Paul
Paul, diagnosed in 2006 with inoperable adenosquamous cell
carcinoma of the pancreas, rendered operable by chemotherapy and
chemo-radiotherapy. Underwent total pancreatectomy
I'm Paul Morris, aged 57. I'm married
with two daughters (19 & 17) and two stepsons (21 and 26). I
live in Nottinghamshire and for the 31 years up to 2006
worked for a multinational computer manufacturer. I have
generally been fit and healthy, not smoked and drink
socially.
Life was good but extremely stressful at work. I was a Business
Operations Manager responsible for the sales, revenue and profit
achievement of my division. Long hours, constant pressure and
stress. Generally I was coping well I thought.
Around February 2006 I started to feel like I had
indigestion or mild heartburn. I let it ride for a week or two then
spoke to a pharmacist at Boots and got some Gaviscon and Zantac.
Took these for a few days but they didn't make a difference. I had
also lost about 8lb and noticed my appetite was slightly
'off'.
Thursday 30th March 2006 - I noticed blood while wiping after
going to the toilet. Dark coloured not bright so I knew it was
coming from somewhere inside. I was concerned but thought I would
see what happened over the next 24hrs. The next time I went to the
toilet on the Friday was the same. OK, mild concern rising! On
Saturday 1st April (some Fools' Day!!) I called NHS Direct. They
went through their questions and once I mentioned blood they said I
should go to A&E. Well, most of us know the queue lengths so I
decided to call the out-of- hours GP service, they also decided
that I should see the duty GP at the hospital. The GP took my
history and performed a rectal examination. She told me that I was
to be admitted straight away to Nottingham City Hospital with
suspected stomach ulcer which could be about to perforate. OK,
tricky but not serious!!
Diagnosis 'bombshell'
I was admitted onto the EAU (Emergency Admissions Unit) where
they took a full history, bloods, urine, another rectal exam and
chest/abdomen X-rays. They said I would also need a gastroscopy but
this may not be scheduled until the Monday depending on
availability of a specialist. A while later a registrar came and
explained that my bloods were severely 'off', particularly my Liver
Function Tests (LFTs). An hour later a team arrived - Consultant
and three doctors. Serious faces and very direct questions. They
said my LFTs were seriously 'off' and something must be causing
this. They were treating this as something separate from the
suspected ulcer. So, they were thinking perhaps some kind of
hepatitis - had I been with prostitutes, had gay sex, was I on
drugs, taken an overdose of anything…..all of which I answered no,
no, NO! I knew they didn't believe me as it all didn't add up.
Well, off they all went to do more tests……
Sunday 2nd April - I was transferred to a medical ward. I had more
X-rays and an ultrasound. On Tuesday the doctor picked up what she
thought was a thickening of the bowel. They decided maybe it wasn't
a stomach ulcer but a bowel issue so ordered me to have a
colonoscopy (tube/camera inserted rectally). At the end of their
examination the operator called my consultant to say that my bowel
was clear. She then asked them to immediately perform the original
gastroscopy. Afterwards I asked if he had found my ulcer - yes, he
had found some ulceration. Great I thought - nothing more
serious!
Back to the ward to rest and sleep the procedure off. Well, the
team arrived at my bed and pulled the curtains. Concern rising…Yes,
they had found something which they had taken a biopsy of. They
couldn't say what it was until they had it examined but there was
some kind of lump in my duodenum. Anyway, try not to worry and they
had now scheduled a CT scan for later that day.
Was this really happening to me? Was each day with its attendant
tests leading me down a path I didn't want to be on? I tried to be
positive. They would find an innocent explanation and fix it. I
would be back home in a day or so with life back on track.
Thursday 6th April-was a long day. I almost felt a fraud taking up
bed space. After lunch I was in the day room. Through the glass
doors I could see my consultant and a nurse coming down the
corridor. The CT scan confirmed I had a tumour on my pancreas. It
was large. The biopsy confirmed it was malignant - Cancer. She was
not a cancer specialist so I would be referred on. She could not
say that this would not severely impact my life for the next 6-12
months. She could not say that it would not shorten my life. I
could go home and they would ring me on the Friday after they had
reviewed my case and available options. Bombshell.
Treatment plan
The first weekend was a complete and utter nightmare. We had to
tell the children but how? Di and I agreed we would wait until I
knew the exact treatment plan so we could tell them of the problem
but also explain the treatment I would get to fix this! I went from
despair to hope in regular hourly cycles. Di was being so strong
for us both. Friday late afternoon my consultant called to say the
MDT (Multi-Disciplinary Team) had met. Their conclusion was that
the tumour was inoperable and I had an appointment with an
Oncologist to plan chemotherapy. I asked why they could not operate
but she said she wasn't there but that the tumour was too large and
too complicated - I should ask more of the Oncologist. Lots of
questions which right now were all unanswered. The biggest being
why not operate? I knew that would be the best chance to try to
effect a cure but it seemed it was not for me…..
I went on the internet to try to find some answers. Oh boy, not
the best idea. I found an excellent site - Cancerbackup* - which
was to become a saviour in many respects. Another site was I think
American but typified so many out there. Full of stark statistics
and depressing outlooks and mortality rates! I knew that my cancer
was difficult and had a poor prognosis. That was enough. I decided
then and there NOT to surf random sites. I had to fight this and
become positive somehow. I did not want to die. I did not want to
leave my wife and children.
Telling the children was so hard. We sat them down together and
explained I had a tumour but that I would start chemo and get
better. The first time I looked in a mirror I cried. I looked at my
abdomen and tried to picture the horrible, vile cancer lying
beneath. Why were you there? Had I contributed? Had the stress of
work been responsible? Was it in any way hereditary (my father had
died of cancer of the bowel when he was 58)? More unanswered
questions that kept me in that circle of sadness and despair.
