Spinal Viral

It's been a year...

2020-08-10T08:46:00.027+01:00

Today it's a year since Bru left us... it's hard to know what to say next - what I know now is that I find it difficult to know what I am feeling some of the time let alone articulate it to others but I will give it a go.

To summarise, life is just not as good without Bruce in it. Bru was often described as larger than life or being a big presence and he certainly was. I feel his absence all the time. Although it's still hard not to only feel his loss, I also remember his humour and laughter and the fun we used to have even just doing silly day to day things.

I have to admit though, at this time of year, it's harder not to feel anger and sorrow and the unfairness of everything that Bruce endured, especially in the last months and weeks of his life. I am working on taking a leaf out of his book and trying not to wallow in it. Instead I will, and hopefully we all can, remember his bravery, determination, strength, kindness and positivity. Last year Bru's family wrote a couple of things that are really meaningful and worth remembering, especially as we remember Bru now.

'Bruce was so much more than simply his illness' and 'my life shall be poorer for your passing but will forever be enriched with your memory.' Kev

'You leave an enormous gap in everybody’s lives. We can try and fill this abyss with a million magnificent memories of you.' Chubbs

'But you were always brave, Bruce. Particularly when Dad left us. You were a source of strength for Mum and brought her much joy.' Clive

'The world is definitely lesser with Bruce not here.' Grant

There were so many lovely memories and thoughts shared about Bruce by his family and friends so I am doing a separate blog post to share some of the eulogies written for him.

Bru requested that half of his ashes were scattered in the Matopos. I am so grateful that some of the Allardyce side of the family were able to make it to Zim last year to join my mom and I to celebrate and scatter Bru and his family there together. His mom Ali and his sister Kimmy came from Australia and Kev, Leigh, Grant and Siobhan, his beloved aunts and uncles, came from SA and Bots. It was an emotional but special day and all the rest of our families were with us in spirit. We scattered Bru with the ashes of is special Aunty Claire, his Granny Jon and Grandad George and his brother-in-law Kenny who Kim so sadly lost suddenly last October. All of them left us too soon. It's special that they are all resting (or probably partying) there together now. I'll be thinking of all the 'Allardyce' family today and sending lots of love.

This year I have learnt that I tend to shut down a bit and put on a brave face which is fine for me as it helps me to cope but I imagine, a bit frustrating for those around me who are trying to check how I am and always get lumped with the answer 'I'm fine'. So family, I am so grateful for and appreciate your love and support even though I don't always show it. I have been lucky with the way things have worked out this year to have been with my family most of the time and of course, I've had the joy of becoming an Aunty to the cutest baby Spencer who brings us so much happiness already. I know Bru would've loved you. I am also very grateful to all the Allardyce family, special friends and to everyone who has messaged and supported me over the year, persisting even when I don't always respond.

I can imagine Bru saying to me now 'Okay Jay, you're not doing an Oscars acceptance speech so wrap it up...' That's true so to wrap it up I would like to share some of Bru's music. Bru was always a massive collector of music and he loved just about any type. He was passionate about it, was always making playlists and burning CDs for the car (yes, he still did that) and he also loved to share it with his friends. I thought it would be a good way to remember Bru so I have created a playlist selecting a few songs from his many playlists (I haven't been able to add everything I wanted to just yet so I will be adding to it as it is impossible to choose - I have made it a collaborative list so you are welcome to add anything that reminds you of Bru if you like).

https://open.spotify.com/playlist/1FYm0MD30xM2cBDF6QJyse?si=EykieSLLSsiRwH8NTuURXw

In Bru's final wishes he also requested some songs to be played at his memorial so I thought I would share them for those not there.

https://open.spotify.com/playlist/7w1CzDPQS5FWOw3xMiouKi?si=KlX1C_XpTl6f1mae1EN-_A

The inscription on our wedding bands is 'my love, my life, my friend' and that is what Bru will always be to me.

Love to you all,

Jay

(As a side note, if you haven't written down your final wishes anywhere, maybe have a think about doing that. It's not a great thing to think about or do but I can tell you that it was so nice to know that I was doing what Bru would have wanted and that he was involved in the planning in some way.)

My tribute to Bru

2019-09-07T19:58:00.003+01:00

Today it’s a month since Bru left us. He used to hate the expression ‘fight against cancer’. He felt that it was not a choice and if you have it, you have to deal with it as best you can and that anyone would do it. His words from a bit of writing he was doing a while ago - “You don’t really have a choice. The word “fight” suggests or implies some kind of gentleman’s pugilistic pursuit. That is, it implies a contest, where there may be the opportunity to use physical strength or intelligence to overcome cancer or even win. The reality is that it is not a contest, and you have to take your poison and hope for the best.

With a terminal disease not only are the odds stacked against you, but you are also generally guaranteed to lose. So I am writing this through sheer luck rather than good judgement.”

He did fight though and I think he would agree with me now that for the last six months especially, it was a real fight. Everyday was hard for Bru in some way. I know it’s not nice to hear and it was hard to witness sometimes too. Of course he felt low and complained about things – just having to tell people what his current malady was meant that he had to address how rubbish he was feeling but he did not wallow in it for long.

I suppose in stages over the years we were almost in mourning for the regular life we knew we wouldn’t have together – big travel adventures, career progression, a house of our own and most of all children. Bru loved kids and once they got over his gruff exterior, they often really warmed to him; he used to enjoy teaching them how to draw or showing them his guitar. Although our world was ‘smaller’ we were still happy. I used to look forward to getting home to see him and even if he’d had a rubbish day, we would soon be joking about something. We went on some beautiful UK adventures and our amazing friends and family always made the effort to visit and support us.

Looking back through the photos when I was preparing for Bru’s funeral, I found pictures of all that he went through: the steroids and the awful side effects that they bring; the pressure sores – I mean he was in bed 100 % of the time for almost a year and a half and he handled it somehow and still didn’t complain or feel sorry for himself too much; the psoriasis – those who saw him during the phase of his whole face peels will know how bad it was yet he still used to joke about me having to hoover him (yes I did but just so you know, it was a freshly bought hand held especially for that purpose!); the going into septic shock situation and more recently, over the last two years it was the pain – the nerve pain, the shingles pain, whatever the pain was, it was sometimes so bad it would leave him shaking. There were many more daily struggles and things that are difficult to deal with just being paralysed. Dealing with any one of these things on its own would probably be a huge life event for someone.

This is a bit of Bru’s recent writing that I found called ‘Honesty is the most dangerous thing’ and as usual he explains things so well. He didn’t finish it but I know he was writing this recently when things were much harder.

Honesty

People always ask me, ‘so how are you?’ This seemingly innocuous question is almost impossible to answer. You have several responses ready and loaded in the chamber, ready to be fired back.

If the person asking is someone you don’t know well then the simple, yet effective, ‘I’m keeping as well as to be expected.’ Of course, this is a bullshit answer that saves you a lot of time and heartache.

Do people want the truth? Sometimes I wonder. The truthful answer is really complicated and painful.

If the person asking the question is a friend or family member then I immediately have a quick and efficient ranking system that helps me design a tailored response. For example, some will get a vague partial answer that is designed to make sure his or her day isn’t ruined by the truth. So the door of honesty is cracked open a little bit. Accordingly, a good friend with some shared life experience, who I trust and love, will get a more honest, truthful answer. Of course the truth is I am not well physically and sometimes I’m not well mentally.

