The colonoscopy was performed on July 4, 2003 and some days later when
the
biopsy results were available, Dr John Freiman diagnosed
Ademo-carcinoma in the
rectum. Bluntly put, Cancer. Why me??? I ate my crusts and Brussels
Sprouts
when I was a kid! I was then told that surgery was indicated urgently.
Colorectal specialist Dr Shevy Perera saw me that same day and then
arranged
the surgery for 4 days later. A very long 4 days.
I entered the St George Private Hospital and my private room on July
15,
2003.The room was very nice, with a sweeping view from the large window
and
looked out over Botany Bay and Sydney Airport and across the other side
of the
bay to Kurnell. Stomal Therapy Nurse Sister Vicki Patton came in to
see me and
explained the forthcoming procedure and what I could expect to see
after the
operation. She also introduced me to the Colostomy appliance that was
to
become a part of me for the rest of my life. I must say that I was not
particularly happy about this appliance thing and as I write this, even
less
so. However Vicki is very nice and gradually worked on my lack of
enthusiasm
for a procedure and device which is, I came to realise, indeed
lifesaving.
Lifesaving it is as the result of an ignored or unattended cancer is
well
known. Therefore I had to knuckle down and accept the situation as
such but at
times I still find that hard to do.
Dr. Perera performed the Abdomino Perineal Resection (or Colostomy).
The
following days were misery personified. I was sore, bleeding, and had
tubes
hanging out of me in the most embarrassing of places. I also had a new
bright
red thing on my abdomen, which was described to me as a STOMA a Greek
word
meaning Mouth. Mouth? Does not seem altogether appropriate to me.
The Stoma
is bright red because it is in fact the bowel itself. I soon learned
that one
has to be very gentle with the Stoma as it can be made to bleed easily.
It
possesses no sensation due to a lack of nerves so I could not know when
it
would pass faeces, and I have no control due to no longer having
Sphincter
Muscles that are normally in the rectum.
Another problem was soon apparent. I have a lot of body hair, all
over. This
was a real nuisance to the nurses who had to apply and remove adhesive
plasters
and heart monitor sensors to various parts of my body. Because the
appliance
has a large adhesive pad I began to shave the area around the Stoma to
facilitate removal of the appliance a little more readily. Also, the
risk of
infection of the follicles from "ripping the hair out" is real given
the matter
in that vacinity. It quickly became apparent that shaving could be
damaging to
the Stoma if touched with a razor blade. The answer was a
Mustache/beard
Clipper! This is a small hair clipper, rechargeable and at a low cost
from our
nearby department store. Perfect for the job.
All of the lovely young ladies, nurses, who entered my room seemed to
want to
look at either the Stoma or the stitched area where my rectum and anus
used to
be. I should have sold tickets! I have always been an old fashioned
private
person and certainly not used to exhibiting such parts of my anatomy to
young
ladies.
After the operation, Dr. Perera visited and advised that with the
removal of
the rectum and anus, the whole cancer was removed. The good news being
that it
had not spread to the liver that is usually the first organ to be
affected.
However, the cancer had spread to the lymph nodes although only one of
the
twenty-three removed was affected. The next news was that to be sure
of the
best possible end result, chemotherapy and radiation therapy was
advisable.
My first shower after the operation was the next morning and by my
request.
This proved to be a difficult and painful experience. I enjoy my hot
shower
and didn’t want to miss out on it. So, with a nurse assisting, I had
my shower
and added a further loss of dignity! I find it very difficult to stand
in my
naked form in front of young ladies. After all, being a 70 year old
and
heavier than I should be, coupled with the range of drain tubes,
catheter and
nosagastric tubes and their associated bags and contents along with the
IV
machine didn’t make me a pretty sight. However, I still enjoyed the hot
water
and its therapeutic effect anyway!
That same morning the physiotherapist arrived and we went for a very
short
walk. Now that was hard. My abdomen was cut and stapled from the
navel to the
genitals and from that small area behind the genitals up to the point
near the
coxic where the anus had been removed. Walking was the last thing I
wanted to
do. However, we walked. I discovered that Physio’s will not take
"forget it"
as an answer. I will admit though walking is essential to get the
muscles
working again and prevent blood clots. Surely tomorrow would not have
been too
late?
Of course no procedure would be complete without the IV drip being
administered
via a Canula inserted into a vein on the back of one hand. The machine
that
controlled the drip rate had a nasty habit of calling for attention
throughout
the day and night. I was not sleeping well so the beep beep beeps at
night
were somewhat unwelcome. The saving grace though was that the night
view from
my window was spectacular and very soothing.
Meal time. Oh dear, that awful watery broth and very little else did
improve
my waistline a bit, but certainly did nothing for my taste buds.
