It is over a year
since I wrote the first part of my Genetic Journey and I
have started this conclusion several times but never managed
more than a few lines. Must be old age as my interest in
reading books also vanished and is still only there for
the most interesting ones. My concentration varies considerably
as does my energy so it's making use of the good days and
having an afternoon nap on the others. Luckily they don't
appear on a Saturday when Leicester City are at home. Could
be I'm not willing to waste my season ticket money. Time
seems to have flown by and it is hard at times to get the
dates right as so much has happened some good and some not
In July 2003 my close relative had a successful
operation to prevent colon cancer, which was a certainty
within a couple of years. Again the feelings of guilt were
around but at this time with the help of Ann my wife and
our children I was better prepared.
||Also by this time I was
involved with designing two websites, well three actually
counting one for the Leicestershire Primary Schools
Chess Association. The other two were for The Rutland
and Melton Cancer Support Group and Coping with Cancer
in Leicester. Besides running the sites I benefited
from the support both gave to Ann and myself. Not one
for fundraising I was able to indirectly help both as
the work was done as a volunteer.
At the end of 2003 I had about 10 appointments
to go on our calendar for the next year even before it started.
Mind you I had some hope as it might mean the last visits
to my surgeon and oncologist. I knew by now the genetic
checks would continue in some form for the rest of my life
but saw these two as the main hurdles for the year.
|In October 2003 a
short clip of an article from CancerBAcup appeared in
one of Ann's magazines about cancer genetics. I was
surprised that it mentioned the good news, which was
that these genes in breast, bowel, ovarian and prostate
cancer didn't mean you would get cancer. Not quite true
for FAP, so I telephoned CancerBAcup and found with
the room available for the article it had been impossible
to contain everything about the genes concerned. I was
also asked if I would be interested in reading a draft
copy of their new Genetic Cancer Booklet with about
At the time I never dreamt of what this
might lead too. I found the booklet very enlightening and
wished something similar had been available a few years
earlier. Then I was asked if I would be interested in my
name being put forward to being part of a group of patients
involved with some new genetic cancer projects, which the
DoH and Macmillan were proposing. With so much going on
with appointments and the usual family hiccups I wasn't
sure and was left to think about it.
||By November 2003 things
had quietened down a bit and Ann knowing of my growing
interest in trying to understand the FAP gene and its
implications on our lives persuaded me to say yes and
see what happened. The outcome was that I was one of
about a dozen asked to form The National User Advisor
Group for the projects. Quite a grand title but would
involve only about four meetings a year and some reading
of reports etc.
This has given me an interest and at the
same time help to promote the feelings of patients and relatives
in regards to the genetic cancer disorders. I felt like
many that at times we were talked about but not to, as if
our own thoughts were unimportant.
Through the group I have made new friends
and enjoyed the journeys to London, and York even if rather
tiring. This also led to my own website www.fapgene.co.uk
to add to the others. It actually was still my third at
the time as I had handed over the Rutland one. That wasn't
for long though as The Lakeland's Day Care Hospice in Corby
heard about me and asked for advice. Again I looked on it
as fundraising so added www.lakelandsdaycarehospice.org.uk
to my list. Lucky I am retired! I now spend a day a week
at the hospice tweaking old computers and getting something
back in return new friends who help to lift the gloomy days
and brighten up even the brighter ones as well.
Throughout the year I have been asked to
help with publicity about bowel cancer as mentioned with
CancerBacup and Macmillan. Word must get around as Beating
Bowel Cancer contacted the Leicester Mercury for an article
and the Melton Times have had their three pennyworths.
|Perhaps the most intriguing
was to help with the launch of The Prime Health Magazine
for men. The editor from Dr. Foster (a website well
worth a visit www.doctorfoster.co.uk)
contacted me and asked if I would attend a film session
to be used at its launch in Birmingham. My friends mentioned
about being made up and my youngest son even thought
the address in Marylebone sounded a bit dodgy. So imagine
my state of mind when on arriving I was directed to
the make-up room. I nearly died but was made to feel
at home and ready for an interview before the camera.
I think they told all of us involved how good we had
been and I asked if I could take the 'new me' home instead
of the older version. Mind you there was a funny look
from one chap on the underground.
