As far as the spine is concerned the area of swelling and tumour has stayed the pretty much the same after more than a year. This is obviously good news as in medical terms it means the tumour has 'plateaued' so it has not got any worse. I wasn't too worried about the results as I would have known when there is a neurological or spinal problem over the last few months so something must have worked.
The brain scans showed brighter images on both hemispheres compared to
last year. They are not sure what this means in the grand scheme of things but
the Oncologist will show the images to a multi-disciplinary team and see what
they think. He is not overly concerned and thinks it may just be my brain
reacting to the drugs I am taking at the moment and once he has chatted to his
mates then maybe there is something I am taking that is making my brain glow a
bit.
So where does this leave the cancer issue? I will see the Oncologist
again in January. I am not receiving Temozolomide treatment, don't want PCV
chemotherapy and I am not physically well enough to try Avastin and don't have
£70k to pay for something that will make me more ill anyway. So unless I
start chemotherapy again there is nothing they can do for me really. At least I
got a scan done.
To summarize: the
cancer has stayed the same, my brain is glowing a bit but the duration, dose
and subsequent side effects of long term steroid use are causing me major
issues.
As you all know the reason I take steroids is to stop the tumour from
compressing my spinal cord so my GP and the people at my local hospice are
aware of the situation. The fear is that when I reduce it too much the tumour
will progress. I am now down to 2.5 mg of steroids as of last week
and have lots of morphine in case I need it.
I am on pain patches full time now. Hopefully my body will start producing
cortisone again naturally again at some stage. So if there is a major
problem I have a few back up plans that involve a nice big dose of
morphine...as fun as it sounds I am such a control freak I have taken it 3
times in the last fortnight as I would rather feel pain than nothing at all. So
as far as the tumour is concerned it is a case of wait and see what happens.
So what has been prescribed? Same old really - get my legs ups to sort
out the edema in my legs, try and take diuretics, sort out pressure sores and
rest in bed as the reduction in steroids means I am susceptible to infections
and more pressure sores. My veins have collapsed to such an extent a nurse took
blood from where my knuckle meets my baby finger the other day.
Of course true to form, a little blister on my heel turned a bit nasty
so I cannot wear shoes. The skin nurse has bandaged my whole leg up so I am
pretty much housebound at the moment. The x-ray I had on my ankle showed nothing
too worrying in terms of the big pressure sore, but it is really frustrating
not being able to even put shoes on or get into bed without help because of my
leg.
Otherwise we are both keeping well. Jay is tutoring at her old school
most afternoons which is good for her, the kids of South London and the thing
formally known as our bank balance. When we got back to the UK we realised
that neither of us had worked for over a year and were living in some kind of
dream world.
We get to see some of our friends when I am up to it, but seem to have
to do it in instalments as our flat is too small for any big gatherings, isn't
child friendly and it is too cold for barefoot cripples so our options are
limited. Plus Jay had a fender bender 2 weeks ago so our car is at the panel
beaters.
Anyway I am not enjoying being a house husband of colossal
inefficiency as it is not that long ago I was working and studying, so
trying to accept that I am not well a lot of the time is hard to take sometimes
but I'll get over it. The people from the local hospice have been really
supportive and I am visiting the local hospice this Thursday to see how they
can help in terms of physiotherapy and complimentary therapy.
So again thanks to all for your support recently, once I am fit for
public consumption I'll hopefully see more of you all.