Finally,
after a week, I was given some full tasty meals. Then later that same
day
vomiting began due to a bowel obstruction. The nosagastric tube was
inserted
again and periodic checks were made of the contents of my stomach.
This
invasive device is a hard clear plastic tube that is fed up through the
nose
and down into the stomach. At least it did on the second attempt, the
first
saw it go down the windpipe instead, was withdrawn and inserted again.
It is a
horrible experience and makes the throat and rear of the nose very
painful. At
various times a syringe is plugged on to the end and samples of the
stomach
contents taken. This happened three times during my stay although the
tube
entered my windpipe only the one occasion.
Vicki visited me a number of times and I soon came to appreciate her
calming
approach to my new Stoma and the awful things it does. Not only does
it
discharge faeces but it makes noises too. I was shown the various
styles of
bags or appliances as I prefer to call them, and she assisted me no end
to come
to terms with my new method of "going to the toilet".
Finally the drain tubes were removed and the staples that held my
abdomen
together unclipped. Then along came a delightful young nurse who I had
known
for most of her life, and removed the catheter. Wow! embarrassment
reigned
supreme! She had with her a young and conscientious University trainee
so I
was under close inspection again!
Dr. Paul De Souza visited me and we discussed at length the
chemotherapy
procedure, the reasons for it and the possible and probable side
effects along
with a starting date. He also explained that my cancer was a "Dukes
group C" so
I needed to accept every advantage that was available.
I was discharged from the hospital with mixed feelings. While I wanted
to be
home with my wife of 40 years, the hospital represented safety or
instant
attention if things went wrong. After all, things were going wrong,
one after
the other. So, on the 15th day, I went home having been there longer
than the
usual eight or nine days.
Vicky had placed my first order for the appliances that I was going to
need and
these were waiting for me when I arrived home. Even though I practiced
applying
these under Vicki’s expert supervision, I still got a couple wrong and
DISASTER! Oooh! what a mess! I have learned from those mistakes
however and
the system works for me now.
The appliance always seems to need changing at the most inconvenient
times.
When I undress for a shower and remove the appliance the Stoma would
sometimes
choose to begin discharging faeces and if I am not careful or prepared
for it,
the faeces falls where I stand. Remember that there are no longer any
controlling sphincter muscles. I have worked that problem out now and
make
sure that while the appliance is off I provide for it although the
activity can
be tricky while drying oneself with a towel!
There is a method of controlling this, Irrigation. Having seen a video
instruction program on how it is done I came to the conclusion that I
needed
help and advice from Vicki so I had the process demonstrated to me
while in
hospital the following December (due to yet another bowel obstruction).
The
process is simple enough and gives up to 48 hours of freedom from Stoma
activity thus giving a very acceptable measure of control.
The appliances, also known as pouches or simply as bags, are very well
made and
surprisingly are available free on our health care system through the
Ostomy
Association. (I have found that the Association has a large number of
volunteers and their service to us is nothing short of superb). Vicki
also
arranged my first membership at the same time. I really cannot imagine
what I
would have done without Vicki; there was so much I needed to know.
Chemotherapy started in August and continued until the end of February.
I had
heard many discouraging stories about the subject, though I have since
found
that the few side effects are uncomfortable but with the exception of
the two
days immediately after, have not overly effected me. The worst effects
are the
feeling of nausea, mainly the following day, and that excruciating
tiredness.
There are some other more subtle effects, I have lost some feeling
sensitivity
in my fingers and on the day after the Chemotherapy my teeth feel kind
of
loose. I have not lost much hair, although it’s growth slowed right
down and I
saved on haircuts!
The Chemotherapy system seems simple enough, a Nursing Sister took me
into a
room where comfortable arm chairs line the walls. I sit in one of
these and a
Saline Drip was set up through a Canula in the back of one hand. The
first IV
drug is Folinic Acid and its function is to open up the cells to accept
the
Fluorouracil (5FU) which is administered around 20 minutes later.
Fluorouracil
(5FU) is the chemotherapy drug used in my particular case. Almost
immediately I
had a strong metallic taste in my mouth but otherwise there was no
other
reaction until later in the day. Fatigue followed by nausea for the
first
afternoon and the following day is probably the worst reaction and the
nausea
can be controlled, by taking a Maxolon tablet. Usually the side
effects have
eased in two to three days. The Nursing staff in the Chemotherapy
department
are a wonderful group, caring and pleasant and made that aspect of my
treatment
so much easier to take.
During the early stages of Chemotherapy a new problem appeared. I went
to see
Dr Perera thinking that some problem had arisen from the bowel
operation during
which the Anus Rectum and a part of the Colon had been removed. Dr
Perera then
referred me to Dr Paul Cozzi, a prominent Urologist. It was my
Prostate! All
I needed right now! After a painful period that saw me being invaded
with a
Flexoscope through the Penis. Enlargement was the verdict but not
cancer.
