D+10 - "A Day In The Life* " or life on the ward

I thought I would describe a day on the ward or rather a day in my room since I'm not allowed to leave this room whilst I'm neutropenic.

The day usually starts between about five and six thirty with observations (BP, pulse, O2 level and temperature) and the day's blood samples being taken. My first IVI starts at about six and lasts two hours, then there is a flush (saline IVI) to clear the drip line of the remaining drug. In this case an immunosuppressive agent to help me accept the donor cells. A second IVI for a further two hours for a different immunosuppressant follows straight away. Often there are little gaps between stopping one IVI whilst I wait for my nurse to be free so by the time the second treatment is through it usually time to run the first one again. What with a further flush this finishes about mid afternoon. Time for a shower

The room I'm in has an en-suite shower room as do all the rooms on the transplant ward. I'm very lucky to have a view from my bed through a window looking out onto lots of trees and rooftops which catch the every changing afternoon light, wonderful.

I have a PICC line in my right upper arm which has twin lumens so two preparations can be given at once. The line can stay in for months so this means I don't have to have so many needle punctures. It is an absolute godsend, much much better than a drip cannula.

In addition to all this IVI treatment I have to take oral medication, powders, liquids, pills, capsules, sub-cutaneous injections etc. Most days I have about fifteen or so different medications.

Whilst all this treatment is going on a nurse or health care assistant (HCA) has changed my bed, someone has brought in fresh water, breakfast has been served, lunch order taken, the room has been cleaned, someone changes the bins and perhaps a physio has been in. Twice a week there is a consultant ward round, on the other days a registrar comes round. All in all it is nonstop especially in the mornings.

On some days I need additional IVI treatment, antibiotics, vitamins, fluid replacement etc. In the evening I have further immunosuppressant IVIs which finish somewhere between one and four in the morning. Some days I need blood products, blood itself and or platelets. The latest finish for the day's treatment so far has been seven forty-five am!

The biggest problem is sleeping. The constant interruptions make it difficult to say the least. Luckily I'm a good sleeper and can snatch short naps. Nevertheless there have been times when I've been desperate for sleep. I'm not complaining because I realise full well that all this is solely for my benefit.

One final word on cost.  I met a fellow patient a few weeks ago who was diagnosed whilst in the USA. It was deemed too risky to be flown home and the first cycle of chemotherapy for AML was given over there. The total bill was $700,000 for just the one cycle. The next three cycles will be on the NHS. What's more I had an additional very expensive drug which the Americans don't give despite the fact that the trials in France and the UK have been very promising. Thank goodness for the NHS.

* Beatles - "Sgt Pepper's Lonely Hearts Club Band" track 13