When I was born my parents were told I would not live past five years old. Birthmarks (naevi) covered the lower half of my body; there were too many to remove and it was believed they would probably turn cancerous.
I spent much of my childhood in the plastics unit at the Royal Children’s Hospital having multiple operations a year to remove naevi. Years later a melanoma was found on my left calf. I didn’t know if it would kill me or take my leg. I was awake during the radical excision and skin graft to remove the cancer, but as I was intubated and paralysed I could not tell them. Many years later I was diagnosed with PTSD as a result.
When I was eight months pregnant I found a lump in my left groin. The next day I learned it was a secondary melanoma, and they had no idea where the primary was. The doctor organised with my obstetrician to have our baby induced the following day. For that night and that night only, my husband and I did not want the baby. We went to the church we were married in and cried.
Our beautiful baby girl Georgia was induced and it took all of a second to fall fiercely and madly in love with her. I had to wait a week post-delivery before it was safe to remove the cancer. Knowing it was there and growing was awful. I was told I could not have more children and I had around three months to live if it came back. I went under sobbing but glad the doctor had told me the truth. It took years to be able to plan anything more than three months ahead.
I had 22 lymph nodes removed and started radiotherapy, which gave me terrible burns around my groin. The hospital organised a neonate cot with wheels that I could use instead of a frame to walk around with and look after my baby. I didn’t know how long I had and wanted to spend every minute I could caring for her. One thing the cancer gave me was the joy of being woken up at night and getting one more cuddle instead of concentrating on lack of sleep. Eighteen months later I developed lymphedema in my left leg.
Georgia was in prep when I found a lump on my back. A biopsy showed secondary melanoma, which I had surgically removed, and a PET scan showed hot spots in my abdomen and left knee. I spent much of the next three months in and out of hospital and finally found a surgeon to operate on my knee.
My daughter said I wasn’t to go into hospital again after the back operation. I just sat quietly, and she looked at me and said, “If you don’t go, you will die won’t you?” I said, “Yes.” Georgia said, ”Ok you can go.” After a cuddle, she said, “Even if you do die, I know you will still love me and be with me, and we will see each other again eventually one day.” It still breaks me up that a little girl had to go through that.
My lymphedema had been deteriorating to the degree that it affected my movement and walking. The area around my knee was the same circumference as my thigh. A lymph-venous anastomosis was performed and over a period of time, my leg became the same size as the other leg. I had previously suffered many episodes of septicaemia/cellulitis because of my damaged lymphatics; sometimes the infection took control of my body in as little as an hour. Due to this superhero’s surgery, I have had no further episodes. Things were looking good.
Three and a half years ago I started experiencing pain in my left side. I saw specialists for two years until a PET scan showed a tumour on my femoral nerve. This progressed to severe, incapacitating pain in the left of my groin. A six-hour operation proved unsuccessful. I was left partially paralysed and could not move my leg forwards and fell often. After a couple of months, the pain disappeared, but four weeks later it started growing again and with it came the pain.
Half of the specialists I’d seen said I definitely had neurofibromatosis and didn’t need a test. The other half said I didn’t have neurofibromatosis and shouldn’t waste a test. Finally, I was diagnosed with Phacomatosis Pimento Keratotica, which is pigmented skin caused in the very early stages after conception. This is quite rare. Then a full genome sequencing found further abnormalities. It turned out I do not have neurofibromatosis after all, but my tumours do, and I’m possibly the only patient in the world.
I never thought I would say that secondary melanoma is the least of my problems. The tumour on my femoral nerve has progressed to my lower spine, and the pathologists are concerned it may turn into a sarcoma. The treatment proposed is my only chance to halt the tumour growth, further pain and disability.
I would greatly appreciate your help to raise the $22,000 required.
Please note: Barbara wishes to thank all her generous donors and assure everyone that any monies raised above what she needs, she intends to re-direct back to other patients in need.