I am a 44 year-old male living in London.
My name is David but when I say it over the phone,
people mishear it as Mavis. So instead, I use my
middle name, Paul.
On 10th November 2001,
I had an operation for mouth and neck cancer
at the Middlesex Hospital London to whom I
will always be eternally thankful, especially
to the wonderful receptionist, nurses, doctors
and a cancer nurse called Maggie. I also owe
thanks to Eric and DIAP for both of their
on going support. Looking back, I do not blame
anyone but it did take some time for me to
eventually reach the Maxillofacial Unit at
the Middlesex Hospital.
The days before 10th November 2001 seem quite
irrelevant now. The start of 2001 was the
year that I felt my life got better and better.
My previous occupation was in catering and
I had found voluntary work as a Disability
Advisor for a local charity and really enjoyed
helping people with their physical and mental
problems. It was very rewarding!
However, I was having problems like anyone
else, albeit suffering from panic attacks
and agro-phobia due to being attacked twice
within a space of a few months; first on the
street where I lived and the second outside
Angel Tube station. |
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[Photo: Before Cancer Surgery] |
[Photo: After Cancer Surgery] |
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MY SORE SPOT
My GP Dr Bloor is excellent. I had been
seeing her for a few months with a small
white sore at the bottom of my mouth. Her
diagnosis was some kind of infection and
I was put on several kinds of tablets. This
went on for some time until I had a routine
check up with my dentist, who asked me about
the lump and subsequently made an appointment
for me to go to the Whittington hospital
for a biopsy. I just thought “No,
this couldn’t happen to me at my age.
My life had just begun!”
Well, I went to the hospital and had to
wait for a week for the biopsy result. They
said I was clear and I wasn’t given
another appointment to check again! I did
not think anything of it at the time but
obviously I do now. I came away feeling
“Yes, this is my time and everything
is going really well!”
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I booked a holiday with my friend for the first
2 weeks in October 2001. The holiday to Corfu was
going well. It was a nice place and my second visit
so I felt at home there.
But the day before we were leaving and I felt lumps
in my neck and, my God, was I scared! I do not remember
flying home.
The next day my friend phoned Whittington hospital
and was surprisingly told that the unit had closed
down and that he should phone the Eastman’s
Dental Hospital, who then told him to phone the
Maxillofacial Unit at UCH. I was told to see them
straight away.
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MAXILLOFACIAL UNIT
When I arrived at the Maxillofacial Unit
at UCH, I was put in a chair with doctors
coming in and out. One guy had a camera
and I was so frightened.
I was then told to go for an x-ray and return
in a week’s time for the results.
By this time I was convinced it was cancer,
especially when I was told “bring
someone with you”.
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[Photo: My best friend, Fresca] |
SHOCK
The dreaded day came and I was in a state because
I knew the result before Dr Newman confirmed that
it was indeed cancer. I was in shock and all I
could think of was that I was going to die. I
never thought about the surgery and treatment
that I would soon have to undergo.
OPERATION
The day finally came for me to visit Middlesex
hospital for my operation. I do not remember much
about ITU, only that I was being monitored every
few minutes and that Eric, Irmi and Laurie came
to visit me.
My nightmare of an operation went as follows:
- Tube inserted in throat (Tracheotomy)
- Removal of cancer from the floor of my mouth
leaving a hole
- Skin graft & vein taken from my arm to
cover the hole in my mouth (free flap)
- Incision around my throat from ear to ear
(Bilateral Neck Dissection) leaving a scar
- Skin graft from stomach to wrist to cover
hole
The next thing I knew, I was waking up in the
ward and I could not and dared not move an inch.
The operation was a bit painful with stitches,
staples and drips all over but the treatment I
received from both doctors and nurses were nothing
short of first class. My main problem was boredom
and not being able to speak at all.
On Tuesdays, I would be wheeled away to the Maxillofacial
Clinic, where I had had my biopsy, to see Dr Newman
and his nurses. They took me into a room and sat
me in a chair with a doctor whom I jokingly call
the “Butcher of Westminster”. He placed
two needles in my mouth and cut off a part of
my tongue, which had gone black. I did not feel
a thing and the only time I really noticed any
difference was months later when my mouth was
getting back to normal; I found my speech was
permanently impaired.
CHRISTMAS
I came home for Christmas and we sat around the
table for lunch. My meal arrived as “a mess
on a plate” but I did manage to eat it with
a teaspoon, which was and, still, is the only
way I know of being able to get my food in my
mouth and down the hole.
RADIOTHERAPY
It was soon the 2nd of January 2002 and I had
my first radiotherapy session; I only had 34 more
to go. I stayed alone in my flat from Mondays
to Fridays during my radiotherapy sessions because
my home was nearer to the hospital. However, weekends
were spent at my friend’s place.
Radiotherapy was pure hell as I was so weak and
tired all the time. I was living on Ensure inserted
through my peg. I had lost 2.5 stones and was
very thin. I am ashamed to say that I was not
very pleasant towards the nurses in Radiotherapy
to whom I must apologize. But all my neck and
mouth was swollen and burnt, my lips were also
sore and I felt terrible. They would force this
mask on my face even though it would not fit.
