The oncology appointment was pretty intense. I was there for near enough two hours and very little of that was waiting.
First
they took blood samples and weighed me. Then I got to talk to my
oncologist who asked me to tell her everything that had happened so far
and then explained what she would be doing next. She also recommended http://www.sarcoma.org.uk/ as a useful website to look at. It's one I knew existed but haven't really browsed yet so I'll do that later.
Then
we went round to the treatment room where they tried various different
methods to get a good mould for my hand - it has to be in the exact same
position every time. Once they had found a technique that worked I had
a CT scan of the hand and a tiny little tattoo on my palm that they
will use to make sure everything is lined up every time. Luckily most
of the marks can be on the mould so I just have a dot. I kind of
expected my first tattoo to be something a bit more impressive so I
intend to consider it as a picture of great cthulhu from a very large
distance rather than just a dot.
The plan is that I will have six
weeks of radiotherapy starting in a couple of weeks - exact date to be
confirmed as and when my oncologist has compared todays CT scan with the
pre-surgery MRIs and formulated her strategy. Apparently the skin
graft means I may not make it through the full six weeks - they tend to
react quite badly and if it starts weeping and suchlike they'll end the
treatments early. It doesn't sound like a lot of fun - she says the
first couple of days are fine but then the skin will get sore and itchy
and as the treatment progresses the hand will become swollen and
painful. The fact that it's a skinny part of the body works against me,
no padding to spread out the ouch. It also means that she'll be using
Electron Radiotherapy where most of the force is focused on the surface.
Even so it will effect the back of my hand enough that I will have to
keep it out of the sun pretty much forever since radiotherapy increases
the chance of skin cancer in the treated areas. Apparently Synovial
Sarcoma's are "extremely likely to recurr locally" unless radiotherapy
is given so it's worth doing.
It's going to be a bugger though,
parking is £3 a time at the reduced for patients rate, plus we'll have
extra fuel costs for six weeks getting me there and back. It might
actually work out cheaper to stay in their hostel rather than travel
from home, but I'm not sure how much that costs. I'll probably have to
take time off work and that'll mean I'm just getting SSP so I'll be
skint as well as knackered and hurting. I hadn't realised before just
how sodding expensive having cancer is, we've already spent £100s in
getting to London for appointments and treatment and that figure is just
going to keep on mounting up *sighs*. If I was a horse I'd have been
shot by now, maybe that's a better idea.
