It's been a year...

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

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?

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...........

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

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.