In the Spring of 2016, I was diagnosed with myeloma, a type of blood cancer. I had not heard of this type of cancer. I was told it was incurable but treatable. I was 56. An article I read by someone who is living with blood cancer (and was much younger than myself at the time of their diagnosis) said that their diagnosis felt like their life had been hit by a wrecking ball. For me these words describe perfectly how I felt. The shock was enormous. I had been a carer all my life, from caring for a younger sibling with special needs whilst I was growing up, to working in a caring profession, to caring for my son who is autistic. In my own head, I had never envisaged a time when I would not be able to care for someone who relied on me.
The diagnosis was confusing; there had been no symptoms leading up to it. I had gone to the GP after a "faint" (as I thought it was). When this happened more than once I was referred to a neurologist who found evidence of lesions to the bones of my skull. I didn't understand what this meant. I knew he was referring me to haematology, but why? What were lesions and what did my blood have to do with my bones?
My GP kindly explained to me that our blood is made in our bone marrow and that the cancer in my blood was affecting my bones. I have always been grateful to that GP who explained my diagnosis in a way that a child could understand it. It was the first time I began to understand what was happening to my body and I strongly believe that consultants using a simpler kind of language to explain a type of cancer and its effects can help everyone, not only those who are neurodivergent, to make sense and to cope. It also makes it easier to explain to children and loved ones.
Later I would hear that the neurologist had described my skull as being a pepper pot skull. And by that time, I had grown so used to living with my diagnosis that this could make me laugh and think of it as a potential great name for a rock band. Or a potential great way to describe how I feel my brain works on a daily basis, there seem to be a lot of gaps in my understanding, and holes where things I previously learned have slipped away again, yet an overall strength to carry on. A pepper pot is, after all, a very useful thing.
Ten years on from the wrecking ball days I have had two stem cell transplants and lots of chemotherapy. I have lost all of the hair on my head and body twice over and each time it has grown back vigorously. My son who was 16 at the time of my diagnosis is now 27. I am beyond grateful that I have been able to support and care for him for the past ten years due to the incredible care I have received. I am hopeful that I will continue to be able to care for him and enjoy everyday adventures with him for a good few years yet. I now have been diagnosed with epilepsy too and have come to understand that I am neurodivergent myself.
This gradual process has come about from talking and thinking about how my experience of having cancer affected and continues to affect myself and those around me, and how cancer care can be difficult for neurodivergent people and their families.
On my first diagnosis my extreme anxiety was impacting everyone around me and every aspect of my life. A consultant told me this wasn't normal which was clear and helped me to understand why other people around me with the same diagnosis could cope without being overwhelmed. He said "scared, worried, frightened is normal, but to let it take over your whole life as you have is not ". I did get sessions with a psychologist who specialised in helping people with cancer and this helped too. It helped me to realise that I was over obsessing, and this was not neurotypical behaviour.
As a carer, every day I am constantly thinking of the needs of another person, and it is draining. My GP has responsibility for special needs and disabilities within our practice, and she is very helpful and understanding of myself and my son's needs. It is beyond helpful to be able to go to the same person when I need help, without having to explain my own family situation every time I saw a different GP as used to happen until a few years ago.
Additionally, one of my haematology nurses realised that smaller groups are better for me and moved my treatment days to a day which is usually less busy. It was her idea, and it really helps me.
Whilst always being profoundly grateful to have my life still and to the care and treatment I have received which has made this possible, I think it is still possible for some things to be approached a little differently to help most people with cancer, and to recognise sometimes that neurodivergence is common and those who are neurodivergent and experiencing cancer could be helped by some thoughts:
