On 21 December, the Winter Solstice and the shortest day, I saw the haematologist; another Professor. I paid for my consultation. I paid again for some blood tests which were done within minutes. I flashed that debit card like there was no tomorrow, or at least not many tomorrows. I saved all the receipts for claiming back from my insurer.
Lymphomas are tumours caused by rogue white blood cells from the immune system, mutating and proliferating and generally causing problems in the lymph nodes anywhere in the body. They are commonly noticed by patients if they are in the neck, the armpit, or the groin, as little painless lumps. The patient may also get night sweats, loss of appetite, nausea, and a plethora of other vague symptoms. They are often hard to diagnose, and as in my case, they are what the doctors look for when they have eliminated everything else from their enquiries. Review of the CT scans showed I had Non-Hodgkin’ Lymphoma; one large ‘retroperitoneal’ tumour, about 14 cm in diameter, behind my gut but in front of my spine. It was this that had been causing my abdominal pain and gastrointestinal symptoms. I also had one small lump in my neck and a few tiny ones along the left edge of my sternum. I can’t say that we found this problem early. Even so, I felt lucky, and that is why I feel able to write about this now. I might regret it. The prognosis for lymphoma is generally good, and the majority of people make it through treatment and live to tell the tale. As soon as I mentioned it to my friends, I found that some of them had had lymphoma themselves, and some had friends who had had it. Generally, reports on remission were positive.
Only two days later, 23 December, I was back in the hospital radiography suite for an ultrasound-guided biopsy. The nurses were in their Christmas jumpers, and the doctor who did my biopsy was dressed in a silky gold dress and a jacket with sparkly buttons, as if she had stopped off at the hospital on her way to a party. Her job was to sample the lymphoma so that it could be sent for genetic testing to see which cell markers it displayed. This would help to decide the treatment regime. The small lump on my neck was close to the surface and a much easier target than that the retroperitoneal monster. She numbed my neck with local anaesthetic, and, using ultrasound to avoid the blood vessels and nerves, dug around with a large-bore needle to pick up some strings of cells. Honestly, I’ve had much worse times at the dental hygienist. Afterwards, the nurse brought me tea and a warm fruit scone. This is what you get as a private patient.
Christmas, then more investigation.
Christmas intervened. I managed ok, although I was weak and disinclined to do very much. My appetite had improved, and I can only think that was because of the weight I had lost – maybe after I’d lost some fat, there was a bit more space for my lymphoma and my bowel to co-exist. But after New Year the pain was steadily increasing again.
The haematologist phoned. Consultants seem willing to call you personally over here. He told me that despite the almost pleasant experience of the biopsy before Christmas, it hadn’t been successful. There weren’t enough cells to really characterise the lymphoma, so on 3 January I was back in a different hospital for a repeat. The doctor who did the biopsy this time was a consultant. He asked me if I had private cover. I said yes and flashed my insurance scheme card. I asked him what difference it made whether I was being treated as a private patient or a public one. He told me that as a private patient, he personally would conduct the biopsy. As a public patient, one of his senior trainees would do it under his supervision. I filled in the form to be treated as a private patient, but immediately felt guilty that I was depriving someone of a training opportunity.
The last pretreatment test was a PET scan (positron emission tomography). This just means lying in another scanner, but the fun part is the prep. I was sent to sit in a lead-lined room. A nurse approached me with a syringe shielded in a huge solid metal barrel like a small cannon. She stayed behind this apparatus and carefully connected a cannula to inject me with a radioactive glucose tracer. The idea here is that the cells in your body which are metabolising quickly will preferentially pick up the tracer, and these are the tumour cells. It’s nearly quantitative, and this baseline scan was to be used as a reference later to see how much tumour the treatment had removed. I didn’t pay for this, but while I was in hospital as an inpatient, I was bothered with a series of phone calls from my medical insurance company with questions about the procedure. We managed not to connect, just leaving a series of messages for each other. In the end I left one saying ‘Look, I won’t be able to answer any of your questions, so here are the contact details of my consultant’s secretary, can you just call her and sort it out?’ There was no sense in me acting as a go-between in this conversation. I never saw a bill for these procedures, which is just as well as it wasn’t going to be cheap.
To be continued.