Thankfully I managed to get home this morning, the redness and hives from yesterday have gone down but my hands are still slightly puffy which is ultra glamorous (not).
This wasn’t my ideal way to kick start the weekend but I am just glad it’s over and my symptoms didn’t get any worse. In case they did there were all sorts of drugs prescribed on standby, the doctor mentioned adrenalin at one point which made me worry as I didn’t think I was THAT bad, but then she said she didn’t want to give it to me as it would make me feel rubbish, mess around with my pulse and I wasn’t at that stage. I think she saw my discomfort as she was very reassuring, telling me not to stress and that everything was fine as long as I didn’t get any worse.
The nurses on during the day and night were all really lovely which made spending most of the last 24 hours in hospital a lot more enjoyable, it’s always nice when they make the effort to stay and talk to you. It makes you feel more like a person and not just their next patient to be dealt with! One of the nurses I had met on that first night back in August last year and she remembered the details such as what I was given on arrival (fluids and blood transfusions!) so it was really nice to catch up with her almost a year later.
I feel much better today but have to admit I am currently in bed taking it easy as I didn’t get much sleep what with itching in the night and waking up at 5 am for some unknown reason this morning!
Hi all, today I had to come to St Richards for another platelet transfusion and ended up having quite a big allergic reaction to them. I broke out in hives and red patches all over my body, my face went hot and my hands have gone all puffy. It’s really miserable as I am lying here feeling itchy, shivery and uncomfortable despite the dose of piriton I was given. The doctor wants me to stay overnight as the reaction hasn’t gone down yet and I am not feeling right. The redness doesn’t come out as obviously in the photos as it was in real life but here are a couple to show you some of what happened, you can see the constrast of rash and normal leg and the redness in my face!
I’ve taken a photo of my hand and will take another tomorrow and do a comparison!
I’m going to try and sleep now and I will update you with how I am doing tomorrow.
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!
Anyway, I am now eating Heroes and mulling over whether to watch I’m A Celebrity or Fear of Flying: Caught On Camera at 9! Before i go, here’s this weeks nails…