Today, Iain, from our Support Group, shares his story:

For well over a year I noticed my belly steadily getting bigger though I didn't seem to be eating any more than normal. I of course tried dieting a few times but when I didn't lose weight I gave up pretty quickly.

At work I used to eat at my desk and started noticing when I brushed down the crumbs (mucky pup!), I felt a pain right down the surface of my chest but again didn't think it was more than just getting fat.  But around October 2012, this pain in my chest began bothering me all the time and found it very difficult to tie my shoe laces so only then did I go to the Doctors.

My Doctor thought I might have a hernia and sent me to Ninewells Hospital in Dundee for an Ultrascan.  I got this appointment within a week and was seen first by a student who could not explain what she saw so called the nurse who also had a look.  She also couldn't explain what she was seeing so then called a doctor who explained that there was something there obscuring the view but again he had never seen this before and recommended my own GP send me for a CT scan which he did.

I had the CT scan early December and waited 2 weeks for the results. I was surprised when Mr Polignano at Ninewells Hospital wanted to see me the following week to discus the results but still not fearing anything serious was wrong I went on my own to be told I had this rare cancer PMP which needed the huge operation you all know about.

My operation lasted 12 hours followed by the Chemo Pack for another 2 hours and eventually got to Intensive Care after midnigh.  I only spent one day in Intensive care and was taken to the High Dependency Unit for a further 5 days. During this time I have to admit I had short periods of depression and wanted to die as I felt so bad but luckily these feelings didn't last long as the staff were marvellous and made me as comfortable as I could possibly get.

I was then transferred to a private room on a ward where i stayed for a further 2 weeks.  I was given a pass to go home for a long weekend but was let back home as they could see I was eating much better at home and getting much more exercise that I was on the ward.
So I was in hospital for just over 3 weeks.

When I was initially told I don't think I really took it in; I had a wee cry in the car and went back to work. It was difficult telling others as my mother, partner, friends and family, seemed to take it quite bad.  Apart from one day, 2 days after I was told, I've never really got upset whilst everyone around me acted like they were going to lose me.  I did get upset when my original operation was cancelled as I lay on the bed sedated waiting for the operation to begin, and then to receive a letter saying I had to wait a month until the new date. I did get chest pains which my Doctor said was acid reflux which I am prone too but I think it was also anxiety.  I do get very emotional about anything and should really stop watching programmes like 'NHS In A Day' as I always end up in tears. This emotion is not in anyway sympathy for my own condition as I have always accepted I have no control over it and want to get on with a normal life.

I feel quite good at the moment but want to push on the recovery so I can get back to work. I'm an impatient patient!!  My stoma is soon to be reversed and I can't wait for that.  I worry about catching any colds or worse off people in supermarkets etc. but will not become a hermit.

My advice to tohers is to stay positive whilst recovering as it does help. As one doctor doing his daily rounds told me,

" We can help you overcome any physical problems but It's up to you to keep your mind positive." and he was right.

To read more stories like Iain's, please visit our Survivors' Stories page.

Megan and her husband Brian, from our support group, share her story:

On November 30, 2009 Megan went to Northside Hospital, Cherokee, with severe abdominal pain.  After hours of testing and exams, she was admitted to do further testing.  Megan's abdomen was swollen to the point that the doctors, had they already not tested for pregnancy, said that she looked to be approximately five to six months pregnant.

Megan was diagnosed as having Stage 3c Ovarian Cancer.  The tumors were large mucinous tumors.  Megan was referred to Dr. Joseph Boveri, a gynaecological oncologist in Atlanta, to follow-up and to get this tumor removed.  

On December 11, 2009 at 2:33pm, Megan underwent a six and a half hour debulking surgery at St. Joseph's Hospital which included removal of the tumors, appendix, omentum, complete hysterectomy and exploratory surgery on her bowels and other organs to confirm if the cancer had spread to those as well.  Her incision was from her right hip to left hip.  It took 57 staples to close the incision.  Dr. Boveri came out after the surgery and explained to the family that it was cancer, however, depending on what the pathology reports revealed, that he thought the primary cancer started out as appendix cancer...

