Update June 2013 - I am still ALIVE (screw the oncologists) & ... VIETNAM!!!

My dear family, friends, & supporters

Well the next phase of my 3 plus year cancer journey has now been reached. My liver is officially kicking my arse and my energy levels have sapped to about 30% -50% depensing on the day. Running is out, walking very gently still in. Everything and I mean everything (except staring in to space - hardly a thrill-a-minute [things have improved somewhat since I originally typed this though not by much]) is a drag these last few weeks. My mum has been trying to hard to keep us busy with nice things to do which has been keeping me sane but the day to day reality is thats its really hard to keep a smile on my face. My oncologist has scanned me again, liver is enlarged due to enlarged tumours, lungs metastases are larger and growing, plus I now have polyps of cancer growing all round my stomach lining and digestive system from what I understand further causing digestive troubles. I am on lots of medication now with varying degrees of success, to help my bowels, things to help me sleep, things to me wake up, to reduce fluid (my legs blowing up like a weightlifter for a few days last week up), various pain killers, things to bring down inflammation, etc etc - a veritable pharmaceutical cornucopia. which of course isnt helping my energy levels either. I have pain too but we are managing that quite well well far in general, though daily dose changes are often required to get to sleep. Mainly the biggest drag is not waiting to sit still for long yet also not having the energy to really apply myself to anything either. I still havent found a book I want to read. I hope I have mainly eliminated the typos in this i'm writing now [am doing now actually - 20 Jun]. 

On the plus side, I did manage to get the 300 records from my new vinyl label 'Mariana' over to the distributors. Its funny how getting that done followed immediately me getting much worse; as if my body was given the extra ooopmh to do what it needed before finally taking a hard earned rest after Japan & Taiwan (a great success tour wise especially Taiwan which was gig of my life so far but a real struggle energetically to say the least) and getting the first Mariana release done and dusted. Now Its in the distributors capable hands to sell it though I will be selling some privately too to friends so drop me a line ASAP if you'd like a copy! 


Needing things to pass the time is main challenge as that really is what I feel I am mainly just doing now. with only about 35% energy even checking emails is not fun - certainly doing yoga homework is not possible [ I realise I am having to give up the course with my decision to travel for treatment]. Even reading magazines, watching crappy films or books is not easy. The Simpsons is about all I can manage to sit still for. I still have a reasonable appetite having got through the sickness phase of my time in Japan, so am still cooking a bit which is good. I havent been able to do much yoga practice at all of late and I may oh so sadly have to quit my course in the not too distant future. Being realistic there's not much point being a teacher if I'm not alive to teach though is there so in reality its not as painful a decision to make as it might first seem. I'm sure I can pick up where I left off in the future sometime anyway. I have learned so much already thanks to my wonderful tutors & colleagues and I continue to wish them all the very best with the course. 

So, the future. My dream (we have our flights already & visas are on the way actually) is to go to a clinic in Hanoi, Vietnam to see a Dr Ba. We leave Thursday. Doctor Ba has over 30 years experience in both western & eastern medicine, comes highly recommended by my own acupuncture doctor David plus I will be treated in an all mod con's hospital under one roof. Kind of the situation I have been looking for ever since I first started researching alternative healing for cancer actually! See the next passage for some background as to why I am headed there this Thursday. It sounds from another patient of Dr Ba's (there now and doing very well herself so far) like the all day infusions will be tough but if its the right place to be I have just got to go for it, right?! The below from my own acupuncture doctor who has gone all the way to Vietnam to see for himself lately also adds massive impetus for me. 

