Hi everyone, please visit our new look community site and let us know what you think. If you have any problems with the new site, you can still switch back to the current community site.
Please login to your my.Macmillan account.
If you currently have an Online Community account, you will be asked to create a my.Macmillan account the next time you try to login.
Don’t have an account? Create one now.
What is my.Macmillan?
a vibe in this soup … and there is going radioactive
We now have so much in the way of pain
relieving opiate-type ‘meds’ in Cold Comfort Cottage that we could be doing a
brisk trade in the village square to replenish the diminished funds. So I will not be making any joking
‘asides’ about topping up the poisons of your choice. (But, go on, if you must!)
the blog has been quiet it is because the writer of our ‘script’ has recently seemed
a little bored with his characters and it looked as if he/she was hastening
them towards the end of the series.
(But, really, I have not had
the heart for it.)
the script has a few more twists and turns in store for us yet – or so we
sincerely hope. But it has been
touch and go, my friends.
some truly terrible pain-filled days, some frantic phone calls, some threats of
formal complaints, we have had not one, but two oncologists coming out of the
woodwork (or taking time out from the conference season, which might be considered
to be much the same thing).
We will do a little flashback for new
readers: more than two months ago,
Our Hero raised the point that he had a ‘little’ back pain. (For that ‘little,’
read ‘excruciating’.) The nice registrar pointed out that it could be the affected
lymph node/s pressing on the spine and radiotherapy might be offered to help
quick as a flash, the big boss oncologist has Our Hero back in to the local
hospital to prove, it seems, that it is nothing to do with the lymph nodes but
it is more likely to do with the treatment (PDT) which we have sought
elsewhere. He prescribes a
slightly stronger dose of Cocodamol. (Keen readers will remember that he prescribed the
‘tablet’ form – impossible for Our Hero to swallow.)
two months on the pain team, in a hospital several hundred miles away, who are
monitoring closely the doses of pain relief drugs required, suggest that Our Hero
has clearly been putting up with a lot of pain and it might be coming from the
lymph nodes on the celiac axis.
This comes as no surprise to us.
the meantime, another scan has been done, because we (with the other hospital
behind us) have kicked up a fuss, and another ‘lymph node mass’ has popped up on
the scan, sited between the spine and the aorta. It is not a tiny ‘mass’ – it measures a fairly hefty 3cm x
something. Given that the other
tumours are growing so slowly, if at all, this suggests that this one has been
there for some time, doesn’t it? Or does it?
I don’t know.
good news on the scan is that ‘there is no visible invasion of the aorta.’
is all right then!
we had only been worried about a little spread on the spine.
it is not good news, is it? Or it
doesn’t sound so to us.
I point out to the GP and, later, to the Macmillan nurse, that Our Hero has
been putting up with this pain for more than two months, and that I think that
if something is not done soon I will, I tell them respectively, ‘kick some ass’ and ‘put in a formal
complaint,’ the phone has hardly stopped ringing.
Hero is now going to be offered some 'palliative' radiotherapy and his
appointment diary is getting very full.
will remember that I am being ‘phased’ back into work to top up the funds? Being ‘phased’ back in’ is a little
like ‘phasing out’ nuclear missiles, except in reverse. Like an elderly nuclear missile, my
timing and control is very unreliable.
can imagine my anxiety as I try to work out how we are going to manage all this. Work?
Radiotherapy? Appointments? All those questions that need to asked of the medics? The Hounds?
It is all hell, and we
are all going radioactive.
liver metastases are all stable – to start with this was the major
concern. The PDT also seems to
have slowed the growth of the primary tumour in the oesophagus. Just thought you might be interested ….
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?