They would then screw it down and I could not
tell them, which made me angry.
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[Photo: Tunsia, March 2003 after radiotherapy.
Paul is cutting up his food before using a
teaspoon to eat the food.] |
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INDIA
I traveled to India in December 2002
and when I attended my next monthly checkup
at the Maxillofacial Unit, my Speech therapist
approached me saying “Hi Paul. How was
your holiday? You look well and a nice tan.”
The lady in the waiting room joked, “Don’t
be awful to him the Radiotherapy has done
that!”
18 MONTHS ON
Well, now it has been 18 months or so with
a lot of ups and downs. I am sure it is very
difficult for my GP, Dr Bloor, and my nurse,
Martin, to know what to do with me. They really
try their best but my depression and my lack
of confidence is the key to all my present
problems. |
Basically, I feel like I am in another world looking
out. I think I look as I feel, like a giraffe! And
I’m also scared of being attacked again out
on the street. I am showing my photos to prove that
I am not paranoid. I did lose my looks.
Besides my looks, there are other things
I do not like about my situation:
- Being shouted since I am not deaf
- Being stared at in restaurants
- My lack of physical strength and vitality
- Impatient people who will not take the time
to listen
- Having to think extremely carefully before
speaking so that I can simplify my spoken words
and ensure that I can be understood
- I have given up talking in public now and
I am fed up with comments like “You tell
me how he is, I cannot understand him”
or “Is he getting any better?” or
“What did he say?” or “Does
he want chips?” It has happened so many
times that I am now fed up of it. It frustrates
me because I feel like snapping back “I
am here mate and I can speak for myself! If
you listened you would hear me!”
- Some issues include finance or insurance problems.
I would consider talking about this privately
by mail to anyone who needs help in this area.
I do understand that it is difficult for people.
They hear the word “cancer” and they
immediately think “My God, he’s dying!”
I try to make eye contact with people to improve
communication but when I do speak, I can see it
in their eyes that they’re thinking, “What’s
going on here? What’s wrong with him?”
DREAD
I have this view that I have had the cancer
and it will come back one day. I had another
biopsy a few weeks ago where they found another
lump in the floor of my mouth. It was the
first time ever that I actually cried, as
I thought that the cancer was just going to
keep coming back to haunt me. When the doctor
says, “Don't worry” then I start
to worry! What a nerve wrecking seven days
it was, waiting for the biopsy result. Thankfully
the biopsy was clear but still, my God, the
wait… the wait! |
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[Photo: Anjuna Market, India] |
[Photo: Beach, India]
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I do think that I am lucky in all
sorts of ways. To be alive is one and I do
have a good life. It is just finding
that one thing that will send me back out
into the world with a positive attitude. Please
email me with your suggestions!
I would like to hear from anyone who has been
going through a rough time or wants to chat.
If you are reading this because you have some
trauma in your life, I wish you well.
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FEEDING
Looking back, I was on Ensure for 8 months. I must
have the most traveled boxes of ensure ever. I started
to eat things like omelets but now I eat most things.
However, I'm not keen on meat as it is too difficult.
I do get asked, “How do you get your food
down?” Well, I put one spoonful in my mouth
and then use the next spoonful to send it down.
I do this until I finish my meal and then wash the
last lot down with water!
SIGNS I DIDN'T NOTICE
I was 10.5 stones in the summer of 2001
when I decided to go on a diet to lose my flab.
I lived off salad and went to the gym once a week.
I thought I was doing well and I was going through
the "I must go to the theatre more" phase.
But I fell asleep at every show and would always
go to bed after work. I never linked these events
until a long time afterwards.
BACK AGAIN?
It was early June 2003 and I went
for my monthly check up. I waited happily
talking to a fellow patient while waiting
for my turn to go up to the Maxillofacial
Clinic. I was in a good mood after just returning
from France and Belgium with my mates the
previous day.
I saw Dr Newman who examined me and said that
my lump, which had scared me a few weeks ago
but was later cleared following a biopsy,
had grown and was now inflamed. |
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[Photo: Calangute Beach, India] |
[Photo: Candolin Beach, India] |
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He asked Mr Calavares, another
excellent doctor, to have a look and they
said that I would have to have another biopsy.
Mr Newman seemed to think that the cancer
had returned but, of course, you cannot be
sure until the biopsy is done. But I felt,
by the way that I was spoken to, that the
bloody cancer had come back.
I felt frightened...
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I was angry
because I was just getting myself together
with the excellent support of the Maxillofacial
staff, Maggie, Martin (my nurse) and Dr Bloor
(my GP) and it now seemed that it was all
for nothing!
It is now Thursday 19th June 2003.
I got my result from the Biopsy and it was
ok but I have to go back in another month.
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[Photo: Skiathos May 2003] |
RUSSIAN ROULETTE
Getting over the last few days has been a mental
torture! You do not know what to feel and people
do not know what to say, as it is a kind of a
limbo situation. I look at it as a game of Russian
Roulette; will the "cancer gun" fire
or not?
Well I am glad to say that I am now getting back
to normal and I wish to give many thanks to Eric,
Simone and Mike for their support.
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