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 fiancé 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.”

Tony Grover, 61, Norfolk, retired police officer

If people see my scar when I wear shorts, then so be it, it’s part of who I am now.”

“For a while, I just thought I was getting fat as my trousers were getting too tight. In hindsight I should have realised that my trousers were only getting tight on the top of my right leg. Anyway, I ignored this until after a bath one day when I spotted sight of myself in the mirror. I could see what I thought was a lump in my groin. I asked my wife to come and take a look, at first she just laughed and told me she wasn’t in the mood! I told her I was being serious and I thought there might be something wrong. When she saw it, she thought it might be a hernia and said I should go see a doctor.

“I went to see my GP and was referred immediately to my local hospital in Norwich. Within three weeks of that referral I was given a diagnosis of sarcoma. It turned out that the lump was the size of a large aubergine. No wonder my trousers were getting tight! It was decided that it should be removed but not before a course of radiotherapy shrink it, to give the surgery the best chance of success.

“Removing the lump also caused some other residual damage to my leg. Because of where the lump was lying, part of my femoral nerve had to be sacrificed as well as several muscles and lymph glands in the area. I still have no feeling in the area of the surgery. I also have lymphedema for which I wear the stocking to help with fluid circulation. The whole situation could have been worse, of course, but I have my leg and I can walk – I just can’t run anymore. All my scans for the last five years have shown that there has been no recurrence of the sarcoma. I know I am one of the lucky ones.

“My wife actually found the whole process more difficult than I did. We have been married for 40 years – I was just 19 when I knew she was the one. She fussed over me constantly during my diagnosis, treatment and recovery. She still does, bless her. Hopefully I supported her as much as she supported me.

“I was once asked the question, “Why do you think that your scar is your friend?” The answer to that is because, in my case, it is a symbol of success. It’s there because it’s from where they got the ‘nasty’ out. Patients must not be worried about scars – they are part of your life experience and remind you of the value of life. If people see my scar when I am wearing shorts then so be it, it’s part of who I am now. The picture only shows the half of the scar that would normally be seen. It carries on for another four inches across my groin and to the lower part of my torso.

“The future is what you make it. I hope that all the great groundbreaking research will help to raise the survival rates of those suffering with cancer of any kind, but specifically with this rare sarcoma. When we searched online for ‘sarcoma’, I realised there is so much misinformation out there – which is why the work of Sarcoma UK is so important.”

Andy Roast, 27, online editor, London

“I used to be ashamed of my scar, but now I’m really proud of it, it’s like a badge of honour.”

“My first experience of cancer was back when I was just 12 years old. I had a pre-cancerous lump removed from my femur, then I had a metal plate put in place to support me. Since then I’ve always felt some sort of pain – especially when it’s cold. I just put that down to the metal, or maybe it was all in my head, who knows? 

“It was from around 18 months before my sarcoma diagnosis, when I was 24, that it started to hurt all the time, like a dull, constant ache. At the time, I was training for a half marathon, so I just put the pain down to that. I went to see my GP, told him I was in pain and had had a lump removed 12 years previously, and asked if they should check it out. After a few weeks, I was referred to an orthopedic surgeon for an MRI scan. A week after that, surgeons still weren’t sure what it was, but I knew it was cancer. 

“My diagnosis in 2014 met me with a sense of relief. I’m not sure how I was supposed to feel, you read stories about people being devastated and their lives turning upside-down, but honestly, I was just glad to know what was wrong with me. Treatment and recovery was difficult and I had some very low moments. But once I was over the worst of it, I threw myself back into life and wanted to see as many friends as I could. 

“I worked with a physio after my operation and could see improvements every week, walking that little bit further each time. I continued to set myself goals, for example moving to using only one crutch, then just a walking stick some of the time. Now I rarely use my stick, only when I am really tired or have been to the pub!

