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| EXPERIENCES
> Alan's Story :: A Story for Ryan > After the
Operation |
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Alan sadly passed away on the night
of 5 September 2004. He was a regular
poster on the Mouth Cancer message board.
His sister's and friends' final words
can be found here. |
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After being released on the 8th of October, I was
back in hospital two days later to remove the bandages
on my arm. My left arm had been the donor site for
the ‘flap’ that was used to replace
the cancerous site in mouth. It involved removing
an area of three square inches of skin and several
arteries to replace those that were removed in my
neck. A skin graft was also taken from the inside
of my forearm to cover the donor site.
I was back in the same room where I’d had
my biopsy months earlier. Jill was going to replace
my bandages. I’d previously tried to take
the bandages off just after coming out of the operation
so Jill had to take, what were in effect, two sets
off.
As Jill began to unravel the bandages, I could feel
myself getting hot and dizzy. When I saw my arm
without the bandages on that was when I blacked
out. I’d just fainted! Jill said I’d
fainted from the shock of seeing the dried blood
and mess that had been concealed. I was laid up
in bed and given plenty of fluids.
At home I was still eating soft foods; mash, soup,
gravy, ice cream or custard. I did this alone as
I was too embarrassed to eat in front of my parents.
My eating was slow and I compared myself to a baby
feeding, ending up with more on top and escaping
through the sides of my mouth. Still it was better
than having that gunk pumped through my nose!
I was still having community nurses visit me on
a daily basis to change the bandages and check on
the healing process.
I had arranged to meet Angela and Ryan at the Metro
Centre so that I could spend the afternoon with
Ryan. Whilst travelling with my sister and niece
to meet Ryan, I noticed my shirt was all wet and
sticky; I thought I was sweating a bit much for
an air-conditioned environment. Dashing in to the
lavatory I pulled my top off to find that one of
the scars on my neck had popped open and was weeping.
It wouldn’t be till much later that I would
find out how significant this moment would be!
My sister phoned Angela and explained what was happening.
Meantime I had asked for a first aider to help.
When she arrived she almost collapsed in shock.
An ambulance was called and the three of us were
whisked off to Newcastle Infirmary. Although the
consultant wasn’t worried, he said I’d
be better off being seen by my own Max-Fax team.
Back at the Metro Centre we finally linked up with
Angela for a brief conversation and apologies.
At Middlesbrough General, Professor Avery checked
it out and said it was ‘Synovial Fluid’.
He got the nurse to put on a fresh dressing before
sending me home. If I knew that was all that would
be done, I could have stayed at the Metro Centre.
The weeping wound was the main reason for the continuing
visits of the community nurses, to check on the
healing. Most of the time I was able to change the
bandage myself whenever it became too heavily soiled.
This got us on to the subject of me becoming a nurse,
in jest.
My speech was improving all the time, mainly thanks
to Shannon who kept me on a thorough routine of
exercises and continual assessment. My eating was
also getting better; I was able to progress at a
rapid rate and start eating more solid food.
The scars on my arm and chest could easily be covered.
The one on my neck was not so easily hidden. The
scar went from my lips, under my chin and upwards
behind my ear in a sweeping movement.
The other scar that was not visible was the mental
scar. The continous staring from strangers and the
constant visits from nurses was, in a way, reminding
me of my time in hospital. It was late November
and I hadn’t been to work in almost eight
weeks. I wasn’t sleeping properly, possibly
through anxiety. My doctor prescribed sleepers,
which were great but I’d wake up at two in
the morning. So we upped the dosage and saw some
improvement.
The number of times I held a bottle of tablets and
seriously considered taking the whole bottle was
unbelievable! But a photo of Ryan looking at me
prevented me from doing so, how could I rob Ryan
of a father? He had done nothing wrong.
I was only 34 and I’d had oral cancer! Oral
cancer is mainly associated with heavy smokers/drinkers
and also people who were much older than me.
I had arranged with Angela for Ryan to stay for
a visit. I’d been in hospital when he’d
had his 4th birthday and had not had him visit till
just before I was in hospital. He knew his Dad had
a poorly arm and neck. He was more curious than
frightened.
When the nurses visited, Ryan helped out. He knew
every dressing and bandage used and in what order
to apply them. To him my arm was sore and my neck
poorly. How simple could it be? If only it was.
Ryan had been involved in a lot of visits to see
my specialists, which on many occasions had broken
up the seriousness of the visit. During one visit
to Shannon, my voice was taped as a reference point.
After reading a paragraph, Ryan who had been stuffing
his face with juice and biscuits suddenly burped!
Playing the tape back put us all in hysterics!
One of my biggest breakthroughs was to eat out in
public again. I didn’t really have much choice
in the matter. On taking Ryan back, I met Angela
at the Metro Centre and she dragged me into a restaurant.
I’d been self conscious of eating in public
as I ate slow and deliberate so as not to have any
problems. Although Angela had said no one was watching,
I could feel as though they were and could only
eat half my meal. Still, it was a start.
December brought another specialist, a physiotherapist
who was a similar age to myself. The treatment helped
regain movement in my arm that had been lost following
surgery and also improved my stature.
