Monday, 7 March 2016

Sarcoma UK and away...

I've never taken so many photographs- before I left for Joburg, on my various walks to build up my muscles, I took many photographs of dogs, standing next to their owners legs- Erwitt style. I've been taking photographs for as long as I can remember, now it was saving my life. One of the first shots was of a local Councillor who I got to know. During coffee I told her my story and was astonished to find out she was the CEO of Cancer52- an organisation for rare cancers. She knew all about Sarcomas (of course I showed her my double scar, stretched across my body, as you do) and knew Lyndsey Bennister CEO of Sarcoma Uk. She hooked us up.

I met with Lyndsey in London- that old Southbank again. I told her my story, about my photography..we had a plan.

11 hour flight

a long recovery, an ill health retirement, head busting pension complications, very easily knackered.... but still alive. The neurosis still appears a month before the four monthly scans, my hate of the machines continues- my life has changed phenomenally.

Last august, due for a scan, I was invited to travel to Johannesburg, South Africa to photograph more of the children who are part of the Children of Fire charity. Bronwen goaded me- she tweeted 'life is short..unpredictable- live it #just saying' - how could I not? and I had wanted to do a trip with my son, just me and him. My consultant encouraged me to go. I'm a bit scared of flying I said, of turbulence that the children had told me about when flying over Africa. He, chuckling,  said I should be a bit scared of the turbulence in the squatter camps instead. I wrote another blog about the trip. It changed both of our lives. We returned to London, I had my scan and it was clear. Bronwen wrote again- '@alisonromanczuk motto is-if u hv scary sarcoma, to get a clear scan, rush to Sth Africa at no notice, volunteer, walk 13 miles #AllClear. It worked.

take me out... bit of a blur, probs drug induced with morphine and tramadol as the epidural wasn't doing it's stuff. Mostly I stared at the patient opposite with her missing tongue and daily coach party full of visitors who talked for her, ooh and another who was on a trial, not that ill, and who went on shopping expeditions to the kings Rd whenever she could.  Gill and Miguel were at the Marsden the day I was being discharged so they drove us home, Gill, waiting for more results, her usual perky self, screaming at Mig to drive carefully over bumps as I crouched in the passenger seat.

 I spent what felt like forever on the sofa, when I wasn't being taken out on jaunts, like Queen Victoria with my blanket, to the seaside at Bournemouth, the local cemetery at the end of my road for a little shuffle around the graves and a critique of the plaques. I lost three stone, couldn't eat anything but ice lollies, and my sense of smell was so heightened I couldn't be within a metre of a cigarette or a garlic breath. A third of my stomach was gone. My neighbours' renovations started the day I came home. They hadn't realised the foundations to their property had been filled with concrete. So the first two months of my recovery I tried to block out a Kango drill that rocked my bedroom wall, with radio 4, which didn't help, neither did the pot plant they offered in sympathy, or the massive shout Jules gave to the builders in exasperation.

The news wasn't good from my first post op appointment. I asked for complete honesty and I got it. The tumour had come back in four years, I hadn't made the five year benchmark. There was a distinct possibility the tumour would return within two years. On seeing my reaction to this the nurse tried to reassure me, I had had radiotherapy and this may lengthen it, it might not come back for five years or later, but it was too late- it had already been said, and it was that news that stuck.  I had lots of visitors but went down quickly, found survival pointless, thought about suicide, looked for a button to press to end it all. 

Saturday, 5 March 2016

#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 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. 

through the tunnel...

Having had such a large tumour removed, along with a kidney, spleen, bit of pancreas, bit of bowel etc etc, I've had moments, quite a few actually, of worry and fear. My digestion is a problem. Things get stuck. The red wine that I refuse to give up provides a free, colonic irrigation from time to time. I inadvertently eat something that has wheat in it and of course I'm getting older. Each ache and pain is a possible recurrence, particularly about a month before a scan when the neurosis sets in. My consultant is amazing, and always on the end of a phone or email when I have a panic, that turns out to be a temporary hernia or a bit of excess fat or trapped wind. I'm sure he tries not to laugh when I explain I felt like a pin had been stuck into my middle, from the inside out and that it 'weirded me out'.

