Saying hi to everyone

If you feel it might help others to hear about what you've been going through

Saying hi to everyone

Postby mattie » Thu May 01, 2014 6:11 pm

Hi!.jpg (6.21 KiB) Viewed 5927 times
Hi folks,
not sure if right place to say hiya but got to start somewhere. Quick waffle bout me & link to petition. I was diagnosed on 11/02/2013 with Stage 3 Dukes' C. Rectal Cancer, the tumour is low down about 4 cm from the opening, thought it was a bad case of piles to be honest, what a bummer I thought (sorry but humour's so important to me) Had first meeting with my consultant on my birthday 28th Feb of all days, which made me laugh, usually on my . After 6 weeks of chemoradiotherapy that summer which shrunk the tumour by over 50%. I decided to refuse surgery offered, the tumour is low down only 4mm from the opening so only a total removal of rectum with a permanent Stoma was suggested. It's all bout % in the end, mine 47% live 5yrs with surgery,

I then went for 4 monthly (Sept-Dec) Transarterial Percutaneous Chemoembolization (injecting the tumour directly with chemo drugs) with the excellent Prof Vogl at Frankfurt Hospital. It was expensive (€4000+ flight a pop, whats the use of savings if not bout hey) and people pay more for a new car nowadays. That’s how I approach things now so will always find the cash somehow if you think how much folk spend on material things & our bodies the most important thing to put right in the end.

Had a second opinion with the top rectal surgeon in the UK in Jan 2014 who suggested the same surgery as before being the best thing to do. Also offered me surgery that would join me up again without complete removal of my rectum, leaving me a big chance of being incontinent though due to radiation scaring, nothing’s simple.

I feel fine in myself & have no symptoms from the tumour for several months now. My diet is sugar, coffee, alcohol free & I’m a vegetarian & take medicinal mushroom powders, fab website which I recommend as well as many other herbs/minerals that I’ve researched on the web to detox & strengthen the immune system. The tumour’s been shrinking after treatment but will continue to attack it, using a more holistic alkaline diet with weekly Shiatsu massages to get the body sorted. Living a normal life & spend what was wine money on my special diet.
Have learnt now that any twinge or normal tummy upset is part of life & not to freak out & I have to just get on with life, like everyone else.

It’s a gamble to refuse surgery I know but am so confident & have to try everything I can to avoid having my rectum removed & having a permanent Stoma, which I would find very hard to live with. I know I might be in denial & for most folk the best place for tumours is in the bin but have to try all other options first & feel all I’ve been doing diet & lifestyle changes have really had an effect. I’ve found the NHS has given very limited choices for me without offering anything else except surgery & the regret the chemoradiation they gave me & the damage it’s done, still have side effects now.

Any ideas & suggestions will be appreciated & be interested to hear of any things that have helped people live a normal life as I do as much as I can.
My partner forgets most of the time I’ve been ill as I’m always cheerful & normal, not drinking wine & minimum stress is the main & crucial part to remaining free of symptoms for me now & loved ones around me are all much happier as a result.

Anyway I hope I've helped you guys & any questions you fancy am happy to chat bout & love your ideas.

Please follow the link to the petition, it'll be so important for cancer & future treatments given, if gets through. The medical laws have been changed over the last 40 years so that all the brilliant breakthroughs in cancer are denied to the British public. Lord Maurice Saatchi had to watch his wife die, while his doctor told him the only thing he was allowed to prescribe her was chemotherapy, which would shorten her life. He hopes to bring the Medical Innovation Bill to Parliament, so instead of obeying a rigid government rule, a doctor will be able to prescribe whatever treatment is best for the patient please sign Lord Saachi's Medical Innovation Bill and pass the link onto friends ... alog_false

Sorry for what turned out to be a long post, tend to waffle on.
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Re: Saying hi to everyone-thanks Mattie!

Postby Judith » Tue May 13, 2014 6:33 pm

Thanks so much Mattie and I do hope a lot of people will sign for the bill you mention right at the end of your post--really important and great that you flagged this up.

Also great that you have launched this new forum: I just re-read something Henning Mankell (the guy who wrote Wallander and started off our love-affair with Scandi-crime) wrote the other week re his cancer treatment: 'Is there anything more important for a cancer patient than a conviction that one is being told the truth and can believe the words one hears? I really don't know what that would be'.

So he feels held and contained by his oncology team: what we hope to provide on this site is a kind of holding and containing of all our inevitable anxieties (and 'orthodox' treatment in spite of what HM says here, does not have all the answers as the most open medics admit ). And as people have said to me, once you are discharged the anxieties inevitably flood back...
floodgates.jpg (110.81 KiB) Viewed 5924 times

So this forum can hopefully be one where people can unload some of their worries, and others can respond...No-one has all the answers but supporting one another through the journey is vital. I do believe this is a good model for healing (and as a psychotherapist maybe I would believe that!) Let's see how it goes and thanks again for starting the stories rolling...
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