Graham Davies
|
Pseudomyxoma
Peritonei (PMP): a Survivor's Story
by
Graham Davies
I
have been encouraged to
write this personal account of my battle with a very rare form of cancer
known as Pseudomyxoma Peritonei (PMP) that affects one in a million
people. I hope my story will give encouragement and support to fellow-sufferers.
I do not display my email
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My background
I have always led an active life.
I have had a successful career as a university teacher, I have travelled all
over the world and I enjoy walking, swimming, playing golf and skiing. I have
produced a personal wiki, which includes information about my professional life
- click here: http://grahamdavies.wikispaces.com
As a younger man I used to scuba-dive.
I have rarely been ill, apart from suffering from a mild form of ulcerative
colitis that was diagnosed when I was around 30 years of age. The colitis was
never a major problem. It was controlled by medication and only occasionally
flared up and became an annoyance - that is, until 2003 when I had reached the
age of 61. In 2003 I suffered a major ulcerative colitis flare-up, which was
immediately investigated. A colonoscopy revealed that the colitis was more active
than usual, and I was prescribed a different type of medication, which brought
the flare-up under control. In the same year I suddenly developed an allergy
to shellfish. I had eaten prawns, mussels, crabs and lobsters all my life without
ill-effects, but now even a single prawn would cause my lips and face to swell
up and I became extremely breathless. I was advised not to eat shellfish in
future and I was prescribed an Epipen for emergencies. Around the same time
I developed a persistent cough, which my GP diagnosed as asthma, and I was prescribed
a preventative inhaler. I was also beginning to develop what I thought to be
typical old man's symptoms, i.e. a frequent need to empty my bladder, which
I thought might indicate prostate problems, but further investigation showed
that my prostate was in good order. By now I was beginning to feel a physical
wreck and I was not looking forward to old age.
First symptoms: 2005
In September 2005 I experienced severe
pain in my bladder, which was identified by my GP as cystitis and I was prescribed
a course of anti-biotics. The anti-biotics relieved the symptoms, but there
were still traces of blood in my urine. My GP felt my abdomen and looked puzzled,
as my bladder appeared to be very enlarged and extending right up to my navel.
He therefore immediately contacted our local hospital to arrange for an ultrasound
scan and an appointment with a consultant urologist. The ultrasound scan showed
very little, apart from evidence that I could not fully empty my bladder, which
was retaining about 250ml of urine. I then had to wait three months, until 8
December 2005, for an appointment with a consultant urologist, who identified
"cysts" around the bladder area - possibly benign, he said. An appointment
was made for me to have an MRI scan, which took place on 16 December 2005. I
was now becoming extremely anxious, as my father had died of bladder cancer
and I wondered if I would suffer the same fate.
Diagnosis: January 2006
I got the results of the MRI scan
in early January when I received a telephone call from a consultant surgeon
at Wexham Park Hospital, who informed me that there was "something nasty"
in my abdomen. An immediate appointment was arranged for a cystoscopy - which
involves the insertion of a tiny camera into the bladder under a local anaesthetic.
The doctor who conducted the cystoscopy looked puzzled. The inside of my bladder
looked OK - and I was able to view it too on a TV screen - but something appeared
to be pressing into the bladder from outside, like a fist pushed into a balloon.
Another appointment with my consultant urologist followed within a few days.
He called in a second consultant urologist, who looked at the results of the
MRI scan and the cystoscopy and described what he saw as "interesting".
The MRI scan showed a large growth in my abdomen and it was by now clear that
it would have to be removed by surgery. I was about to go on a skiing holiday
and asked the two consultants if I should cancel the holiday. They said there
was no need to cancel and arranged an appointment for a bone scan and a CT scan
to be carried out immediately on my return, followed by another appointment
with the second consultant urologist and a pre-operative examination.
I felt OK while I was skiing, a little
weary at times but with no painful symptoms of any kind, although I was still
very anxious about my forthcoming operation. By now the second consultant urologist
was in charge of my fate. He explained to me that I appeared to be "one
in a million". He explained that I had a very rare form of cancerous tumour
and he would lead the surgical team to remove it. He said that the tumour appeared
to be emanating from my urachus, a kind of tube that extends from the navel
to the dome of the bladder and which only has a function prior to one's birth.