“I try to keep as active as possible, I ride my bike to my job at Great Ormond Street Hospital. I love my job, and it was such a positive influence in my life during my recovery, as I gradually started working from home before I went back properly! Working meant I wasn’t just defined as a cancer patient, and it distracted me a lot. I never wanted to let my diagnosis define me. A few months ago, I even went hiking in Snowdonia. It was such a rush; I would never have believed this was possible when I was lying in a hospital bed. 

“I see only positivity in my future, and my next big goal is to complete a London to Paris cycle ride! I love seeing this image of my scar, as I never really get to see it. It used to be something I was ashamed of, but now I’m really proud of it, it’s like a badge of honour.”

Lesley Abraham 51, Office Manager and Founder Trustee

“Having cancer and my scar never stopped me being who I am and wearing my lippy”

“I was first diagnosed 10 years ago. I have come so far that I no longer have scans. This was a scary moment last September when I was told I was getting discharged – it was like my safety blanket had been pulled from under me. Scans brought with them their own worries, lots of scaniexty, but check-ups were the place to air those worries. Cancer will always walk alongside me, I just have to not let it walk in front of me, I will always be who I am but with a different perception.“I used to write everything down in my notebook, my husband took notes at consultations, I voiced my thoughts, those things that go through your head then you forget, just when you need to remember, my book helped me. My husband and children came on my cancer journey with me, but we were always careful to use the right words to my two young children (8 and 9 at the time), my lump was a tumour until the day they asked me “mum is your tumour cancer?” My children also thought I was their dad when they saw my shaved head for the first time!

“My 3 Js (Jilly, Julie and Joy) looked after me through chemo, looking after the children while I was in hospital, baking Victoria sponge as that was one of the things I could eat and keep down, ironing, cleaning and anything else that was needed. My girlfriends celebrate with me every year on the anniversary of the end of treatment with a weekend away. This year was the 10th anniversary and the girls presented me with a heart and wings charm engraved ‘soul sisters’.

“Having cancer and my scar never stopped me being who I am and wearing my lippy, as well as matching headscarves to outfits kept me feeling like me. All my girlfriends know me for my ‘lippy’ and I love anything associated with lips or lipsticks! My hand has numbness and loss of sensation and I have a scar where the tumour was removed and skin damaged by radiotherapy, as well as weakness in the wrist and stiffness in the arm but hey, I have my arm so they are small things in comparison to the alternative”

Wendy Watkins, 70, Claygate, Surrey, retired

“I feel so lonely at times, completely desolate at others, and sometimes find myself nearly feeling happy. It is three years since Derek died, although it seems like three minutes.”

“Derek and I met in 1963, I was 17 and he was 18. We met when his London-based Big Band came to Bristol to open the Top Rank Ballroom – Derek was in the trumpet section. We flirted, he from the band stand and I from the ballroom, he took my address and I thought that was that. But on that Sunday, Derek drove from Reading where he lived to see me. I was out but my father directed Derek to my aunt’s house, where I was babysitting, and he just turned up! We saw each other once a week. One month he had an accident driving from Bristol to Reading and wrote off his car. That was when I realised he meant a lot to me. We got engaged the following February and married a year after that.

“Roll forward the years, and Derek woke me one night when he was in bed trembling and shaking uncontrollably. I rushed to get blankets and gradually the rigors calmed down, but about half an hour later they returned and I called 999. The paramedic came and decided to get an ambulance to take Derek to hospital. They did various tests and then we were sent home with instructions to come back if the shakes returned.

“The next morning, Derek screamed out that the shakes had come back. We took him to hospital where where they finally did an ultrasound and found a mass on his intestine and bowel – it was the size of a grapefruit. Derek was operated on that night. The surgeon confirmed that it was cancer. Derek swore that this was not going to beat him, and his enthusiasm and bravery carried the whole family along with him – none of us really thought he would lose his life.

“He was playing trumpet on the James Bond movie Skyfall at the time, and he was very ill, but determined to finish it – and he did. At the end of recording Derek was lauded by the director Sam Mendes, and the whole orchestra rose to cheer and applaud him, both as a musician but also for his incredible bravery. Derek rang me in tears afterwards. We were also invited to the Royal Premiere of Skyfall and introduced to Prince Charles and the Duchess of Cornwall. Derek nearly burst with pride.

