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.” 

wireless.......

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.