The tumour was pressing on the outside wall of my bladder, making it difficult
for me to pass urine and causing the cystitis-like symptoms I experienced in
September 2005. Half my bladder would have to be removed, he said. I was somewhat
alarmed by this, but the consultant said it would not cause me long-term problems.
The date for my operation was fixed for 1 March 2006 and I was admitted into
Wexham Park Hospital on 28 February 2006.
Major surgery: 1 March 2006
The pre-op procedure was initially
a bit alarming. I was visited by the stoma nurse and told that my bladder might
have to be removed and that part or all of my colon might have to be removed
too. The nurse explained to me that I might - but this was only a remote possibility
- end up with two plastic bags fixed to my abdomen to collect urine and excreta.
She marked two points on my abdomen where the bags would be fixed if this was
necessary.
I was fairly calm immediately before
the operation. A senior surgeon explained the nature of the operation and the
anaesthetist was reassuring, explaining that modern anaesthetics are generally
very safe and cause few after-effects. He said that I would be given an epidural
in order to minimise the pain following the operation.
The operation took just under four
hours. I recall coming round and hearing the voice of a nurse watching over
me in the recovery room. My abdomen was completely numb and painless - the epidural
was working. I asked the nurse what had been done to me. She said that the tumour
had been removed, along with half my bladder. What a relief! No nasty plastic
bags, but I had two catheters in my bladder, one of which had been inserted
directly into the top of my bladder via a hole bored into my abdomen. The other
catheter had been inserted via the "normal" route. I was taken to
the intensive treatment unit (ITU) and wired up to lots of different monitors
and drips. I was allowed a visit by my wife Sally and our younger daughter Francesca
around four hours after the end of my operation. They were fascinated by all
the equipment surrounding me and by the tube up my nose (the so-called NG tube
- nasal-gastric tube) that went all the way down to my stomach in order to keep
it drained and to allow my digestive system to rest. I cannot fault the care
I received in the ITU.
On the following morning I was visited
by a physiotherapist, who showed me how to cough while holding my abdomen (in
order to stop my wound reopening), and said that I would also have to get out
of bed, stand up and sit in a chair. I could not believe that I would be able
to stand up after all that I had been through, but the physiotherapist was very
gentle and patient, and I managed to do what she asked. I was now considered
stable enough to be transferred to a general ward.
In the general ward I was connected
to an epidural drip, a liquid drip of some sort and a device that could deliver
a shot of morphine if I experienced pain. I still had a tube up my nose and
two catheters in my bladder. I was not allowed to drink or eat. I had a look
at my abdomen. There was a wound about 10 inches long, extending from the base
of my bladder to a couple of inches about my navel. It was held together by
row of metal clips and there was a tube draining off excess blood into a small
plastic bag. I was visited by one of the surgeons who helped perform my operation.
He was not very helpful, explaining only that the tumour that was removed from
my abdomen was "very nasty" and that I could not be considered "cured".
Later on he said the prognosis was not very good. Just what I needed to cheer
me up! A junior surgeon was more forthcoming. He said that the tumour had a
hard core the size of a tennis ball and a surrounding jelly-like mass almost
the size of a football. He said that the operation went very well. The leader
of the surgical team, the second consultant urologist whom I saw prior to my
operation, visited me, saying only that he had achieved all that he set out
to do - again very sketchy information. It was the clinical nurse who finally
told me that my tumour was identified as a mucinous adenocarcinoma of the
urachus and that it had spread to my omentum, which is a kind of
"apron" that protects the bowels. She summarised the discussions of
the surgical team regarding my condition and was generally encouraging, explaining
that an appointment would be arranged with a senior consultant oncologist following
my discharge from hospital and that he would be responsible for my long-term
care.
