by Arlene
Today would have been my mum’s birthday. Had she been alive, she would be 72 today.
Unfortunately, my mum died 18 years ago when she was 54 years old. She lived with a condition called Neurofibromatosis(NF), more specifically, Neurofibromatosis type 1(NF1).
Neurofibromatosis Type 1
NF1 is a genetic disorder that causes tumours to form on nerve tissue. These tumours can develop anywhere in your nervous system, including your brain, spinal cord and nerves.
The symptoms of NF1 are often mild, causing no real problems. The tumours of NF1 are usually non-cancerous, but cause a range of symptoms, like problems with the eyes, nervous system and bones.
The symptom that can cause the most problems relate to tumours on or under the skin. The tumours cover the nerve endings, and can vary in size and amount. They can cause nerve problems, weakness, numbness and pain, as well as showing up as large swellings that can get caught on clothes.
There is a lot of information on NF available now, but when mum was diagnosed, we had never heard of it.
My mum obviously had NF1 since birth, but it wasn’t until she was around 45 that she received a diagnosis and began treatment. There is no cure for NF1, but there are a range of things that can be done to manage the condition.
My mum
My mum had a lot of admirable qualities. She was kind and loving, she could talk for Scotland in the Olympics, she had a brave sense of personal fashion, she could make a cake out of just about anything, she loved to dance and her hair was wild.
She was terrible at looking after her own health. Whether out of denial, or because she may have been on the autistic spectrum, she didn’t ever take her own condition with the seriousness it needed. Perhaps she just though she had lived without knowing she had this disorder for so long, what did it matter that she now had something ‘officially’ wrong with her?
It might not have mattered, except she was unlucky enough to develop a type of cancer that can develop from NF1 called a Malignant Peripheral Nerve Sheath Tumour (MPNST). In fact, she developed multiple MPNST’s. By the time she told us about them, she was going into hospital to have a scan.
Moving house
On 1st November, I was moving house. My (now ex) husband and I were moving to a new village with our 1-year-old baby girl. My dad came along to help, but could only be there for the morning of the move, as in the afternoon, he was going to the doctor with my mum to get her scan results.
That evening my dad phoned to let me know that my mum was taken to Edinburgh Royal Infirmary. She had multiple cancer tumours in every area of her body. Mum had refused chemotherapy.
Out of time
My dad was stunned. We all were. I am ashamed to say that I didn’t handle the news very well. I would like to say that I spent extra time with her, and made the time we had count, but that isn’t the reality of how I behaved. I continued with life as normal. I was busy with a new home, work and a baby. I thought we had lots of time.
She was in hospital for a week, and I visited her twice while she was there. She was sent home, with a plan put in place for end of life care, a new bed, lots of pain killers and a nurse to visit.
On 13th December, my dad called me to say that he couldn’t wake mum. As I drove to their house, he called the doctor. It was a 30-minute drive, but by the time I got there my mum had died.
Happy birthday
I won’t talk right now about how I felt at that time, or how I felt in the wake of her death, but I will say that I still miss her. It has been a long time, but I would still like to have her back. I would have liked my children to have known her. Emily has no real memory of her, and Amy was born years after her death.
So today, I will pull down my photograph album, tell my daughters about their grandmother and say Happy Birthday to my mum.
Don’t be afraid
For more information about NF1 you can visit:
https://www.nhs.uk/conditions/neurofibromatosis-type-1/
Don’t be afraid! It’s a manageable condition.
Mainly Witterings 