Archive for the 'Post Hospital' Category

Wednesday 18th September… blood!

I received my two units of blood yesterday! I was feeling pretty rough when I went into the hospital, but I was soon canulated and the first unit started over a period of two hours. No adverse reactions and my observations improved of the course of the transfusion – increase in blood pressure, reduction in […]

Saturday 14th September… bearing up! (Grrr)

I had clinic last Monday and took my overnight (or strictly, over week bag) with me as I was expecting to be admitted for mor cytarabine on the ward. However I was told that a better solution was to have more Subcutaneously as the release profile is gentler and the individual doses are lower. The […]

Friday 23rd August…Taking stock – again! :)

It’s been a strange week, but really good having my parents visiting and helping me out. Yesterday I went back to the hospital to pick up the Ibrutinib and have a blood test. I also took the opportunity to chat with one of the clinical nurse specialists (Amy) abut some of the otherside effects (i […]

Wednesday 21st August… Escape!

Yes, I managed to escape on Monday afternoon and I am now at my home with my parents visiting (and looking after me!). I think I slept for over 10 hours on Monday night, and felt a lot better for it. I still feel a bit tired, but my Hb is still quite low and […]

Saturday 3rd August… And home!

Yes, made it! After a day of nothing much yesterday, I finally saw the doctors and was allowed home! My blood pressure is still low, as is my red cell count and platelets (although both improved after the transplants) but as this is about a week after the cytarabine, this is expected to improve. I […]

Thursday 25th July … Blood test and result

As the title says, I went into the hospital yesterday for my blood test. As I was leaving, I bumped into one of the Nurse Specialist (Amy) so we had a brief chat. She did say she would let me know the results if they were available by 5 o’clock, but no call came! However […]

Wednesday 6th February… More frustration, but maybe some progress?

I resolved not to chase things up today, so I was pleasantly surprised to receive a call from the the CNS office apologising for not calling me back yesterday, but saying the Ibrutinib was here and ready for collection (Clinical Nurse Specialist) – but she would check that it was in the outpatient pharmacy before […]

Tuesday 5th February 2019… Frustrated and impatient

As you might guess from the title, still no sign of the Ibrutinib. I waa told on Friday that it would be here on Monday. Yesterday I heard that it was probably at the oncology pharmacy (where it goes to be dispensed and then sent to the hospital pharmacy for me to collect). So today, […]

Friday 1st February … A slight set back!

I was hoping to have started the Ibrutinib yesterday, but when I rang the pharmacy I was told that the prescription hadn’t been written and there was a delay “with the form”. This was slightly worrying because I was getting to the end of the steroids and I needed new supplies! However a quick call […]

Tuesday 29th January…Update and good news!

I had a quietish weekend after the ‘excitement’ of the last three weeks – my parents visited which was good, and I spent some time getting the house back together after my lengthy absences. But in reality this was just marking time for the follow up appointment scheduled for yesterday afternoon, when I was hoping […]

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