The beginning of my recovery: March
2006
My recovery following the operation
started well. I regained my strength quickly and was soon able to take short
walks around the ward. I was allowed to drink and eat. The tube in my nose was
then removed. But after that it all started to go downhill. I began to hiccup
non-stop. I vomited incessantly, and a new tube was inserted into my nose in
order to drain my stomach - a procedure that made me retch violently. I began
coughing up mucus and blood. An xray of my lungs was taken, but nothing serious
was indicated. Anti-biotics were prescribed and they appeared to work. But I
felt miserable. All the nurses and doctors could say was that the hiccups and
the nausea would eventually stop. They were right. After five days of hiccuping
and vomiting I awoke from my sleep feeling OK and I was able to take food in
liquid form. However, I was now suffering from a potassium deficiency and had
to drink a foul-tasting liquid twice a day in order to build up my potassium
level again. This only took two days and then I switched to bananas, which are
a rich natural source of potassium. I was now ravenous. I had lost around 20
pounds in weight - part of which was the tumour - and I was devouring Rich Tea
biscuits, bananas and Turkish Delight chocolate day and night as a supplement
to the hospital food.
On the plus side, my wound healed
very quickly and all the clips were removed seven days after the operation.
Within 10 days all the tubes, apart from the two catheters, had been removed
from my body and I was able to walk around the hospital, often visiting the
public WRVS canteen with my visitors. The two catheters were removed two weeks
after my operation and two days later I was discharged. I was relieved to be
able to go home. But it did not stop there. In the early morning following my
first night at home I experienced severe pain in my kidneys. I could not urinate.
I was suffering from urine retention and backflow to the kidneys. My half-bladder
wasn't working! My wife Sally rang the hospital and I was told to get straight
to A&E at Wexham Park Hospital. My son-in-law Rob came round to our house
and drove me there. A new catheter was inserted into my bladder and I was readmitted
into hospital. The pain in my kidneys stopped almost immediately.
I was kept under observation for
another week. In the course of this week I appeared to be doing very well, so
much so that I was allowed to go home for one night - complete with catheter
and leg bag - and told to return for a final check on the following day. It
was great to go home again. Sally phoned our elder daughter Siân and she
drove us to our local pub, where we had a meal and a couple of drinks (soft
drinks for me). The pub food, good old fish and chips and mushy peas, tasted
wonderful! On the following day I returned to the hospital where I underwent
a procedure in the theatre that involved filling my bladder with an iodine solution
to check it for leaks and to ensure that it was working. It was 100% OK. I spent
one more day in hospital. I could urinate again, albeit only around 125ml at
a time - but this would improve over the next few weeks. I was discharged on
24 March 2006 and I returned home. I had spent a total of 24 days in hospital.
One week after I was discharged from
hospital Sally and I went to see one of the surgeons who operated on me. He
was not at all encouraging, saying that the prognosis was not good and "it
won't be years". Sally, who is a very astute university graduate in philosophy,
challenged him to provide the evidence. He turned to his computer, finding just
a handful of cases like mine, with very varying survival rates. Finally, the
surgeon admitted that there was a shortage of data concerning my type of cancer
and that it was very difficult to predict how an individual would handle it.
Sad news: March 2006
During the last week of my stay
in hospital l received two pieces of very sad news: (i) a friend of mine in
his mid-50s had been admitted, without my knowledge, into the hospital where
I had my operation and had died of a heart attack in a ward just along the corridor
from my ward, (ii) my only surviving aunt, aged 95, had had a serious fall and
had died. I could not attend the funeral of either of them. Both funerals took
place the week after I was discharged from hospital, and I was still feeling
a bit weak and learning to cope with a much reduced bladder that required frequent
visits to the toilet.
Diagnosis of Deep Vein Thrombosis
(DVT): April 2006
There was one more setback to my
recovery. I was diagnosed with Deep Vein Thrombosis (DVT) on 2 April
2006. I had experienced some pain in walking after the operation, but I dismissed
it as a general post-op symptom. By 2 April the pain had become acute and my
left leg was very swollen. My son-in-law Tim drove me to Heatherwood Hospital,
Ascot, for assessment. DVT was identified in the thigh of my left leg and I
was immediately given a course of injections of Fragmin. I am still (April 2008)
taking Warfarin orally in order to thin my blood, which helps to prevent new
clots forming and helps the old clot to disperse naturally.
Since the first diagnosis of DVT
the area of the clot has been scanned twice by ultrasound to check on its progress
and I have had several appointments with a vascular consultant. It's not clear
whether the clot had formed as a result of the surgery or whether it was already
there before my operation, as the body sometimes forms clots in reaction to
cancer. Anyway, it's not a major problem. It's improving and it doesn't stop
me doing the things that I enjoy: swimming, walking a mile every day with our
greyhound Swifty, playing golf and going on skiing holidays once or twice a
year. I was advised by my vascular consultant not to travel by air. As a result,
I have rediscovered the pleasure of going on driving holidays all over Europe.