On January 10, 2009, Megan went back to St. Josephs to have a port implanted for ease of use during chemo.  

The pathology reports finally came back and concluded that indeed it was not Ovarian Cancer, but Stage 4b Appendix Cancer with Psuedomyxoma Peritonei (PMP).  This type of cancer is a gastrointestinal (GI) cancer, but does not usually response to systemic (IV) chemo as it does not have good blood supply.  

On February 10, 2010, Megan endured yet another debulking surgery at DeKalb Medical Center under the care of Dr. Michael Quinones.  Assisted by Dr. Boveri, Dr. Q went into Megan's body through an incision from her sternum down to her waist and removed three more tumors that had grown to date.  Then heated chemo (HIPEC) was poured directly into Megan's abdomen.  This is supposed to take care of the cancer in the abdomen as well as reduce side effects.  The dose is 4 to 400 times higher than that of a regular chemo treatment because not much of the chemo is adsorbed into the bloodstream.  This surgery lasted about four hours and Megan recovered in the hospital for a week before being sent home.

- Megan and Brian

To read more stories like Megan's, please visit our Survivors' Stories page.

Julie, from our support group, shares her story:

My journey with this rare cancer began in February 2002.  I had just returned from a family holiday with my husband and our three children who were then aged 10, 7 and 5.  When we got home and I looked at the photos, my stomach looked really distended.  After noticing this it just seemed to get worse and felt quite hard.  I went to see the Doctor and he said I probably had wind or had just put on weight.  After a week or so I still had no improvement so went back again and was told perhaps I might have a hernia or something but still nothing was done. I made yet another appointment and this time it was agreed I could have a scan. This was arranged for the next day.

What ensued was a complete whirlwind.  I went for the scan on a Tuesday morning.  By 5pm, the results were back at my Doctor’s surgery and a very rushed appointment was made for me to see a Consultant Gynaecologist at Southend Hospital early on Wednesday morning.  When I saw him he gently told me that they had found an ovarian tumour and some liquid and that I could go back in a week’s time for a hysterectomy.  I was very distraught and didn’t feel I could go home and spend a week trying to be normal; I just wanted the tumour out!  The Consultant said as I felt that way he could perform the operation that afternoon.  So with no time at all to come to terms with what was happening I had a hysterectomy at age 39.  My care at Southend Hospital was fantastic, everybody was so kind.

I spent 10 days in hospital and was visited by a counsellor who spoke to me about dying and wanted to speak to my children too.  I didn’t feel particularly comfortable talking to her and definitely didn’t want her speaking to my children.  Everyone reacts differently and I didn’t want to accept they were preparing me to face dealing with the fact I had ovarian cancer.  I think I was at home for about a week and then had to return to hospital to get the pathology results and to see what the next steps were to be.  I will never forget the Consultant’s words “You have not got cancer; you have a rare disease called Pseudomxyoma Peritonei (PMP), which can only be treated with further surgery”.  Someone in Pathology recognised what I had, which was quite unusual in 2002 as it was so rare, so luckily for me Southend Hospital was able to point me in the right direction.  It was arranged for me to visit Mr Brendan Moran, the Specialist at Basingstoke.

I found out the treatment would be a further operation and that I was a suitable candidate.  I had to wait until six months after my hysterectomy so I would be strong enough to withstand this further op.  In January 2003, I travelled to Basingstoke and had the operation, it took 13 hours. I had already had a complete hysterectomy and now had my appendix, spleen and gall bladder taken out, part of my stomach removed and disease had to be removed from my abdomen and stripped off the surface of my liver, and a few other bits and pieces while they were at it!  I was given heated chemotherapy at 41˚C directly into my abdomen to hopefully remove any cells which may have remained.  I spent five days in intensive care, then went back to the ward to continue my slow recovery.  I was in North Hampshire hospital for a total of four weeks.  The care there was second to none, absolutely amazing.  I came home for the next instalment of the recovery process, which was probably a further three months.