Although I was under the stoma department
at Leicester Glenfield Hospital I was asked by the Leicester
Royal Infirmary Stoma Department to do a bit of visiting
for them. Again this led to other things and coffee mornings
for Loud Tie Day were spent giving a helping hand. It was
here I found out about the bowel cancer support group 'Moving
On' which meets once a month at the L.R.I. During the year
and until recently it gave both of us valuable support and
knowledge about how to cope with cancer and the days out
in Bridgnorth and Stratford on Avon not to mention post
Christmas meals will always be remembered. It has a rather
apt name for during 2004 I decided it was time to move on.
I had been given an OK by both my surgeon and oncologist
and the interests of the genetic side of my cancer provided
a different kind of support.
The most nerve-wracking days were early
in 2004 when I was waiting for the results of a CT scan
after a niggling pain in the groin. I had been used to ultrasounds
but this was to me serious stuff. Both of us were shaking
as our oncologist came into the room with a smile and a
look as if to say what are you worried about. The relief
that nothing was wrong was almost as bad as waiting. I did
notice though that he had no notes with him and assumed
for the future that this would be a good sign if it happened
again. It was only a few months later that we were shaking
for a different reason when he told us that the next time
he saw me he hoped would be in a supermarket. The emotions
were so mixed and it literally took days for the news to
sink in and the fact that they were happy not to see me.
In late 2004 I had my last appointment
with my surgeon. There was going to be another one in 2005
but as I had a thank you card, which I said would be a pity
to waste, he agreed to take me off his books..
||Another side to my story
is volunteering as a patient for the student doctor
examinations at Glenfield Hospital. There was an ulterior
motive as it gave me the chance to mention the genetic
side to these would be doctors and a hope for the future
that a more general knowledge would be known about the
subject. Also I enjoy giving a brief tale of my journey
to health professionals taking the cancer care module
course through the L.R.I.
My website www.fapgene.co.uk nearly never
happened and I must thank the genetic centre at the L.R.I.
for their interest which eventually got me going. It is
in its early days and was designed to put links in one place
about FAP. I worked closely with John Smails of The Ileostomy
and Internal Pouch Support Group (www.the-ia.org.uk)
It was realised that surgery to prevent cancer because of
FAP would most likely mean either an internal pouch pouch
or ileostomy. The ia already had a discussion forum and
while we were discussing adding an FAP section the matter
was raised by one of the ia's members. Saved me a lot of
work and also helps promote the interests of both parties.
I wasn't sure how the website would be
looked on by the health professionals but with one exception
I have received encouragement and also several emails requesting
help and advice. The next step is to try and organize a
days meeting for FAP'ists later in 2005. A venue in the
middle of Leicester looks very promising. Whether it will
take place depends on how many would be interested and what
such a day might include and where some funds might be available
from.. Something else to keep me busy during the winter.
So what does the future now hold for Ann
and myself? An endoscopy in April 2004 revealed polyps in
my duodenum, which will need annual checks on. These are
not so aggressive as those in the colon and the gastroenterologist
put them into perspective by saying I was more at risk of
complications with diabetes and blood pressure than the
polyps turning cancerous. I will also see my dermatologist
who is interested in my cysts, which after around 160 still
manage to appear in various parts. With a little persuasion
I managed to make my visit an annual affair instead of six
I have forgotten to mention Gardner's Syndrome
which I was diagnosed with which is now seen as part of
FAP and not a separate genetic fault (or so I read somewhere).
There are several things that might happen through FAP/Gardner's
Syndrome but the chances vary and the view seems to be not
to worry about everything as it might not happen. I can
accept that but like a posting on the Discussion Forum mentioned.
You have an operation to remove the certainty of colon cancer
and are then left to realise that this pest of a gene has
several tricks up its sleeve, which might affect you over
many years to come.
|So with Christmas approaching
and my 62nd birthday on Boxing Day we seem to be coping
with FAP most of the while however there will always
be times when it raises its head as check-ups approach
or an ache starts somewhere and you begin to wonder.
Perhaps because of the gene my cancer was caught early
enough to be treated which was a bonus. I also wonder
how many people in the UK have FAP. The only statistics
point to the percentage of bowel cancer caused by the
gene. How many who have the gene and preventative surgery
are not included in those statistics.
Over the five years I could not thank all
those concerned with my treatments enough and those that
have given support to Ann and myself.