By the end of November 2012 we had a date to go and see the specialist. My daughter by now had a number of lumps around the neck area and the back of her head and of course the painful lump on the back of her head was getting bigger.
All four of us attended the first few appointments until our eldest couldn't cope with it and decided not to come. We initially saw a lady surgeon who was very blunt with my daughter's prognosis, not that this was a bad thing. We attended the Marsden for a PET scan which confirmed that our daughters cancer was stage 4. The melanoma had already metastasised to the neck but no further. The following three months were traumatic to say the least.
The first operation, in mid December, was a 'radical double neck dissection' the surgeon was now a fantastic gentleman/professor whose double specialities were melanoma and plastic surgery. The professor basically cut our daughter's throat from earlobe to earlobe with two cuts either side of the neck down to the collar bone. They removed 105 lymph nodes and the neck muscle on the left side. At the same time they removed the lump at the back of the head which proved to be a rather large cyst. Our daughter was in surgery for 7 horrific hours. At last she was out of surgery and in intensive care, we finally got to see her and what a shock it was. Not that we didn't expect her to be swollen and all that, the shock was her hair that she refused to have cut for the op. Her waist length blond hair was completely full of dried blood. Myself and the lovely intensive care nurse, did our very best to rinse the blood out whilst she slept. This was a failed attempt at not needing to cut some off.
We did our best to enjoy christmas and really didn't do a bad job of it. Unfortunately our daughter got an infection in the wound during the week between christmas and new year so we ended up back in the hospital on intravenous antibiotics which did the trick and we were home again for a new year that we weren't quite feeling. As the healing days went by and I stayed off work to be with our daughter, it became apparent that the surgeon had missed one of the lumps as we could still feel it. So, late January it was back into day surgery to remove another lump.
The next surgical hurdle was in February 2013 when the surgeon broke the news to our daughter that she needed one more operation to excise the area around the original site on the top of her head and this also meant a skin graft from her thigh to make a cover for the area on her scalp.
There was now much talk of the next step's and what they would be, CT scans and ultra sounds, x-rays and fine needle aspirations of glands all made for lots of trips to hospitals. There was no talk of chemotherapy as this is not used in cases like our daughters, but radiotherapy was on the cards. Our daughter was having none of it, she'd been on the wonderful google and found out all the side effects of radiotherapy and was adamant that she wasn't having it.
Meanwhile, the pathology of the removed lymph nodes came back and showed that only 5 of the 105 removed were malignant. This result changed the minds of the oncologists and MDT group. They decided that due to our daughters age and the clear results of the CT scans and the pathology report, that the 'risk or reward' balance of radiotherapy leaned in favour of no radiotherapy. This was an immense relief to me as I was stuck in the middle of my husband insisting on radiotherapy and my daughter adamant on not having it.
By this time our daughter was fast approaching 15 and hadn't been in school for 5 months, it was difficult to get her to do any of the work that the teachers were sending us. She had no interest in any of it. The doctors had told her that she would be well enough to return to school by the end of March, just in time for Mock exams.