David Nassim "HealthInstinct.org" June 2013

"Dear Dave. I don't feel another dose of chemo of any kind would be useful on your system when you have not gained weight for a long tim,...the key thing about Dr Ba and the Chinese medical approach is that hey are doing the reverse of chemo - they are aiming to strengthen the body from the moment you step though the door, everything is a tonic but specific to the damaged tissues; it turns chemo on its head really. You have done chemo and got the T-shirt and it was hard so suggesting now you do it again I think would be ill advised in my own personal opinion (with which I heartily agree - DT) but I'm not suggesting anything other than a conversation with Dr Ba as he will be able to advise you better then I. He is the specialist not me. This article explains the difference of approach to chemo (as opposed to my 2nd choice, finding which chemo drug I am sensitive too & targeting the tumours more specifcially - let's call it the 'German' approach as advocated by Dr Trefizer in UK & others in Europe - DT):

http://www.vietxuan.vn/en/tin-tuc/19-nghien-cuu/80-calming-membranes-taming-cancer
(some very interesting research & results from Ba's work in the USA here if you have the time to look)

Yes you will hear this same idea with Trefizer and with the Vitamin C people but they are using one approach and what Trefizer doesn't have is a foundational base in energetic medicine. From what I have seen he is doing research into cancer with patients. Dr Ba on the other hand has already DONE and continues to do research but he also actually knows what's going on with cancer, he knows when to egg it on and when not to, when to use this and when to use that … this is utterly unlike these clinics who basically have one protocol and apply it to everyone. Dr Ba's treatment is specific to you in every way. I still believe in the power of your body to heal and so does Ba - there I no attempt to kill off here only the attempt to build-up."

Its a bit of a nightmare that the clinic is so far away but such is life. So, I am once again (so sorry!) asking again for you to put your hands in your pockets again if I may. The bassline figure raised so far on my phase 2 started earlier this year is £3,411 FYI as of June 10th. Even if I can raise just 10,000GBP more this will help a great deal. Business class flight for myself to ease the burden of the long journey plus 2 months of treatment protocol (relatively cheap once I am there at 100USD per day & feeds me with macrobiotic type food as well as daily infusions and getting herbal medicine and acupuncture if I need it) but anything to help will so so appreciated. In fact just 1GBP plus a nice comment would be amazing. We are certainly not broke in my family its mainly just nice to be somewhat independant. As ever please excuse the lack of personal thank you's. I will try to upload a video once I am settled in. Plus this decision is very much MINE and being able to pay for it 'myself' means a lot to me. Dream trips to the HImalayas etc and continuation of my 'Bucket list' seem far away right now. Again no point having savings with no life with which to spend it! The other option for me doesn't really bear thinking about. I have already seen them and they are lovely but the hospice here seems like an end of the line thing for me no matter how you look at it and I am just not ready to 'leave it to god' as some might say it is time to do now. I am young and I have my dreams. I still have a strong will to live & I still picture myself with my future grandkids walking on a real beach in a real place. I'm just not ready to accept a prognosis of 3 months which is the max my oncologist is giving me & she said herself she is not even sure chemo would help me right now, when someone with whose ideals I relate to and actually agree with (namely my acupuncture man David and Dr Ba now too) still say I have the chance I could live 10 years more, or even be completely be cured. That I dont even have to fight… just accept and believe in what they are doing, which as it happens I jolly well do with all my heart!!! My oncologist continues to be amazing I am even alive right now yet my liver function and bloods miraculously are almost normal still so, go figure! As David says, he believes (and so do I even with all this symptomatic craziness right now) wants to heal. I just need to keep buying it more time now. 

Nothing is impossible!!! 

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Buy Mariana Wax 000 on vinyl (including one of my own tracks as 'Tr nch' - with James Cameron starting to promote the film of his own voyage to the Mariana Trench oh-so perfect timing too!

a] via Bandcamp (I can post next Monday Tuesday or Wednesday only though as I will be away - digital version is to follow in a month or so, with bonus tracks I hope. there is no plan for CD version at this stage, sorry! 
b] in all your favourite online record stores www.boomkat.com www.juno.co.uk etc by June 22nd

Plus my DJ set from recent tour to Japan:

Dave Twomey recorded Mariana 4th Birthday @ Eleven, Tokyo