I am newly diagnosed, living with, and trying to understand this type of rare cancer. It is easy to feel isolated when you have an uncommon illness – many of the questions I have seem silly because nothing is sinking in and I didn’t understand the difference between incurable and terminal. My life has changed but I’m the same person I was before the diagnosis – it is so confusing.
I read other stories and what I’ve learned is we all have a similar ‘umbrella’ type of cancer, but the location and grade of each of these neuroendocrine cancers or tumours can be different – and we can all have different responses both to treatments and to symptoms.
My first response was that surgery was the only way forward. I didn’t hear any other reason or advice because my first-hand experience of other more common conditions put all the effort into “shrinking and removing “ – I simply couldn’t comprehend that neuroendocrine cancer is often incurable but not terminal.
It’s early days for me. I’m only 5 days in from my first appointment with the consultant and the specialist nurse. I am very grateful for the straight-talking from them both. It’s empowering in a way because I understand the reasoning behind the treatments and the path they have explored and explained to me. What they can’t help with is the emotion and uncertainty of living with an incurable cancer. The Neuroendocrine Cancer UK website has helped me a lot too.
And of course, my family help tremendously, too. They understand that my emotions and uncertainty will waver from time to time until I’ve found a way to be comfortable with the diagnosis. After all, it’s part of me now.
I’ve always been the person who is happier offering help or a sympathetic ear to others I find it difficult to be the one who is accepting help. I can’t shake the feeling of wanting to fight this and march head-on into treatments. The fear for me is that I have to sit back, watch, and wait even though I know it’s the best option, very confusing for any mind.