Thank you to all you kind people who sent me messages of support while I was in hospital. Sorry I didn't reply but it was such a pain trying to type on my tiny phone and I really didn't have the energy anyway. I came out yesterday, still feeling as weak as a kitten, unable to breathe deeply and with a neutrophil level of 1.2 (normal is >2 and neutropenia is <1). However, I am a bit better today, thank goodness. They gave me a subcutaneous injection of G-CSF on my day of departure which stimulates the bone marrow to grow more white blood cells, so hopefully that will set me up, and I'm still on oral antibiotics for another week.
I won't go into too much detail about my experience in hospital, as I guess we all pretty much observe the same shortcomings. It's not the care that is lacking, but the waiting for absolutely everything that is nearby intolerable. We spent 5 hours in AMU last Friday night but I was sent home because I was only borderline neutropenic (this on the advice of an anonymous doctor who never actually saw me). The oral antibiotics didn't work, so by Sunday night I was back on the phone to report that my temperature was still high. We then spent another 6 hours in AMU going through the whole process again. Most of that time was waiting for a registrar to give an opinion as to whether I should be admitted or not. When I was finally admitted, it was to a sort of holding pen (the short stay ward) which was freezing cold (my fever probably made me feel the cold more than normal) and the nurses were very grudging with the blankets. I was woken at 2.00 am for a chest x-ray and wheeled down a mile of freezing corridors which didn't help. By Monday afternoon they had finally secured a bed for me in the oncology ward - my husband went up there by mistake and actually saw the bed with my name above it - but it took 7 hours of waiting to get a porter - I kid you not. When I was finally taken up there, the bed had disappeared. It's now 10.00 pm and I am cold, tired, ill and longing to get into bed. I had to wait another 2 hours to get a bed: although there was an empty clean one in the next bay, protocol demanded that a bed should be delivered from elsewhere.
After that, apart from the junior doctor who tried to get rid of me before I was well enough to go, I received the same wonderful care as I had had in that ward three years ago. I was chuffed that the nurses still remembered me! And my old consultant, whose recommendations I had rejected in favour of a second opinion at the Christie, came to see me on two occasions and was kindness itself - apparently not at all put out that I had rejected him in favour of another consultant.
I had to stop my oral chemo and will not start again until 4th April after my next review at The Christie, so I've effectively lost one cycle, but hey, in the big scheme of things that's probably not that important.
My conclusion, concurred with by hubby who has to do the driving, is that if I get another infection we will hot-foot it to The Christie and not bother with the local hospital. The Christie would have admitted me right away without question on Friday evening, and we could have been saved all that waiting. It was just that at the time we'd only just got home from Manchester, and neither of us felt like driving all the way back again.
