Ugggh, awful set of days since Friday and to be honest I've only really just got myself round to being able to write about it.
Friday (20th) was the 4th and last of my Phase 1 induction IV chemo, more chemo is to come but that's for a little later. It also happened to be the last day of the outpatient ward being open at the John Radcliffe ahead of moving to the brand new building/ward at the Churchill (still in Oxford, only about 2 miles away but it is a little easier for us to get to as we now miss the major roadworks).
Because of the move, the ward was shut except for one bed as it was a marshaling area for crates & equipment and myself and the other 2 people booked in for the day had our chemo in a little office - very cosy :-)
It was over pretty quickly and we were home early but right from being home, I started to feel really low very quickly - mainly in the form of extreme fatigue and nausea. To cut a long story short, although the anti-nausea medication helped stave it off physically, it was a rubbish weekend of feeling very low and depressed.
On the "plus" side - I had an opportunity to talk about this with one of the wonderful nurses yesterday about the weekend and I feel somewhat "normal" in that what I described matches a lot of other people's experiences.
Today, physically I feel OK but just really, really tired - I probably ought to sleep more during the day but I don't want to be waking people up in the night by altering my sleep pattern too much; plus when I wake up I'm usually hungry so that's a pain finding something easy and quick to stave off until breakfast!
This week is a relatively easy week I think for treatment - "just" Asparaginase jabs & Caspofungin IV (Mon/Wed/Fri) but tomorrow (Wed) I will also have an Intra-Thecal (spine) jab - I will be taking the sedative option to try and knock me out!
I'm still in the Induction Phase but between Phase 1 & Phase 2 - start of Phase 2 will be determined from my blood counts reaching a certain level again before more blasts of IV chemo, hopefully I will be getting some strength up at the same time as hospital visits will increase to 4 times a week for 3 weeks :-(
Main risks at the moment - the neutropenia, so keeping myself to myself as much as possible to avoid infection risks...
On the peripheral neuropathy front - tips of toes are starting to be affected I think but it's not something I'm usually focused on so difficult to tell. Fingers though are a nightmare, dull numbness about half-way up each finger and thumb - doesn't stop me from doing things but it's just a generally unpleasant sensation and makes delicate tasks a little fiddly.
Finally for this post - hair. I think after a long battle to hold on to it, it's starting to go. Not sure if it's all coming out or just thinning. Jake is excited about the prospect of me going bald, I'm not sure I share his enthusiasm but will post a picture if I do as I'm kinda curious myself now!
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