“The very next day he was rushed into hospital – the tumour was growing again and pressurising his organs. We were told there was nothing more that could be done for him and that he only had three months to live. For the second time only since his diagnosis, Derek cried and we held each other, neither of us believing that this was the end. His death was recorded in all the national newspapers, on Sky, BBC and ITV News, as well as reverberating throughout the music business.

“I went into shutdown. I went to counselling, took anti-depressants – this went on for over a year before I felt strong enough to go forward. I pruned my friends, I no longer wanted people in my life who were not going to help me. I feel so lonely at times, completely desolate at others, and sometimes find myself nearly feeling happy. It is three years since Derek died, although it seems like three minutes. I often play over in my mind things that happened over the two years from his diagnosis – his death, what we said to each other, what he asked of me, how he must have felt and how brave he was. I do not feel I have a future in the real sense of the word, just time passing by. Yes, I have my children and grandchildren but even in a crowded room I can feel out of place and uncomfortable on my own – I hate this life, I hate cancer.

“The times when I just shut the door are now over, and I am getting out and about more, but I miss our life together, the interesting things we used to do, and the life we used to live. However I am also aware that I am very lucky. I do not think I could get a little part-time job in a shop, that is not me, nor are coffee mornings, but I am going to try to find an outlet to suit me.”

"I would like to thank the  hundreds of musicians and friends who organised fundraising concerts, bike rides, and other fundraisers in memory of Derek. You have made a huge difference to me, my family and Sarcoma UK."

Leona Rankin, 29, founder of The Boom Foundation, Northern Ireland

 “I never, ever, thought of not pursuing my relationship with Philip because of sarcoma.”

“I first met Phillip at a charity barbeque. My friend holds the event every year, and he told me there would be a guy there that night he thought I would like, encouraging me to come along. When I arrived, Philip got up to give me his seat and we started chatting. I didn’t realise that this is precisely who my friend had told me about. We just clicked. I went home that evening and told my mum I had met someone special.  

“The severity of Phillip’s sarcoma never really registered with me – perhaps because I was young and naïve. In my mind, I had just met someone that I wanted to spend more time with and, while he had been sick, that was in the past.  I never imagined that it would then become such a massive part of our relationship and my life going forward.

“It was weeks, even months, into our relationship before Philip told me exactly what he had gone through, his diagnosis, treatment and surgery. Looking back, this doesn’t surprise me, given that he treated his sarcoma like having a cold. After he died, many of his friends commented that because Philip downplayed his cancer so much, the shock when he died was worse.  

“I never, ever, thought of not pursuing the relationship because of sarcoma. It was something that I had hoped was behind Philip. I just admired and loved him so much more because of what he had gone through. He had true empathy for other people, something that I had never truly seen in anyone before. He didn’t take life seriously – we lived for the moment and that was all as a result of what he had been through.

“Shortly after we started to date I had to go to Cardiff to complete a course. It lasted ten months and I missed home and Philip so much. Philip would email me a good morning message every single day. Sometimes I sit and reread the emails that we sent to each other during that time and remember how much we missed each other. By far, the greatest time was when Philip asked me to marry him. We felt like the only couple in the world who were getting married! We were over the moon. He proposed with his Grandma’s ring, it’s beautiful. I still wear it, but on my right hand now.

“We started to look at venues as soon as we got engaged and set a date for 2 May 2013.  Philip loved the planning and we invited over 200 people. Philip had so many friends and it was important to him that they were all there. When we knew Philip was dying, I knew he wasn’t going to make it to the wedding date and, even if he did, he wouldn’t be well enough to go through with it. I knew how important it was to both of us to get married, so our priest said that he could marry us in the house, but this wasn’t what Phillip had wanted – he wanted do it standing in a church. Devastatingly, he died in March, when he was supposed to be on his stag do in Rome.

