Daisy Fenwick, Essex
My story starts in March 2019. I went into hospital to get a blood transfusion for severe anemia. My levels were so low I'm not really sure how I was alive, which explains why going upstairs was like a marathon! I have another condition called Ulcerative Colitis (UC), which I've had since I was 18. The doctors seemed a bit puzzled and put it down to heavy periods as I was only 35 so cancer was never mentioned – although it did cross my mind.
My consultant booked me in for my regular colonoscopy but I'd only just had my blood transfusion so cancelled it. Then it was a wait for my next appointment.
My GP prescribed me iron tablets, I went back and forth from March till November and again cancer was never mentioned.
I finally got a date through for my routine colonoscopy, and I was very used to the dreaded bowel prep.
I expected it all to be normal, I even went with my dad. Afterwards I was called into a room still oblivious to what he was about to say. He told me he found a mass that he didn’t like the look of then the colorectal nurse stepped in and said 'we think it’s cancer'. I still was like no chance I'm fine! The two week wait for the biopsy was hell and I had to go to the hospital to find out.
The look on the doctor’s face and the tilt of his head will stay with me forever when he said the words everyone dreads – I'm sorry you have cancer. I was crushed. My world felt like it was crashing down. He gave me three options for surgery – 17th, 23rd December or 7th January plus I also had to get my head around getting a stoma.
He was talking about harvesting eggs – it was information overload! But I couldn’t think of anything apart from getting the tumour out of me. I didn’t even look at my husband, I opted for the 17th; I wanted it out as soon as possible.
Although I was devastated I needed to be strong and positive for my boys, my husband and my family. The hardest part was telling them. I didn’t care so much about me.
My operation was on the 17th December 2019, my lovely surgeon Dr Wynn did the surgery. It took seven hours, he removed most of my colon and gave me a stoma. The recovery was hard. I couldn’t even look at my stoma the first day. Plus in 18 years I'd never felt so good, my UC pain had gone. My husband and my family were all so supportive and I had daily visits. I was allowed to leave on 22nd December, I was so happy I could spend Christmas with family.
My next appointment in hospital was a long wait but they told me all my lymph nodes were clear, Dr Wynn manage to get it all out although I had to go through a 'belt and braces' chemotherapy. The first round is so scary, you don’t know what to expect. I was on FLOFLOX - which thinned my already thin hair, gave me really bad neuropathy. For over a week I had to wear gloves in the house touching cold door handles etc. Then covid came along and I was stopped after the second round.
It hit my husband hard when I was diagnosed. He was fantastic and really stepped up looking after us three. We have to boys who are three and five. All of my family pulled together helping with childcare, school runs, meals etc. My sisters coffee shop we.are.table in Earl's Colne are auctioning an amazing autumn cake, holding a colouring competition and have on going events raising money for cancer charities including Bowel Cancer UK.
From the chemo stopping, the results of my scan and bloods came back in the summer showing I'm cancer free. I'm now waiting on my first year scan. My cancer was rare so I'm being tested for Lynch syndrome depending on the results depend if I have a bag for life. I'm still alive, still smiling, still positive, still full of life.
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
- Improved clinical guidance and practice on bowel cancer in younger people
- Improved identification of people with genetic conditions and access to surveillance screening
- Improved information for younger people on bowel cancer symptoms.