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.

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 treatment...so 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.

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...

four years after the four years..

have been congratulating myself this six month scan visit, having no scanxiety. I put it down to a good friend telling me I was wasting four months a year with this type of worry when everything might be ok.... and it has been, but I've been busy, with visiting the west coast, old haunts in Tooting Bec Lido, heatwave BBQing with family, sweet parties, Santana in the sun, photographing the most amazingly phenomenal people in London and Europe. I've started to prep for a podcast I agreed to do in the morning, its made me revisit the past. Charities I know are in trouble, and sadly some patients I have photographed have died- its not always a good outcome- its not always inspirational. I will try and Pod. This in between trying to calm an anxious son as he packs for a weeks festival in Europe and leaving at 5am. I'm mindful that he knows I've had a scan and will get the results when he is away...fluttering birds in an electric nest of paranoid parenting and avoiding the subject. The summer scan is always a day before or after a birthday and needs to be changed, should have been changed ages ago.

It's 2am the day after the scan ( a scan that made me want to puke because I sneakily ate a few MnM's before the dye) and anxiety has been spiking sharply through the roof at a rate of knots all day. Following a day after a meeting with a recently bereaved friend, at being floored by destructive creative angst, (it's all shit) a sudden realisation that a regular workman had designs on me ( because of the amount of times I've answered to the door half dressed ) swiftly manoeuvred out of.... flying ants mastered, moths mastered, a new exorbitant roof almost researched...

-and then the sudden realisation that if I clear this scan I will have got further than I did four years ago, having been diagnosed for the 2nd time, four years after the original sarcoma, in the summer of 2014.  Fuck

2am storms, heatwaves and sparkles of a post diagnosis.....

www.boehringer-ingelheim.com/ssc-inside-story-alison

waiting patiently for others to finish their beer....

An interview with Ted Meyer

A little while I go I had a visit from a friend and fellow scar artist. #TedMeyer who lives, and is a powerful artist, in Los Angeles. He interviewed me at home in London. The interview rounds up lots of the scar photography work I have been involved in recently, and why. Ted has his own selection of battle wounds and advocates therapy through art. I took a portrait of him while he was staying. Maybe he will paint and photograph my scar one day.

Follow the link to see the full interview on his youtube channel TedMedArt on the link below

https://youtu.be/NkKYePE4zXk

revisiting the past..

..find myself having to revisit this copy of the first operation notes. I am preparing for a talk, to explain my experiences as a patient with ongoing #sarcoma issues, with #Eisai, a Japanese pharmaceutical company.  It's difficult looking back because even the memory of the strength/non-strength/trauma makes me exhausted. Of course I am amused by the interest I caused the surgeons, having two left ureters...who knew? and as always, one half of my brain thinks in images and the possibility of art to explain the inexplicable.

That was six years ago, and Im really lucky to still be here, having had operation number two that resulted in more removal of more organs...phenomenally lucky also to have had what I consider some of the best surgeons in the world. Of course there is still no cure for #sarcoma and worryingly sparse clues as to the cause. I watch and try to make sense of mind-blowingly complex research into new chemotherapy drugs as I balance my thoughts between the realistic and hopeful.

- this just popped up on my instagram feed from a fellow sarcoma gal who was the recent star of the #sarcomaandyou exhibition...Holly- who is a bit awesome really

and I just found this in the fridge...