I have no medical training, and probably know the most about the human body now than I ever have (I was never good at biology!) Learning to trust in professionals to treat me in the best way possible hasn’t been easy for me. I’m much better now but when I first was diagnosed I was constantly anxious that they had it wrong.
FAP as a disease has many aspects to it, and aside from the biggest risk of bowel cancer, it also pre-cancerous polyps to grow in the stomach, duodenum and the ampulla.
I have yearly surveillance, where large polyps are removed, and because of this I do have moments where I forget about them. Which I guess is a good thing, who likes to remember that there are little things in them that want to grow big and become cancer!
I think the fact that I can now put some aspects of my disease in the back of my mind shows that I have come a long way in dealing with this all encompassing and multi-faceted disease that is FAP. Sometimes you can only cope with worrying about one thing, and at the moment for me its this desmoid tumour I have.
When I was first diagnosed, it all came at once and I feared the worst – will I get bowel cancer, will I get stomach cancer, will I get duodenal cancer, will I get a desmoid tumour? Even though I had colonoscopies and endoscopies to determine exactly the time-frames we had to work with to avoid my polyps becoming cancerous and I had strong confidence in my doctors, my mind still drifted to the worst possible thoughts and I often thought ‘what if they have it wrong’.
It took me a good 8 months after my diagnosis to admit to myself that I needed help to cope with the psychological aspects. Talking openly about it to someone and saying my worst fears out loud really helped me to be less afraid about what was happening, and what could happen in the future. In the months leading up to my surgery I learnt coping strategies and ways to process bad thoughts and what I was most afraid of.
Whilst cancer is a scary thing to think about, everything to do with this disease is scary and letting the fear take over without addressing was only making it worse.
By seeking help I think it’s made it easier for me to trust doctors and the medical system. Feeling confident in my treatment plan and my oncologist is particularly important right now, as I am being treated for a tumour that doesn’t have many options, and has limited research to guide decisions and I do feel that my oncologist has been great in seeking out options for me.