Sophie U.

What symptoms came before the diagnosis?

My first memorable symptom was random vomiting. It started off about once a week, with no reason to it so I went to the GP. A blood test showed I was severely aneamic and the investigation went from there. For months I just had upper GI symptoms, but an endoscopy revealed nothing. After about 6 months I started to get stomach cramps and occasional diarrhoea and constipation, which lead to an investigation to Crohns disease. It took another 4 months until I got referred and a colonoscopy and MRI, which revealed the cancer, and not Crohns. By that point, I was vomiting a lot, couldn't eat much and getting lots of stomach pain. I never had bloody stools or unexplained weight loss.

How do you handle scan anxiety?

I normally have a 4 week wait from scan to results, so it's quite a long time to deal with. As I am fortunately in a good place now, it is getting easier to deal with. I try and treat the scans like a meditation practice, especially the MRI's as they are long. A CT scan is quick and easy so I don't have much time to think about it. Occasionally the little gremlins in my brain try and creep out when Im laying down, but I have to push them away to the back of my head, think of my happy place and calm my mind. Once the scan is over, I also push that to the back of my head and act like it hasn't happened, otherwise the wait is painfully long. I don't think about the results appointment either, and try and plan things in between to keep me occupied.

What coping tools did you lean on?

What did a really hard day look like?

When on chemo, I had a lot of hard days. My kids were 3 and 6, and my husband was self employed and worked long hours, so I was alone most of the time. I would struggle to wake up, and on bad days, my sister in law would come round and give them breakfast and take them to school/nursery so I could sleep. Some days I would sleep until noon, wake up, try and have something to drink, couldn't eat, then go back to sleep again. I couldn't walk much, so would drive to collect them from school. The neuropathy was so bad in my hands that I couldn't make them food without gloves on. I could barely make it up stairs to go to the toilet, and would often have accidents as I couldn't either tell when I needed to pee, or had such bad diarrhoea from the chemo that it was a desperate situation. I would be too exhausted and brain fog so bad, that I forgot what I was saying most of the time. In the end, I stopped talking as much as I just couldn't. I also couldn't stomach any food towards the end of chemo, I lived off liquid nutrition drinks. When I could stomach food though, it tasted of nothing and that was miserable.