Pain, discomfort, a myriad of side effects from drugs, nausea and weakness are a constant. Boredom that is bordering on the dangerous is also a constant. Sometimes I’m depressed beyond belief. I am sometimes angry at the world, angry at various people who inadvertently grind my gears, and worryingly, sometimes I imagine Swiss-cheesing these innocent people like a 1930’s American gangster with a Tommy gun. Sometimes I’m tearful and can cry at the slightest bit of nostalgia, sentimentality or the film Moonlight. I’m not gay, African-American or Floridian and have no connection to the story, but it still just moves me to tears. As they say in the great Australian comedy maybe ‘It’s just the vibe of the thing.’

~~~~~~~~~~~~~~~~~~~~

As I’m doing this blog post, I am wondering why I’m sharing all of this now. I think it is because it makes how Bru dealt with everything all the more impressive. His positivity, humour and pragmatism certainly weren’t just put on when he was writing his blogs or seeing people – that is how he used to face it and deal with it. I believe it helped to keep him going and exceed the doctors’ expectations right to the end.

So the end was a huge shock to us even after all the dire prognosis we heard over the years. I don’t think anyone can ever be really ready for it but I / we really, really weren’t ready for it. That sounds silly as Bru had had a terminal diagnosis for about nine years but he had bounced back so many times. We certainly knew that time was going to be fairly short after getting the scan results in the last week, but we had never known exactly how the tumour would affect things in the end. Bru’s main concern was losing the use of his hands and arms and they had definitely weakened. We thought the tumour would keep growing until it affected Bru’s breathing.

Towards the end of July, Bruce was very chesty which we were concerned about and his pain was getting worse. He had antibiotics for his chest and the Trinity Hospice doctor decided it would be a good idea for him to be admitted there so that they could change his painkillers to a different type. He had been feeling very drowsy and sleepy a lot of the time and this is one of the side effects of opioid toxicity. This is when the opioids are not tackling the pain effectively so the levels in the body are too high, causing drowsiness, hallucinations and twitches which Bru had to some extent. So the plan was to stay in the hospice for a couple of weeks to taper down and then switch to different painkillers. By the time he was admitted, we knew the scan results and knew that the last chance chemo was not working. Bru had been vomiting a fair bit, was often weak and tired and had struggled taking the last two months of chemo so I was just hoping that this switch of pain drugs and not being on chemo would give Bru a few more comfortable months.

Bru was admitted on the Wednesday and was very drowsy by lunchtime and slept most of the day. On Thursday we had a trip to A&E because of catheter issues and Bru was pretty perky and not drowsy at all – probably the best he’d been for a while so that was a relief. At A&E they took bloods, which were all good and they listened to his chest. Although he still sounded chesty, his lungs were clear so there was no chest infection.

On Friday Bru was wiped out again but the hospice doctors just thought it was due to him being up all day the day before and the opioid toxicity. I asked the doctor how she thought things might progress in terms of timing because I needed to let some family who were due to come in September know. She said the most likely thing to happen was that Bru would get a chest infection/pneumonia which wouldn’t respond to antibiotics. I asked her if she thought we’d be going home and she said that once they’d switched the pain drugs over she couldn’t see why not but she thought I should let family know to keep travel plans flexible or come early Sept just in case Bru got an infection. It was hard to hear but I was relieved that she still thought we’d be going home. Bru slept most of the day but woke up at eight and was fine and chatty.

On Saturday morning Bru was awake for breakfast but was still sounding really chesty and was drowsy again. A different doctor who we hadn’t seen before came in at about midday and checked up on Bru who was struggling to stay awake. She then told me that she thought it would be a matter of days.

I was shocked because of the discussion I’d had with the doctor the day before and didn’t understand why as his bloods and chest were clear. She said she would be happy to be wrong but that based on looking at him and in her experience, she didn’t think that Bru would have much longer than a few days. Bru woke up again at about 5ish and my dad was with me now too. Bru was chatty and chirping about some guy on TV. I told him what the doctor had said and he said he felt fine and he thought the doctor was over egging the situation. He decided he wanted to get up into his chair to try and cough sitting up to clear his chest. I was so relieved that he seemed ok and was determined to get up. Bru passed away shortly after that.

I would take the few days the doctor had predicted in a heartbeat now. It was too sudden but Bru really was fighting and determined until the end.

Below are the words I wrote for Bru and read at his funeral. It was a really special send off for him and I think he would’ve approved. Thank you to everyone who was able to come and to those who weren’t, thank you for all the meaningful messages you sent. I typed some up and displayed them at the funeral so you were with us in spirit.

I’ll also post some tributes from family and friends when I get a chance over the next few days.

Love to you all

Jay

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Bru is the one who normally does all the talking but I’m going to try.

The messages that have been sent for Bru have been beautiful to read – there are so many adjectives that stand out and they were used to describe Bru over and over again - funny, brave, intelligent, kind, resilient, loyal, courageous...

Bru wasn’t a fan of using too many adjectives in writing as it can sound insincere but I know that all of these words have been said with huge sincerity and it makes me so proud of Bruce. He was all of these things to me and more. I am sad that he doesn’t get to hear all of this. He was often so hard on himself as he felt he hadn’t achieved the conventional milestones in life. I used to tell him he had a fairly good excuse. I am so grateful though, that so many people did get in touch with Bru after every blog and said some wonderful things to him.

Bru faced a lot throughout his life but was always so positive and determined. Right from the beginning when he first became paralysed, he somehow didn’t wallow in self-pity. He laughed and joked with the nurses and put all his stricken visitors at ease almost immediately by cracking a joke. He was always so friendly and polite to all the many nurses and doctors he saw – they immediately warmed to him. Even at his sickest in the hospice when he was struggling to stay awake one afternoon, he offered his doctor a seat and some water.

It was a privilege to look after Bru but importantly, Bru really looked after me too – I couldn’t have done it without his ongoing positivity – he went through some awfully difficult things but somehow was able to bounce back and keep us smiling – he kept me going as much as I kept him going.

He was so loving, he cooked for me whenever he could, even if he felt terrible; he often complimented me out of the blue; he worried about me and supported me when I faced things that I was nervous about. He was so generous and just wanted me to be happy. And of course we laughed. We always, always had fun together and occasionally he even laughed at my jokes too.

Bru was interested in so many things and he made life interesting. He loved music (his music collection is a thing of wonder), loved dancing and loved a party. I’m so grateful that he lived his relatively short pre-illness life to the full and we have his crazy stories to tell. He loved learning about and cooking different types of food, he loved sports and cars and could remember random stats about these things at the drop of a hat. He loved history and sharing books that he found interesting with his friends. His ability to remember general knowledge was frustratingly good – annoying because I very, very rarely beat him in trivial pursuit.

He wasn’t perfect of course. DIY was definitely more my domain and he was very stubborn. For no good reason, he would not let me teach him how to use predictive text and that drove me crazy! In the old days he would also love to stubbornly buy a bottle of Sambuca right at the end of the party just to keep the fun going, while his friends often faded around him. His stubbornness and determination to keep going though, were in fact, huge strengths because he never gave up – right to the end.

Bru was a collector of things – music, colognes, cars, books etc. – not always good for our tiny flat. But most importantly he was a collector of some really, really special friends. We were lucky enough to have had the love and support of so many of our close friends through the ups and downs. He was, and I am so grateful and overwhelmed by the messages and kindness from, friends, friends of friends and even people who only knew Bru briefly – thank you all so much.

And our families – we have had so much love and support from everyone. I want to thank my sister and my mom and dad for always being here for us and for sacrificing things in their lives to be close to us. Bru’s family has also often gone the extra mile - building Bru wet rooms, accommodating us for months on end and all the cousins and family from all over the world, travelling to come and visit us. We have had so many special times with everyone and the thing that stands out is laughter. This is a quote from some of Bru’s recent writing “I have always been surrounded with a surplus of love and affection and thank my lucky stars to have had such a devoted family”

Thank you families – we love you.

There is so much more I could say but I’ll save it for Bru’s final blog. I’m not sure what my life will look like without Bru and I don’t think that that has hit me just yet – a hospice nurse said to me – he was half of me and he was. A big half.

There are things that I have learnt from Bru and everything he went through that I will try to take forward: to look after your body and health – change things if you have the ability to; appreciate spontaneity and make the most of opportunities that present themselves and tell people how you feel about them. Stay positive and laugh a lot.

I love you Bru.

What's in a name?

2019-09-05T22:16:00.002+01:00

Hi everyone,

This is the last blog post that Bru had started writing. Unfortunately he didn’t manage to finish it as he was feeling so unwell over the last few months. I thought it was important to share his last blogging words with everyone who has been following and supporting him for so many years.

I’ve added a little bit in yellow explaining the treatment bits that Bru had started to mention as I roughly know what he wanted to say. I apologise in advance for not being as succinct or as witty as Bru but I will promise not to use any exclamation marks in Bru’s honour.

I will send out a second blog post soon with a bit more about what happened. I find that I’m still mostly avoiding my phone and communicating in general but I’m so grateful and touched by all of your kind messages. Even though I haven’t responded yet, I have read them all and appreciate them hugely. Love Jay

Here's Bru.........

Greetings y'all,

I hope this finds you all well and surviving whatever the weather gods have thrown at you recently. The UK was properly hot for a few days and people were going spare. For some reason this meant cancelled flights, train chaos (to be fair a passing cloud can cause train chaos), mass fainting at Wimbledon, amongst other things that you might expect with the temp nudging 40c.