That was a break at least. However, a sign of more surgery after the
Chemotherapy and Radiation treatments have finished. In the meantime,
the
function is controlled using "Flowmax" capsules. The worst part of
this is
that the Radiation Therapy will accelerate the Prostate problem and it
will be
a race to complete the treatment and have the operation, which the
Surgeon
succinctly put it to me as, "a re-bore."
Radiation treatment began on January 6, 2004. 28 treatments performed
on a 9
day fortnight basis. Every second Monday was a "lay day" due to
maintenance on
the Linear Accelerator.
The system here is different to any medical procedures that I have
encountered
before. Quite frankly the people who operate the Cancer Care Centre at
St
George Hospital are remarkable indeed. From the receptionist Ladies
who sit
behind the big horseshoe desk and mark us off as we enter the building
amongst
other duties, to the Nurses, Dieticians, Clinical Psychologist, and
volunteer
ladies we experience a pleasant greeting with a smile and calming
attitude.
Even the patients waiting for their turn for treatment seem to have
empathy for
each other making the whole episode almost a "club atmosphere".
The therapy did leave me tired too and towards the end, skin burning
and
especially so when changed to a different Linear Accelerator with three
sessions to go. The emissions from the machine are in the X-Ray
spectrum but
rather much stronger that a normal X-Ray that we are used to. The
planning is
careful and thorough as is the treatment itself. Performed by a group
of
Radiation Therapists, their cheerful courtesy is very calming in what
could be
a frightening experience for some. They are a special group of people.
With Radiation Treatment completed, I am able to treat the burned
skin. The
genitals suffered most due to the sensitive nature of these organs.
The area
between the two cheeks of my bottom where the surgery had taken place
became
red raw and very painful making sitting undesirable and walking rather
less
than pleasant. The radiated area was treated twice daily with
"Sorbaline" a
moisturising Lotion but now that the radiation is finished other
appropriate
treatments were employed. The Prostate too is badly affected and will
probably
require some surgery to "make it right".
The Radiation treatment consisted of 25 sessions on one type of Linear
Accelerator and three sessions on another with a very much stronger
beam but
more concentrated in area.
Looking back, even though I still have difficulty coming to terms with
the way
in which my natural function has been altered. I am more than grateful
for the
expertise and courtesy of all of these people from the Surgeons,
Nurses,
Radiologists, Physio’s, Psychologist adviser, Dietician, Kitchen staff
plus
those who I don’t know about, for their part in extending my life. A
life
which, without their efforts, would undoubtedly have ended very much
sooner
than we have come to expect.
I am compelled, at this point, pay tribute too to my Wife . Without
Beverley’s
loving support and where needed assistance, I would never have survived
to this
point. It is not easy to have one’s near life long spouse so very ill
and so
many times and have that helpless feeling, sitting, watching, hoping.
Whether
or not it is justified, the very word Cancer conjures up a traumatic
reaction
of it’s own in many of us. We are a close couple and being so close
does make
these situations that much harder to accept. Now that my treatment has
finished, I realise that there is a life after Cancer, and If I take
care of
myself and attend the various annual check visits to my Doctors, then I
can
look forward to the life span that I had always expected.
In my opening paragraph I mentioned the word terror.
While this is true, I am not frightened at the thought of death, heaven
knows
that I have been close enough in times past, but I cannot bear to think
about
what I will miss out on after my time is up!
However, life is too short to sit and ponder over negative thoughts, I
have to
get back to where I left off cancer notwithstanding. The surgical team
removed
it all and with the added insurance of chemotherapy and radiation
oncology I
believe that I can look forward to many more years yet. After all of
the
expertise and technology that has given me so much, it is unthinkable
that I do
not do my part with positive thought and actions.
My hope is that you, the reader of my story, never have to experience
any of
this. There is nothing in the world more valuable than good health.
However,
if you do happen to be a cancer patient, keep your chin up, there are
better
times ahead.
In May and June this year we toured UK, Republic of Ireland, Europe and
then
went on to Calgary Canada to vist our eldest daughter who lives there
permanently. Beverley, my Wife, Best Friend and Soul Mate, decided
that we
would have this trip together now because cancer is unpredictable and
she
didn't know how much longer she would have me. Well, we had a
fantastic time
albeit very difficult for me. Beverley assisted me tremedously as did
the
other travellers on our coaches. There are very nice people around.
Many of
these special people we simply call nurses. Angels would be closer to
the mark
as you would know only too well.
Would you like to publish your story on the site?
Contact me by clicking here.