I just have to make sure that I wear compression socks when I drive on a long
journey and remember to stop at regular intervals and walk around for 10-15
minutes.
My disease is identified as Pseudomyxoma
Peritonei (PMP): April 2006
On 26 April 2006 Sally and I had
our first interview with a senior oncologist at Heatherwood Hospital, Ascot.
He was generally very upbeat and encouraging. He was impressed by how fit I
looked and said that we were fortunate to live quite near to the North Hampshire
Hospital, Basingstoke, which specialises in my type of cancer. He arranged for
an immediate appointment for my kidneys to be checked in case I needed chemotherapy
and for a post-op MRI scan to take place at Wexham Park Hospital on 9 June 2006.
He also wrote to the North Hampshire Hospital, requesting an appointment for
Sally and me to meet a consultant surgeon there. By this time Sally and I had
done a lot of research on the Web - which can be scary, but we are both university
graduates and experienced in handling reports of any kind with caution. Sally
had identified the North Hampshire Hospital and the Christie Hospital in Manchester
as being the two UK centres that specialise in my type of cancer, which she
(correctly) suspected was a variety of Pseudomyxoma Peritonei (PMP),
a very rare and unusual form of cancer that affects one in a million people.
Most people affected by PMP have the appendix variety, but mine was the
urachal variety, which is even rarer, maybe affecting one in 5 million
or even one in 10 million people.
The oncologist we met at Heatherwood
Hospital was the first medical consultant to confirm that I had PMP. PMP does
not act like most cancers. Most cancers spread in three different ways: (i)
by invading nearby tissues, ·(ii) via the bloodstream, ·(iii) via the lymphatic
system. PMP, however, spreads along the internal surfaces within the abdomen,
rather than into nearby tissues such as the bowel or liver. Its mucus, a jelly-like
substance, collects in the peritoneum, a kind of lining of the cavity
of the abdomen. It may be many years before symptoms of this type of cancer
manifest themselves. This is exactly my experience. I just thought that I was
developing a "beer belly". It was only when the tumour began to press
upon my bladder that I experienced any painful symptoms. PMP is often referred
to as "jelly belly".
We miss our daughter's wedding:
May 2006
Sally and I were hit by another blow.
Our younger daughter Francesca was to be married in Barbados on 8 May 2006 -
a special wedding trip. I had the foresight to cancel the flights and hotel
reservation for Sally and me when I received confirmation of the date on which
I was to be admitted into hospital. It was fortunate that I did so, as I could
not have undertaken a long-haul flight: I had DVT and I was still feeling a
bit weak. Furthermore I could have lost a lot of money if I had cancelled at
the last minute. So we missed our daughter's wedding. Read my account of the
battle I had with my travel insurance company: see my Cautionary
Tale.
I became a bit depressed around this
time. The initial prognosis I was given following my operation was not optimistic,
but I was determined to continue looking forward. For a while I stopped buying
new things for myself and I neglected our garden. But then I thought to myself,
"This is silly, pull yourself together", and I went to the garden centre to
buy trayloads of summer bedding plants. The exercise I got from tending our
garden did me good and soon we had a lovely display of flowers. I also bought
myself a new pair of summer shorts (more expensive than I would normally choose)
for playing golf, an expensive shirt and silk tie, and I spent around £750 on
new spectacles. Later on, I bought a new satnav device for my car and began
to think about driving holidays in Europe. After that, I never looked back.
From now on the news was going to be much more optimistic.
Visit to Brussels: June 2006
Three months after my operation I
was fully active again, doing all the things that I used to do. My half-bladder
was functioning more or less normally and I no longer had to get up several
times during the night. Sally and I decided to celebrate my 64th birthday on
2 June 2006 by going to Brussels for a long weekend. We decided that expense
was no object, so we travelled first class by Eurostar and stayed in the five-star
Meridien Hotel. Here is a picture of me enjoying a glass of Leffe Brune in Brussels
on my birthday. I felt really fit and well. It was a great weekend.
