Friday, 25 October 2019

the regime..

so a blog has to be honest - the hardest bit. Up until now Ive used humour and self depreciation to sidestep my not so secret comfort blanket. That which used to be illustrated with a Golden Virginia logo and now has me in discussions (with actual secret smokers) as to which deadly disease photograph we can bare on out tobacco pouches. One friend of mine says she can't stand the 'bum hole' neck picture and asks the tobacconist for a different scare. Im not sure which one. She's trying a homeopathic mix and smokes roll ups that resemble a match in width.

Ive tried to tell oncologists that I may need psychological help here but am told it doesn't make any difference to my sarcoma and that I'm in more danger breathing in the fumes on a London street. I don't have lung cancer and if the sarcoma decides to metastasis to my lungs ( a probable site) it will still be a sarcoma rather than lung cancer still no help from research there then.  Friends and family veer widely with my moods from cheering me on during my "Im not smoking anymore' " revelations to "Oh fuck it have one" when they discover me hovering outside some door in shame. It's tricky though when part of my regime includes the un-researched benefits of CBD oil, to be administered in a variety of ways ( tbc) and I can convince myself that any form of getting the stuff into my system is worth a go. The selection of turkey tail and turmeric powders etc, etc and repurposed drugs I am now taking daily are a challenge, my porrige tastes like it has gravel in it and my clothes all have remarkable un-get outable yellow turmeric stains, as have the chairs, cushions and the cat.

Sunday, 20 October 2019

to blog or not to blog....

its difficult to start blogging again- my morbidity gets boring to talk about. Ive been trying to be positive, amongst intermittent humour failures,  but its exhausting telling the same story- not least because my own brain is cluttered with recipes for survival.

and the last time I wrote notes about adversity (at the request of a charity I know) my son found it and wrote underneath; 'one day I took it upon myself to start a club, in which people could express freely their love of various cheeses and cracker combinations' ....

In June of 2019 four months ago, a scan showed that my dedifferentiated retroperineal liposarcoma  had returned as a 3.7cm x 2.6cm nodule located between what is left of the pancreatic tail and next to the aorta. It also appears to be by my duodenum and bowel. In three months it has grown to 3.9cm x 2.9 cm- relatively slow growing at the moment.

Ive had two operations ( and a session of radiotherapy) by a most amazing surgeon and this has kept me alive for the past 9 years. Quite a feat given the prognosis, due to limited #research and #funding, for #Sarcoma #cancer worldwide.  Apart from hellish recovery memories, Ive been ok and kind of normal ( for me), although don't ask me to walk up a vertical hill in a hurry.

I have been told I can't have any more operations ( its too near vital organs and your scar tissue is like wood) and radiotherapy can not be used in the same place twice (and anyway the sarcoma moves about). Ive been given prognoses ranging from nobody knows to 12 to 18 months, to 12-24 months- but the fact is its now incurable if it can't be removed. Chemo will be my final option in this mesmerising dance of cut, burn and poison. At the moment I'm staying with "nobody knows".

'now'.......Ive had a few months crawling back to bed, trying to recalibrate, feeling awful that I am the cause of others sadness #imdyingagain" and a bit of "you look so well- coping really well with it" so I have considered taking all my clothes off and screaming while running naked down the street if thats whats required... but instead I have decided to lean on a fellow sarcomas survivors mojo. Hope is an amazing woman who I was lucky enough to photograph for #sarcomaUK She is following an alternative regime for recurrent sarcoma that is giving good results. You can follow her blog on instagram @hopehealss . Hope is young, temporarily living in California and going for a complete immune boosting detox and fitness regime that includes CBD and a cocktail of other drugs. I'm not so young, have a few bad habits to change and am going to have to find some humour in the next instalment of my weirder than weird life- ( yep I have just ordered a coffee enema kit) tbc...