I hope you have had a good weekend! I definitely have- I’ve seen some great people and been given EVEN MORE lovely presents! At this rate I will have nothing to ask for at Christmas because people have been so generous!
Speaking of gifts, earlier this week Ed presented me with these (which he no longer needs as he is not on a neutropenic diet) …
He got them as his mum works for a school and they order them for the canteen there anyway, I think us “neutros” are not supposed to use ketchup bottles because it lets bacteria get in and possibly bacteria grow on it when the top gets all manky!
Like Ed, I have become one of those patients whose levels are consistently low- so much so that it interrupts treatment such as LPs. After dropping to 11 I had a transfusion which took the level up to 30, however I then dipped back down to 13. These are not at all good levels for the LP (they want my platelets at 80) so I am having two bags of platelets today and one is on reserve in case they drop again in the next 24 hours.
My next LP is scheduled for 11.30am tomorrow. I will let you know whether everything goes to plan or not!
Earlier I had a lovely chat with Yvonne, the specialist nurse for the TYA unit and C6 the adult unit (and accidentally ended up spilling my life to the poor woman!) First she got me very scared- asking about Daniel having a blood test to see if he is a match for me if I ever need a bone marrow transplant (BTW DAD/DAN IF YOU SEE THIS DON’T FREAK OUT, ITS NOT LIKELY TO HAPPEN AND I WOULDN’T FORCE YOU IF IT DID COME ABOUT!) and then she got me very excited by saying that her and another nurse are going to ring chichester paediatrics to see what parts of my next block “Escalating Capizzi” can be done at St Richards, so that I could be LIVING AT HOME! Somehow I think the doctors are going to be reluctant to allow it but that would be reaaallly good if they did! I do find the idea daunting though- I’m so used to being here and I can’t imagine what it will be like being home again for an extended period of time but on chemo too. It’ll be another big life change to adjust to, but I’m sure it will work out fine!