Lucky Escape - Paul
It was early January 2003, when I
received the news that I had been diagnosed with FAP
and that I would need surgery. After consultations
with a surgeon and a genetic consultant, we agreed
that a Total Colectomy with Ileorectal Anastamosis
(IRA) would be the preferred procedure for me. On
18th March 2003, my life changed for ever. The operation
went well, and three weeks later I was allowed to
go home to continue the recovery period. Before the
operation it was explained that I would require medication
to help control my bowel movements and this was indeed
the case for eighteen months.
Six months into the recovery I was
asked to attended an appointment at a local Cancer
Clinic when the full details of the colon biopsy where
explained and the FAP condition had been confirmed.
The strange thing is I am an inquisitive person, yet
the questions just never came out during that appointment.
I was left hollow and I suppose in a stage of shock,
How can this happen to a relatively healthy forty
year old man and require major surgery for such a
devastating condition from simply having a "
slight " pain in my side, it can't happen can
Well here is the proof. This was
only the start, as the doctor explained that I could
undergo Blood DNA tests as this condition could be
hereditary, and if diagnosed my son, brother and sisters
would require screening. As if it was not hard enough
to get through to myself but the thought of passing
this problem on to my fourteen year old son really
took the legs from under me.
A blood sample was sent to Liverpool
University for screening, which turned out to be negative.
After which a further sample was sent for screening
to a clinic in Birmingham. Several months passed and
the sample came back as negative, off the hook I thought!!
I was then told that the testing was not always conclusive
as techniques where still being developed. I was asked
if a third sample could be tested for MYH, another
gene configuration which is linked to bowel cancer.
But after several months that again turned out to
With only a photo copy of a booklet
called "A guide for Families " to read I
began to look for answers on the Internet. Most of
the information seemed to come from Canada, which
proved to be difficult to get hold of. I found Mick
Mason's site by chance late one evening. At last I
could "talk "to some one who understood,
and may have some answers to some of my questions.
Mick explained that he was helping to arrange a "family
day" when people with FAP could speak to each
other along with cancer support staff. So in March
06 I attended the first meeting, it was both very
interesting and sad at the same time. You hear of
the different stages of this condition and how it
had effected family's from all walks of life. How
the impact had affected adults, children and teenagers
irrespective of their up bringing. Mick introduced
me to a lady from St. Mark's hospital in Harrow, who
had been working in this area for a number of years.
She explained that a Family Day had been scheduled
at St. Mark's on the 6th May 2006. This would be a
chance to speak to more families and more medical
May the 6th arrived and my brother
and I arrived in Harrow at 09:20, ready for the meeting.
About sixty or so people turned up which was a bit
daunting at first. The medical team held small work
shops which consisted of a Bowel Surgeon, Nursing
Staff, and Clinic Technicians. The information day
lasted until 16:30, and the amount of information
gained in one day supersedes any of the books or articles
I have read to date.
The staff gave very reassuring presentations,
if a question was asked then the facts came to light,
they explained that the DNA testing was only 85% effective
in locating the faulty gene. This answered one of
my questions as to how I could have FAP but the faulty
gene would not show up in a test. Again it was interesting
to see the different cultural mixtures and age groups
touched by FAP.
Both Family days have broken down
walls for me and helped let me know that we are not
alone and that research is ongoing into this life
threatening problem. To date my family have all had
at least one negative colonoscopy, and are now under
going yearly check ups.
You would think that after three
years I should have got use to the changes in my life,
because of the bowel operation but can't help missing
the football match on a Saturday, or the horse racing
at Auntie. I don't go to public events as in my experience
football grounds, cinemas' concerts they don't really
cater for people with bowel problems. And if it's
not bad enough to needing to use the facilities during
a night out I find explaining my needs to others who
can't understand very draining. I recall in the early
days trying to book a seat near the toilet on a plane,
and my wife having to explain five times why she was
making this request.
The one thing I can't forget is when
I was in the recovery room after eleven hours of surgery
was the consultant saying " what a lucky escape
I had because the polyps had been found". I can
assure you on some days when my friends are going
out to the races or a football match or when the toilet
visits go into double digits I don't feel so lucky.
But then again I recall my mother who died of suspected
Bowel Cancer six years ago. To watch some one so important
so loved waste away in front of you puts things in