Real Life: 'How photography became my Sarcoma cancer lifeline'

Real Life: 'How photography became my Sarcoma cancer lifeline'

Six years ago, Alison Romanczuk was diagnosed with sarcoma, a rare cancer that affects the body's soft tissues. And now she's turned round her life – and helped many other sarcoma patients – through her love of taking photographs.

She first spotted a problem when she was suffering with bloating – something she'd put down to a possible wheat intolerance. But this was actually a symptom of sarcoma, as is a feeling of fullness and constipation, a cough or breathlessness, although symptoms vary and can be tricky to pin down.

But after asking her doctor to take a look, while she was at an appoitnment for her son, she was sent on to have an ultrasound and biopsy that later revealed she had de-differentiated retroperineal lipo-sarcoma and had to have the tumour removed. ""

"It was a devastating time for me and my family, my son Taigh was only 12 at the time," says Alison.

"When they removed the tumour it weighed more than 6kg (the limit of their scales) I had a kidney, my spleen, tail of pancreas and part of bowel removed. It was attached to my aorta.

"I faced up to the op with a bit of humour, wrote a blog, but was terrified- I felt like John Hurt in Alien! It took 8 months to get back to work as an Ofsted Inspector; with lesser duties. Slowly my family unravelled, I separated from my husband and moved house with my son and went through years of transition to my new life."

Sadly, four years later the cancer returned, attached to Alison's diaphragm and pancreas and so she underwent another operation alongside five weeks of chemotherapy.

"My recovery this time felt a lot worse, not only physically but emotionally too."

But, with the help of her friends, Alison was determined to fight this all the way. "My husband Jules and friends took me for weekly walks and I graduated from walking a short way down the road to making hills and fields- they wouldn’t let me rest!"

Then came the idea to return to a much-loved old hobby.

"""I’ve always been a photographer, so I buried myself in that, taking loads of pictures to try and make meaning of what was happening, the radiotherapy shooting beams into my core, the 70 or so staples that held my middle together for the 2nd time.

"My photography has been a lifeline and thank God I've had something active to keep me enthused and driven, or I may have just stayed in bed and turned in on myself.

"I am a portrait photographer so it is about other people. It’s allowed me to focus out, not inwards the whole time."

Soon her photography led her to some amazing opportunities, including a trip to Johannesburg to take photos for the charity, Children of Fire, who support children who have been burned in South African squatter camps, due to poverty and the need to use unsafe heating equipment.

She also teamed up with Jane Lyons, a local counsellor and CEO for a charity Cancer 52 - and she introduced Alison to Lyndsey Bennister, the CEO at Sarcoma UK and so began a sarcoma awareness projec, taking photos of sarcoma patients. ""

"The project has been so valuable for both me and the other patients involved.

"I think we all see it as a 'taking back' our bodies, showing the world our scars and celebrating that we have survived following the awful experiences we have all been through.

"It's powerful because I'm not just a photographer, I am a patient, and so there is total trust and understanding. We all want to raise awareness towards an earlier diagnosis.

"The patients (and in some cases their families) have really benefitted from sharing their stories, eager to get out their scars to raise awareness- to make some meaning of their experiences.

"I feel lucky to be alive six years later, but I’m only as good as my next scan- us patients call it scanxiety- my next scan is in July, the exhibition is in July and my son turns 18 in July- at least I got him there! And so my emotions are mixed up again. But I will have used my passion to help those in the future to catch this awful disease earlier."

  •  Sarcoma Awareness Week takes place from July 4-10. Visit Sarcoma UK, to find out more. Sarcoma UK are the only charity in the UK focusing on all types of sarcoma cancer, and this year they were chosen as Charity of the Year for 10 Downing Street in memory of Chris Martin, Principal Private Secretary to the Prime Minister, who died of sarcoma in November 2015
  • For more real life stories, pick up the latest copy of Yours magazine