Hello people
I hope this finds you all well. Thanks for all the messages while I was in hospital.
When
I last left you we were in the middle of our trip to Scotland. The
doctors had just told me that my disease progression had accelerated and
I needed immediate chemotherapy. We had already booked a holiday and
were told it would be a good idea to just go on our trip, as the future
was a bit murky.
So after a quick 10 hour drive we spent
10 wonderful days in Edinburgh, Lochgilphead and Stirling. It was well
worth the trip, but was very painful and uncomfortable. I started my
therapy the the day after we returned and was pretty sick from the
begining and was suffering from severe sweats and pain throughout.
Unfortunately
all of these symptoms culminated in a trip to A&E at St. Georges
Hospital for 3 days with a suspected infection and severe vomiting. They
scanned me and thought the IV antibioics were causing the technicolour
yawns so kept changing them. They discharged me and I came home and
promptly got worse the next day. I couldn't speak and was totally
disorientated and was rushed to hospital, where CT scans showed there
was pressure on my brain. This is called hydrocephalus and isnt't a good
sign. Google it, if you have the energy.
This
pressure is caused by excess spinal fluid which is a result of the
tumour growth, which in turn was causing the sickness and temporary
madness.
I can just about cope with the pain and
constant discomfort, but when your brain goes, then you start to worry.
It is very strange knowing what you want to say, but being unable to say
it coherently. They gave me a huge course of steroids to reduce the
swelling and booked me in for a range of MRI scans.
The
problem was that when I was admitted the second time, I was left on an
A&E trolley for 12 hours during which I was in and out of
conciousness. Because of this time spent on a flat hard surface and
because I was on an MRI trolley for 3 hours a few day later, I now have
pressure sores on my sacrum and I am now totally bedbound as the skin
and flesh has broken down.
I spent nearly a year and a
half stuck in bed with a Grade 4 pressure sore and managed to recover.
We are so careful at home and on holiday, but after a couple of days in
hospital I now have a debalitating pressure sore. Being stuck in bed
for that long last time was a form of mental disintergration I don't
know if I can repeat, I am happy that it is already showing good signs
of improvement thanks to the efforts of my darling pressure
sore-whisperer wife. What a job, eh?
We are obviously
upset and p**sed with us and the hospital for letting it happen, because
I have to lie on my side to take pressure off my butt, which hurts a
lot with this tumour. It also means I cannot get up and go anywhere or
do anything for longer than a few hours. I also have to change position
every few hours and this means Jay cannot get a break or even sleep
properly.
On Monday we met up with the oncologists and they told us what the scans have shown.
There
is now significant damage to the top of my spine and neck, as the
disease has progressed considerably from the scan of 3/8 till the last
one on 29/9.
I am now onto the last resort in terms of
treatment. I have started Etoposide chemotherapy and we will see if
that makes a difference. Side effects are bone marrow loss, hair loss
and the usual infections, but I have no choice but to take my poison and
hope for the best.
We have always known that this
would come eventually, but it doesn't make it any easier. You have to
roll with the punches and take each day as it comes. I meet the
oncologists next Monday and I'll have a better idea whether the
treatment is doing anything positive by then. My mom and sister are out
here from Australia visiting us which is great and I am slowly getting
my pain medication working for me, as I am have been so uncomfortable
recently.
Thanks for all the messages as always and take care.
