until his son developed a rare form of liver cancer
that John discovered he had FAP
Like most things
in my life, finding out that I had FAP was not straightforward.
There were several hints, via my mother and brother,
but it was not until my son became ill with a statistically
linked illness and I had a second bowel check that it
was confirmed. One of the
interesting things about FAP is that the children of
FAP parents can have Hepatoblastoma (children's liver
cancer) more frequently than it happens to the general
population, it is very rare. But, that was the round
about way I found I had FAP.
My family history
is as follows. My mother died of bowel cancer at the
age of 58 in 1970. I developed a phobia of cancer and
read a lot about it and found that it was mainly lifestyle
and environmental, so I altered my diet, plenty of bran
and got on with life.
I got married
in 1979 and in the summer of 1985 my wife Fran was expecting
George. Also in the summer of 1985 my brother Edwin
then aged 40 was found to have polyps in his large bowel.
It was thought that it was FAP so I was checked the
day after his operation and given the all clear with
the suggestion that if I was clear so would our child
be. So again we got on with our life.
Later, two of Edwin's three children
were diagnosed as having FAP and have been monitored
since. Edwin was also diagnosed has having secondary
cancer. He finished work and was given 6 months to live.
Near the Christmas of 1989 Edwin was
admitted to hospital with a bowel blockage. The staff
wanted to know what was wrong with him and why he didn't
work. Unfortunately his notes had been lost so he told
them about the secondary tumour and they replied they
could not find any evidence of a tumour. Just after
Christmas he was put on the scanner and there was no
trace of a tumour! But his health was not good.
In the Spring
of 1992 we realised that George was poorly the symptoms
were similar to a virus, at the third visit by the GP
he was admitted to Derby Children's Hospital (DCH).
It was diagnosed as a tumour of some type within two
hours. He went on to have chemotherapy over three months
at Nottingham Queen's Medical Centre and the DCH. This
treatment shrunk the tumour but they were unable to
do the required operation to remove the tumour from
the liver because the tumour had grown around the portal
vein and had created lots of small veins to supply the
liver with blood - George would have haemorhaged to
The next port
of call was Birmingham Children's Hospital (BCH) where
he had a liver transplant in October 1993. This was
considered a success and George had several good full
years but in September 1997 he became tired and suffered
from back pain. This was put down to carrying his school
bag; in reality it was referred pain.
In January 1998
it was realised he had secondary tumours in his chest.
So we were sent to BCH again, George said," why?
You go there for cancer I have only got back pain"
He was his usual positive self and said "and if
it is cancer I will beat it"
After a failed
attempt m chemotherapy, when he was at deaths door with
liver failure he rallied but it was too late for the
next session of chemotherapy and the same thing could
have happened again. He now worked towards coming home
and eventually he became able to exist without the overnight
We brought him
home at the beginning of May. The weather was nice and
we were able to take George out for visits and especially
shopping. I called this stage 'retail therapy' it gave
him a lift.
We had a week's
holiday at Burnham-on-Sea courtesy of The James McDonald
Cancer Trust. George was still keeping us busy collecting
Dr. Who books and we visited Legoland.
At the beginning
of July we had a week at Aberystwyth with The
Christian Lewis Trust. By now he was slowing down
but enjoyed reading four new Star Wars books. He died
on Friday 24th July 1998 the last day of school term.
When George was
at Birmingham Children's Hospital for assessment, the
doctors, being aware of my family history, said I should
be investigated, as I should have FAP too. My age at
this time was 51. They took blood tests and looked at
the pigment at the back of my eye, then suggested a
flexible sigmoidoscopy, an inspection of my large bowel.
I behaved like
an Ostrich with its head in the sand and put this off
for as long as possible, but two months after George's
liver transplant I had to undergo the bowel inspection.
the surgeon said "I had better have a look at you"
In February 1993 I had an operation to remove my large
bowel and had an ileo-anal pouch installed. It has not
been perfect, possibly because the operation was done
in one stage. Another reason could have been my age
,51. One problem as I see it, is that you go into hospital
a healthy person. No matter how positive you are about
it, your body is different and you will never be quite
the same again.
the bowel on strike after the operation, I was well.
On the fifth day the bowel did start and an hour later
I was hoping it would stop, but it was 48 hours before
there was any respite. I was still very positive and
after 12 days got back home. I was still going to the
loo 25 times a day (it seemed to be mostly at night!).
After three months I reached a plateau of ten times
a day, where I seem to have stuck.
There are moments
when this can get you down. Thestress of all that happened
about George could have contributed to this higher rate
of loo visits. As I was a three-shift worker, I was
taken off the night shift, but working two afternoon
shifts and one morning shift every three weeks has not
contributed to giving one's life a regular rhythm. I
get very tired. I still cannot work out cause and effect
where food is concerned. And, just to make things more
interesting I had a mental aberration at work and broke
my left femur in October 1997.
More stress! Just as I was thinking about going back
to work, we found George had got his second cancer.
My occupational therapy was completed pushing his wheelchair
up the long corridors of Derby City Hospital. It was
like a wheeled Zimmer frame and George held my walking
Since the above
was written, I have retired and
also discovered psyllium husks fibre powder which has
improved my life considerably as long as I remember
to take it but it is generally not too long before the
penny drops! It has increased the time between loo visits
and reduced soreness (from the enzymes trying to dissolve
your skin) so I don't need creams anymore.
I have also found
that through helping at my sailing club on disabled
days (RYA Sailability) that my problems are not as bad
as I thought. One can only be encouraged by their enthusiasm.
have both had total colectomies and ileo rectal anastomosis.
They have both recover well, I guess it helps having
youth on your side.