After all this I felt very well and eventually completely back to normal and life continued as before.  I had to have an annual scan at North Hampshire Hospital.  After about six years, some abnormalities showed up on my scans but they were stable for a couple of years.  In 2011, it was decided I would need to be operated on again as the recurrence had grown in size. In February 2012 I went back to North Hampshire hospital.  This time the operation took 7 hours; they had an awful lot of adhesions to get through, which was quite time consuming.  I had part of my bowel removed which they managed to resect.  The mass was removed and I had the heated chemotherapy again.  This time I was only in hospital for just over three weeks but still had the three month recovery period.

It is almost a year later and I am currently feeling very well, back to work and living a ‘normal’ life.  The whole experience has taken its toll, not just on me but my whole family.  My husband had an awful lot to cope with especially as our children were so young the first time round.  The second time was, in retrospect, possibly a bit easier as our children were all teenagers but that also brought with it issues as they were fully aware of what was going on.

- Julie

To read more stories like Julie's, please visit our Survivors' Stories page.

Christine from our support group is due to have her operation in two days.  She shares with us how glad she is that the waiting is almost over.

The call came out of the blue. When my gynae consultant's secretary called, I thought she wanted to say the appointment I had changed was inconvenient.  But no, she wanted to ask me to come back in!  Even then I wasn't particularly worried, didn't really have a clue why...

The consultant sat in his chair and advised me that my histology after the hysterectomy had shown a borderline malignancy.  I relaxed in the chair... borderline... well, that didn't sound too serious, did it?  The consultant said he had seen this tumour before but much worse than mine so it all seemed very positive.  He gave me the name Pseudomxyoma Peritonei (PMP) and told me he would refer me to a general surgeon.

Well, I came home and went straight on the internet.  My husband wasn't interested at all in checking it out but I read everything I could find! As I read, I got more and more alarmed.  This didn't sound very borderline to me, more like a full-blown tumour!... and the treatment! Very scary, I understand why patients call it MOAS (mother of all surgeries) but on the other hand I didn't fancy the watch and wait scenario, not an impatient person like me!!

The consultant had said it was one in a million and my husband had said he always knew I was! I'm never lucky on the lottery so how come I was unlucky enough to get this? Why me?

I had read so much about PMP that I knew there were only two centres in the UK that treat it.  I decided to call Basingstoke in advance of my appointment and ask how to get referred.  I just happened to speak to a very helpful lady who advised me they would need all my test results including the actual histology not just the results.

Armed with this information my husband,John, and I set off to Kingston for my appointment with the general surgeon. I was all ready to do battle to get referred to Basingstoke but need not have worried; the consultant suggested it himself before I could get my words out!

So, "No problem", I thought.  It was now June... and I was impatient to get to Basingstoke.

OMG, So many phone calls and so many letters later... then I was told "It's slow growing so there's no rush..."!  I was in such a state! Why can't I see the specialist now? My appointment came through for August and that was a private one! I used to lay in bed in night and cry.  I didn't want to die, not just yet.  I would wake John up at night and cuddle him and go through the whole 'Why Me' scenario...

Before I had my hysterectomy, my work had wanted me to postpone the operation due to the business need.  It had all got very unpleasant. When I went back to work, I stunned them with the Big C word but didn't really fill them in completely...

Now the corporate policy decided not to fund all of the consultant's fee.  What next?... More stress!!

Finally, August arrived and I saw the PMP specialist, Mr Moran. We had a long chat. Still not sure why this serious condition is called BORDERLINE for goodness sake!! I was worried I was overweight but I have always been pretty fit with it.  I don't think John wanted me to have the big op but I was up for it straight away... bring it on!

"Ok", I said, "Let's do the op next week".

Oh no, it wasn't that simple... it was deemed better to wait 6 months after my original op.  What??? REALLY??? As you may have guessed, patience is not a word I'm familiar with.