We have been pretty busy with family visiting. My mother, Alison and my sister, Kim came over from Australia. Them and most of Queensland's Macadamia nuts and Tim Tams. Not that we were complaining about such luxuries. We had a number of fun family gatherings when they were here with the UK cousins and the Parkies too.

My cousin Cal, one of the Barefoot Adventurers Club mentioned previously - see https://www.facebook.com/barefootadventurersclub/ - and all round raconteur, also joined us from Australia. Cal's parents Siobhan and Grant came over from Botswana via Germany for a quick visit and cousin Ross and family also popped in for a day. It's been good to see everyone again.

Two baldies - Bruce and Jonty Bruce

I'm going to cut to the chase as I have no idea when El Vomitron will re-appear to ruin my day. The beauty of having an aggressive rare form of cancer is that things can always get worse so carpe diem mo fos..

So when I left you last time we had run out of treatment options. Then, 10 days later, out of the blue my oncolologist decided to put me back on etoposide, a treatment I undertook previously for one year which kept the tumour stable and had limited side effects, apart from rapid onset baldness. What all of us forgot was that I was a lot stronger back then and a lot more resilient. When my relies were over I was joking about the chemo and to illustrate my point, I grabbed a clump of hair. Bad move. I managed dislodge more hair than I'd care to imagine. Last time the process was quick, but this was ridiculous. Overnight is an understatement.

I was pinning my hopes on the magical medical marijuana doctor, who specialised in skin cancers. Getting to see the man was difficult, but worth it in the end. What an interesting man. He has dedicated his medical career to curing cancers and was a leading light in identifying CD4 as the major cellular receptor for HIV in humans.

Anyhooo he prescribed me some cannabinoid oils and I'm to try them for a month and see if they help at all. I get them from Scotland - something to do with licensing. I take them 4 days on, 3 days off, all for the princely sum of £59 per month. So thank you Prof for making life a bit easier, and not getting me caught up in the scam of cancer drugs.

*Unfortunately, Bru wasn't able to take the oil consistently or for very long because he was nauseous a lot of the time during the last two months of chemo. It seemed to make his nausea worse – that or just the sheer volume of drugs he was taking. He was and had been taking so much medication for such a long time (it genuinely ended up at about 40/50 tablets a day) and he was starting to struggle with that.

He used to say that managing his drug intake throughout the day and keeping on top of organising his supplies was like a fulltime job. Bru also had to wait before starting the CBD oil as his vitamin D levels where not high enough and apparently that really affects the efficacy of it. The professor was frustrated that vit D levels are not routinely tested.

I am sorry and frustrated that this prescribed cannabinoid treatment wasn't an option sooner. Bru and I recently watched the Netflix documentary called Weed the People which is really interesting. I know Bru would recommend watching it. I hope that the medical/pharma communities are able to formalise THC & CBD research and treatment sooner rather than later.

The Repurposing Drugs in Oncology (ReDo) Project, an international collaboration between the Anticancer Fund and US-based non-profit organisation Global Cures has identified 70 potential agents for which there is evidence of cancer-fighting properties. These include the diabetes tablet metformin, cholesterol-lowering statins, the antacid cimetidine, the de-worming tablet mebendazole, the anti-fungal itraconazole ........... “If these medicines were coming out today, some would be blockbuster cancer drugs. But most are no longer covered by patents so the pharmaceutical industry has no financial incentive to investigate them.”

*This is as far as Bru got with the blog and I think his title refers to these patent issues. I know that he was also going to talk about Zim currency and the craziness of just changing the name of it. He was going to upload this video about it.

A book called 'How To Stave Cancer' by Jane McLelland was recently recommended to Bru and we got about half way through reading it. As Bruce was starting to explain in the paragraph above, the book is about how the author explored using a wide variety of non-traditional cancer drugs, supplements and especially a low sugar (GI) diet alongside her chemotherapy treatment. One interesting bit that we had been chatting about is that she really analysed her specific type of cancer cells and what they thrived on – apparently some cancer cells feed on sugar and some on protein.

She also stressed the importance of having good vitamin D levels in order to ensure that chemotherapy is most effective. Vitamin D has never once been mentioned to us in relation to cancer treatment. I haven’t done any further research into this or spoken to an oncologist about it so I can’t be sure of the claims, but it sounds like it is worth looking into if ever being treated for cancer. What the book did highlight though, is that in the main, cancer treatment protocols have not changed much for decades – one of Bru’s second or third line chemos was developed in the sixties which is fine if it works…

It is understandably difficult for oncologists to experiment with different or alternative ‘off book’ treatments but the book did make us think that maybe we should have asked more questions or been more aware of alternative treatment protocols. We always just thought of ‘alternative’ as being supplements or high doses of vitamin C (which Bru did try a multitude of back in the day).

Neither Bru or I are real rule breakers (yes believe it or not, Bru was a stickler for following the rules – this may or may not have been the case in his earlier years). We always trusted what we were told by surgeons and oncologists. Over the years, however, our experience has taught us that doctors don't know everything, and of course it is unrealistic and impossible for them to know it all.

I guess the point I’m trying to make is that maybe we should all question things in the medical world a bit more (with respect) and not always accept the one size fits all treatment approach. How we go about this, I’m not too sure...

Although some of what the doctors have told us over the years has not always panned out as they said it would (thankfully Bru was a statistical anomaly), we could not have been more grateful for their continued care and just the amount of treatment, medication and time given to Bru and ALL FOR FREE…It is unbelievable (and possibly/probably unsustainable).

The people on the front line – the doctors and nurses and especially oncologists and the hospice medical team are all amazing. I don’t know how they do it. Bruce was so appreciative and did not take the treatment he received for granted, especially knowing that in other parts of the world we would've been in a very different position. It certainly gave us more time together which I am eternally grateful for.

Although not perfect, the NHS is a wonderful thing. Bru asked me to make donations on his behalf to Stanmore, St Georges, The Marsden-Sutton and Trinity Hospice which I have done and will continue to do over the years. I know some friends have done the same and Bru would have been really happy about that so thank you all very much.

Terminus maximus...........

2019-05-28T09:51:00.001+01:00

Hello everyone,

I hope this finds you all keeping well and getting ready for summer.

We met with the oncologist last monday after a frankly terrible couple of weeks, that included projectile vomiting, stomach bugs, terrible pain, increased steroids, lack of sleep and various maladies that were making me a bit nervous about the outcome of my MRI.

So, it didn't come as a huge surprise when when we were told that the tumour had grown significantly. Unfortunately the oncologist let me waffle on, whilst just staring blankly at us. He then left us hanging with an incredibly long awkward silence and then said 'I'm afraid it isn't good news.' He needs to work on the length of his pregnant pauses. They are uncomfortably awkward and long.

The disease area is now at T4 to C7. Anything in the 'C' part of the spine is bad news for me as that controls movements in your hands. I stupidly went crazy with handgrips as I thought exercise would strengthen my hands and arms. Cue 4 days of freaking out as I coudn't play guitar, open a soft drink or hold a cigarette. Thankfully it's only on my right side. It seems to be manageable.

So back to the cancer: chemotherapy is to stop immediately. The oncologist is of the opinion that it is doing me more harm than good and after 2 treament cycles there should have been some signs of the chemo arresting the growth of the little b**tard or even reducing it. So as the disease has progressed aggressively, that clearly hasn't happened. So bye-bye Temozolomide and bye-bye chemo in general.

Again, we asked about Radiotherapy. Too risky apparently and could destroy what cord I have left remaining or even kill me. Ouch. Talk about lots of good options.

So where does that leave us? Up a certain fragrant creek without a paddle it seems. The doctor has replaced my existing steroids, Dexamethasone, with Prednisolone. The side effects seem the same, but this is my current 'treatment'.

The side effects are the heady mix of acne, insomnia, increased appetite, weight gain, impaired skin healing, depression, euphoria (that one has passsed me by), raised intraocular pressure (my eyeballs feel like they are going to pop), confusion, amnesia, irritability, nausea and headaches. Ha ha talk about a personality transplant. Maybe I need one.

In the past I have always been able to hide behind the fact I was at least taking something.

So, when asked, I could reply confidently that I was taking chemo, despite the fact that all the doctors, nurses and Jay and I knew full well that none of it would 'cure' me. I mean at one stage I lost all my hair whilst taking chemotherapy for lung cancer that had an off-chance of doing something. You cannot say I haven't tried everything possible.

Back in 2011, my chemo was lost in the post when we ran away to Africa. My wonderful consultant at the time, Frank Saran, gave me a few months supply of chemo and a friend posted it to Botswana. Of course it was lost/stolen. So I bought the same chemo from a dodgy website registered in Fiji, and used a coat hanger to hang the fluid pack and just did it myself with the help of the only oncologist in Botswana. We have put ourselves through hell because it's the least we deserve, especially Jay.

I promised I'd never say this, but it actually feels appropriate now. I have never stopped fighting this disease. Not for one second.

But now I feeled incredibly 'naked'. It is very scary to realise that this is it and no more can be done. I am trying to make comms with some pioneering doctor who uses Marijuna oils for tumour treatment. He is a hard man to find, but worth a shot. For some reason I can picture him in an Indiana Jones Trilby wondering through a steaming jungle, picking magical elixirs from the bushes, and I greet him and he offers to help me...wow maybe I don't need any magical drugs after all

Update; Indiana's secretary called and it didn't start off too well. I was asked if I had health insurance. Needless to say no insurers come near the terminally ill. I once tried to get travel insurance for a two week holiday and was quoted £25,000.

Honestly, I'd love to just head off to Norfolk and hide from everyone for a few days, but I have pointless appointments coming up. I have had quite a few long 'reviews' where someone taps away furiously at their laptop asking inane questions.

You know, 'Do you use a wheelchair full-time? ' Yes.
