Archive for the 'Life on hold!' Category

Wednesday 16 July… A waiting game

Just realised that I havent posted for a few days. Its been a bit of a torrid week. I had the rituximab as an outpatient last week, so I was hoping for a significant reduction in my white cell count when I went to clinic on Monday. Alas, that was not the case, in fact […]

Thursday 4 July… treatment starts!

Mixed day today I woke up in the night with a numb mouth (almost like a dental injection effect) and again when I woke. Although it soon wore off, I mentioned it to the registrar who launched into a stroke/TIA (transient ischaemic attack – medical term for a stroke!) assessment. Happily it should nothing untoward […]

Tuesday 2 July… Rollercoaster time

Well, an emotional roller coaster! I had a quiet weekend – still a bit shocked and upset that the ibrutinib had stopped working after on 4 months. I suppose I should have remembered that studies have shown that it is less effective in relapsed cases. I slept badly over the weekend but I was hopeful […]

Tuesday 25 June… Not so good news

Bit of a set back. I had a bit of a dizzy spell on Saturday, which although it passed did alarm me a bit, and on Sunday I thought I could feel a small lump in my abdomen. I had an appointment for a CT scan yesterday so I gave the Lymphoma Nurse Specialists a […]

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, […]

Sunday 20th January… and out!

A quick but productive stay at Southampton, but I am now safely back home! To summarise yesterday, after I was admitted, I had a litre of saline with Magnesium overnight. Interestingly I was on the bone marrow transplant ward, all individual rooms, so I had quite a quiet night. Funnily enough, I was a floor […]

Tuesday 15th January … Happy birthday to my Granddaughter and NHS crisis averted!

First of all a very Happy Birthday to my Granddaughter – 12 today! Now for the NHS crisis! There has been a major shortage of PJ trousers over the weekend, plenty of tops, but no trousers! Fortunately a new supply has been found before this was leaked to the red top press and all is […]

Monday 14th January 2019… A Sunny Day!

It indeed sunny and I have found a way of uploading photos from my phone, so I will go and add some to previous posts! This the view from the sunny side of the ward this morning! I woke up early at 6, after a fairly restful night, for today‚Äôs steroids! Tumour definitely shrinking. A […]

Sunday 13th January … More News – and An Intesting Fact

I was going to start this with an interesting fact (I like to be informative!) But I had a consultant visit last night – a bit too late to update last nights post which was already a bit long. So, after the registrar, the consultant came round (maybe the registrar told him I was asking […]

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