Abstral has become 200mg and ended up as 800mcg. All of these increases have corellated with the law of diminishing returns. The more I took, the more I needed and the less it seemed to be helping. We are now nearing a happy medium.

One good thing is that I am in an environment where they have seen it all, and I am in safe and capable hands. I am positive that I will eventually reach a balance between being able to function relatively easily and not be in in excruciating pain all the time.

Of course being in a hopsice is a quite a sobering experience as a lot of people here are on their last legs and are being made as comfortable as possible, as there is nothing more to be done for them medically. On the topic of sobering experiences, we managed to sneak off to the Imperial War Museum to see the ceramic poppies on display.

So it probably wasn't the best idea for us to watch Louis Theroux's documentary about three people in the US who had chosen, for various reasons, to exercise their right to die. Theroux dealt with the people in his usual quizzical but mostly empathic way, and all I thought was why the hell I am watching this, but wanted to see it through. Again it has made me think that any individual who is of sound mind should have the final say when it comes making such a grave decision, and society shouldn't butt in.

So once again a sense of perspective is important as I am in a much better place than most here. What it has also made me realise even more is that Jay is a very special person and I am lucky to have her in my life. Despite all of our problems, we are still a couple who love each other and enjoy each other's company. I'll read this to her and observe her reaction. Deafening silence may not be a good sign for me.

Not only is she my wife, friend and carer, she is also a very strict editor, who makes sure I don't say anything too controversial....once in a while I slip an off-colour joke past her and into the blog.

Wheelchairgate is over. A guy from the wheelchair company rocked up a few Fridays ago and was aghast that nothing had happened for over two months. He told me he'd been on leave and couldn't believe fixing my chair was still an outstanding job and nothing had happened in his absence. He took my chair to his van to fit the replaement part and returned 10 minutes later with a fixed chair and a lot of apologies.

It is amazing that his company can operate in such a vortex of incompetence. Such is life. My written compaint is being formulated and will not be subject to any Jay editing. I need a pain free hour or two to whip up some proper righteous indignation before I tackle it.

Here is the important question of the day- when you have mysterious, but intense pain on your left shoulder and weird spots that are super itchy, what could it possibly be? This pain in my left shoulder feels like my skin is being burnt, and I thought the pain or morphine was making me scratch it like a madman. I also have areas at the top of my back that are super sensitive and I make Jay put dressings on them, even though there is nothing visible. Very odd, but then again that seems to be my lot in life: confuse the hell out of the doctors of the world.

I was wrong and the answer to the "what could it be" question is shingles. Yep. Shingles. How bloody typical of me to get shingles to add to my 1001 maladies. It would explain the random pain and sores. So I am on a course of oral medication to deal with that and hopefully once treated, my overall pain score will come down a bit. Bloody shingles. A colleague from the Civil Service used to tell us how shingles had made his wife bed bound through pain and I can fully sympathise with her now. It really is rather painful.

The other problem is that I am now persona non grata as I am infectious and wear the red badge of shame on my door.

Every time a nurse comes into my room, they have to wear an apron and gloves etc and are one layer away from wearing a full Hazmat suit. Other than that they don't seem too bothered.

So friends, I feel like I am getting somewhere with my pain treatment and peripheral issues, but I am struggling to remain patient, positive and perky. Time is moving slowly, and I am an impatient human at the best of times, so I am really digging deep to project a more sunny disposition.

*I have now returned home and I am happy to be back after three weeks. I also have a month's worth of the most boring admin to do. My drugs alone will take days to sort through and organise as I have changed doses for 10 medications, added 7, lost 4.....I sense you dozing off.

Have a lovely Xmas everyone and please donate something to your local hospice if you can. They are run by a combination of professionals and loads of lovely volunteers. And mine has a slug (Fusbal to non-Zimbos) table. I may be sick and disabled, but I am still the slug version of the great Rambo Mercedes Sibanda of Highlanders FC, Bulawayo's best team.

https://www.royaltrinityhospice.london/

** It was great seeing Jay's Uncle Deryk and Aunt Joan, who were over from Florida. We had a few fun gatherings and managed to visit poncy Kensington Whole Foods (wow what great food but a packet of puffed quinoa downstairs costs the same as a big bowl of amazing noodles in the upstairs food court), have a few meals together and visit the Imperial War Museum. Thanks to them for the gifts and transporting a few die cast models for me.

***Goodbye and good luck to Cousin Leah who is returning to South Africa after a year in the UK working, travelling and hopefully having a great time. We'll miss you and wish you luck with your studies. The various establishments that provide libations will definitely miss you too.

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