“Many of my fond memories are from when he was very sick and in hospital. We spent so much time together. It’s an awful time but those days are precious. When you have time to sit and watch them sleep and study all their features in such detail, knowing that one day you’re going to want to remember every line on their face. Even though he was so ill, he still made everyone laugh.”

Michael Maguire, 31, Learner Information Team for a college, Hornchurch

 “Awareness is so important, as we had no idea what sarcoma was when my mum got diagnosed.”

“Awareness is so important, as we had no idea what sarcoma was when my mum got diagnosed. She was young – only 57 years old – never drank or smoked, it just seems so unfair and cruel.

“Shortly after mum died so suddenly, I got in touch with Sarcoma UK. I felt I needed to get involved in something in some way to make a little more sense of what happened and why. I also wanted to prevent what happened to Mum from happening to anyone else. In the time since then, I’ve benefitted from Sarcoma UK's work and seen how they can help people affected by cancer. I've learned about the importance of research and I know that the donations Sarcoma UK receive will help develop and push research in the direction it needs to go for patients. Because it is research that provides hope. Not just for sarcoma patients and their families and loved ones, but also for those affected by other cancers too.

“My mum and dad are both from Northern Ireland, so I go back there once a year – it helps me feel close to her. This photo of her was taken at my brother’s wedding, it was such a happy day and she was so proud. This photo was also the one used at her funeral.

“My mum was the nicest person, she was quiet and never disagreed with anyone. She made an impression on people without even trying. That feeling of a mother’s love is irreplaceable. She was the one who made our house a home when I was growing up. I used to walk through the door and feel an instant sense of belonging, stability and comfort.”

Leroy Duffus, 50, community worker, London

''Now I have come to terms with my illness, I have managed to alter the way I think about life. For example, I now plan six months ahead, rather than six years.”

“It was back in 2013 that I first noticed a swelling on my face – but you know what men can be like, I just ignored it, thinking it would go away. It was only when people started to notice it that I thought I should go and see my GP. My doctor actually referred me to a dentist who then told me to go straight to the hospital. Reflecting back, my dentist must have known what it was.

“I am a positive person by nature, so I don’t want to dwell on the negatives. I do a lot of community work in youth clubs and schools mainly with young people, from around 14 to 19 years old, who are not in education or employment and can’t seem to find their place in the system. I try to find something that will work for them – it might be an apprenticeship or a scheme, everybody needs a bit of luck and encouragement, and I hope that in any small way I can provide that for them. Once I even took an under-achieving school from Peckham out to Jamaica to stay at a university out there. I think it is so important to provide strong black role models, not just rappers and musicians, but scientists and business people, too.

“Now I have come to terms with my illness, I have managed to alter the way I think about life. For example, I now plan six months ahead, rather than six years. This whole issue has affected my lifestyle, my wife and two children – family and friends – but after so long I have learned how to live with it. I now to speak to others, help out, give support, and fundraise for Sarcoma UK. I would love to film my story to inspire others, and let people know that they can be positive, no matter what happens. I am also planning to start my own family-run business, maybe a café or shop. I like the idea of creating a hub of the family, where people can come together and meet – and where I can also help other young people in my situation. I want to create something that will continue to generate income and that my children can become a part of too. You never know, maybe we’ll even call it Leroy’s Place…”

Jordan Anderton, 22, fundraising manager, Plymouth

“People should be proud of the scars they wear – no one should ever feel ashamed”

“In 2007, when I was just 14, I had a lump in my knee. I play rugby and am quite sporty, so I just knew something was wrong. Now, I still play rugby, as you can see from the scar on my head in this portrait! However, I have had some muscle cut away from my leg, when surgeons removed the tumour, so I am not quite as strong!

“I try to see the positive in everything. Sarcoma has shaped my life, and my views have changed because of it. I view my life in a very different way now. I am very fortunate compared to others, and now I never fret about the small stuff, what is the point in worrying?

“Sarcoma UK have helped myself and my family hugely on my cancer journey. The wealth of knowledge and information provided us with reassurance about exactly what I was facing.

