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I just wonder
how many have found that this year seems to be flying
by and wondering where the time has gone. In my own
case I suppose now that appointments are very few
and a long way apart has made a difference. No more
looking at the calendar to check if that particular
week is free. No more waiting for the next trip to
Leicester other than shopping or to see the City play
- even if not back in the Premiership, yet. Already
it has seen some special days for Ann and myself and
hopefully a few more by the end of the year.
So with the
help of the calendar - I find my memory gets a bit
confused at times - I felt it was time for a bit more
about my life without the constant reminder of hospitals.
In October
2004 we decided to have our kitchen and dining room
knocked into one large kitchen/diner. Our builder
who is a very pleasant chap kept putting the date
back and suddenly we realised the kitchen would be
installed before the wall was removed.
| I always
felt it was well within my capabilities as a Wimpey
plasterboard wall isn't the sturdiest of constructions
and eventually Ann agreed. We have a local tip
in Melton Mowbray and over 3 days of about 3 hours
each the wall came down and all went to the tip.
What a difference it made as the dining room was
only used once a year at Christmas and we ended
up with a room 5 metres by 4 metres. It wasn't
until the middle of March though that we eventually
finished it due to deciding on a floor covering.
Ceramic tiles eventually won and apart from a
bit of tarting up we have a room that is far more
useful and pleasant to be in. |
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Last year I
had helped The
Beating Bowel Cancer Charity with an awareness
campaign and also kept in contact with the ladies
from CancerBacup. However what a surprise and a pick
me up when two invitations arrived within a few days
of each other. CancerBacup
were having an evening reception for their 21st Birthday
at St. James's Palace with Princess Alexandra and
Beating Bowel Cancer was launching its Patient Voices
Forum with a day at The Café Royal. Even better
was that Ann was invited as well to the Café
Royal which initially put the fear of god in her.
How did she think I felt about St. James's Palace?
Both days were
something neither of us will forget and it was nice
that things I had done to try and help others had
been appreciated (with many others) in this way. Another
good point was I ended up with a suit that fitted
me and was quite surprised how comfortable it felt.
To be honest my last suit had been years before for
a rather formal dinner with my sister.
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The
Palace evening was from 6pm to 8pm and quite a
chunk of that time I spent with Sandy Geddes (
Patient Information Manager at the Leicester Royal
Infirmary Cancer Centre) chatting to Wayne Sleep.
He was a fascinating person to listen to and also
was very interested in both of us as people. We
also met several old friends and made a few new
ones before it was time to leave. Later on we
had a fish and chip supper in Kensington and the
look from the chippy was quite hilarious as we
sat with our 'posh clothes' on squirting tomato
ketchup on the chips! |
We had not
had much of a break for a while and decided to have
a couple of nights in the centre of London's West
End for our visit to the Café Royal. Quite
amazing what the Internet can find at reasonable prices.
Not a thing we would do very often but being able
to step out the hotel virtually straight into Leicester
Square was a real bonus.
Our day with
Beating Bowel Cancer gave Ann an idea of my other
trips to similar events and after a nervous start
soon found it interesting and rewarding especially
as two of the speakers gave talks on Genetic Cancers
and Endoscopies. It wasn't all serious talk as we
found whilst listening to a couple of fundraisers
with tales of the London Marathon in a diving suit
and treks in Peru off the beaten track. Also the lunch
was something else to remember.
So our thanks
to both of the charities for the invites and making
us feel appreciated.
| I grumble
a lot about Central Trains and the service they
provide or rather at times don't provide in our
area. However I travelled up to Oldham PCT for
the launch of their DoH/Macmillan Genetic Cancer
Project. Never again will I grumble for travelling
between Manchester and Oldham was like going back
in time. Seemed I was on a glorified tram and
thanked the stars it was a short journey. Little
was I to know that on the return leg I went from
Oldham to Liverpool in the same tin shed! What
a relief though to then try out one of Virgins
latest Pendolino trains down to Nuneaton. A day
of contrasts which wasn't spoilt by my old friends
Central trains being nearly an hour late on the
last leg. |
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Early in 2005
my website started to show some startling figures
in the statistics leaping from 70 to over 150 new
visitors a month. Also many e mails from both sides
of the fence so to say appreciating what I was trying
to do. Now in June that figure is over 300 and I feel
quite chuffed about it all considering I nearly abandoned
it before it started. My thanks to the Genetic centre
at Leicester's Royal Infirmary for the final push.
I was invited
by Kay Neale the registrar at The
Polyposis Registry based at St. Mark's Hospital
to meet her staff and discuss how our two sites might
work together and other ideas. I hadn't realised it
all started over 80 years ago and was stunned by the
knowledge they had. I do wonder why though that there
aren't some standard procedures set for FAP after
initial diagnosis. Also the strawberries from the
hospital mini market were a real treat for Ann when
I got back home. Since that visit a day for FAP families
to get together has been set for November 12th at
St. Mark's and also eventually this site will be hosted
through the hospital as well.
In April my
only check of the year was due with all the usual
apprehension. Last year some polyps were found in
my small bowel and annual checks were suggested. This
seems to be one of those grey areas as there seem
different rules or guidelines in different areas of
the country and also different ways of checking for
them. As this is a non-medical site I will leave that
for the FAQ page. As
expected they were still there and will need checking
in a year's time. The biopsies were fine and hopefully
we can cope with that for now.
I started to
enjoy travelling on trains whilst in the RAF and still
do. With most of the meetings and events I go to held
in London or York this is an added bonus. Ann knows
I would always like a trip around Scotland but has
booked the next best thing, a trip on a steam train
from Melton Mowbray over The Harringworth Viaduct
complete with a 3 course dinner later this month.
Now at the
beginning of June 2005 we feel for the first time
in over 7 years free of urgent or potentially serious
appointments. This has however left a huge hole in
our calendar and for a while is very strange to get
used to.
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A lighter
side emerged early in the year with my friend
Jimby, the Russ Berrie Monkey. He had been around
the fringes of our lives since coming back from
Florida with us. He has had quite a bit of influence
as I now have about 20 monkeys of all kinds and
colours. So a place on the website was his idea
and within minutes had received e mails and photos
from a relative. My grandfather once said "Laugh
at life and life will laugh at you". How
right he was. |
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