Tuesday, 10 July 2018

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

Friday, 28 October 2016

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


Sunday, 23 October 2016

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...

Tuesday, 16 August 2016

Holly Hamer, 19, student, Warrington

“Some people choose to wear a wig, but I wanted to embrace being bald.”

“It’s crazy how life changes, cancer really makes you discover how strong you are. I appreciate the small, simple things in life now. I look at the world in a much more positive way. Although I have lost touch with friends along the way – some just can’t be there for you anymore – the close friends and family who are there for me, I cherish.

“I don’t like swimming or showing off my body anymore. I have a colostomy bag, and they are just associated with old people. I also struggled when I first lost my hair, as people used to stare at me. Sometimes I miss being able to just run my fingers through it, too. Now, though, I feel it’s empowering, and when I look at myself in the mirror it reminds me what I’ve been through and I’m still here fighting. Some people choose to wear a wig, but I wanted to embrace being bald and that helped me deal with it.

“I did have a boyfriend when I was first diagnosed, but now I have been single for a year. I would love to share my life with someone, but it would have to be someone who could cope with my sarcoma and all the things that come with that. The treatment I have undergone means I can never have children, but I would definitely consider adopting or using a surrogate, so a future partner would be able to have children.

“I have just learnt to drive, so now I have a little bit more freedom and am not just confined to my bedroom anymore. But my art has also given me a platform in which to express myself, it's a lot like therapy because I can put my heart and soul into each piece. I've always been artistic but only the past couple of years have I started creating paintings. 

“My advice to other sarcoma patients would be to surround yourself with people who make you feel loved. And to always appreciate the good things in your life, and try to find the positives in every situation. Allow yourself to express how you’re feeling because bottling everything up isn't healthy. 

“Raising awareness of sarcoma is vital. I'm very lucky to have been diagnosed in time because I have parents in the medical profession, but others don't know about it, which means others are often diagnosed too late. I love these portraits photos of me for the Sarcoma and You portrait series, they make me feel a bit better about myself after seeing them, they make me feel powerful. I would like to think others will appreciate my story I hope they will also see that these images represent strong-willed people.”

Hope Stringer, 24, gas broker, Essex

“The experience has definitely changed me as a person, and for the better. I am genuinely grateful for every day”

“After suffering with daily headaches for months, I went to see my doctor at end of August 2014 and told him my symptoms. He told me I was suffering with migraines, but I went back a couple of weeks later, after no improvement, only to be prescribed more pain killers. I asked to be referred for an MRI scan. The initial scan showed there was a tumour in my neck but no one knew what it was. Eventually the decision was made that, as it was too deep in my neck to do a biopsy, it needed to be removed. Ten days after surgery, I found out it was soft tissue cell sarcoma.

“I had to take nine months off of work to complete six rounds of chemo and six weeks of radiotherapy. My colleagues and bosses were amazing, making me very aware that the only thing that mattered was that I got better and the job was safe and waiting for me whenever I was ready. My friends were great, and my family were the most amazing people ever – and still are to this day. I don't know what I'd do without them.

“My sister Nancy and I have always been close, but in the last two years we have become closer than ever. She has been a constant pillar of support and my best friend. She knew the rules, I wouldn’t tolerate sadness, tears or depression around my diagnosis so she always managed to stay strong and hold back the tears – and trust me, she is a crier so this wasn’t an easy task for her. She also insisted she would shave her hair off with me to make me feel better, but I told her I never expected her to do that.

“The hair loss wasn’t a huge challenge for me at first, the day I started to see some fall out was the day I had it shaved off. I already had a wig ready for me to wear, so I felt prepared. The hardest part was when it started growing back. I felt my anxiety building up – knowing that soon I would have to ditch the wigs and just show my own short hair. My confidence was at its lowest at this point and I felt miserable about my appearance. This all changed when I found someone who was able to put hair extensions into my short hair – it made the world of difference. I finally felt like me again, it was such a huge relief.

“I have had two courses of radiotherapy, each meant that I was unable to eat as it was too painful to swallow, or chew. The first lot of radiotherapy meant I lost all my tastebuds so eating really was a massive chore. I lost a lot of weight and the funny thing was that was the silver lining for me! It’s amazing how as women, no matter how dire the circumstances, being skinny is always the upside. Obviously I’d have rather none of it happened, but it’s good to see the positives in every situation and for me I got to feel good by being the slimmest I have ever been.

“I am very positive about the future and I have just had scan results back, which show I have no evidence of disease! The experience has definitely changed me as a person, and for the better. I am genuinely grateful for every day – even on the crappy dull days, I always pick my favourite moment of the day because it's important to find something positive in every moment.”

Pippa Hatch, 21, Reading, Marketing Manager

“Having cancer never made me hate my body, but having a baby has truly made me realise how amazing it is – it has fought my sarcoma and grown a mini human!”

“It sounds strange to say it, but I was actually relieved when I was diagnosed at age 15. I had been feeling unwell for years –  I was constantly run-down, couldn’t eat certain foods and was always getting colds – and no one knew why.

“At the time, I was doing my GCSEs, and due to surgery, I did most of my coursework from my bed. When I returned to school, I had missed half a term and my friends didn’t understand what was wrong. They were told I had cancer, and although I had lost a lot of weight, I still looked relatively healthy and didn’t fit the stereotype of a cancer patient.

“My surgery started with a small operation to complete a biopsy on the large tumour in my stomach, just a few weeks later I underwent major stomach surgery to remove the tumour and two thirds of my stomach. This meant a lot of re-connecting internally from the stomach to the other organs and the operation took 13 hours. I recovered for 10 days in hospital and once I was discharged I had to learn how to eat all over again. This caused a lot of sickness while my stomach stretched back and healed and caused me to lose a lot of weight, taking me down three dress sizes in a month.

“My particular type of sarcoma is known as incurable  – I will be scanned forever and there is a potential for re-growth – but I am currently NED (No Evidence of Disease). Being scanned yearly gives me a sense of security, as I know the doctors are keeping an eye and will catch any new tumours early. This makes me feel more comfortable than I would be if they were to put me in 'remission' and never saw me again!

“I met my fiancĂ© Luke in 2013, he was an old family friend who I had lost touch with, so technically I have known him since I was four years old! I bumped into him in a pub and we just clicked. We moved in together after 11 months and I fell pregnant nine months later. Having cancer never made me hate my body, but having a baby has truly made me realise how amazing it is – it has fought my sarcoma and grown a mini human!

“Life as a mum is fantastic and very rewarding, we have been blessed with a happy, smiley and healthy baby. Two months after I had Oscar, I had my annual scan and it came back clear which was fantastic news for our family. Now we can enjoy our little boy forgetting about sarcoma until next year, which is a huge relief!

“I see only positivity in my future, sarcoma is out of my control and so I live everyday to the full and get on with things I want to do. Since being diagnosed I feel very strongly about pushing myself to reach all my goals in life and I hope there will be many exciting times ahead.

“Luke and I are getting married next year and enjoying time with Oscar and my family! I also aim to carry on my fundraising for Sarcoma UK in the years to come, hoping to help fund further research, educate people and support others going through similar experiences.”