Following her diagnosis of Ewing sarcoma, Adele has kindly shared her story of strength and sheer resilience and how her 6 year old daughter continues to have separation anxiety.
My symptoms began during the summer of 2013 with long lasting, stabbing back pain which radiated into my chest and ribs. I started to struggle to breathe and a lump started to grow on my back, I knew then that I needed to push my GP for further tests.
I kept visiting the doctor and was told it was a physio problem. I was given anti-inflammatory medication and was referred for an MRI scan. I was told I had to wait 8 weeks, so I decided to pay for a private MRI scan. It was then that things started to move quickly.
I had my MRI scan and the day after I was told there was a mass on my lower left side of ribs. It was Ewing sarcoma.
I was sent to the Nuffield Orthopaedic Hospital in Oxford in the first instance and then referred onto the Sarcoma Team in Oxford at the Churchill and John Radcliffe.
I had 14 cycles of chemotherapy (Vincristine, Doxorubicin, Ifosfamide and Etoposide), 29 days of intense proton beam therapy and major surgery in June 2016 to remove three ribs, my diaphragm and chest wall. My chest was then rebuilt followed by three further surgical procedures to clear infection.
My daughter Amelia, who was only 2-years-old (now 6-years-old), found the process of my illness extremely hard. My diagnosis really affected her, and I spent little to no time with her over the 12 months I had chemotherapy. I was so unwell and in hospital 7 days out of every 14.
We lived so far away from Oxford that it was difficult to see Amelia. She continues to have separation anxiety even now and often asks me if I am going to die. I have to reassure her that, for now, everything is ok.
I think it’s important your child's mental health is stable throughout and after treatment. We are always very open and honest with our daughter to a degree that she can understand and handle. We’ve also got her a book about feelings which she can refer to, understand and speak about it. She gets extra support from her school and we both keep a close eye on her. It was important for me that my close family looked after Amelia when I was in hospital so she still felt she had that family unit.
I was given the all clear summer 2016 but the whole experience has left me with more than physical reminders of the disease. I suffer greatly from anxiety and I feel really angry. My back is regularly very painful, and I have not been able to return to work due to the intense daily pain.
My Mum supported me at every hurdle. My daughter was so young when I was diagnosed so there was no way I could not be there for her. I had to beat it and my Mum held me up every time I felt I was going to fall.
Do not give up hope. We must fight until this horrible disease ends. Keep fighting and remaining strong is half the battle.