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.