Results of my post-op MRI Scan:
June 2006
I'll never forget 23 June 2006. Sally
and I went to Heatherwood Hospital to meet my consultant oncologist, who presented
us with the results of my post-op MRI scan. It was good news: no new growth,
no signs of the lymph nodes or bones being affected, no visible remnants of
the tumour - which compared very favourably with the mess that could be seen
in my pre-op MRI scan. It was a beautiful sunny day. Heatherwood Hospital is
right opposite Ascot racecourse, and we had a great view of people arriving
for Royal Ascot: the men in their morning suits and top hats, the ladies in
their elegant dresses and, of course, big hats! Sally and I had a boozy lunch
in our local pub to celebrate the positive news.
The summer of 2006
The summer I spent at home in 2006
following my operation was beautiful. We had many sunny days. I spent a lot
of time lazing around on our garden patio. We had lots of barbecues and I enjoyed
taking our greyhound Swifty for longer and longer walks in the Berkshire countryside.
I swam regularly in the local Holiday Inn pool and I played several rounds of
golf. On 2 August 2006 our second granddaughter, Aela, was born. Things were
looking up. By the end of the summer Sally and I felt it was time for a "proper"
holiday, so we decided to spend a two-week driving holiday in Europe - putting
my new satnav device to the test - staying for a week in Interlaken, Switzerland,
a town that we had visited many times when our two daughters were much younger.
This raised the issue of travel insurance again: see my Cautionary
Tale. It was a wonderful holiday. We drove down to Switzerland via the Rhineland
in Germany, enjoying the wine in Rüdesheim, and returning via France, where
we visited the picturesque towns of Colmar in Alsace and Le Touquet on the north
coast.
First appointment at the North Hampshire
Hospital: October 2006
On 4 October 2006 Sally and I had
our first interview with a consultant surgeon at the North Hampshire Hospital.
He was generally very upbeat about my level of fitness, gave us more information
about the nature of PMP and talked about possible cures, including the Sugarbaker
"shake and bake" operation that is performed at the North Hampshire Hospital.
This is a long, major operation involving the removal of the gallbladder and
the spleen and an infusion of heated chemo directly into the abdomen. The consultant
arranged for a colonoscopy to be carried out on 1 November 2006 and a CT scan
of my abdomen to be carried out on 14 November 2006. He wrote to my oncologist,
giving his assessment of my situation. Basically, he said, it was a question
either of carrying out the operation in the near future or of adopting a watch-and-wait
policy. The results of the colonoscopy were good. I still had a mild form of
ulcerative colitis, but there was no evidence of PMP invading the large intestine.
I had to wait until 3 January 2007 for my next interview with the consultant
surgeon at the North Hampshire Hospital. The results of my CT scan looked good,
he said. There were just two tiny slivers of PMP mucus evident in my abdomen,
one near the liver and one just above the bladder. Nothing to worry about, the
consultant said, but the situation still needed to be watched carefully. So
I was able to go on my skiing holiday in Austria in January 2007 relatively
free from worries. On 26 February 2007 I had an interview with my oncologist
who had seen the results of the CT scan and confirmed that it was still a policy
of watch and wait.
A policy of watch and wait: April
2007
On 4 April 2007 I had another interview
with the consultant surgeon at the North Hampshire Hospital. He said that it
was still a question of watch and wait and arranged for a CT scan to be carried
out on 7 August 2007.
Re-run of our daughter's wedding:
May 2007
The biggest disappointment for Sally
and me after my operation on 1 March 2006 was that we were unable to attend
the wedding (in Barbados) of our younger daughter Francesca to Rob. So we arranged
a sort of "re-run" one year on, combining it with the 5th wedding anniversary
of our elder daughter Siān and her husband Tim. It was a modest family celebration
at Francesca and Rob's house - just the six of us and our two granddaughters
Rebecca and Aela. It was a lovely sunny day and Francesca looked gorgeous in
her wedding dress.
65th birthday celebration: June
2007
This was to be a summer of celebrations.
