In the immediate aftermath of the bone marrow transplant I was what they term neutropenic, which meant that my white blood cell counts were very low and was therefore wide open to infection. Now during that time extra measures are put in place to further minimise the chance of infection. It's a million miles away from the bubble that used to be commonplace but it can still be quite a lonely time. One of the weirdest things they do when you're neutropenic is to treat any material coming into the room as a potential risk, which includes things like newspapers, so I was always a day behind in the news as my papers had to go and get microwaved before I was allowed them.
It makes perfect sense when you stop and think about it but it amused me greatly that my news had to go through such a process to reach me.
Being neutropenic was what was keeping me in hospital post transplant as my immune system wouldn't be strong enough to be out yet, which was a little frustrating even if I understood the logic.
I still couldn't eat at this time though due to the terrible ulceration of my mouth so I had a Nasogastric (NG) tube put in to feed me directly to ensure I didn't lose any more weight. When getting that put in I had to get an X-Ray done to make sure it was in the right place and it was an old friend from school that came with the portable X-Ray to do it, which was lovely if a little weird.
About this time I got quite obsessed about knowing what my blood counts were as they were what was keeping me in so I was always looking for updates that might be a hint that I could get home. After 5 weeks or so my counts were high enough that it was safe for me to go home. I was still going to the bone marrow clinic twice a week so I was being very well looked after, but the difference in getting to go home to your own bed to sleep is incredible. As much as anything else it's just nice to get through a whole night without a nurse coming in to check your obs or getting rudely awoken at just after 6 to get bloods taken.
I still had the NG tube in for that first week or so at home as I was still not eating sufficiently and what with still being bald I didn't look very good. I went to mass with my dad and got stared at pretty incessantly by a young boy who was fascinated by it all. It was a worthwhile venture out the house though as I met another old friend from schools mum and dad who told me just how upset their daughter had been to hear about my diagnosis. She was living in America so I told them I'd get in touch with her to let her know that I was doing ok.
I only managed a month before I ended up back in hospital again due to an infection I picked up. Unfortunately it probably was caused by the hole in my chest so we had to take the Hickman line out at that time. I say unfortunately because that meant going back to taking blood the conventional way. I had also grown rather attached to this odd little bit of plumbing, except on the occasions when I accidentally tugged on it admittedly, so it was weird to have it taken out.
So that was another ten days in the hospital getting antibiotics and having the joy of fairly regular Naso-pharyngeal aspirates, which basically involve shoving a tube into your nose and what feels like forcing it into your brain, and sucking whatever is up there out. It fair brings a tear to the eye and nothing will ever get you used to it.
The odd infection notwithstanding, the docs were extremely pleased with my progress and I have to say I felt pretty pleased about it all myself. I even thought to myself that it had all gone rather better than I could have hoped for and wondered whether it was going to be just that straightforward.
Post transplant there is a 'battle' for prevalence between blood cells made by the old bone marrow and the new stuff which is assessed by the doctors in what they call chimerism (from the Greek mythological creature the Chimera). On that front I was making excellent progress, which was testament to the fact that the chemo and radiotherapy regimes they had made for me had worked well in destroying my own bone marrow so it wasn't putting up any fight at all.
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