12 September 2012 – Change of Diagnosis (Cancer and Me 19)
It had been decided this time around that since I would need a lot of drugs intravenously I would benefit from a PICC line. That is, a ‘peripherally inserted central line’! What that means is that I would have a tube inserted into a vein in my arm, which would then be pushed up the vein through into other veins and eventually close to my heart. This would be done under a local anaesthetic, and would be like a long-term cannula. So it would stay there until the end of treatment, and would be like a valve through which intravenous drugs could be delivered or blood taken. I’d have to keep it clean and dry, but it would be there permanently for about 4 or 5 months.
I had an appointment on 3 September to go and have this fitted. I was a bit nervous about it, but knew that it would save a lot of ‘sharp scratches’!
However, when I turned up on the day, expecting to be seen to by the nurse specialist, I was surprised that I was asked to wait and see the consultant. He sat me down and told me there was a change of plan. They had not got the full biopsy results back, but the pathologist had given them an early indication. That showed that the lymphoma was looking like it was lower grade than last time and affecting small cells. So it was not the same kind of lymphoma that I had the first time around.
So the whole treatment plan went out the window in the space of a few minutes. All the preparation – preparing to leave work and be unemployed, preparing to be in hospital a lot, etc etc – up in the air. They had to wait and see what the results were before they could say what the treatment should be.
While I was there they also decided to ‘just do’ a bone marrow biopsy. I was led to a room and told to lay down on my side, and the registrar coached the junior doctor while she performed the procedure. As I think I’ve mentioned in an earlier chapter, it was not pain free!
I was told to come back on Wednesday 12th and they would see what the news was then. I decided to extend my work by another week to get a better hand over done.
When I turned up on 12th the consultant explained to me that I have ‘follicular non-Hodgkin’s lymphoma’. This is a low-grade (slow growing) version of the disease. He said that I probably had it last time as well. But it is possible for follicular lymphoma to ‘transform’ into a high-grade disease, and this is what had probably happened. In 2010 they had happened to biopsy the tissue with the high-grade disease, and missed the low-grade lymphoma. So they had assumed that it was simply Diffuse Large B Cell, and not looked for anything else (another instance of ‘common things happen commonly’, but I don’t think it really mattered).
To lay another surprise on me, I was told that I would have six lots of R-CVP chemotherapy… booked to start the next day!!!
Well, I was due to go into work the next day, but I just had to cancel that day and go in the day after that. A bit weird going to work the day after chemotherapy, but it just had to be done.