I became an old age pensioner on 2 June 2007, an event which I decided to celebrate
by organising a barbecue for family and friends at our local pub. Around 40
people turned up. It was another lovely sunny day. Here's a picture of Sally
and me in the early evening:
Holidays: Summer 2007
By now I was determined to make the
most out of life. Sally and I took two summer holidays, driving down the Rhine
for one week in July and touring Ireland for two weeks in September.
August 2007
The results of the CT scan which
was carried out on 7 August 2007 were good. On 19 September 2007 my consultant
surgeon at the North Hampshire Hospital told me that the slivers of PMP jelly
in my abdomen were shrinking and that the sliver above the bladder had actually
disappeared. My body appeared to be fighting PMP very effectively. I was told
that it would not be necessary for another CT scan to be carried out until August
2008 but I could have an earlier scan if I wished.
September 2007
On 24 September 2007 I saw my consultant
oncologist at Heatherwood Hospital. He had seen the results of the CT scan carried
our on 7 August. He said that my PMP was currently in remission and that he
did not need to see me until 22 September 2008. Basically, my oncologist was
telling me to go away and enjoy life. So Sally and I booked our skiing holiday
in Austria, January 2008. The holiday was wonderful. I skiied well, in almost
perfect snow conditions: substantial falls of powdery snow on two days and clear
blue skies the rest of the time. We were joined by our elder daughter Siân,
her husband Tim, our granddaughter Aela, my brother Chris and our sister-in-law
Helen - and a few other relatives from Ireland.
February 2008
I chose to have another CT scan and
blood tests carried out at the North Hampshire Hospital on 19 February 2008.
The results were good: my blood was normal and there were no visible signs of
PMP fluid or jelly in my abdomen. My next follow-up scan and blood tests will
be in a year's time. Yippee!
1 March 2008
 |
The
date 1 March 2008 is significant. It was the second anniversary of my operation
on 1 March 2006, so the pessimistic prognosis that "it would not be
years", which Sally and I were given following my operation, was wrong.
Being half-Welsh, I always thought that having an operation on 1 March,
St David's Day, was a good omen. |
Concluding observations
I have not had any chemotherapy as
it is claimed that it is not very effective on this type of tumour if administered
orally or intravenously - and in any case there have been no indications that
I need it. I did not have a chemo infusion in my abdomen at the time of my operation
on 1 March 2006 as Wexham Park Hospital does not have the facilities to administer
it - and (as I have indicated above) the identity of the tumour was only confirmed
after the operation. I am assuming that the surgical team did not know precisely
what kind of tumour it was until they got it out, and then the initial prognosis
was that "it would not be years". At present (April 2008) I appear to be defying
this prognosis and I am enjoying a full and active life.
It is clear that I had a very slow-growing
variety of PMP, and it is possible that the tumour took 10-15 years to grow
to the massive size that it had reached by the time of my operation. No further
treatment or surgery is planned for the time being. Although I have some anxiety
about the future and the possible reoccurrence of PMP, I don't think about it
most of the time. As the Roman poet Horace put it: "Carpe diem!" - "Seize the
day!"
As well as recovering from my operation,
I have noticed other important changes in my health. My ulcerative colitis has
been in complete remission since February 2007. My asthma is also in remission
and I no longer have to use a preventative inhaler. I am no longer allergic
to shellfish, and I can eat buckets of prawns and mussels with no ill-effects.
No one can offer an explanation for this. Only the DVT remains a problem, but
this is also improving. Watch this space...
Support of family and friends
Throughout the ordeal following my
operation I knew I could rely on my family: my wife Sally, my two daughters
Siân and Francesca, my two sons-in-law Tim and Rob, and my brother Chris
and sister-in-law Helen. They all visited me while I was in hospital and I appreciated
their support. But I was surprised to discover how many really good friends
I had: friends who came to visit me in hospital, friends who comforted Sally
in my absence, friends who were available as car drivers to ferry Sally to and
from the hospital and to take me to follow-up interviews, scans and tests while
I was unable to drive. I particularly appreciated the support of friends who
had also undergone major surgery and who had survived and were now fit and well.
Their encouragement meant a lot to me. I am also grateful to my many friends
of different religions who offered their prayers.
Useful links
relating to PMP and other survivors' stories
Updated 16 May 2008
©
Graham Davies 2008 under
a Creative
Commons Attribution-Noncommercial-No Derivative Works, UK, England & Wales Licence.
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