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Category: Coping with PMP

  1. Iain shares his story

    Posted on

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

    Pseudomyxoma Survivor Iain shares his storyFor 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.

  2. The Waiting is Almost Over!

    Posted on

    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.

    quoteopenThe 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...

    Christine shares her tale of waiting with Pseudomyxoma SurvivorThe 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!

    Christine shares her tale of waiting with Pseudomyxoma SurvivorAnyway 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

  3. Book Launch - The Cancer Survivors Club – By Chris Geiger

    Posted on

    Cancer survivor Chris Geiger has released The Cancer Survivors Club; a collection of truly inspirational, uplifting and assuring survival stories. These stories were submitted from readers of his regular newspaper columns and in response to the worldwide publication of his ‘Guinness World Record’ newspaper article; together with his radio tour.

    When first diagnosed with cancer, Chris spent hours scouring bookshops, desperately hunting for books written by people who had fought and survived cancer. “Most of the books I found had been ghost written for film stars. The majority dedicated considerable time to mentioning their celebrity friends or the location of their next film, yet spent little or no time describing their treatment and more importantly how they survived” Chris Geiger said.

    The main focus of The Cancer Survivors Club is to help, encourage and inspire people touched by cancer. In addition it provides current sufferers with a distraction from the worries of daily treatment, by encouraging them think about life once they’ve become a survivor and kicked the disease. One of the ways is for patients to start writing their story while still receiving treatment, detailing their experiences. Ultimately Chris Geiger wants patients to make it their goal to become a member of The Cancer Survivors Club and have their story published.

    Unfortunately cancer affects everyone; worldwide there are around 12.7 million new cases diagnosed each year. Every two minutes someone in the UK is diagnosed with cancer.  Chris Geiger had to endure two years of cancer treatment, which included a number of operations, radiotherapy, chemotherapy and a bone marrow transplant before he was finally in remission.

    The Cancer Survivors Club is an invaluable read for cancer sufferers, their families and friends. These poignant personal accounts from normal people, demonstrate an extraordinary determination to survive against the odds. It proves with survival rates doubling, anything is possible.
    Chris Geiger wants to encourage cancer survivors to become ambassadors, by using their experience to support and inspire other people who are currently receiving treatment; until they too become survivors.


    The Cancer Survivors Club has an excellent mix of stories, from the most common cancer, to the rarest. Some of the cancer types mentioned are; Brain, Bowel, Breast, Pancreatic, Testicular, Leukaemia, Nasal, Non-Hodgkin’s Lymphoma and Pseudomyxoma Peritonei.  Pseudomyxoma Survivor Dave's journey with Pseudomyxoma Peritonei, which he has documented in his blog,  started with a burst appendix and is included in this inspirational collection. It is amazing that this rare cancer has been included in this collection and will be invaluable for increasing awareness.  Also included in the book are a number of Chris Geiger’s cheerful columns, which include a humorous account of a prostate examination and the dangers of getting sunburnt on a crowded beach.

    “Anyone reading this book can’t fail to gain strength and encouragement from the stories within this book.” Chris said. During the increasing years Chris Geiger has been in remission, he has met and spoken with many newly diagnosed cancer sufferers.
    “I soon discovered how invigorated and inspired patients became by simply talking with a cancer survivor who understands first-hand how they are feeling.” Chris said. 
    “I’m hoping ‘The Cancer Survivors Club’ will leave everyone touched by cancer beaming with a renewed determination to survive. “Sadly I didn’t have room for all my newspaper columns, perhaps that’s another book or two someday.” Chris said.

    About The Author

    Chris Geiger splits his time between Bristol in the UK and Delray Beach, USA. In 2011, he won the ‘Columnist of the Year’ award, sponsored by EDF Energy, for the numerous light-hearted newspaper columns, publicising the disease and cancer charities. Other projects to raise awareness include writing a newspaper feature on World Cancer Day, in which he received a Guinness World Record for ‘Most Published Newspaper Article’. He also writes regular columns, voluntarily for both local and national newspapers.

    Useful links

    Author URL
    http://www.ChrisGeiger.co.uk
    Book URL
    http://www.TheCancerSurvivorsClub.com

    ISBN : 978-0-9574122-0-0

     

  4. It's a brand new day ...

    Posted on

    Whilst Steve from our support group was recovering from his operation in Basingstoke, he put together this poem about his journey so far:

    Steve from our support group shared this poem about his experiences with Pseudomyxoma PeritoneiNauseous, cramps, and no appetite,
    Restless, fatigued, but can't sleep at night.
    Doctors, nurses, booking appointments,
    Clinics, hospitals, waiting in out-patients.

    It's a brand new day, the pain's the same.

    Examinations, ultrasound, and MRI,
    Nil by mouth, and drinks with dye,
    Diagnosed, confused, I'm told it's rare,
    Another consultant, we can't treat you here

    It's a brand new day, the pain's the same

    Surgery, hipec, and itc,
    Drips and iv tubes for all to see,
    Aftercare, physio, and annual scan
    Faced it full on fought like a man.

    It's a brand new day, the pain's no more.Steve from our support group shared this poem about his experiences with Pseudomyxoma Peritonei

    - Steve

    That just about sums it up for so many of us - facing it full on and coming out the other side.  Thank you, Steve, for sharing it with us.



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