New Year saw a new medication. I’d been feeling
down for some time now and was doing a poor job
hiding it! Angela said she’d noticed it for
sometime and tried telling me several times but
I’d never taken the hint. A lot of people
take ‘Prozac’ because they feel depressed,
whether they’re unhappy about jobs or relationships.
I didn’t want to be seen as jumping on the
bandwagon; I wouldn’t say I was pushed onto
them, merely advised by three medical professionals.
My visits to Shannon & my physio continued and
progress was made; well enough for Shannon to almost
end my treatment.
During a check-up at the max-fax clinic, it was
mentioned that I had a legion on my tongue, perhaps
from being bitten but nothing to worry about.
I’d started making plans to go to college
in preparation to go to university so that I could
study to be a nurse. Nothing was going to stop me,
or so I thought.
It was now near the end of February and I was back
at the clinic for another check-up.
“Can we have you back in for another biopsy
Alan?” said the SHO
Sure nothing to worry about, just a precautionary
to remove a doubt they had. The biopsy was more
like an operation this time; gown, paper knickers
and into theatre.
Before my biopsy Jill came to see me. We spent half
an hour laughing and joking, which helped ease the
tension somewhat. Mark the SHO said “There’s
nothing to worry about, just routine.”
Before giving me an injection that would freeze
any sensation in my mouth Mark said, “This
stuff tastes foul!” Foul isn’t the word
I’d use to describe it! If it weren’t
for a quick thinking nurse who produced a sick bowl
from no-where, I would have spat it across the theatre
floor.
March 11th, two weeks later, I was back at the clinic.
Professor Avery was running late, almost 2 hours
behind. As I walked in, there was a lot of familiar
faces kicking their heels. Still I thought nothing
of it. Prof. Avery got straight to the point
“I’m afraid you’ve got cancer
again!” He continued to talk about it as I
laughed nervously; it couldn’t be true. “I’ve
plans you can’t do this to me!”, I thought.
The cancer had been so aggressive, that it had travelled
further than anticipated in the initial diagnosis
and, unfortunately, the original surgery had only
removed the underestimated infected region.
The announcement had hit me harder the second time.
As I left, Jill had asked me if I was alright. I
answered I was OK but then burst into tears. Jill
ushered me into a side room and convinced me that
there was no harm in crying. She explained various
routines that I might have to go through and why
the cancer was still there.
Two days later, I was at college for my interview.
I had to tell them that I was due for another operation
and the interviewer suggested that I should do the
course part time, in case treatment was needed.
College was to start in September and I WAS going
to be there!
The following day was another CT Scan. In an attempt
to hide the scars on my neck, I’d grown a
beard but it just seemed to highlight them. The
bonus was that once I’d put a hat and sunglasses
on, no-one could recognise me!
I met the consultant surgeon Mr Edge the following
week. He had been part of the original team; Prof.
Avery had called him in for a second opinion. Mr
Edge had confirmed what we already knew and checked
the scan results. He also said that the scar that
had popped open might have been a significant indicator
that cancer had returned!
I was due in hospital on Friday 28th March but Prof.
Avery said I could return on the 30th, which would
allow me to have Ryan visit the week before. However,
I still went in on the Friday to get as much, as
possible, done in preparation for the operation.
The cancer had been more aggressive than had been
thought and had entered the lower jawbone. So although
the operations had similarities, the main differences
would be to remove the jawbone and replace it with
a section from my forearm. With the removal of the
best part of my jawbone, I would also lose a fair
few teeth; this would impair my eating and speech
further.
A week or so after my operation I had a visit from
Prof. Avery and the look on his face was serious!
A sample had been taken from part of my jawbone
that had not been removed, this was sent to make
sure all was well. Clearly, it wasn’t!
“Alan, tests from the pathologists have come
back, and I’m afraid it’s positive.
You still have cancer!”
With a sense of uneasiness the Professor switched
to questions about my immune system and why I was
so susceptible.
“Have you ever been in contact with someone
who is HIV positive, or do you have it?”
Not only had the Professor have to tell me I had
cancer three times, but also the unenviable task
of enquiring about whether I was HIV positive as
well. I certainly wouldn’t want to be in his
shoes.
It would take a further eight weeks to have the
results checked out. In the meantime I had the cast
on my arm replaced four times and I hadn’t
left the hospital yet!
Eating was also more difficult, so it was arranged
to have a PEG fitted so that I could have that delicious
gunk Jevity pumped directly into my stomach!
When the results finally came back from the pathologist’s,
it was good news. On the original test, they had
accidentally tested on the jawbone that had been
removed and already known to be cancerous. They
had actually made a mistake!
It hadn’t really sunk in that I had had cancer
for the third time, so I can’t really say
if I was relieved to find out that I didn’t
actually have it again. But now I had to start living
my life again! My next goal was college and that
was in September!
The main reason that I wrote about my experiences
was so that when my son Ryan grows up, he can better
understand what happened to his Daddy. It was also
written so in case I wasn’t around when he
grew up, it would help Angela explain what had happened
to me and why Ryan no longer had a Daddy. I’ve
always used the title ‘A story for Ryan’
in typing up my experiences and would like it to
be continually known as that.
Regards
Alan
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Alan sadly passed away on the
night of 5 September 2004. He
was a regular poster on the Mouth
Cancer message board. His sister's
and friends' final words can be
found here. |
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