The friends and family around me wont let me get too down about it though, they know my passion for photography, force me to take theirs and everybody else's portraits and drag me through fields, up hills and through forests until I am strong again- and it works. The first time I took this as a given. The second time around I felt a little guilty- don't push it girl-and then there was the explanation that I had to give to my 16 year old . He doesn't want me to talk about him on here. The sense of vulnerability is overwhelming, and this time I had a friend who had been mis-diagnosed with a fibroid, that had turned out to be a terminal sarcoma.. Gill had helped me so much after the first operation, bringing me soup, paying the window cleaner, hiding bottles of vodka if she found them and she and her husband Miguel continued to support me through the second operation even though she was terribly ill herself. We shared a wicked sense of humour and bad language - she swearing at me because I had given her a sarcoma, picking me up on route to the local hospice so I could join her in free art and coffee.We laughed like drains about other peoples flinching when we recounted our bodily functions and ability to fart like volcanoes. Shortly before she died she came and sat in the garden, in the sunshine, and wanted me to take her portrait..fluffy hair and all- so I did.xx

Tuesday, 1 March 2016

Children of Fire..scars

On arriving at Pinner I was met by Bronwen, her children Dorah and Sizwe, Feleng and Zanele and friend of the charity Mitta. The shoot was a success, the children amazingly helpful and happy...and such posers I had trouble giving them all equal attention. We shared our scars and empathy and we became friends from thereon. The night before I was admitted back into the Marsden I received a telephone call from Mitta to wish me luck. She handed the phone to each child who also wished me luck and love. The children know what it is like to be admitted to hospital, some having had too many operations to count. It warmed my soul.


Franka and ChiFi

Two weeks before my op, on Halloween, I met up with a friend, my first twitter follower, a singer who had freaked me by following because of so many shared interests.. then I realised that was the point of twitter. She became a good friend and we met for coffee and chips on the beach at the Southbank. I brought my camera, of course, with the possibility of taking her portrait, but as usual she was having none of it.

I had my camera sticking out of my bag and was aware of a group of teenagers swinging on the wooden structures behind, that hold up the Southbank.  A woman who was with them approached me and asked if I would take their portrait. I agreed, stood up and turned around to be met with a group of five severely burnt African teenagers all looking at me expectantly. It was dusk and I made a hash of the photograph and had to be calmed by a single malt whisky at the local pub. I called Bronwen, the director, the next morning, explained my story..and my scars, and my imminent operation, and she invited me to visit the children in Pinner later the same day to do a proper photographic shoot of the children.

I wrote in my blog

'In late summer 2014, just before a second cancer operation to remove a sarcoma and yet more organs, I met a group of children on the beach of the River Thames, almost opposite St Pauls. Bronwen, mother to two of the children saw that I had a camera and asked me to take a photograph of them. And so a friendship began between people who knew medicine and scars. Between people who knew how the power of the human spirit can overcome massive obstacles. We shared a joy in living.'

thanks Amanda...

running towards the beams...

I've been through lots of self obsessed, self absorbed, bellybutton gazing over the last five years sprouting out of insecurity, stubbornness and abject fear.  Grief, I realise hits you in your core, right in the middle of your stomach, creating a vast chasm that one hopes will be healed with time and a little bit of meditation.  My five weeks of daily radiation began with three tiny tattoos, one in the middle of my chest and one of each side of my ribs; so that the beam hits the same spot at each visit. The first beam made me angry and bereft. So much energy spent realigning my core only to be laid on a slab while a Dr Who type laser shot a green light between my breasts-violated by another invasive procedure that suggested it might be good for me in the end. On the up side, the friend who came with me had the radiotherapy department in the basement of the Royal Marsden aghast with her laughter and hilarity in the face of adversity- and then more gin in the King's Rd.

I traveled to the Marsden alone after that, early each morning, choosing the earliest appointment to get it out of the way each day. The 185 to Victoria and the tube to South ken- my ipod blasting the same comforting tune.

clinical trials and research

The trial included a range of tests...again..ECT, bloods, radioactive pills, xrays. I was a specimen all over again-

The trial included an MRI scan that meant I was fully enclosed in a claustrophobic tube for about two hours. The noise is the worst, like being inside the drum of a washing machine on spin mode. The distorted Adele pumped through my headphones didn't help and I spent the whole time investigating the meaning of life and the design of a single grey line inside the tube. You can't sleep because there are constant instructions to hold your breath to the very limits of your capability, while they scan every slice of your body.


I had agreed , on my return to London, to join a research trial. That being an intensive course of radiotherapy before my next operation. There has been some research that suggests this may make it easier to remove all of the tumour with an added insurance- the risk of course that radiotherapy causes cancer, but in my case the odds where stacked against me so I decided to jump in. I was still working and continued to work until I felt the cumulative effects of what I understood was a slow burning away of the surrounding tissues around my tumour.