Chemotherapy
Tuesday 11th April 2006- Di and I met the oncologist at
The Park Hospital. This is a private hospital though he also works
at the City Hospital where I was diagnosed. I had private cover
through work. He explained the nature of the tumour, its relatively
fast-growth nature had positive benefits in terms of potential
ability to respond to treatment. It was 7cm long located in the
head of the pancreas and protruding into the duodenum. The CT scan
did not indicate that cancer had spread outside of this which was
very good news. I asked why surgery had been ruled out. He said it
would be too dangerous and the tumour was too big.
So, the plan was a 3 cycles of 3-weekly cycles of chemotherapy.
First week Gemcitabine and Cisplatin, following two weeks just
Gemcitabine. We would start the coming Thursday.
I left numb and with brain cells exploding with the new
information.
Generally I would be OK on the treatment day but would go
downhill on days 2 and 3. No energy, tiredness, felt sick, no
appetite. I settled into the routine of weekly visits to my lovely
nurses at The Park. Sometimes friends would drop by while I was
there to help pass the time and give me support. I developed
jaundice and needed blood transfusions. We suspect the tumour was
blocking the bile duct. After a week or so the symptoms eased. I
became tired and lacking energy.
The oncologist then planned the next phase.
Radiotherapy
I went to City Hospital for the planning consultation. This
involved a CT scan to determine if the chemo had had any effect and
to determine the angles of attack for the radiotherapy. Good news,
the tumour had shrunk from 7cm to 6cm. Small but in the right
direction!! I was to have 25 fractions of treatment (5 weeks Monday
- Friday) with three angles of attack. Side effects were
unpredictable but would certainly include chronic fatigue.
Alongside this I was to have weekly chemotherapy with low-dose
Gemcitabine.
So, the next phase. Daily drives to the City Hospital (45 minutes
each way), a wait of up to 30 minutes (not bad) then 10 minutes of
actual treatment. Plus of course a few hours once a week at The
Park. It took its toll. The lethargy built up. I prided myself that
I drove every day bar the last two when Di drove me.
After treatment finished we went as a family to our apartment in
southern Spain. Di and the children so, so needed a break. With
every day I grew a little stronger. After my return I was scheduled
in for a CT scan to see what effect the treatment so far had
had…..
Surgery: chance of a 'cure'
I had the CT scan and a week later Di and I met with the
oncologist to get the results. He told us that not only had the
tumour reacted positively to the Radiotherapy/chemotherapy but it
had shrunk from the 6cm to 2cm!! This was more than anyone could
have expected or hoped for. The next step was to go back to the
surgeon to re-evaluate that option now that size was not the
issue.
Di and I met my Surgeon. Quite a change of mood from that last
time we met! He had my scan films on the display unit and straight
away said that we had achieved something he had not seen before.
That with the tumour so much reduced he felt surgery was viable and
indeed was my only chance of a cure. He was concerned about the
viability of my pancreas as it had been severely affected by the
radiotherapy. He suggested keeping our options open in terms of a
Whipple's procedure or a total pancreatectomy. For my part I said
that if there was a choice between removing my pancreas and me
being a diabetic for life or leaving some in and risking a relapse
then I vote for life!
We left him reeling with the promise of life - yet fearful of
the deliberate decision to elect for serious life-threatening
surgery and the associated risks. We had about 3 weeks to get
through. Hope abounded everywhere with friends, family and
colleagues rooting for me.
I was positive and hopeful yet so, so very scared. Suddenly it was
the night before surgery. I sat in my study and wrote a letter to
each of my daughters - one they would only get to see if I died. I
cried buckets as I said what I wanted to say to each of them. This
was so hard and my lowest moment. I took Di through the folder and
could hardly speak.
I was looked after superbly by the OR staff and the anaesthetist.
The operation lasted much longer than anticipated. My spleen's
blood supply came straight through my now useless pancreas so they
had no choice but to remove it. In all they removed my pancreas,
duodenum, gall bladder and spleen. Subsequent analysis showed that
the tumour was quite dead and no live cancer cells were detected
anywhere else. What a result!!!!
Recovery
Slow is the word
for this section. Slower than the slowest you can imagine. Anyone
reading this about to have similar surgery please expect to take
anywhere from 12-24 months to approach true normality. The problem
is one of expectations. I felt exhausted. Had no energy. Had no
enthusiasm to do anything. Didn't want to walk. Didn't want to go
for a drive out. I stopped trying to see improvements day by day
and instead looked for subtle changes week by week. That worked
better. Gradually things improved. My weight started to plateau and
begin to rise. A big problem was depression. Some of it I'm sure
caused by blood sugar issues as I grappled with the diabetic
control. But I think it dawned on me that I nearly died. Everyone
else knew this but as I had lived from day to day I had not focused
on this outcome - just making the best of the moment, getting
behind the treatment. This all hit me like running into a brick
wall. So, I thought about it all and cried. For what I might have
lost. My devoted and supportive wife. My beautiful children who had
been there for me whenever I needed them. It was a tough time with
bouts of insomnia. But time heals and gradually I came to terms
with it all and as I grew stronger my perspectives changed.
I am as of April 2011, 5 years since diagnosis. Things are looking
up to be one of the 2%! My insulin allergy is under control as
generally is my diabetes. I have some long term effects like
neuropathy in my feet, tinnitus, occasional bouts of tiredness but
in the whole scheme of things relatively minor.
Finally, I must thank Di, my children and my close friends.
Without their endless, selfless support I know I would not be here.
My life is all the better for this experience and the legacy is a
determination to live it to the fullest, to maximise family time
and to help fellow suffers where I can.
April 2011
*Ed note: Cancerbackup and Macmillan merged in 2008