“I only got into fundraising because of my diagnosis, so it’s strange to think how different my path could have been. I think I probably would have gone into something sport related, so cancer really has shaped my life and career.

“My scar has actually really faded now, but I think sharing these images of people bearing their scars is so important. People should be proud of the scars they wear – no one should ever feel ashamed. Every scar tells a story.”

Sarcoma Uk #1 Ian Randall Photographer 45

“So the cliché goes, that when you’ve encountered something like this, you make every day count. But actually, sometimes, I feel mentally and physically drained – and that’s the truth. I started chemo on 28 December 2010, each cycle lasted for five to six days and in between cycles I was back and forth with various problems with blood infections, dehydration and needing transfusions of blood and platelets. I also had regular scans on my chest, heart and kidneys.

“Eventually it was decided that I needed surgery to remove three ribs and part of my lung – which sounds terrifying. Then I had three more chemo cycles, I was meant to have seven, but my body just couldn't cope. Treatment was exactly 10 months. Initially, recovery was incredibly hard as my heart and kidneys were badly damaged during post-surgery chemo. I was barely able to look after myself for a few months and that is when things got really hard.

“The countless meds made me feel like a zombie, like I was in a real-life nightmare. I had 'chemo brain' and I couldn't concentrate on TV or a book. I had to play games on my iPad such as solitaire to get my brain ticking over again. The most horrible depression set in. I couldn't see anything good from what had happened, I wished I had given up. The depression is never far away but I'm somehow dealing with it. I'm trying to take things a day at a time, sometimes an hour at a time, sometimes a song on the radio at a time.

“I was a Fire Officer, I was fit and active, full of beans and energy. They held my job open for me for 18 months but it became clear I wasn't ever going to be well enough to go back. I was devastated. Now, I can't run, go to the gym or cycle, and I can't play football with my two young sons. I used to jump out of bed and love life, now it’s just another day to get through. The old me is in there somewhere, though.

“Luckily, photography has saved my sanity. I went on a few day courses and after about a year of these, my tutor said to me "why are you on this course? you should be doing your own stuff and making money." I'm not good at taking compliments but this one changed my outlook on photography and so many things in my life.  It’s amazing that one little comment changes someone’s life so much. 

“It’s so important these portraits and stories are shared – even though I am not proud of how I look now, awareness is essential. I had never heard of sarcoma, and during my treatment I didn't know Sarcoma UK existed or that other people got sarcoma. That’s why I love to help Sarcoma UK, not only giving something back by giving up my time, that I have plenty of so it is easy, but I've made some lovely friends and as I get further past treatment finishing, I can try and help others who are going through it too. By getting them to see there is a light at the end of the tunnel, it will be hard, painful, the worst thing anyone can go through, but they will get through it. If i'd had someone that was surviving telling me that I would do it, it definitely would have made things easier.” 

Tuesday, 10 May 2016


chuffed to bits....... in abject terror state, but chuffed to bits nonetheless- I've been asked to join Lindsey Bennister CEO at Sarcoma Uk and Robin Jones from the Royal Marsden Chelsea in a radio interview tomorrow. They want to know my story, about my photography and it will be broadcast far and wide- we hope. To add to my angst, I've had texts about national newspaper interest and recently received a text to say I will be filmed during the interview.  How to put six years of story into a minute and a half and look good at the same time...... It's an incredible story alright, but I still haven't got used to playing the lead role- I could put it in an image?- oh god wish me luck!

The first sarcoma shoot

so......I've been photographing sarcoma survivors, sometimes relatives of those who didn't make it and its been so good, for me, for patients, the bereaved, and to support awareness of this rare cancer, often mis-diagnosed or not diagnosed at all until it really is too late. We aim to unveil the photographs for sarcoma awareness week in the first week of July 16. Here is a shoot I did with Leroy, a fellow compatriot that Sarcoma Uk used for an edition of Connect the Sarcoma magasine- he's in the exhibition too.

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.

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.