Next question - 'Can you climb stairs?' What? Um, No.
'Would you consider your mobility to be restricted.' Holy shuddering. Seriously.
WTF?

On a brighter note, my mother and sister are visiting from Australia fairly soon, so they bring a lot of smiles and laughter to the party. Grant, Chubbs and Cal will visit later in June/July for some more s**ts and giggles. Lots of other family members are heading over at some stage soon too. We also had Den Pegs staying with us recently and managed to use Christmas vouchers for an afternoon tea at the Petersham hotel.

So it will be good to have family around to distract us. I just wish I had a bigger place as we can't accomodate guests comfortably on our couch in the lounge. Our tiny flat will be pumping.

For a long time I have been leaning over the precipice, staring into the abyss, with an incredibly strong thread stopping me from falling to my death. My situation has always been precarious, but this chemo 'thread' has been my illusory safety mechanism even though it was last resort chemo. Monday is the day the thread was cut and yes, I feel like I am falling.

The one thing that keeps me pushing on is my darling wife. She is so strong and we like to think we keep each other going, but truth be told, I'd be lost without her. I am so grateful for everything she does for me and we truly have been lucky to have fallen deeply in love, pretty much right from the beginning.

I remember telling Granny Jon I was dating someone and this would involve going to the films and going for long walks. She nearly fell off her chair as she was so shocked at how seriously I was taking the whole thing, and then when she met Jay, my gran told me in no uncertain terms to make sure not to c**k it up. The rest is history and despite nothing turning out how we wanted it to, I have never been short of her love in my life. So in many ways I am luckier than most.

So again thanks for your messages of support - we really need them. I am struggling to keep up with the sheer volume of messages so please don't get offended I don't reply to you individually.

I go back to the Marsden on the the 4th for a symptom update. So have a drink for us, eat a juicy steak (or choose a bloody plant-based alternative), hug your baby or puppy and just do something that makes you smile.

Better start writing my book 'toot sweet eh?

Lots of love and peace out.

Here's a bit of Monty Python.

Mr. Praline: Never mind that, my lad. I wish to complain about this parrot what I purchased not half an hour ago from this very boutique.

Owner: Oh yes, the, uh, the Norwegian Blue...What's,uh...What's wrong with it?

Mr. Praline: I'll tell you what's wrong with it, my lad. 'E's dead, that's what's wrong with it!

Owner: No, no, 'e's uh,...he's resting.

Mr. Praline: Look, matey, I know a dead parrot when I see one, and I'm looking at one right now.

Owner: No no he's not dead, he's, he's restin'! Remarkable bird, the Norwegian Blue, idn'it, ay? Beautiful plumage!

Mr. Praline: The plumage don't enter into it. It's stone dead.

Owner: Nononono, no, no! 'E's resting!

Mr. Praline: All right then, if he's restin', I'll wake him up! (shouting at the cage) 'Ello, Mister Polly Parrot! I've got a lovely fresh cuttle fish for you if you show...
(owner hits the cage)

Owner: There, he moved!

Mr. Praline: No, he didn't, that was you hitting the cage!

....Does this make me a dead parrot?

This one may require a bit of effort

2019-02-07T13:57:00.000+00:00

Greetings Earthlings,

This is a long blog that was hard to write for various reasons, so please bear with me. One reason is that the draft didn't save which was a gear grinder of note as I lost the whole thing.

I hope your festive season was full of family, laughter and innapropriate presents. On that note, thanks must go to Gaylynn for my gift of a giant glistening turd the size of a infant's arm. Even though it is made from foam, it is disconcertingly life like. We spent most of the festive period hiding it in daft places, throwing it at each other and generally acting like children. All I could think of was G paying for it in Spain, patiently waiting in a queue as it moved along the shopping conveyer, with the embarassed sales assistant having to scan it, wrap it and bag it.

Aaah, the joy of turd-based humour.

Den, Pegs and Gaylynn spent Christmas with us, and we had the usual ham/lamb double header - I really tried hard to avoid a food coma. It made the day more enjoyable not having that 'I'm going to explode' feeling. We had a fun, relaxing day and exchanged lovely gifts, and I even had a wee drop of Baileys to celebrate. In the true spirit of the festive season we even got Cards Against Humanity out, playing that, as well as Articulate and Who Am I?

Ross, Amanda, Ryan and Lorna came round pre-christmas for a Crimbo Chicken Kebab from our local Turkish take-away, a place gloriously untouched by the hipster revolution currently sweeping the fast-food establishments of London. There are no 'pulled' products to be seen, you know pulled chicken and pork etc, no Oaxaca Smoked Chipotle marinades to confuse you, no finger-limes, no 'up-cycled' decor, just good old Mediterranean grilled chicken, pictures of Kemal Attaturk, plastic flowers, all served with a great salad and enough chips to stop us all in our tracks.

Yes, Ross is dressed as an elf.

All of us trying to be serious

Ryan's partner Lorna is a trained baker at a high-end bakery in Primrose Hill and she made us 4 varieties of bite-size treats of her own creation. I'm a savoury guy over sweet 9 times out of 10, but Lorna is super talented and her inventions are incredible. Ironically, cousin Ryan doesn't even like sweet things, so her talent is wasted on him. It is probably a good thing as he'd be the size of a house if he ate everything she makes. She has made us cupcakes for our birthdays back in August, and they were truly something to behold. I still find that baking is like alchemy to me, so I am always impressed when people whip up cakes and baked goods. Her peach melba cupcake with rasberry coulis centre is a thing of beauty. I appear to be writing a food blog. Apologies.

My cousin Ross and his partner Amanda had their first child on the 4th January. Little Jonty Bruce was welcomed into the world to an immensely proud family, with grandparents, uncles, aunts, and cousins waiting to meet him. We are so happy for them and wish them all of the best as parents. I am so honoured he has my name. What a lucky little sausage. Unlike most newborns, he doesn't look like a fat, red, grizzled Russian polictian, complete with corruption rolls on the back of his neck like most babies (and politicians). He is so cute and tiny. Ross's mom, Claire, was so excited to become a grandmother for the first time and was planning a trip over to the UK to meet her grandson.

Jay, George, Amanda, Jonty & Bruce the Magnificent

Jay, Jonty & Ross

Jay, Jonty & Me

It seems that life can be an utter ar** sometimes. A few days after Jonty was born, Claire was tragically killed in a car crash in KwaZulu Natal, South Africa. We are all totally devastated by the news and are still trying to come to terms with it, so I can't imagine how Claire's three kids feel. Of course there is never a good time for tragedy, but the timing seems particularly cruel. Katie was so close to her mom and always in constant contact, Ross has just had his first child and George had recently announced his engagement to Madi, so she was immensely proud of all three of her kids.

They are totally devastated, as are the rest of us.

Claire was such as wonderful person, who was so creative and so fun and loving. She was always so generous with Jay and myself, and really looked after us when we moved to the UK. We spent many weekends with Claire and the kids, making use of her giant red couches, getting fed the best food imagineable and getting spoiled rotten. She moved to South Africa and set up the first proper gourmet olive company in the country, winning numerous awards at food shows and introducing the previously ignorant South African public to her olives, tapenades and sauces. She also met a wonderful guy, Leibrandt, who is now part of our family. I cannot comprehend how strong he must be to have to deal with this.

The poor guy will be so embarassed that I am listing all of his super-powers, but he really is an amazing guy who seems to have an untold amount of skills, such as making blackpowder rifles and ammunition, forging and making beautiful engraved knives, he has butchery skills, can hunt, fish and can fix anything with an engine, speaks fluent Zulu, rides horses - the list is endless, but most importantly he is a great person and quickly passed the Granny test when she was alive. And she was a tough nut to crack. When I was growing up she took a dim view of my choice of girlfriends until she met Jay.

One of the happiest days of my life was telling Claire and her sister Siobhan that I was going to ask Jay to marry me. The pair of them are like big sisters to me and it took them 2 days to calm down and stop hugging me.

We had always talked about going to Italy to have a culinary tour. So Claire said let's just stop talking and go. Claire, myself and an old house mate took a two week trip around Italy back in 2001, flying into Nice and renting a car and driving down to Naples and Pompei, stopping off on the way at a wonderful place on the coast called Baia Domizia. We had loads of good food and wine, numerous car breakdowns, went midnight skinny dipping in the ocean, went to a few dodgy nightclubs and had a lot of fun. Claire and Dean decided I would be the designated Italian speaker, resulting in me rather sheepishly returning from the supermarket with 40 slices of Mortadella and Salami rather than four slices, much to their amusement. It seems my grasp of Italian numbers and quantities was a bit off.

Me, Siobhan, Claire and Granny Jon

Claire & Ross at our wedding

Claire & Leibrandt


Three slighlty sozzled Allardyce's after telling them I was planning to get married

My family held a memorial a few weeks ago in South Africa. Not being able to go was upsetting, but I can't make it out of town, let alone to South Africa. Thank you for your kind messages.

I had an MRI scan just before Christmas, and was really nervous about the results, as it was one of the most painful ordeals I have ever experienced. It lasted over an hour and I was sweating and shaking in pain by the time it finished which is sign all is not well. I was expecting the worst, but the follow-up was re-scheduled for a week later than the original appointment, so I thought that maybe the news wouldn't be bad.

We have learnt from the past that when you go in for your follow-up consultation, the gravity of the news depends on who walks through the door. A registrar or other underling walking through the door means that Jay and I look at each other, smile, and basically stop listening because I have a stay of execution. So, very rarely good news, but not bad news.

On Monday January 7th the head oncologist walked through the door so we both looked at each other and braced ourselves. The disease has now spread to a new area at T3, so further up my spine. This is obviously terrible news for us and worringly, the first time the little f***** has grown in a new area.

My only option was to go for 6 weeks of radiotherapy and try and zap the little b***** before it takes me out. I spent a few weeks getting all the preliminary scans sorted out, had one more MRI and then it was to be 6 weeks of Radiotherapy. It would be tough, but at least it would be treatment.

So I was slightly surprised when last week I got a call and we were told that Radiotherapy is now off the table. It seems that they treated me with radiotherapy quite high up my spine back in 2011, meaning the the new treatment area would have signigifcant overlap with the old treatment. This means that it is simply way too risky to treat now. They could end up severing the cord, or damage the major spinal artery, meaning potentially damaging my spine further up and resulting in the loss of the use of my arms, which for me is the end. So while this means I avoid 6 weeks of radiotherapy, it also means I have no treatment.

