My name is Abigail and I am 31, currently living in the North East of England with my husband and our two beautiful boys.
My journey started in 2019. I was experiencing pain and called up for advice, not knowing that this phone call would change and save my life. I got rushed into hospital that day. 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 tumor per year. It was 15cm then and they didn’t want to operate as it would be too dangerous. 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. Luckily, I did. I had two very large scars, from my chest to my pubic bone, and from hip to hip. The tumour had been removed, my gallbladder and my appendix. The veins and arteries which had grown around the tumour were also removed. I had 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. I remember waking up and being so grateful to be alive. This is the photo of me as I came out of that surgery.
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. I remember the first night I came home I took my son to bed and laid next to him. It killed me but I just wanted to be his mum again and do normal things. Six months later I had my second surgery, this was to reverse my colostomy bag and to take away some more of the tumour.
But now was the hard part. Trying to figure out what my life was going to be like now. I was left with extensive scarring inside after both my surgeries causing me constant pain, I struggle to walk and stand for long amounts of time. This has meant that I am unable to do a lot of the things I used to like taking my boys for a walk to the park. I have had to find different ways of doing things.
Throughout my journey what has kept me going has been my family. They sat by my bedside in the hospital every day, keeping my spirits up and looking after me. There were times when I thought about giving up but I didn’t. I just wanted to get back home to my family. I didn’t allow my boys to come and see me in the hospital as I didn’t want them to see me with all the wires and tubes in. When I had my first surgery they were only three and one. Consequently it was difficult for them but they adapted, and continue to. After my first surgery, with having a stoma bag, my eldest son would ask to help me change my bag. He would even help me when I had an accident. He would come and check to see if “mummy had a poo” and take me off to the bathroom to change me. A lovely stoma nurse at my hospital got my two boys, stoma bears. Teddies with stoma bags on. They loved them and still do, these were a great way for them to understand. They know that mummy can’t do the same things as other mummies, but we find our own ways of doing things.
Rare diseases are difficult and hard, most people have either never heard of them or don’t understand them. But I know for me they make you stronger. I am a fighter. I fought to stay alive and I’ll keep fighting every day. I said it wasn’t going to beat me and I stand by my word. This is something that is going to be with me for the rest of my life. I am proud of what I went through and wanted to share my story so that other people like me know that they are not alone.