Open Writing

Back in Leeds, we’re told that James’ cancer, like many of the cancers that effect teenagers, is very unusual. It’s a desmoplastic small round cell tumour, which is closely related to pPNET/Ewings but hasn’t been recognised in bone before. Thankfully, no cancer has been found anywhere else yet, always a great fear with this disease, as it then becomes much harder to treat and contain.

His treatment will be 14 cycles of chemotherapy, assessment of response after the 2nd and 4th cycles, with surgery just prior to the 5th, assuming a good response. He will be given the drugs intravenously from Tuesday lunchtime until Friday evening, followed by 2 weeks off to recover. The possible side effects come in three categories:

• Acute visible – hair loss, nausea/sickness, nutrition/weight loss, constipation
• Invisible – bone marrow suppression leading to anaemia, infections and bruising
• Long term – infertility, second tumour, heart function, kidney problems

James qualifies for participation in a clinical study for which he will receive 10 daily injections, between the chemotherapy cycles, of a drug called Granulocyte Colony Stimulating Factor (GCSF), which stimulates the production of white cells and can reduce the risk of infections by 50%. He has to learn to give these injections himself.

My aunt telephones. She’s a doctor and for a time worked for the United States government in Washington DC.

‘I’ve been praying for you all, every day,’ she tells me. ‘Last night I woke up, knowing I had to phone a past colleague of mine. When I reached him, he gave me the number of a doctor who works for the National Cancer Research Centre. I’ve spoken to her and she has suggested you phone her. She wants to help, if she can.’

My heart leaps to think that God is answering prayers about James.

I telephone this woman and she’s lovely. She tells me about a food supplement called co-enzyme Q10. There has been some positive research that appears to show it can help to protect the heart and other organs from the effects of chemotherapy. I check with Dr Edwards, who doesn’t think it can do any harm, and start James on them immediately.

*

Whilst we’d been at the hospital for all the earlier tests on James, I’d taken this same aunt’s advice to enter a regular mammogram-screening program. She was my mother’s only sister and had both breasts removed with cancer. My maternal grandmother, great aunt and grandfather had also suffered from various forms of the disease.

Having squashed my delicate bits into this ruthless machine, the technician took several ‘plates’ and went away. She came back after a while and took some more, then returned to inform me that I’d had the maximum dose of radiation for the day. She asked me to come back for some more pictures the following week.

Trying not to worry, I carried on until my next appointment. After examining yet more ‘plates’ I was told there was an abnormality and I would be referred to a specialist. It was as if the sound of the woman’s voice was going into someone else’s ears, the same person who was operating my arms and legs for me. I went on from there to the supermarket and, as I walked through the door, I burst into tears.

The specialist used ultrasound, which was a great deal less painful than the mammogram, and declared that what I had was a harmless, flat cist. I suggested it had probably been round before they flattened it in their machine. I had to return in six weeks to be certain that it was nothing to worry about and was then given the all clear. They told me my badminton muscles made it hard for them to get good pictures but I blame that machine, which was obviously invented by a man with limited understanding of female anatomy.