I'm not sure how I am meant to feel about this. The way I see it is that they are waiting for the new area of tumour to start causing problems, then they can give me targeted Radio. So I have another MRI soon and we will take it from there. My Oncologist has referred me to a doctor who is treating tumours and symptoms with Cannabidiols, so we will see if that can help in any way.

So it has been a difficult few weeks for us, and again the future is plagued with uncertainty. Meanwhile, the shingles rumbles on and I am suffering from Postherpetic Nueralgia - which is extreme pain after the shingles has healed and isn't really treatable. All of the Opoids I am on for my daily spinal pain are ineffective for shingles. I am on every type of medication they think works, ranging from Gabapentin to Tri-Cyclic Antidepressants. If you throw enough mud at something then some of it is bound to stick.

Thanks as always for your love and support and I'll keep you all posted. My mailing lists aren't working again so I hope you guys get this blog one way or another. If you get a chance, watch Vice - Christian Bale may as crazy as a box of frogs, but the man certainly can act.

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

2018-12-07T12:56:00.002+00:00

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

2018-09-11T12:26:00.000+01:00

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

2018-05-20T17:25:00.001+01:00

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

2018-02-06T10:38:00.000+00:00

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

2018-01-03T10:57:00.001+00:00

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

2017-10-31T12:01:00.001+00:00

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

2017-10-04T12:48:00.001+01:00

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

2017-08-14T17:20:00.001+01:00

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

2017-05-18T12:25:00.000+01:00

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

There's a Gorilla in our midst....

2016-12-07T19:18:00.001+00:00

There's a Gorilla in our midst....

Hello everybody,

I hope you are all well and had a good summer.

I have now completed my one year of Temozolomide Chemotherapy and have thankfully been given a break from treatment, after scans and a consultation revealed no growth of the tumour.

I had the MRI scan last week and was asked the million dollar question: 'Do you want music during the scan?' Experience should have taught me to say no, but I rolled the dice. After I said yes, I was asked what music I liked and after making a joke about preferring Peruvian Psychedelic Rock they stared at me blankly and said they'd put on some music. One horrendous pop song later I was cautiously optimistic it would get better and then Bruno Mars came on.

I have nothing against the little melted troll but the CD stuck about 20 seconds into the Bruno Mars song.

For 1 hour.

I waited for 20 mins to see if my zen-like demeanour would be altered by the combined sound of a hammering MRI machine and a very loud stuck CD.

I waited another 20 mins because I am patient and didn't want to stop a scan because of a stuck CD.

I then waited another 20 mins because the bell thingy they'd given me to alert them if there was a problem didn't actually work.

So after 1 hour they stopped the scan to inject me with contrast dye. I was very clear I didn't want any more music. It had been like Guantanomo Bay style mental torture. At least the song wasn't Barbie Girl on repeat.

A few days after the scan we had a meeting with my primary oncologist. He was smiling and jumping up and down. Maybe they'd found gold in my spine? No. The scans showed that it still looks a complete mess.

However, the tumour has not got any worse and according to him I am part of a group of less than 1% of his patients that survives this long. He really is such a positive guy, but for some reason he rewarded me for still being alive by slapping me really hard on the back. Never in my life have I had to stifle a scream so much - getting slapped on a tumour is pretty painful. Anyway, it certainly woke me up a bit.

Thank goodness for that and that means no chemo until at least February when I get scanned again. When I was taking chemo, I would eat sugar-free sweets to take away the nausea and taste of the pills. Then I got to the stage where the taste of sugar free sweets made me feel sick. By last month thinking about sugar free sweets made me feel sick. Nausea is a real pain. The feeling of almost being sick the whole time. Luckily the anti-nausea pills are pretty good but have side effects. They really bung you up. I mean really bung you up.

Being an inquisitive person I googled potential solutions and found a website created by expectant mothers taking this drug, Ondansetron, for morning sickness. I thought I had it bad, but some of these women were carrying more than babies. One was carrying 'more than a baby' for 3 months. 3 months without a toilet break resulted in a trip to the hospital for an induced delivery of the backlog. Wow.

Now my next problem is to get off steroids. They make you get fat quickly and after a year I can barely fit into my wheelchair. Too much sausage, not enough skin. So I am trying to reduce the steroids slowly without alerting my tumour to the fact. Last time I went off steroids the little chap decided to grow. So I am doing it slowly and hope to see the results.

I spent a year in South Africa and Botswana years ago taking huge amounts of steroids without anything to counteract their mood altering effects. At least this time I take medication to counter the paranoia, anxiety and rage that they induce. So hopefully I am bit calmer and more rational. I still support Liverpool and the Springboks which means an unhealthy level of pre-existing anxiety. Physically, the roids have made my head and body puff up like a balloon.

One other thing my darling wife noticed is that I now have an uncanny resemblance to both Harambe (R.I.P), as well as the smiling gorilla in the Gorilla Duct Tape Advert.

I suppose the glaring difference is no-one has tried to shoot me yet and if I ask nicely, I am let out of my enclosure once in a while. It doesn't bode well when you appear closer to a primate than anything else. Oh well. Hopefully reducing steroids will help reduce me to the size of a small primate.

I have had my cousins Cal and Ryan over a few times. They managed to arrive in Reading as part of a London adventure on the same day. Same place and same day, but one was travelling from South Africa and the other from New Zealand. Without ever communicating with each other. What a coincidence. They didn't find it that amazing. Having my two young cousins around, usually in some state of inebriation, has made me wish I was younger and also made me realise how old I am. It is pretty liberating to not have much to stress about.

Jay is well and is still reshaping young minds and ensuring the highest standards in grammar exist at her school. She has even created grammar booklets for the kids as an easy reference. I have been doing a lot of copy editing work recently and use the primary school grammer booklet often. It worries me slightly that I have zero recollection of being taught any grammar at primary school and that ten-year olds are now expected to know that much.

Jay and Carolyn also completed a 40-length sponsored swim at Brockwell Lido to raise money for Macmillan Cancer Charity. It was in the middle of October which means the water was seriously cold. We were freezing on the sidelines watching, sipping on coffee, so swimming must have been a nightmare. They both completed it in a really good time and raised a decent amount of money so thanks to all of you who contributed.

Speaking of getting wet, during the summer we tried to have a typical English short trip to the beach and booked a hotel room for the night We both even downloaded new weather apps for our phones just to be extra vigilant. We picked a day when it was meant to be hot and headed to Bournemouth full of optimism.

After 3 hours of intense traffic we arrived and found congestion so intense and ill-tempered that we decided to pay a lot for parking and be done with it. I didn't have the heart to tell my wife that my weather app on my smartphone had shown clouds following us the whole time.

By the time we had negotiated the heaving crowds and found somewhere fairly quiet it was pretty cold and a bit wet. It seemed that all of humanity had converged on Bournemouth Beach that day, specifically to take a few steps forward, then stop right in front of me and look around aimlessly.

The day at the beach ended with hot coffee and a message from friends in London, telling us it was over 30C there. I think they said uncomfortably hot. That really hurt.

When we finally got to the hotel we were told there was no parking. I nearly threw the blue badge at the parking guy and thankfully he made someone move. Day at the beach over.

Of course the next day we found a wonderful quiet beach with loads of facilities. It was still cold and wet though. Jay decided there was no point coming all the way to the beach without swimming and had little dip. The sea too, was cold and wet. After a minimum amount of swimming time Jay spent the next hour trying to warm up.

One of the main problems of being in a wheelchair, and there seem to be many, is that beaches are inaccessible. I have to park myself on the promenade and look wistfully out to sea. I have tried my wheelchair on the sand and it is a non-starter.

It is not too bad with other people around. However, when you are by yourself it is a bit weird just hanging out next to a dustbin with benches and the seagulls for company. It was still hot in London so we left the South Coast straight afterwards. Still, it was nice to get out of London for a day.

We recently went to Hammersmith Apollo to be part of the studio audience for the recording of two episodes of Live at the Apollo. Two shows, three acts each show and a lot of laughter. I recommend going to see Adam Hills, Gina Yashere and Michele Wolf if you get the chance. Special mention has to go to Sam Simmons for being a combination of a modern one-man Australian incarnation of Monty Python and a demented Super Mario Brother.

Nothing better than spending three hours laughing. And it was free.

So everyone, we are as well as we can hope to be, and looking forward to Christmas with family.

Have a wonderful Christmas and a festive New Year and I'll try and update the blog more than once a year.

Lots of love to you all.

The Allardyces of Archiestown

2016-06-16T17:42:00.001+01:00

The Allardyces of Archiestown

What does Remembrance Day mean to me? I am a 36 year old with no military background or real understanding of the experiences of those who have lived through the horrors of war. This doesn’t stop me from being stirred by the Cenotaph ceremony or being filled with pride and admiration for the veterans taking part in the march-past every year.

Like so many of us, I have a familial link to those who we will honour on Remembrance Sunday as my family suffered tragedy on an unimaginable scale. As each year passes, it becomes increasingly important for us to never forget what happened.

As a child my grandfather told me the story of his father and his role in the Second World
War. He wanted to tell me everything, but still found the circumstances of his father’s death too distressing to discuss in detail. The photographs of my great-grandfather always took pride of place on our sitting room wall.

My great-grandfather, Captain Ransome McNamara Allardyce, was the youngest of four brothers, all born in Dublin to George and Janet Allardyce. His father, George Allardyce, was a Scot from Archiestown in the Scottish Highlands who had moved to Ireland to work as a master tailor, making riding habits for the gentry of Dublin. George and his wife Janet raised their four boys in a modest house in Ranelagh, in the south of Dublin.

Three of the four boys would go on to train as doctors.

Father George Allardyce with William (left) James (Right) & Ransome (Sitting)

All of the Allardyce brothers would die in the two World Wars.

The oldest brother, George Gilmour Allardyce, started his studies to become a doctor in Dublin before moving to Australia at the age of 17. Following the outbreak of war in 1914, he enlisted as a Private in the 4th Australian Field Ambulance, giving his occupation as a medical student, and by 1915 he was fighting in Gallipoli.

By 1917, whilst serving on the Somme, where he was gassed and later evacuated to England. He was selected for officer training and by 1918 he was appointed 2nd Lieutenant in the 4th Battalion Australian Infantry and returned to fight in France. After suffering injuries to his head and leg, he was again evacuated to England where he died from his wounds in 1918.

George was 22 years old.

The second brother, William Swirles Allardyce, was training to be a surgeon at Trinity College Dublin and was a third year medical student in 1916 when he enlisted in the Navy with the rank of Probationer Surgeon. He was lost at sea that year when HMS Negro collided with the destroyer leader HMS Hoste, resulting in the deaths of over 50 sailors.

William was only 19 years old.

By the time my great-grandfather, Ransome, began his studies to become a doctor at Trinity College Dublin in 1920, he had already lost his two eldest brothers.

Ransome’s surviving brother, James Craig Allardyce, had chosen a career in the military and entered the Royal Military College in Woolwich in 1916. He was promoted to Captain in the Royal Artillery in 1918 and served in both World Wars. During the First World War, he served with the Indian Mounted Artillery in India, in the Mediterranean and in Iraq. He was later wounded in France but after the hostilities had ended, James remained in the Army.

He was seconded as a Lieutenant in the Auxiliary Forces in India where he married Kathleen Louise in Lucknow in 1924. He was promoted to Captain by 1929. During the Second World War he saw service in Assam, Syria, Burma and Ceylon. Due to ill health, he was sent home to England where he died at the Military Hospital Fulford in York in 1944. He had finished his distinguished military career as a Brigadier General in the Royal Artillery.

He was 45.

My great-grandfather, Ransome, was the youngest of the four boys. He trained as a doctor at Trinity College Dublin, and practiced as a General Practitioner in Manchester, before moving to Japan in 1934 in order to work as a surgeon.

Ransome Allardyce

He moved to Japan with his wife Madeleine and their three small children: my grandfather George and his sisters, Jean and Anne. Ransome worked as the Superintendent of the International Hospital in Kobe-Honshu until 1939, when life became too dangerous for them to remain there. He sent his family ahead to seek refuge in Australia, as passage to Europe wasn’t possible due to the outbreak of World War Two.

Ransome with wife Madeleine, George (left), Jean (centre) & Anne (right) Japan

His family arrived safely in Australia and were given refuge in Sydney and later in rural Armidale. Before leaving Japan, Ransome gave most of his possessions to his servants, destroyed his car and smuggled out some pearls. He was briefly reunited with his family in Australia before he took up a position in Singapore as a Captain in the Royal Army Medical Corps.

He was working as a doctor at the Alexandra Road Military Hospital in Singapore in February 1942 when the country fell to the Japanese. When Japanese troops broke into the hospital and began firing indiscriminately, Ransome decided to challenge them. As the only person who could speak some Japanese, he hoped to reason with the soldiers.

A Red Cross representative witnessed Ransome walking down a hospital corridor to speak with the Japanese soldiers. He was never seen alive again. His body was found the next day in a mass grave and he was later buried at the Kranji War Cemetery in Singapore. More than 200 people were shot or bayoneted over those two tragic days in February 1942, in what later become known as The Alexandra Hospital Massacre.

He was 39 years old.

After the Japanese Army occupied Singapore, his family still had no definitive news about Ransome. They assumed he had been taken prisoner and Madeleine became ill from worry during this uncertain time. In 1943 the family were erroneously informed by the War Office that Ransome was still working as a doctor in occupied Singapore, however, they later found out that he had died during the fall of Singapore.

They were eventually repatriated back to the United Kingdom. Madeleine and her three children embarked on the five-week voyage to London in March 1947, before travelling up to Scotland. They left summer in Australia and arrived in the middle of a harsh winter to live with George and Janet Allardyce in the village of Archiestown.

Madeleine had lost her husband and her children, their father, and George and Janet Allardyce had suffered the unimaginable tragedy of losing all four of their sons.

After a few months in Scotland, Madeleine and her children left Archiestown and moved to Dublin where they finally had a home of their own and could try and rebuild their lives. Thankfully, my grandfather and his sisters recovered to lead full and happy lives as the memories of the war gradually began to recede. The trauma of what had happened never completely disappeared but simply faded into the passage of time.

In the village of Archiestown, in Knockando Parish, there is a war memorial that honours the names of all the men who lost their lives in the two World Wars. A short service is held on Remembrance Sunday every year to remember the young men of the parish who answered the call to arms in 1914 and again in 1939. All of these men, including the Allardyces of Archiestown, paid the ultimate price and their sacrifice should never be forgotten.

Of all things the bed is the best/ If you can't sleep you still can rest - Italian Proverb

2016-06-15T17:49:00.000+01:00

As usual, once I start writing updates for my dormant blog, it occurs to me I haven't written anything for months.

No matter what is happening in our lives, time marches swiftly on.

Nine years after starting my post-graduate course at the London School of Journalism, I finally wrote all of my exams and submitted my work and somehow graduated with a decent mark. I wasn't merited for my speed.

When I started at LSJ so long ago, I actually fancied myself being a bit of a John Pilger, exposing heartless corporations and ruthless governments, and making a nuisance of myself.

A few years of hospital soon put paid to that. You can still write from home or find stories if the locations you visit have wheelchair access, but it does limit your scope a little.

Obviously getting sick on top of that really doesn't help your journalistic career. Spending over a year in bed was pretty unhelpful as well.

However, whatever I am lacking in the necessary skills to be a decent journalist, I am lucky enough to make up for with a surplus of stubborness running through my veins which allowed me to finally finished the course. So the epic battle of trying to imagine articles to write without leaving my flat is finally over thank goodness. I have managed to get a few jobs as a copy editor. Not very exciting but money is money.

In October last year my condition deteriorated and scans showed the little b*****d had been growing considerably so it was back on the chemo again.

Since then I have had seven courses of Temozolomide chemotherapy and the latest scans this year have shown no real change since the tumour got worse in October.

Of course part of the treatment plan involves taking industrial doses of steroids again which means all the nasty side effects are coming back to haunt me.

I spent years reducing steroids only to be put back on them again. Unfortunately, I have returned to being like an inflatable beach toy with a giant head, but apparently I really need steroids.

To prove the doctors wrong and to limit the side effects, I stupidly tried to reduce my dose a bit and all it has done has put me in more pain.

Generally speaking, the plan from my oncolgists is to continue monthly chemotherapy, monitor my bloods, have scans, take steroids and hurry up and wait as they say.

I am in pain most days now and have recently started taking morphine as well as the usual painkillers to deal with it. I find being a Springbok and Liverpool fan hasn't helped my pain or stress levels.

For some reason morphine just makes me a bit goofy and itchy but doesn't provide much relief. The best thing to do in these situations seems to be to just go to sleep and hope the next day is better.

These days, by six in the evening, I am pretty much done and have to get into bed to give my back and mystery pain in my side a rest.

So I am not much fun at parties anymore, but I'm sure my previous one-man crusade to rid the world of Sambuca and lonely pints at closing time isn't missed by many, especially my wife. I suppose we all have to grow up eventually, whether we like or not.

Speaking of my lovely wife, we recently celebrated our 5th wedding anniverary (16 years in total) and we are going to treat ourselves to a meal at a decent restaurant.

Jay is still teaching in the afternoons and has designed loads of grammar booklets and activities to help the poor little nippers through their exams. I really feel sorry for kids these days. Not only are they continually assessed and analysed, they always seem to be under pressure to meet unrealistic expectations.

Of course, that means teachers have to work doubly hard to manage everything. I get to listen to loads of teacher talk when we have teacher friends over...

At the same age, all I did was pick my nose, daydream, draw cars and talk a lot.

Nowadays kids are expected to explain the ins and outs of the Large Hardron Collider in their Standard Assessment Tests (SATs) or explain why English has loads of silly grammar rules. I tried to answer a maths question aimed at an eleven-year old and nearly had a nervous breakdown.

Gone are the days of rocking up at school dressed as a swordfish or telling your teacher you have a pet dragon. In the old days in Zimbabwe, if you could spell your name correctly on your exercise book, count to ten and use a toilet dilligently, that usually ensured a safe passage to high school.

We went up to Scotland for our first mini holiday in four years. We visited some good friends and did a bit of sightseeing, including a trip to a tiny village in the Highlands where my great-grandfather and his three brothers hailed from. Their deaths in the Great Wars (yes all four brothers died) are commemorated on a mini-cenotaph. It was quite an emotive experience seeing their names and visiting their village. I'll put their story on my blog at some stage.

All things considered, we are both okay and looking forward to some sunshine and summer socialisng. Given that I am supposed to have expired some time ago, things could be worse. I appear to have taken on the fatalist attitude of a Russian novelist who has just been told by the doctor to give up vodka and is trudging home with a stone in each of his shoes. This morbid outlook seems to work for me.

Most of all, I am looking forward to going to sleep nice and early. Not exactly exciting but essential.

So take care, see some of you soon and to everyone else have a great summer.

Polio virus to treat GBMs - finally something positive

2016-02-22T17:09:00.003+00:00

This looks like the first realistic possibility of treatment for Gliobalstomas.

http://www.forbes.com/sites/davidkroll/2015/03/30/60-minutes-covers-dukes-polio-virus-clinical-trial-against-glioblastoma/#1822d22869b5

The 60 minutes show is available online

