Saturday, 16 November 2019

a little down time after a busy two weeks detoxing in the Isle of Wight and sculpting heads in Devon- driving hundreds of miles, through muddy lakes, in the dark and rain, in a car that should know better than to have an ex Audi driving, car thrashing owner at its' wheel. We all survived my adrenalin burst and it was as healing, spiritually, as it was manic. The other healing or stabilising or growing out of control bit of my life, I wont know until the next scan December 2nd and results on 9th. Two more weeks with that old fellow called scanxiety..

its not all green juicing and yoga though and at times it all feels a bit trite to espouse alternative medicines and warrior mantras- we do it to keep ourselves buoyant, but it doesn't always work. The reason there is no cure to this bastard cancer is because it is supposedly rare. Despite charities such as the wonderful sarcomaUK who have put tones of energy into research grants there is still little knowledge of why it happens and how to put a stop to it. People I've known in the sarcoma community have died, continue to die, and it pisses me right off. A friend with sarcoma who I photographed is going through a really tough time and I've been too angry to talk about my own blah, so instead of swearing all over social media I choose the cardiacs..

Sunday, 3 November 2019

hippy dippy days

my hippy dippy days..I've been seeking out those friends who think outside of the box recently (which is most of them), one of whom never fails to find their local shaman, quaker, bonfire meditation or felt making moment wherever they are in the world. I joined her a couple of weeks ago on a silent walk/retreat/dance/gong bath (lets get it all in why not) day at Lulworth Cove in Dorset. I've had many lovely times here in the past, not least trekking around that giant naked chalk sculpture Cerne Abbas before finding I was pregnant with my son.

And so I joined Gill with 6 other women in search of meditative practice and the meaning of life....but not as you know it, whatever your name is cliche. I got into the zone. The women were lovely, we had burning sage cleansing smudge introductions, albeit in the pouring rain, and shared our stories in the village hall. I like a bit of burning herb cleansing, being brought up a catholic, it's familiar.

With my cringing, people pleasing tendency, my imposter syndrome kicked in: that I'd out trauma-d them with my impending death dilemma. I needn't have worried too much as others were ready to release their burdens through sobs and stories, and dance their way out inconsolable early childhood sticking points. I kind of sat and watched and tried not to labour my point.

Kind of unusually, I thought, the leader of the group shared her own worries about her own dilemmas in life, giving me a little angst about who was going to hold all these emotions swirling around in this Dorset village hall.

Before my initial diagnosis, 9 years ago, I had been studying herbalism, but quickly found myself swallowed up in the medical and scientific process of surgery ( that has saved my life so far ) and my herbalist telling me that to choose natural healing through herbs ( should I choose chemo) would be like sweeping with a little broom in the corner of a room after a major bomb had gone off. I went rapidly from making elderberry concoctions and collecting yarrow for healing wounds to 70 stables holding my torso together, and major class A pain killing drugs including 5 day epidurals, morphine and tramadol. Luckily I sidestepped chemo but herbalism, nonetheless got relegated to the little painted Ikea drawer of dried herbs in my hallway. This time, given the news that no medical intervention would improve my quality of life, I decided to seek out my old herbalist teacher. Worryingly, she had been through her own 9 years of life traumas, relationship breakdowns, cancer, surgery, ( and chemo). She said she was in the eye of the storm and I ended up counselling her on a warm and balmy, wine infused Brixton evening, over the sushi. Back to the drawing board then.

So I joined the women in Dorset with a little trepidation. We set off on our silent walk during the Hunters' Moon to reach the top of Durdle Door in our rain coats; or in my case an absorbent puffy jacket ( warm though).  We had been instructed that there would be no talking unless there was an emergency. All good then, and I am a good walker, except I hadn't realised we would be scaling the sheer outer edge of the cliff and its muddy gorse rather that the touristy steps bit and I soon got puffed out. Not wishing to be a the attention seeking member of the party (again) I assured the other 'disciples' they could go on ahead, but of course the leader said she'd stay with me while the others continued and that we would catch up. Mortified that I'd been the one to break the silence, and keep her behind from the rest of the party, the two of us straggled behind, me huffing and puffing and trying and failing to be silent : 'I'm sorry, I'm fine on the flat, its just verticals'..... silence....oops. 'Don't be sorry, you've got a fucking tumour on your diaphragm!

Coming down was even more hazardous and as we reached the bottom I slipped on a muddy rock, landed straight on my butt, saving myself with my arm in an almighty crash as the rest of the party waved at us from near the hall, having taken the steps back down. The pain searing through my arm and shoulder put me into such a shock, I thought; "oh fuck and now I've broken my arm too"  Another failed attempt at monastic silence. She looked at me with a kind of " you had us at the incurable disease stage- you HAVEN'T broken your arm" kind of stare. She was right.

Friday, 1 November 2019

game changing

Ive been waking up down here on the island to have a sneaky roll up.  This reminds me of a time years ago when working for a surgeon as a nanny in North Carolina.  He made a deal to pay for a years membership to the YMCA gym in exchange for me not smoking. I exercised daily but very gradually found myself frequenting the sweltering humidity in the garden at night with the cicadas, trying to dissolve the smoke rings that refused to dissipate in the air. We parted ways after some months, after I left the iron on ( I was in my 20's) me still puffing... but with a fabulously sculpted body.

Ive been really strict with myself here and nurse Jackie is doing wonders in helping me channel my inner goddess but the pull for familiarity is huge, and comforting. This one has made me feel drunk, and I don't like being drunk ( apart from the occasional margarita salsa kind of drunk) and so it may be the start of finally ending this habit.

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...