Saturday, 27 February 2016

candles and prayers..

..and so I found myself in a little apartment in an area called Stalingrad in arrondisement 19- alone listening to a French radio station. I'm not overly religious but I am a catholic- Paris is full of cathedrals and cemeteries. I was close to Monte Matre and the Sacre Coer so that's what I did. I went to mass at Sacre Coer, had communion and lit candles and then did the same at Notre Dame- familiar and comforting. I went to confession at Notre Dame where a New York priest talked me through the concept of grace, keeping a sense of humour and then he held my hand through more tears. My twitter feed was full of stone angels, religious scripts and candles...and more candles- it helped ground me. I also met with a friends niece who gave me a grand tour of central Paris and the metro and a neighbor's brother who took me out to eat near the canal St Martin.

I bought a vintage French book at the market the stretches along the river by Notre-Dame-my French is crap but I saw the word Grace..and you know- had to.

and then I got the Metro back and sat on my balcony with a large red wine and a candle overlooking the corn sellers at the Metro station at Stalingrad.

quadruple gin and a big cry with my big sister...

The tumour returned in July 2014. I'm besotted by my consultant, like every other patient who's life he has saved but he has the power to scare the living daylights out of me and he did that day in July. He's very smiley but kind of curls and cringes when he has bad news- understandably and with compassion.  The sarcoma was back, the size of a grapefruit, attached to my aorta, my stomach, what was left of my pancreas and my diaphram.  I sobbed, my sister sobbed and then I told him and the nurse who was there to hold my hand, about the trip to Paris I had booked in two weeks.  I was terrified but ran towards it- the nurse agreed it was a good place to be alone and to get 'lost' in- so I went, with that old lover called adreneline and my Nikon the meantime we drank gin and tonic in the little pub by the Marsden and cried some more.


possibly Paris...

I've learnt over the past 5 years that I'm the sort of person who runs towards the fire in order to put it doesn't always work of course but on occasion it has given me a strength that I didn't think I was capable of. My new found independence had rocked me to the core. I've traveled a lot but I'd never been to Paris and I really wanted to go. I had moments of wanting people to come with me and offers, but really I needed to go solo- just me and my camera and an Airbnb in a cheap part of town. Sounds a bit ridiculous now Ive done it- in my twenties I'd arrived in Saudi Arabia alone, been stranded in an airport in North Carolina and winged it in Seattle trying to find work- almost ending up, but thankfully not, on a fishing boat in Alaska. Having been in a partnership for twenty years, experiencing the vulnerability of motherhood and then a cancer diagnosis, I needed to start again, to recapture some of the brazenness ( spell check says brassiness) of my early days.

and then the scan, four years after initial diagnosis shattered everything I'd been working towards..

little box of fear...

when you are on the cycle of scans you do get used to them, nothing brings back the initial overwhelming fear of going through a CT scan when you know they are just checking the size of the tumour. I still haven't got used to the dye that has to be administered through a canulla, the heat that rushes through your body, the metalic taste and then the dread of wanting to pee yourself. Though I've made friends with the little packman face on the machine that reminds you to hold your breath and then breath again, I'm still angry with the big plastic polo mint that has power over my body. But then, I've always been happiest on the other side of the camera.

Different friends and family have accompanied me to scans over the years and The Chelsea Red Cross charity shop almost part of the scan process, especially as my body changes from size 14 to size 8 and then back again. Breakfasts and lunches have been interesting too, and latterly, whoever is with me gets a lunch and a half as I have explored a sort of bulimia, coz my brain doesn't coincide with the size of my stomach. The scan isn't the big day though, that comes a week later on results day.

Tuesday, 23 February 2016


I've been having scans every three months, then six months, then extended to eight months since first diagnosis. Real life trundles on, in my case the continued attempts at rebuilding some kind of new normal, and about a month or so before a scheduled scan, normal is thrown up in the air again..I approach it with a bit of a learned, spoilt brat attitude... slowly simmering as I approach Victoria on the 185 and becoming more omnipotent as I hop onto the tube, my ipod blasting, to South Kensington.

I'm back- in a literary, photographic and sarcoma kind of way....

.......probably the last post as i don't want to get boring (i think you already are luv! says Taigh reading this over my shoulder and not missing an opportunity for an insult-thanks for that my loving teenager!) -my last proper post in December 2010, Taigh was twelve years old, we had a sense of humour then- he's 16 now, hastily trying to redo an academic year of A level work after losing a memory stick: as I work in the kitchen with a small glass of baileys, that may lead to more small glasses of baileys: it's nearly Christmas again.

They are not easy to do, these blogs, don't want to sound too crappy self obsessed, and over-jolly seems irreverent at this stage. In 2010 the wonderful surgeon Dirk Strauss and his team at The Royal Marsden had removed the phenomenal, alien like 6kilo de-diferentiated liposarcoma along with my spleen, kidney, part of my bowel and part of my pancreas...the chance that it may come back some 10-15%..we were ready to move on. I returned to work 8 months later, as an Ofsted Inspector, took an assessment which vaulted me into a complaints officer, quickly failed and was moved sideways, completing quality assurance tasks on inspectors reports. I was crippled, physically and emotionally from the effects of the operation, an un-diagnosed gluten intolerance and a compromised immune system...I was crippled trying to manage and control my rapidly disintegrating family. I had been having an affair, struggled with the dishonesty but thrived on the adrenaline- it kept me fighting and alive. My husbands already established alcohol issues became intolerable and the teenager, of course acted out. I fought with my husband about his drinking, he became mute. I fought with my son about his behaviour. He got worse. I went to New York for a few days, another adrenaline high. I arranged for my son to go to China on a school trip while I tried to manage his father's disintegration into total alcohol dependency. Rehab happened a day after the son got back, so he saw it all, as I carried his father into the car. I didn't think any of us would recover. I had therapy, grieved for my husband and my unavailable girlfriend and spent lots of time staring at the ceiling.

Five years later and we have recovered..albeit in a different format..but a calm one. This time last year I had another operation to remove the recurrent sarcoma, this time the size of a grapefruit, but attached to my stomach, diaphragm and pancreas.