http://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/
http://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/

When all else fails do something stupid

2016-01-13T18:27:00.000+00:00

Merry Xmas Everyone

I hope you all had a wonderful Christmas and a festive New Year.

We spent Christmas at home with Jay and my father and mother-in law, eating professionally, before spending New Years Eve with friends eating some more.

I think I have finally had enough of consumerism. It felt like Xmas has been plugged since August. People were eating mince pies in October. Then there was Black Friday, Cyber Monday and now Panic Saturday. When credit card bills arrive in the New Year there will undoubtedly be Suicide Monday. I'm glad to see Valentine's Day is being vigourously promoted already.

January seems to be the time when everyone tries to get rid of unwanted Christmas presents on Ebay.
So, if you are in the market for a formal tie made from a preserved trout, a Mugwort Vaginal Steamer or a toilet seat in the shape of Darth Vader's head, then hit the internet and all your dreams can come true. Surprisingly all of these wonderful gifts are real things.

Due to the chemotherapy thinning my hair I have taken to wearing a hat. I wanted the Don Draper look but I can't be bothered wearing a suit every day to match my Fedora, so instead settled for the geezer look. I tried a few hats and the only thing that suits my abnormaly huge head is a flat cap, so I now look like I race pigeons and greyhounds, or sell fruit and veg from my car boot.
I had a scan on the 4th of January and things haven't changed since November. So the tumour has stayed the same size which is good news I suppose. It means the chemotherapy has stopped it from growing for the moment.

I decided to increase the pain in my head the old-fashioned way by being stupid and banging my head. I tipped backwards out of my chair a few nights before the scan, smacking the back of my head on the pavement, but thankfully I didn't do too much damage, though my pride took a hammering.

I have an infection again, so I am not well enough to go on chemo at the moment, which is frsutrating as I have a lot of exams coming up and don't want to be ill on those days. They are treating me for the infection before I start chemo, but it seems to be a never ending cycle of the chemo making me sick, then I can't take it. Then when I can take it, I am sick again shortly afterwards.

Doctor knows best as they say.

My blood results always seem to show high infection markers or low platelet counts. I need to eat more spinach or kryptonite or something.

So all in all, we had a good Christmas and now the January detox begins. There seems to be a lot of diet shows on TV at the moment which is a good indicator of the level of general over-indulgence. So bring on the quinoa, mackerel, chia seeds and other super foods. I am not looking forward to it, but luckily Santa and my lovely wife bought me a Nutri-Bullet so I can liquidize everthing. Delicious.

Best wishes and take care,
Bruce

Round 2 of the Merry-go-round

2015-11-24T18:52:00.000+00:00

Hi everyone,

I managed to find myself in hospital again, the night before I was meant to start chemo.

My platelet count was 50, which is apparently not good, and after being discharged at 6 in the morning, we dragged ourselves to the Marsden for my appointment. They took my blood and I passed out for the first time ever, so the pholobotomist panicked and wheeled me to my appointment. It was an ignominious entrance. My arm is black and blue, as a low platelet count basically means your blood is too thin and you bleed and bruise easily.

All of this meant that the Doctors couldn't safely give me my chemo. This meant a holiday from the poison last week. By last Thursday it was in the 200's and now it is back to normal.

My reward was starting chemo yesterday.

Thankfully I am on a smaller dose, but missing a week means I will now be on chemo over Christmas which is good news for turkeys and other edible Chrismas animals.

I have decided to see as many of friends as possible so have been a real socialite. We have portable ramps so if I know you, be prepared for a home invasion sometime soon.

Taking steroids again has at least given me some motivation and studying and doing a bit of work here and there is keeping me busy.

Pub lunch with the homies

The Ladies of South London

30th Birthday with Cuz Ross

Darling Wife and Candy


Sam giving it some blue steel Sam & Candy's kids, Isla and Faye, being cute

So all in all, despite the medical sh**storm, we are trying to make the most of it and get out and about.

The next thing we have planned apart from enless socialising, is going to watch Bill Bailey live, which should be fun. At least I know I can't be called up on to the stage as their are no ramps. Result.

Until next time, have a great Christmas and a Happy New Year.

Infection time

2015-10-30T18:28:00.002+00:00

That was quick.

Four days after finishing Chemo Round One I found myself in hospital.

I was feeling a bit rougher than normal at the beginning of the week but I am used to feeling rough so paid no attention to it. I thought it was a dose of the blues after watching a lifeless Springbok semi-final defeat, but when I started passing blood I realised it wasn't a sport related malady.

After calling an ambulance and being picked up by a paramedic duo called Ben and Jerry I was admitted to St. Georges on Tuesday and given IV antibiotics. I have a bad Urinary Tract Infection so had to spend a couple of days in hospital. I am such a frequent flyer that I knew at least three of the nurses and doctors so they kept me entertained. The Emergency Room is used for a TV programme called '24 hours in A & E' and is busier than any train station I have ever been to.

The worst part of it all is that there was no internet access or phone signal. So apart from getting IV three times a day, I was also forced into a digital detox with no internet and email. That was brutal. I feel very detached from the world when I can't get online. At least it forces me to write the blog when I have been incommunicado for a couple of days.

I also learnt a valuable life lesson. Junior doctors all need to go on more training when it comes to taking blood and inserting canulas. The first doctor who treated me tried four times to insert a canula into my hand without sucess. I always maintain a very stoic attitude to pain, but considering my hands are the only part of my body that actually work this was a bit much. I was relieved when I spotted a specialist nurse I knew walking past. I asked her do it instead and 30 seconds later it was sorted.

They lost my initial urine sample so they aren't totally sure exactly what specific infection I have. Needless to say after a couple of litres of IV antibiotics, the infection isn't identifiable anymore. When I was speaking to the consultant, some guy came up and told us they couldn't isolate the infection from a later urine test. The consulant and I both started laughing as I had taken enough anti-biotics to cure a herd of cattle.

So I stayed on the acurte ward until last night. I convinced them to release me early and we literally bolted for the exit. The staff are always amazing and try really hard, but I can't manage my own drugs when I'm an in-patient and need an air mattress and to be turned at night because of my skin, and these things invariably never happen as planned. So, being at home is actually safer once I have the antibiotics I need. So I have pretty strong meds for the next week or so and feel like I have overcome a hurdle for the next couple of days. Plus, the amount of money we were spending at the Marks & Spencer food shop at St. Georges was becoming a bit ridiculous so we needed to get out of there.

Jay and I finally made it out to the car from the ward at about 8pm last night and were parked in by an ambulance for an hour which seemed like an ignominious exit after negotiating an early release. My sister-in-law Gaylee has come to visit from Spain, after spending the year working on a yacht on the Mediterranean, so it is great to have her here entertaining us, feeding us and keeping my wife on her toes. It is a pity she has tonsilitis which hasn't been fun for her. They have gone shopping on Oxford Street on a Friday evening which requires a level of committment and rash conviction I don't possess.

Hopefully the rugby final between the Aussies and Kiwis will be an exciting competitive match. For me, as a Springbok fan, I feel like I've won tickets to see Kings of Leon but they've been replaced by Chumbawamba at the last minute.

I'll watch it, but only just. Lots of love, Bruce

Back to square one

2015-10-20T13:13:00.002+01:00

Hello All,

I decided to take a break from writing my blog this year. Not because I was emotionally drained or depressed, but for a more positive reason: I was finally turning a small but significant corner.

By early this year, my pressure sore had finally healed and I could get out of bed and go outside. I don't live in an area of outstanding natural beauty by any means, but it was great to go outside or to go to the movies and see friends. The slog of being bedridden for about a year and a half was finally over, and the combination of a serious pressure sore and being on life-support for septicemia hadn't killed me, so I was feeling pretty good.

I managed to get off all the drugs that made me sleepy, sloppy and unfocused. I also reduced my steroids right down so I felt lighter and less bats**t crazy. I also got to bid the flesh eating maggots and vacuum pump adeiu from my thigh and generally felt a lot better.

It is amazing how being ill and bedridden simply makes time vanish, and before you know it many years have slipped away. So I basically got out of bed and thought I'd better do something. After a few weeks of not being able to sit up straight and being dizzy from lying down for so long, I could finally move myself around fairly well. Kind of like having to learn how to walk again, just with wheels. Anyway it took some getting used to.

Then reality hit me as it does. I haven't worked full time for a long time and have a terminal illness, which isn't great for borrowing money or job prospects. I can imagine some sharp-suited Bank Manager or HR person asking me in an interview where I see myself in two years.... I don't think saying "um, in an urn, on the mantelpiece," is appropriate. So it has been hard to know what to do next and make plans for the future.

Anyway I managed to get a bit of work copy editing and doing some technical writing for friends which helped alleviate the boredom because, with new found freedom, comes an immense level of boredom and restlessness. Plus I think I have watched every decent box set ever made. Thank you Mad Men, Top of the Lake, Bloodlines and Friday Night Lights for keeping me sane.

I have since resumed my post-grad diploma with the London School of Journalism for the third time. I have been there for longer than some of the staff it seems. Anyway they have kindly let me attempt to finish the course that I started, maybe 8 years ago. It is a bit of a monkey on my back and I really would like to get it finished sometime this century.

My lovely wife is well and still teaching in the afternoons at her school in South London. She enjoys her tutoring sessions with the kids and I think the school really values what she does. She has just started doing a part-time course at her old university in Roehampton, which is focused on how to help kids with dyslexia. It is really quite technical and apart from diagnosing everyone she meets with a mild form of dyslexia, she is well and manages to work and look after me somehow.

Of course as soon as it was all looking rosy, I started getting a lot of pain at the base of my neck and in my shoulders last week. So it was off to get some morphine and a MRI. The last scan in April 2015 had shown tumour stability and even some improvement, but the scan I had last Tuesday now shows some damage further up my spine and the cancer has spread in both directions up and down my spine. This is not good news obviously.

