Today was spent trekking to London for a follow-up appointment with the
consultant. Overall it was pretty positive, but it's still one hell of a
downer. It's a long old trek, basically my
whole day gets eaten up for a 5 minute chat with a doctor. Not to
mention the expense of fuel and tube travel etc - but it's unavoidable
with sarcoma as there are only a few specialist centres in the UK and
RNOH is my closest.
When we got there I was sent down for chest
x-rays - although when I told the radiographer that I'm having a CT Scan
in a fortnight he decided it wasn't necessary so I went back upstairs
without being zapped.
Then I got pounced upon by the research
people who wanted my blood - I can't be a regular blood donor now so
this is the next best thing, and I am all in favour of people
researching into cancer/sarcoma and hopefully finding a better way to
cure the bastard thing so I had no objection to letting them take a vial
or two. This time I got the new girl and it showed - she cheerfully
informed me that I was on her list of 'vital people' to look out for
because my sarcoma was really high grade with a high chance of
metastasis so they could learn a lot by looking at my sample. She was
also too new to take her own sample which was good because I got super
nurse who took the sample at record speed and with minimum discomfort.
After
that it was back to waiting for my appointment. They were only running
half an hour late which is an all time record. I didn't see my actual
consultant this time but a nice young registrar called John. He looked
at my hand and said it had healed well and all seemed to be fine. I
told him that I'm still having problems with gripping things and can't
hold a pen properly etc so he did a few tests and then agreed with me
that there was some definite weakness and it was caused by the amount of
muscle they'd had to remove along with my tumours so would be
permanent. I asked about physio and he said he'd write to my GP and ask
them to refer me locally because strengthening the rest of my hand
might help me compensate. Apparently due to the stupid way NHS funding
works my GP may refuse to do this because the surgery wasn't carried out
in their area, in which case he'll refer me for physio at Stanmore. We
also talked about the weird pain/numbness I have along the side of my
index finger. He said they could consider a nerve graft but the level
of response I already have is about what they would expect to achieve
and it might actually make things worse so there is not much point.
Then
he asked about the CT Scan and when I explained it was to follow up
from the radiotherapy it was his turn to scare me with talk about
metastatis - apparently the grade of tumour I had means there is a good
chance that it had already started metastasis before I had any surgery
let alone when the original lump was hacked to pieces by the first
surgeon, and that's why they'll be continuing to scan and monitor me for
the next 15 years! He went into quite a bit of detail about how they
might operate if lung mets were found and told me we'd talk about other
treatment options when the time came. Not the most reassuring of
statements really.
It took me a fair bit of reminding myself
that none of this was new information before I fully processed it. The
metastasis thing is a bastard but that's the way cancer works - the only
way you know you're one of the lucky ones is if you still don't have
any new tumours after however many years. However good or bad the
statistics and whether I worry or not all I can do is wait and see.
