My Story So Far.......

As Promised Here is my story so far, will update as we go :)

When I was 16 my father was diagnosed with Bowel Cancer :( from this me and my siblings were tested for a hereditary condition called F.A.P ...Familial Adenomatous Polyposis. Out of 6 of us both me and my older sister was diagnosed and had our large intestines removed followed up by a Sigmoidoscopy every two years, then yearly, then added a Gastroscopy. Nearly 4 years ago my consultant sent me to a new team in London to be under specialist in F.A.P and from there first check up they found a 3.5cm growth (largy polyp with some changes in the centre)  in my Duodenum and was sent to yet another London hospital as they had another specialist and a better internal scan machine ... yep that's my full name for it, a internal scan machine lol... They did there own checks and biopsies and discussed me with a board of specialists and decided I needed a procedure called Whipple's. Basically this means taking a little off everything, Stomach, Gallbladder, Pancreas, Intestine and of course the Duodenum. The day came, I went to sleep and I woke, they hadn't done much except give me a new 9 inch scar. When they paralysed my body to do the surgery there they were, proud as can be and standing tall....My Desmoids! I guess they opened me up to be sure of what they were and I believe untangle me a bit but to be honest with all that happened I'm not sure exactly what they did. So from there I was told they couldn't do the surgery as the Desmoids were attached the the organs and this weakens them and sewing them back together is, how I like to put it...sewing jelly together. The stitches could hold but a high chance of the threads sliding through them like jelly and it all falling apart inside me. So there I was with Desmoids, yep no Idea what they were and still with this growth (large Polyp) and now 6 monthly biopsies on it, FUN!. After this and a few low points I just got on with everything, worked, moved and just got one with life. Had some pain start but ignored it and when I saw one of my consultants mentioned it with his reply "You shouldn't have" and left it at that, then the next time mentioned the pain and permanent nausea but nothing. Then went back to my old hospital in November for my yearly Sigmoidoscopy and mentioned this to the Doctor doing the procedure to be asked when my last MRI was, slightly confused I said never. This is the moment I started learning about Desmoids. Within minutes he had an appointment for my other consultant, which I may add I had been trying to get and asked repeatedly for over a matter of years to speak about the pain but never go one. So In a week I will be seeing her and seeing what's next and in the mean time found groups and sites to learn about them and different types and chatting with people who have been through a lot to. The path forward looks a bit scary but hopefully I will be one of those in the future saying I'm a surviviour!! But either way I know/hope they will learn from me and my body and help someone In the future, I'll be one of there textbooks :)


So yes that's me, Only bit that's not in there is my amazing supportive family and friends, especially my mum and husband! My mum......I could never thank her enough for being so amazing and strong through all of this. Hope one day I manage to show her how grateful I am for her being here. My Husband, my rock could never ask for more from him. I'm a very lucky woman :)


Links:
What are Desmoids
F.A.P
Sigmoidoscopy
Gastroscopy
Whipples
MRI
Internal Ultrasound