When I met with the oncologists yesterday we agreed to start on chemotherapy so I am back on Temozolomide immediately. I will take a course of the drug every month for the forseeable future, however long that may be. I haven't lost any more mobility yet, but obviously the chemo and pain aren't much fun. Onwards and upwards I say. At least this is all happening in the middle of a great Rugby World Cup.

Thanks for the messages and support. I am lucky to have so many good friends. It has been a difficult time over the last 6 years. I have had people set up fundraisers in the UK, SA and Zimbabwe and even as far away as Australia over the last few years, which really helped us. People have sent me miracles cures, prayers, spiritual interventions, fishpaste and many other things which we appreciate. For now all I need is a bit of divine intervention. Take care and I'll be in touch.

The more things change, the more things stay the same

2014-11-21T18:43:00.000+00:00

Hello Peeps

I hope you are all healthier, happier and wiser since I last communicated. Somehow the ***!!!! previous blog has disappeared. Of course, it was hugely funny, insightful and thought-provoking. Alas, cyberspace (or potentially the author's incompetence) has claimed another victim.

Recently, I have been getting up out of bed more regularly and going out a bit which is really positive. I hadn't gone out for over a year so just going outside for a meal and to the movies has been a treat. I have lost a year in bed but once I had a hair cut and shave, I was ready for action. Progress is slow as my pressure sore, although healed, is prone to blistering if I sit out for too long. So far I'm up to about six hours at a time.

I still spend a lot of time stuck in bed and I think I probably watch too much TV. I am relatively confident I can now fly a small plane, run a ruthless criminal enterprise as well as process a crime scene without contaminating it. Who says TV teaches you nothing? Thankfully, I have still been reading so my brain isn't complete mush.

Since I have been paralyzed I have seen many "cures" for paralysis hit the news. Stem Cells, Electric Impulse Therapy and many other cures have been bandied about and the painful truth is that all of it is rubbish. Then the other day I watched this http://www.bbc.co.uk/programmes/b04mm8zl

I was pretty much blown away as it seeemed there is some hope of a cure. That is all you need to keep going. Click on the link and spend a little time watching the Panorama programme as it is amazing.

Of course I have a tumour that is causing all the problems. I have decided that once I have had a scan next month, and if nothing has changed, I will explore the option of possibly finding a surgeon who is willing to operate on me. It simply does not make medical sense that I am still alive if I have such an aggressive tumour. The NHS can't treat the tumour further and, the last time we checked, they were not willing to remove it, but I am not going to keep sitting around and wait for it to do something nasty.

In other news, last week I was quietly celebrating a year of hospital-free existence. This was shattered when a nurse decided to catheterise me with what seemed to be a crossbow bolt. I lost a lot of blood and my wife nearly fainted but she powered through. It was like a scene from a Halloween movie and I ended up in A&E again.

Thankfully, for once I didn't get a bad infection so just spent a few days in Hospital and was released with only a small pressure sore to show for it. In a fit of Victor Meldrew-like stubborness, I refused to pay £7 a day to watch television so for entertainment I read a couple of books and watched a patient who looked like a pirate, behave like a pirate - screaming 'aargh' a lot and attempting to destroy the ward.

Jay is well and still tutoring kids in the afternoons, slowly becoming a grammar guru. She has also inadvertently become a nurse over the last couple of years with my continual run of bad health, and has learnt a lot from one of the District Nurses so looks after me amazingly. Otherwise we are both well and will be spending Christmas with Den, Pegs and Gaylee at home. I will make an effort to update this blog more regularly. I hope you all have a great festive season and a happy New Year.

A wasted year

2014-07-22T19:06:00.001+01:00

There are too many different people in too many different places who have had their own trials and tribulations over the last year for me to get away with a generic "how are you?". That's all I can come with up right now. So I hope you are all well.

Like a giant rock I have spent nearly 365 days unmoved, gathering dust, fixated on the immediate surroundings of my bedroom. I have got up maybe ten times in a year, never for more than 45 minutes at a time. Peeking into the kitchen on one of my rare excursions was genuinely exciting so that sums up how low the bar is in terms of my entertainment. To be fair I did have a dramatic six weeks in hospital and the hospice with septicaemia but that wasn't exactly fun.

My pressure sore has finally healed but the skin is so susceptible to breaking that I can only get up for very short periods in a reclining wheelchair and then have to get back into bed to take pressure of the area. Thankfully the wound healed after having vacuum dressings and Welsh maggots thrown at it amongst other things. This has also reduced the time spent by large amounts of Health Care Professionals with clipboards gathering around my backside like it's some sort of tourist attraction.

Life has been the usual combination of frustration and boredom because I'm bedridden, but without any real fear as by some stroke of luck, fate, whatever you want to call, my Gliobalstoma Multiforme appears to be on holiday. From all I'd been told and all I'd read, these tumours don't go on holiday. Once it had been classified as a WHO Grade IV tumour then I was basically waiting to die. Now nearly three years later I am still very much alive and a little bit dazed and confused to be honest.

I initially spent a lot of time downloading end of life literature and travelling around saying my goodbyes to people, which was emotionally challenging for us and those involved. Now I am still here but it doesn't feel like success or like I've beaten this disease. The oncologists scanned me last year and said there is no tumour growth. They do not want to see me until I exhibit symptoms of cancer. They cannot tell me I am better. I don't blame them but I resent the complete ambiguity of their responses. To them my situation is simply life being extended and nothing more. I still wish science was exact.

Now the next time I hear a story of someone's elderly relative who was told they had a week to live but has now joined Cirque Du Soleil as a lead acrobat, I might throw up.

It's a bit like standing on the edge of a busy motorway with your eyes closed knowing that eventually someone will crash into you, but you just don't know when. I am not a fatalist or one of those people who is obsessed with their own mortality. An acceptance of what's going to happen in future is not an uncommon feeling in people, but I don't think it is healthy for most of us. However finding the willpower and motivation to change my future is proving more difficult than I thought. Once I am up then I can start to go out, interact with the world and try and carve out some kind of a future without worrying about dropping dead.

My lovely wife is well and is still at her old school, tutoring in the afternoons. With me bed bound she has to do absolutely everything for me as I cannot even get up to get a drink at the moment. Jay has been through the mill over the last six years and I am a very lucky man as she has had to be a nurse as well as a wife, as we both agreed that it was more practical and less intrusive for her to learn how to perform a lot of the tasks the nurses are meant to do. Otherwise she has been busy with baby showers and weddings as summer is so busy.

Summer, however, seems to bring out the worst in some people. The estate we live on seems to be infested with loud, continually drunk idiots who spend lovely sunny days hoovering alcohol, shouting obscenities at each other before the inevitable descent into violence. Oh well, at least the police will always have plenty to do. When I am up I am going to get into my wheelchair armed with a taser and dispense some neuromuscular incapacitation that doesn't involve 5 litres of White Lightning cider. Hopefully my next blog will not be written from a prison cell.

Goodbye for now, thanks for the visits, messages and help over the last year and even though I don't drink I hope to resume my position at the head of a bench at my local pub sometime soon.

Septic Boy

2013-11-05T21:25:00.001+00:00

Hi there,

I hope this finds you all well. By now some of you would have found out about my last six weeks or so from Jay sending out information.

Six weeks ago we decided that I would go to Trinity Hospice for some respite care so I could have some medical advice and Jay could have some rest from having me at home for twenty-four hours a day. I have been bedridden due to the pressure sore since August the 4th and that is quite trying for both of us, especially with my ongoing psoriasis issues.

So I arrived at the Hospice at lunchtime on Monday 23rd September. I had a general check up by the doctor on duty and all was fine. By later that evening I started to get a bit of a temperature. By midnight I had developed a severe fever and uncontrollable shakes, and was sent straight to St.Georges Hospital, Accident and Emergency. By this stage I had gone into septic shock which meant that the infection had started to interfere with my organ function. My blood pressure dropped to such a low level it was preventing my organs from receiving enough oxygenated blood and my heart rate was through the roof. They worked on me in A&E until the early hours of the morning when I was then transferred to ICU. By this stage my kidneys and stomach were shutting down but they continued to dose me up with huge amounts of IV antibiotics and a variety of other drugs. Eventually by late lunchtime on Tuesday I was beginning to respond to the drugs.

We then had a few more stressful days where I was pumped full of more antibiotics and had loads of medication to lower my heart rate, raise my blood pressure and oxygenate my blood. Essentially it was touch and go whether I would make it, and thankfully I did with the help of a load of ICU doctors and nurses who do an amazing job.

I spent a week in the Intensive Care Unit going slightly crazy and had a touch of paranoia, delusions and confusion which didn't help things. Apparently ICU delirium or psychosis is not that unusual, but I didn't realise that as I was hallucinating and thought that everyone was out to swiss-cheese me. I was so determined to get out of there so I was happy when I got discharged back to the hospice the following Wednesday. Unfortunately, I got a fever again and landed up back in hospital the next day for another week.

After that I went back to the hospice where I was put onto another dose of IV antibiotics for seven days as I was still showing signs of infection. I spent a few weeks there and I am now back at home after five long weeks of hospital and hospice stays. Thankfully everything has stabilised for me and whatever caused the sepsis has gone. They never figured out whether the pressure sore caused it or whether it was an infection from somewhere else, but it was pretty scary nonetheless.

So now I am back to square one after setting another interesting challenge to the medical community to keep me alive. My pressure sore is looking less horrific and hopefully it will improve so I can be up before Xmas as I am going a bit nuts being in bed all the time. I don't know what's next but I would like a bit of a break.

Hope you are all well and keep in touch.