So with the next appointment in November, I went back to work and tried to forget it.  I sent off for a wristband and car sticker from the Pseudomyxoma Survivor website but didn't join the support group.  I still read everything I could get my hands on about PMP, including a very highbrow paper given to me by the hospital.  Although it was a long time ago, I used to be a nurse and midwife and you know what they say, a little knowledge is a dangerous thing!  Not that I knew anything about PMP or had even heard of it.

Poor John, I would read out bits to him, mortality rates and so on, what a cheerful soul I was!  His answer was to take me away to every place possible... in the space of four months, we visited America twice and visited Germany.  John lives for his holidays.

When I saw Mr Moran in November and he said "OK, let's do the operation".  Although I was terrified, I was also so relieved! Did I mention that I am not a very patient person?

So from confirmation of my operation to the surgery itself has been about 7 weeks to wait.  I gave work the news that I would be off for up to 6 months.  Thankfully, this time there have been no problems after I spelt out how major the surgery is.  Even then, one of the team leaders thought they were putting all the organs back! Oh, I wish... wash 'em off with Flash and stick 'em back!!

I felt so much better once I had a goal, to get through the MOAS.  The uncertainty has been the worst part, I was so positive after I knew. I was joking I just wanted a free tummy tuck and 6 months off work!

Christmas came and I spent huge amounts of money on my family.  If this was going to be my last Christmas, I would enjoy seeing their faces... of course I know it won't be my last but with such big surgery there is always that nagging doubt you won't wake up... you keep batting it away but it keeps popping back into your mind.

So nearly there and since New Year I have spoken to Dawn, signed up with a Pseudomyxoma Buddy and joined the Facebook group and started posting on the site.  In fact, one could say I'm obsessed with the site! I have probably posted every day and it has helped so much! So much positive support.  On the negative side, and I know this is why consultants sometimes aren't keen on internet support groups, I keep thinking there are a lot of people who have had MOAS twice and that's scary!

However, the benefits hugely outweigh any disadvantages.

Everyone at work thinks I have been so brave... I'm not brave at all, I'm terrified... and I have a very low pain threshold! I had to have two teeth out a couple of weeks ago and was in such a state I took Valium! It's true, however, I have been joking about sautéed spleen and ovaries with onions... laughter is definitely the best medicine and I definitely have a great sense of humour.

I feel very sorry for John, he is obviously so worried about me but also his Mum is showing signs of dementia.  He even got annoyed with me yesterday when I said how concerned I was for her and he told me just to concentrate on myself!!

It has been really weird until now two days before surgery, I have been more relaxed and positive than I was when I was first diagnosed! On top of all of this, my nine year old grandson, Lewis, has been very poorly.  We are anxiously waiting to see if my son can donate his kidney to Lewis for his transplant in the spring.  Strangely, worrying about them took my mind off myself.

So, two days time.. finally feeling very scared...  I am thinking about it all day.  I am very lucky though and have great support from friends and family.  I think it's fairly normal to be scared.  It's a big op but I think having a network of people who have gone through the same thing is great.  I look forward to all their advice post op.

Bring it on... now I have waited seven months so am impatient to get it over with and start my recovery.  I am mad about cards so I have taken all the Birthday cards into work for my colleagues until the end of May.  I have the ones at home all stamped and ready for John to post.  I took 2 books of stamps into work and told them to write if they can remember how.

My family are all coming over today.  I can't wait to see my grandson, hopefully he wont be too bad.  Sadly, he isn't allowed potatoes crisps, chocolate and so on but he is very sensible and knows what he can eat.  My son has said he doesn't want it to be like the Last Supper so I think there's no medical chat today for me or Lewis!

Anyway good luck to everyone who is undergoing MOAS.  The remit is stay positive, have a sense of humour, take baby steps, don't worry if things don't go exactly to plan and surround yourself with a network of friends, family and Pseudomyxoma survivors.

I think the phrase I have heard most often in the last two weeks is "You'll be fine".  I'm sure I will.

- Christine