Peter’s Hospital Diary

I have been playing telephone tag with the Clinical Nurse Specialists for the last two days, but today I managed to speak to Amy about the results from Monday’s blood test. And its good news! The improvement trend continues, with one of my liver markers back within range, and another one nearly within range, indicating […]

Its been a few days since I lat wrote, simply because there hasn’t been a lot to report! I seem to be tolerating the ibrutinib well, and wahat was a visible abdominal lump – an enlarged lymph node – has shrunk back to the extent it is no longer visible, although it can be felt […]

It was check up day today, 4 days after I started taking the Ibrutinib. (this morning was the fifth dose). One of the questions I asked was how long it might take to start acting, but as the response is variable, there wasn’t really a definitive answer, but I was hoping that there might be […]

Day three of the Ibrutinib, and I’m pleased to say that I haven’t detected any of the possible side effects! 🙂 . On the other hand it is very early on in the regime, so I will continue to look out for them. Similarly I haven’t noticed any reduction in the size of the visible […]

I’m sitting in the cafe area of Southampton hospital having just had my blood taken for the blood test, and I have just heard from Mairead that the Ibrutinib has arrived! It will take abou 90 minutes for it to be dispensed down to the outpatient pharmacy, butby that time the blood test results should […]

So a call to the Oncology Pharmacy this morning and this afternoon confirmed that it hasn’t arrived, but I was assured that they are looking out for it and will let me know when it arrives. One problem is that while drugs from a distribution centre arrive at a set time, this comes independently (presumably […]

Yesterday was supposed to be the first check up after starting the Ibrutinib – scheduled for last week! However it went ahead anyway so that the overall state of my blood could be monitored. The consultation was with the Clinic Nurse Specialist, Mairead, and very though it was too! Long chats about how I was […]

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 […]

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, […]

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 […]