On the Monday following my discharge from Pinderfields we (my wife and I) arrived at the Cavell unit at Dewsbury hospital. There was a small queue outside, and one of the women queueing told us she was trying to get her platelets to a safe level for an operation. She was jolly and quite matter of fact. At 8.30 prompt we went in and checked in with the desk, then sat in the waiting room. It was not a long wait before someone called me and took three vials of blood. She asked me to wait and went away to do a test on the blood that gave her some of my measurements.
If my haemoglobin dropped to below 80g/L I was to be offered a red cell transfusion and if my platelets dropped below 20 billion per litre I was to be offered a platelet infusion. I’d had four of each in hospital, so I knew what to expect. I was to turn up on Monday and Friday for a test and if necessary to come back for red cells or platelets.
In due course it settled to a bag of platelets a week, and a bag of red blood cells every two or three weeks. I was dropped to one blood test a week, which I could have at the local diagnostic centre in Wakefield, then head for Dewsbury for the platelets and sometimes red cells.
All this felt very strange at first, but soon it became the normal pattern of our weeks: Monday morning blood test, Tuesday morning telephone appointment with a haematology nurse, Wednesday for platelets / red cells.
In the Cavell unit and the nearby Infusion unit there is a constant stream of people having something infused (transfusion is the word applied to infusions of red cells). The wards are arranged as a set of large reclining chairs a good distance apart. There is a machine that regulates the rate at which an infusion takes place. Some people are receiving chemotherapy of some form, some having a drug that is best given intravenously, and some like me receiving blood products. On one of the wards you sometimes see people having blood taken out – seemingly there are diseases where people produce too much blood.
The staff clearly get to know the regular visitors and there is plenty of friendly banter. I’ve had plenty exposure to the NHS, as a carer and for a decade working in a central IT role. If you watch the news you would think that the major concern is lack of funding and that lots of things go wrong. My recent experience has been that the real currency in the NHS is kindness, and that mostly things go right – not really newsworthy.
As I slip into this new normal, I am incredibly grateful for the NHS and the staff who are offering the care. Hopefully this phase of treatment will come to an end in the next year and I can move into remission. If not, I am slowly adjusting to a life where three days a week are focused on care, and as far as possible the rest of the week just getting on with life.
Whatever, it is a new world I am in. It is one with limitations, yes, but one where I am experiencing the kindness of others.