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. Continue reading
Today is International Nurses Day, and as a patient I I couldn’t be more thankful for the kindness and expertise I’ve been shown in my care by nurses. Through my eye surgeries, my bowel surgeries, the day procedures I’ve had done, my few trips to emergency and currently at the cancer clinic, I’ve always felt like I’ve been in great care. Continue reading
I struggle a lot knowing that I will live with my rare diseases for the rest of my life, while there are good days and stable periods – there will continue to be complications and potentially new things that are linked to FAP that will pop up. I’ll never be as care free and my life will never be as easy again as it was before I found out about all of this. Continue reading
When something is less than perfect, we usually feel the need to cover it up or find a solution to make it better and more normal. I have big scars on my stomach from my surgeries and how I feel about them has changed over the last year and a half. Continue reading
When you have a rare disease, you don’t have the luxury of a standard treatment path and every new option that becomes available is like winning the medical lottery. Continue reading
I’ve had about 8 eye operations, 2 bowel surgeries and 2 chemo treatments, but the most traumatic experience so far has been losing my hair as a result of chemo to treat my desmoid tumour. Continue reading
The last couple of months have been hard for me. I think last year I was in the groove of things, I had recovered really well from my bowel surgeries and even when I got the news that my desmoid tumour had come back, I was feeling positive and treatment didn’t seem to daunting. It soon started growing really aggressively and for a few months it was pretty scary and I did wonder if it would ever stop growing. Continue reading
Those words have stuck with me for 5 years since I came in to see you, looking for an answer to my long list of ongoing symptoms, many terrifying and embarrassing to say out loud. Continue reading
I’ve been thinking about starting a blog for a while, but have always been shy to put myself out there online. Since finding out about all these fun rare diseases, I’ve had a lot of thoughts – good, bad, random – go through my head and I always find that writing it down really helps. Continue reading
Shrinking the Silence 