November  2016 (post 1)

Maintenance treatment

Sorry for the long silence.  I thought I might discontinue the blog but the maintenance treatment brings with it new challenges which I thought might be of interest.  I shall probably only post once or twice a month.
I am getting used to the maintenance regime properly and developing my own regimes for dealing with it.  I have bought myself a 7 day pill box so that I can keep track of the different drugs I have to take on different days.  I take acyclovir (anti-viral) twice a day and antibiotics twice a day on Saturdays and Sundays.  The upside of this is that I haven’t had a cold/cough/sniffle at all even though people at work and my car sharer have been suffering.  I also take chemo drugs every day (mercaptopurine) and methotrexate weekly on Wednesdays, except the week before the intrathecal.  Then every three months I also have 5 days of steroids.  You can see why I need the pill box!
I visit the hospital once a month on a Tuesday to see my consultant, and she usually asks for an extra blood test in between appointments.  I have finally developed a system for blood tests.  I come down to Addenbrookes on Monday lunchtimes – it’s only a 20 minute cycle ride from work, so I can fit it into my lunchhour .  If I arrive at 1:30 I rarely have to wait longer than 10 minutes and then I can be sure that the results will be on the system when I see the consultant the next day.  It’s much better than arriving two hours early for an appointment to have the bloods and then not being sure that they will be ready in time.  I have also realised that it is possible to leave my prescription card with the pharmacy after my appointment and pick the drugs up the next day – another round trip by bike to Addenbrookes, but again it means less hanging around.
Once every three months I have two outpatient chemo appointments:  one on the same day as seeing the consultant when I have vincristine, and one later in the week when I have the methotrexate inthrathecal (via lumbar puncture into the spinal fluid) as well as some bone-strengthening medication (1.5 hours on a drip).