Zero Day plus Sixteen: Home!

 

Well, this all went in a bit of a rush. I didn't want to tempt fate by spreading it too widely, but they said two days ago that if my neutrophils looked high enough and stable I could go home. They were high enough, so yesterday my sisters Anna and Mary came and brought me home. And here I am!

So here is my stay in numbers. I went up to Addenbrokes on December 16th and spent seventeen nights there, nine of them in the hostel accommodation and the last eight in a solo room on the ward when I got a chest infection and very high temperature that had to be managed.

They put in the big old shit-kicking Melphalan on Dec 17th and my own stem cells on Dec 18th. I like to think of the Melphalan as the Rooster Cogburn of chemo drugs. As he is described in the Cohen brothers film: The meanest one is Rooster Cogburn, a pitiless man, double tough, fear don't enter into his thinking. And the Melphalan, like Cogburn, is pitiless in its pursuit of the cancer cells. Unfortunately, as with Cogburn, other cells end up in a prairie grave too.

As soon as the Melphalan went in I had two big side effects; huge fatigue and loss of appetite. 95% of the things that I liked to eat on the Tuesday made me feel sick at the prospect by Wednesday. And when I got out of bed I had to sit down for ten minutes to gather my strength. But the first week was otherwise manageable. Boring, but pretty straightforward. I went through the entire oeuvre of 'Slow Horses', which was very good, and played plenty of tunes on my flute, and could read books. 

Then, as Christmas Day was coming up I got a cough and when checking my temperature on Christmas Eve in the middle of the night, I found it had spiked over 38 degrees, at which point you have to ring the ward and tell them. They said I needed to come in, so while the animals were coming towards the stable, I was trudging to ward U3 and then it all went a bit tits-up. They said I'd need to stay as I'd got a chest infection (RSV) at just the point that my immune system had been flattened. The normal neutrophil level is anywhere between 1.5 and 7.7. If you are under 1.0 you are at risk. If you are under 0.5 you are severely at risk. My level was 0.0.

The next five days I did not get out of bed, as earlier posts will describe. My temperature went well over 39 degrees each day and on one day over 40. This was despite four infusions of paracetomol each day and all the antibiotics and antivirals they gave me. I would say I felt bad, but the truth is I hardly felt anything. Time was all compressed and I could do no more than watch TV and feel grotty. 

Then on Monday the fever broke and I felt immediately like a normal person. A weak normal person, but able to get out of bed, and with a return of a normal appetite. Each day I got notably better. What was happening of course, was that the stem cells were all coming into their new roles and putting me back into normality. Here are my neutrophil levels over the last five days: 0.0;  0.12;  0.65;  1.35;  1.94

NHS, I love you!

So now I am back, feeling good, but clearly changed. My hair is falling out, but that's no biggie. I am still weak, and have to do things like walk up the stairs with a pause on each step. I have also lost weight. I was 13 stone 5 when I went in. I am now 12 stone 8. So I have lost 11 pounds in less than three weeks, or five kilos in the new money. 

But I am so happy to be home and will find out at the next consultant meeting how successful they think the transplant has been. So far it is looking pretty good.