The first symptom, and the only one I ever really had, was on a Eurostar train going on a skiing holiday, and it was one huge, hot face, known as a flush I guessed, and it lasted for the whole of the skiing holiday.
But it didn’t really bother me too much, because I was in the cold; it was a strange experience, and then it went, and unfortunately it had gone by the time I got home, and I didn’t take any photos which was perhaps not a good thing.
I didn’t think much of it really, because I was eating well and having a good skiing holiday, but I did go to the doctor as soon as I got home, and that’s when they tried to diagnose it. He tried the usual tests they do at the doctors, the usual urine test, the usual blood test, and that came to absolutely nothing, and I kept going back there once or twice just to see him and nothing, no symptoms at all.
So he decided it was a rash, and that rashes and allergies – he thought perhaps it was an allergy – are a minefield to try and understand, so he just said to me – which I thought was fair enough at the time – ‘if you get another flush or anything else that’s bothering you, like an allergy, come back’. Of course I didn’t go back, did I, because I didn’t have any more indication.
About a year afterwards I did go back. It wasn’t the same doctor, and I went back because I was shattered, tired, still teaching, had grandchildren, did lots with them, and my head was itching this time and I was tired, and I had started having diarrhoea.
Not in a big way, but one that was making me lose a lot of weight and was depleting me a little bit, so one of the classroom assistants persuaded me to go, and that’s when I went, at the end of summer term.
I actually retired at the same time; not because of this, but because it was time for me to retire, and the doctor that I went to couldn’t explain the itching; she latched on to the bad tummy, she was a young doctor, and she said ‘You must go for this colonoscopy.’
I was shocked that anyone was suggesting such a word to me. She said ‘You’re of an age where maybe everybody should go, it’s a good idea’ and that’s exactly what I did as soon as the end of term came, I went for a colonoscopy at one of the local hospitals.
The result of that is that they discovered that I had a tumour in my big bowel and that it had metastasised to my liver, all without me knowing. That was the start of it. So the diagnosis was neuroendocrine tumours in the bowel, which had metastasised into the right section of the liver.
It was decided, as I was quite fit and active, and didn’t generally seem to suffer from that many symptoms, that they would operate as soon as they could, and that’s what happened. I had a double operation on my bowel and my liver, which was very successful, so I was told, and left just a little tumour I think in one of the parts of the liver, and I came away very happy after that operation.
Information about the emotional, physical and social challenges of living with NETs
Patient support groups for NETs can often provide social and emotional support
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs