Personal Blogs

Today was the MRI, mask-making and planning CT.  That all went really well.  Everyone was utterly lovely, of course.  There were only four forms that needed filling in this time

My mask wasn't quite like the picture I posted, instead it goes over the shoulders.  To keep my hair out of the way, it got put in to bunches, which must be the first time I've had bunches in about 35 years

The visual fields testing will be on 3rd August - the earliest they could see me was 20th July (when I am on holiday), and when I phoned up to move it that was the next available date.  But I am still able to start treatment on 27th July, though!  The visual fields changes that we are monitoring for are something that would take place over years, so having my baseline test done one week in to treatment is not a problem according to the oncologist.

They've actually given me my full schedule - 30 treatment appointments and three review appointments, Monday 27th July to Monday 7th September.  Usually it finishes on a Friday, but I'm not getting treated on the bank holiday Monday in August, so one day gets added on the end for that.  Oh, and those review appointments are scheduled for immediately before or immediately after a treatment appointment, so no hours of hanging around or having to go somewhere else or anything, how jolly organised (maybe, just maybe, they've done this before!)

The only bit of pre-work remaining is the blood tests for pituitary function - and the reason they weren't taken today is because I've been invited to participate in a research study.  I am almost certainly going to say yes to this.  It involves detailed blood tests for pituitary function - it means fasting from midnight and then having blood draws over about five hours while they give you things to measure your growth hormone, thyroid and cortisol responses, i.e. how well the pituitary is.  This gets done before treatment starts and then six times in the following five years.  There's also the standard pituitary function tests done in between these bigger visits.

It's basically the pituitary testing I'd be having done anyway, just in more depth and a bit more often.  It can also be matched up with my scans so that they can try to correlate more precisely treatment locations with subsequent dysfunction.  In essence, they want to know if they can make better predicitons about the long term side effects based on exactly where you are being treated and how much treatment you are actually getting.

In the tradition of clinical trials everywhere, it even has a name: VoxTox (which I have to say is a lot less contrived than the names of a number of the trials I've worked on!)