Posted on Friday 7 June 2019
Libby’s story – Shells of courage
Libby first realised something was wrong when she felt a sharp back pain after a music festival. She rested in bed for the next few days before visiting her GP. After being misdiagnosed multiple times she was eventually led to a diagnosis of a rare form of soft tissue sarcoma.
“After the music festival, I visited five different GPs and was misdiagnosed each time. I returned to university in September and started to get really short of breath and light-headed whenever I walked more than a few metres. During my first seminar, I felt I was about to collapse so my friend took me to the student health centre. The doctor told me that I needed to go straight to hospital as I had suspected pneumonia. I spent the next week in hospital.
Eventually I had a CT scan that day which showed a ‘mass’ the size of a large grapefruit located next to my spine, pushing against my left lung, kidney, diaphragm and heart. As soon as they realised it was something more serious, I was referred to a neurosurgeon and a thoracic surgeon to discuss treatment. A biopsy revealed a peripheral nerve sheath tumour. At this stage, my medical team were unaware that the tumour was malignant and so there was no mention of cancer and to be honest, cancer never even crossed my mind.
In early December 2014, I underwent a ten-hour long spinal operation and eight hours of thoracic surgery to remove the tumour. My recovery from that surgery was very difficult. I was in intensive care for just over a week and then transferred up to one of the main adult recovery wards. I was really fortunate to be discharged from hospital the day before Christmas Eve. Although it was great to be home for Christmas, it was really hard for my family because they had to help me with everything and we had the added anxiety of waiting for the histology results.
In January I received the results that the tumour was malignant. I was quickly referred to an oncologist who sat me down and went through the next steps of my treatment. Being told I had cancer was shocking. I knew that there wasn’t much I could do about it so I’d just have to put my trust in my oncology team. I was told that because the tumour was so close to my spine, conventional radiotherapy would be too risky as it would damage too much spinal tissue. That’s when my oncologist mentioned proton beam therapy. He said that my medical notes would need to be assessed by doctors in the treatment centre in America to see whether they would be able to treat me and also by the NHS to see whether I’d be granted funding. The following week, whilst I anxiously waited to hear back about my treatment plan, I was introduced to my amazing CLIC Sargent Social Worker, Kate.”
Up until meeting Kate, I hadn’t cried about the fact I had cancer. I didn’t want my parents to see me cry because I knew it would worry them even more. When I first spoke to Kate, I burst into tears. I think this was because she was someone totally new that I could just open up to."
“She was so calm and kind and it was comforting for both me and my parents to see a familiar face when we visited the hospital. Kate provided me with financial support by way of a CLIC Sargent grant and also helped me fill in other grant applications. Having Kate’s support at this time was invaluable. She even introduced my parents to other parents who had young people with cancer for support.
In February 2015, I received a call from my oncologist to tell me that the doctors in America who were in charge of my proton beam therapy treatment would accept my case, but I would first need to have one of the metal rods (that was inserted during my first spinal surgery) removed before they could treat me. Two weeks later I had the rod removed and a few days after that, I received a call to tell me that the NHS had agreed to fund my treatment abroad. Within three days of my case being accepted and just one week after my second spinal surgery, I was on a plane to Florida with my Mum.”
“Mum and I were in America for three months. I had 39 rounds of proton beam therapy in total. As my treatments were in the evenings, Mum and I had the daytime to ourselves. We would go to the nearby beach and walk for hours, just chatting and looking for pretty sea-shells to collect. Getting out into the fresh air was really therapeutic and it was lovely to spend so much quality time with her. Over the three month, we collected so many shells. Mum gave me a special jar where I kept thirty nine of the prettiest shells we had collected, each one representing a separate proton beam therapy treatment.”
To find out more about how we help young people cope with the impact of cancer, please visit our what we do section. If you need support yourself please contact us using our online enquiry form or call 0300 330 0803.
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