Familial Adenomatous Polyposis, or
FAP for short, has helped to save my life and reunite
me with my daughter who I gave up for adoption 38 years
I was 5 years old when I visited St.Mark's
Hospital in London and introduced to the first of many
rectal examinations - a sygmoidoscopy. My memories of
that day are vivid, being held down by a nurse and my
weeping Mum. No-one explained why - perhaps they didn't
think I'd understand. A simple blood test is done nowadays,
which uses the technique of genetic fingerprinting,
and the test is done when you are older.
Memories of my Mum are precious - her
bedroom was the focal point in the home. Although I
was very young, I knew she had an ileostomy. Knowledge
of FAP was much more limited 50 years ago, and she must
have been in a lot of pain, however she was always laughing
and cuddling my brother and me. Sadly she died in August
1952 - I was just six, and my brother 2 years old. She
also had three brothers, two of whom were affected by
FAP as well.
After she died, Dad and I moved in
with one of his sisters, and my brother with another
sister, two minutes walk away. I became a 'latch-key'
kid - things settled into a routine, then Dad dropped
a bombshell. He remarried in April 1953, eight months
after our Mum had died. Here ended my childhood. We
moved to Birmingham, I never saw any family again for
years, even my dog was put to sleep. Any mention about
my real Mum was dealt with via icy stares. I was to
be seen and not heard - cuddles with my Dad were over,
their bedroom was banned. I took solace in my stepmother's
older sister - she was like a mother to me, BUT, she
would not tell me about my Mum.
Years passed, and to everyone's horror
I became pregnant. I had to hide in my room when visitors
came, my parents were churchgoers and lied to everyone,
they were so ashamed of me. I unfortunately became quite
rebellious, proud of what I'd done - I was about to
have something I could love and would hopefully love
me in return. Alas I was sent to a mother and baby home
near Reading - I was then seven months pregnant. I had
my baby girl on 17th January 1966. I was 19 years old
with nowhere to go. I breastfed her for six weeks and
then she went to her new parents - I was heartbroken.
I went back home but couldn't settle, so I returned
to work at the mother and baby home. I tried my best
to support the girls when their babies went, and it
also helped me to adjust.
I eventually received a letter from
St.Mark's Hospital - they had traced me and needed to
see me regarding my late mother's illness. 'What were
they on about?' I thought. I caught the train home and
confronted my parents. They were very cagey, I had no
help from them - 'it was in the past', they both said.
I went to St.Mark's on my own. After
months of tests it was proved I had FAP. I gave them
all the details of my daughter (Sue) and prayed they
would find her.
A few more years passed. I married
my husband in 1969, had my first operation in 1974 -
total colectomy and ileo-rectal anastomosis, visiting
the hospital regularly. We wanted a child, but I miscarried
three times, however I eventually had my son Andrew
in 1980. I gave him the childhood I missed - he grew
up with FAP but it never seemed to worry him. Andrew's
blood was tested when he was around 15 years old - he
is clear and can never pass it on.
Four years ago I had a phone call from
the polyposis unit at St.Mark's Hospital - to cut a
long story short they had contacted my daughter several
years before, she had already had her operation (ileo-anal
anastomosis) and felt it about time we met. It was wonderful
- we all get on so well, I have even met her parents
who thanked me for what I did. She, thank God, had a
normal childhood. She has inherited so many of my ways
- we sit the same, like the same food, colours, etc.
Last Christmas I bought her a mauve top and she had
done the same for me - it's weird sometimes! I have
two grandsons from her - I pray they will be OK - only
time will tell.
FAP has a strong hold on me. In January
2001 I has a pancreatic-duodectomy operation, a 'Whipples'
* for short, due to polyps turning nasty in the duodenum.
Only a few people have this problem - I'm one of them.
It wasn't nice but I got over it, as always, then another
bombshell - in March 2002 I had the dreaded operation,
a total proctocolectomy resulting in a permanent ileostomy,
and I hate it. I don't think I will ever come to terms
with 'Percy'. But FAP did me another favour, for during
all my scans before this operation they found I had
ovarian cancer, which can lie undetected for ages. The
surgeons dealt with it all at the same time, it was
a very long operation.
I have since had six months chemotherapy
and five weeks radiotherapy, the latter knocking the
stuffing out of me. I went back to St.Mark's recently
for a gastric swallow as 'Percy' blocks now and then,
which they tell me may be due to intermittent kinking.
I am now 57 years old and owe my life to St.Mark's Hospital
- everyone there has been so good to me, it's been home
from home. Above all they are honest with me. How do
I get through it all? I laugh things away, just like
my real mother did, bless her.
Since the article was written Chris
has had two further operations. A radical resection
and refashioned stoma end march 2008, radical nephrectomy
Finally in her
words May 2008 - Still suffering, but what the heck
I am alive.
* Whipple's Disease
- named after George Hoyt Whipple, American pathologist
- an enteropathic arthropathy, also know as intestinal
lipodystrophy, possibly related to a bacterial infection.
- Chris would like to make contact with others who suffer
from FAP, particularly in her own area (Reading).
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