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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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