The story of Abigail
My name is Abigail
I am affected by…Mesenteric Fibromatosis Desmoid tumour
My story…My story started in 2019. I was experiencing a lot of pain and called up for advice, not knowing that this phone call would change and save my life. I got rushed into hospital immediately. After investigation I was told I had a large and aggressive tumour, a desmoid tumour. For every one million people worldwide, two to four are diagnosed with a desmoid tumour per year. It was 15cm then and they didn’t want to operate as it would be too dangerous, there was a high probability that I wouldn’t survive. But it grew another 1cm in the next few weeks and started to press up against and potentially crush a major artery. At which point they decided that I could die without surgery – so the risk was worth it. I was booked in for surgery to remove it.
I was scared and frightened, I didn’t know if I’d survive the surgery and see my family again. But I did. I have numerous scars. Mainly two very large scars, from my chest to my pubic bone, and from hip to hip. The tumour had been removed, as well as my gallbladder and my appendix. The veins and arteries which had grown around the tumour were removed. I was given a temporary colostomy bag, this was to let my bowel rest and allow it time to heal as they had to take different bits of my bowel away and put it back together.
Coming home from my first surgery I was practically bed ridden. I couldn’t get up and down the stairs and I needed help to wash and take care of myself. I needed round the clock care from my family. Six months later I had my second surgery, this was to reverse my colostomy bag and to take away some more of the tumour.
My life has changed drastically. I have been left with extensive scarring inside after both my surgeries causing me constant pain. I struggle to walk and stand for long. This has meant that I am unable to do a lot of the things I used to.
But I try to look to the future. And I’m just grateful to be alive.
Rare isn’t always easy, or pretty. But I’m proud of my journey and the women that it has made me become.