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Maurice is a regular poster on the RDOC
Mouth Cancer message board. To chat
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Thursday 13th May 2004 - 7:00am
Well, where do I start? I went to Bradford Royal
for my appointment yesterday and my brother, Peter,
and son, Anthony, went with me. Mr Bem, my consultant,
informed me that I would be having radical neck
dissection on the 1st June 2004. This surgery will
involve removal of my jugular vein, neck muscle,
lymph nodes and part of my parotid gland. I was
informed that the chances of a cure are 1 in 3,
which came as a shock as I had just got used to
it being around 50/50. I was also informed that
the biopsy from my tonsil showed up irregular tissue.
It seems I am predisposition to having cancer cells.
Mr Bem also informed me that there was only a 1
in 3 chance that the cancer would not return. I
was then introduced to Dr Coyle’s registrar,
who went through the procedure for my radiotherapy.
She was very nice and understanding. It was during
this conversation that I found out they would be
giving me radiotherapy on both sides of my face,
not only on the right which I thought. It seems
that the tumour at the base of my tongue is at or
near the centre line so further secondary cancers
could go either way. She said I would be having
radiotherapy 5 days a week for 4 weeks (this may
change if after the neck surgery something else
is found). I was then introduced to Dr Coyle. Mr
Bem had informed me that he did not intend to remove
the area of cancer at the base of my tongue but
this would be treated with radiotherapy. I thought
that this was because it was very small. However,
I got the impression from Dr Coyle that this was
possibly because it would involve a far greater
operation in my mouth and mean I would have permanent
trouble eating and swallowing.
I had asked Mr Bem what I could expect if I didn’t
have any treatment. He said that my cancer would
probably be terminal within a year. I asked how
long it would be before it really impacted on my
having an enjoyable living, to which I was told
about 6 months. These time periods are obviously
a best guess as no one can really be sure. I asked
Mr Bem if he was at the point that nothing really
worthwhile could be done so that, if he was, I could
be told and maybe choose to just go away, except
my fate and enjoy what I could. Mr Bem said he didn’t
think we were at that stage yet. Sarah Cost came
part way through my appointment and I also spoke
to her about this. She agreed with Mr Bem, my brother
and son. What I don’t want to happen is that
I go into hospital for my neck operation, not get
over that properly, then have radiotherapy, not
get over that, then a further tumour appears and
be forever on a downward spiral. I also have to
consider the affects on my family. They have lives
of their own and can’t be expected to run
around after me (I don’t think I am strong
enough to go through this alone as some people are,
I’m a coward). Anthony my son has been told
at work he can have as much time off as needed with
me, but his employer has a business to carry on
and can only be expected to put up with it so long
before it affects his job prospects. The rest of
my family can’t be running backwards and forwards
after me.
I have really got to think about if I want to go
through this or not. I feel that maybe it’s
time to say I’ve had a good life so lets just
give in, I don’t know. I know most people,
on reading this, will think that’s silly.
But at the end of the day it does mean I am taking
back my life and gives me some feeling of being
in charge. I have not yet got to the point of making
that decision; maybe it’s just the shock from
being told what treatment and results I can expect.
Sarah Cost said she would ring me next week to talk.
Also it may help if I could talk to someone who
has been through this. I do have some real friends
on this site but still it would be nice to speak
to someone in person. Maybe I will contact Paul
if he doesn’t mind a loony contacting him.
Peter took me home with him and made me some tea,
which I attempted to eat but as my mouth is still
red-raw, I didn’t eat much. My mouth, where
they removed my tonsil, is still as sore as when
it was done. I don’t think that is helping
me think straight. My friends say I am losing weight;
this is not through choice as I am hungry but just
can’t get my food down. Maybe this is also
affecting my judgement. Peter then came home with
me and again stayed the night. I don’t have
a bed for him and he had to sleep in a sleeping
bag. I am very privileged to have a brother like
him. I was very upset last night and wept on his
shoulder. I just feel so alone and isolated don’t
ask me why I just do.
Writing this diary does help me. It’s like
having a partner to talk to, even if no one reads,
it still helps me.
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