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| EXPERIENCES
> PETER'S STORY |
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| For
me it all started in June 2003 when
I noticed a small lump in my neck while
shaving, it was clearly swollen glands.
I thought nothing of it and assumed
it would go away. After a couple of
weeks with no change (no other symptoms)
my wife insisted that I went to the
doctors. A week later (earliest appointment
available) I saw a young new doctor,
who had a look and instantly decided
to refer me to my local hospital –
Broglais, Aberystwyth. |
Shortly afterwards we went on a pre planned
holiday, on our return my appointment was
waiting for me – another 2 weeks wait.
I saw a Mr Mamood who is usually based at
Carmarthen but has a surgery at Bronglais.
He felt my neck and drew some fluid from one
of the lumps. He then inserted a fibre optic
camera up my nose (after so many times this
is now routine to me) to take a look at my
throat. He wasn’t pleased with what
he saw, he told me “something is there
and we need to take a closer look”.
At this point I instinctively knew that things
were about to get serious. He telephoned his
secretary at Carmarthen and I was booked in
for the following Monday “for a biopsy”!!
Now my wife was waiting for me in reception
and I had to try to put a brave face on it,
I didn’t succeed. I knew what was coming
and couldn’t handle it – no time
to get used to the idea. We got home and the
phone never stopped ringing, all the family
wanting to know how it went and then not knowing
how to react.
So off I went to Carmarthen for a 2 day stay
(2 hours drive from my home) and I still didn’t
know what to expect. The staff were all really
good and Mr Mamood explained what was going
to happen. Basically there was something on
the very base of my tongue and he wanted to
take a bit for analysis. None of this seemed
particularly bad and I was home in 2 days
as expected. Shortly after this I had a call
from the hospital asking me to go in for another
couple of days for some more tests. They did
the lot, CT, MRI, camera down the throat into
the stomach etc. I had the latter many years
previously and wasn’t looking forward
to a re-run!
While is hospital this time, Mr
Mamood came to see me just before I was discharged.
He confirmed that I had a malignant tumour
on the base of my tongue. He also told me
that because of its location the only possible
treatment was a major dose of Radiotherapy
followed by surgery to remove the infected
glands in my neck as these were seen as a
secondary infection. The implication was that
if this treatment didn’t work then I
might lose my tongue. I should say at this
point that at 49 years old the prospect of
any of this did not appeal to me. I have lost
count of the number of times I have been asked
if I am a smoker or heavy drinker. I have
never smoked and only drink in moderation.
Now while all this was going on we had our
house on the market (Mid-Wales), we had accepted
an offer and were hoping to move to Spain.
Of course, all this went out the window. We
did decide to go through with the sale of
the house. We purchased a smaller property
in Shropshire. This meant that I was transferred
to The Royal Shrewsbury Hospital and had my
first consultation while we were still living
in Wales. The whole approach here was totally
different, my wife stayed with me during every
consultation and we were seen by a group of
consultants including Mr Thompson, Mr Smith
and Mr Srihari, plus many others including
Catherine the Macmillan nurse. Apologies to
those whose names I cannot remember. The first
thing they wanted to do was have me in for
another biopsy so they could see for themselves!
So, another stay in hospital and all that
goes with it. They had me in the following
week and then it was just another anxious
wait for the results.
They confirmed the first diagnosis
but they wanted to adopt a totally
different approach. Mr Smith & Mr Thompson
wanted to use laser surgery to remove my tumour
and then remove the glands on the right side
of my neck. They would give me about 6 weeks
to recover and then I would have Chemotherapy
followed by Radiotherapy. They explained that
the laser surgery was still relatively new
in this respect but assured me that it held
out the best prospects for me. The only problem
was that they didn’t have the required
equipment at the hospital and needed to hire
it in. In the meantime I was to have a ”peg”
fitted to help with any feeding problems later
on. A couple of weeks later I was in for my
operation(s). All prepared and ready to go
down to the theatre only to be sent home because
the equipment hadn’t arrived. The doctors
were very apologetic – not that it was
their fault. So another wait while the equipment
was organised again. They were very good and
kept me informed all the way. I had a call
about 3 weeks after the first cancellation
asking me to go in to see them. Because of
the problems getting hold of the equipment
they had asked a consultant (Mr Pracy) at
the Q.E. in Birmingham if he would take me
on as his patient - the Q.E. already has the
required equipment. He agreed, and so it was
another short stay at the Q.E. for another
biopsy – at this rate none would be
left to operate on! At this point things get
a bit confusing because Mr Pracy agreed that
the laser operation was the best way forward
but some days later he rang me and told me
that the “group meeting” had decided
that the best thing was to remove the tumour
surgically through the side of my neck. They
would then attach a flap to the base of my
tongue made from flesh removed from my wrist.
He said that the Royal Shrewsbury Hospital
had the facilities do this so I would be transferred
back to them! Some days later I was called
in to see Mr Smith & Mr Thomson again
at Shrewsbury, they were still convinced that
the laser surgery was the best for me. I decide
that they were right and so it was back to
waiting for the equipment to be obtained.
It was towards the end of October
(2003) when I finally got the call
to go in for my op. I think I was in the theatre
for about 6 or 7 hours, they did my tongue
and then the re-section on my neck. The laser
thingy is inserted through the mouth and caused
a little damage to some of my teeth. They
decided that I wouldn’t need a Tracky,
so that was one bit of good news. They told
me they had removed a piece about the size
of a golf ball from the base of my tongue
and that 1 of the glands remove from my neck
was a grade 3 tumour. Everyone was really
amazed at the speed of my recovery from the
operation, I could still speak and eat and
drink a little and thought that it would be
all plain sailing from then on, I was very
mistaken!
My Chemotherapy and Radiotherapy started
towards the end of November. I was to have
3 sessions of Chemo as an in-patient and 33
doses of Radiotherapy. The making and wearing
of the mask wasn’t something I enjoyed.
These 2 treatments really took it out of me
especially towards the end, as, due to the
Christmas break on some days I had 2 sessions
of Radiotherapy. This was just about the lowest
point in whole episode and it was far worse
than I expected. Treatment finally finished
early in January his year, all I had to do
now was recover. My “peg” was
being used to its full potential with many
cartons of Ensure going down it daily. The
following 2 or 3 months are a bit of a blur
really, only punctuated by regular visits
to see my consultants – camera up the
nose again!
So now, just a year since my operation and
10 months since my Radiotherapy ended I suppose
I am recovering well. My Peg was removed about
3 months ago and I’m about 18 lbs lighter
than before all this started, I really need
to put on a little more weight. I rarely have
Ensure now and am eating quite well. I still
have little taste and my mouth is still very
dry but my biggest problem at the moment is
being unable to open my mouth very wide. They
tell me its due to the Radiotherapy. I’ve
had physio on it with little improvement.
I still have all my teeth but they don’t
look to good and my gums have receded, also
due to he Radiotherapy.
My checkups are now down to every
8 weeks and will continue like this
for another year. Every time I go it’s
the camera up the nose again. The Consultants
say it all looks like brand new! I suppose
I should count myself as being lucky but that
doesn’t seem quite the right thing to
say. I don’t suppose things will ever
be the way they were but you just have to
get on and make the best of things as they
are. Through all of this the hospital and
staff at Shrewsbury have been superb but I
can’t help thinking that things could
have turned out very different if I was treated
in Wales. I have to thank my wife for putting
up with me, I’m sure that at times I
have been lees than pleasant to live with!
Regards, Peter
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