So, today is Day 2 and were merrily wending our way through this second phase.
Was that a royal we? No, I guess that I feel youre all wending merrily with
me, as are all the lovely nurses and super doctors and a few Luddites who will
never work out how to read this but whose support is no less appreciated.
Day -1 is so called because originally the intravenous chemo started on Day 1
(as it still does), but so did the intrathecal chemo. However, a few years ago
there was a high-profile case when the intravenous chemo was given
intrathecally, which is invariably fatal. One of the measures they brought in
to ensure this never happens again was to not allow any patient to have
intrathecal and intravenous chemo on the same day, and rather than completely
shift the numbers (and thus potentially confuse everybody who was used to the
old system), they brought the intrathecal forward a day, from Day 1 to Day -1.
Another measure is that every time doctors go to a new hospital (and they move
every year), they have to go through the process of getting on the register to
be able to give intrathecal chemo, by observing others who are registered, then
doing a certain number of injections themselves while observed by doctors on the
register. At the moment theyre all getting themselves back on the register
here, so Ill probably have a different doctor each time for my lumbar
punctures, so that they can tick off their observed attempts! This time was
quicker than my first intrathecal, perhaps because the doctor didnt have quite
so many spectators
Yesterday was Day 1 and I had two different drugs (chemotherapies? types of
chemotherapy? chemos?) intravenously, which didnt have any particularly
noticeable side effects. The nurse (SuperLee: she moves at twice the speed of
light and never stops) gave me some anti-sickness concoction first, and said
that it wasnt likely the first doses of chemo would make me sick but perhaps
cumulatively it might. We shall see! Funnily enough I felt a bit grotty before
lunch yesterday (BEFORE getting the chemo), but had a bit of a doze and felt
fine afterwards, as I have done ever since.
Today is Day 2, and Ive had one of the drugs intravenously again, as I will
tomorrow and Saturday. Then I get two days off before the cycle starts again
(intrathecal on Tuesday and intravenous Wednesday-Saturday). Oh, and Im
getting another drug in tablet form (Days 1-28), which I have before breakfast
every day: I wondered yesterday whether that was why I had a bit of a tummy
ache, but it wasnt repeated today so hopefully it was just because I was tired
due to getting up early on Monday (Day -2?) morning and taking a bit longer to
sleep on Monday night.
The great news about the way this phase is timetabled is that Christmas Day and
Boxing Day (and New Years Day) Im not having any intravenous OR intrathecal
chemo, which a) is very pleasant and b) means they may well let me out to
celebrate Christmas en famille. Hurrah!
As I havent been told Im neutropaenic again (yet?), Ive been making the most
of being allowed out my room. Admittedly thats just involved strolling down to
the newsagents in the hospital to buy the newspaper (I was getting a bit fed up
with The Times, so am now trying the Guardian) and wandering up and down the
corridor on the Ruth Myles Unit annoying the nurses and trying to peer into
other peoples rooms. Its nice to feel slightly less isolated, and good to be
keeping my legs going a bit more than I did last time.