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...

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...

#sarcoma operation #2

 the second operation didn't mirror the first-  it was a different experience. I held it together until the anesthetist sat with us to explain the procedure. He didn't stop explaining and reassuring me until I sobbed-part of a devious plan I thought, to get me ready for having my body taken over again. I then tried to make jokes in the pre-theatre, admiring one anesthetists' orange crocks- there was no magical vial like last time and I think I made the student anesthetist nervous, I was twitchy and ultimately the epidural only half worked. Still, I had more morphine post op this time- what's not to like. I'd always regretted not taking a photograph of my 70 or so staples the last time......an unexpected bonus then, for my portfolio.

.. a neater scar this time.

warning graphic images *

Operation notes...

 

#Mandalas, as well as #photographs have been crucial to my spiritual recovery, no irony spared using marbles: buttons, beads and operational notes. I asked my consultant if I could have some photographs/ scans to use when I started the blog- I thought I might be entertaining, showing pretty colours in scan images, you know, and be a bit sensationalist. My tumour was so big it was probably going to be used for teaching purposes at the hospital ( I know fame in Chelsea again ) Dirk knew I was a photographer and emailed me some photographs that had been taken during the nine hour operation- advising me not to look at them too often. Well I didn't and I've blurred this image, and I'm not sure I even associate it with my body- but you know..Fucking hell.