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  1. Continuing our posts with survivors' stories, here is Georgina's:

    Georgina shares her story with Pseudomyxoma SurvivorI went to the hospital with what my doctor thought was a bad kidney infection. I was told at Colchester hospital that I had appendicitis. I had my appendix removed the next morning, I recovered well and was sent home after being told everything was fine.

    Two weeks after having my appendix removed, I was called back to the hospital for a post-operative check and was told I had a rare bowel cancer and was being referred to a specialist hospital in Basingstoke.

    I had my operation in March 2014. It took 14 hours and I had HIPEC after surgery and intraperitoneal chemo (EPIC) for three days after. I had a hysterectomy, gall bladder, spleen, omentum and liver capsule removed as well as lining of my bowel and diaphragm and a few other bits I'd never heard of!.

    The team at Basingstoke are confident that they have removed all of the cancer. I started walking and sitting out of bed just three days after my surgery. My mum stayed with me and looked after me through my recovery. It made a big difference to me, I felt safe having her there. It was a tough recovery but it's amazing how quickly you can start to feel better. After the first few weeks I started to feel much better very quickly.

    I returned home after 14 days and I walked my little boy 20 minutes to school the day after I got home. With the help of my husband and neighbour I did the school run from that day, it was a struggle but I managed it. That was all I did for a week but it meant a lot to my son. Two weeks after returning home I was cooking dinner and doing light housework. My appetite took six weeks to return and I had a few issues with eating and I went to my local accident and emercency department with stomach pain but Basingstoke explained that although they hadn't removed the bowel, one can have problems with adhesions as they removed the lining. I now know what I can and can't eat and have no more pain. I felt very tired for a few months but now, five months later, I feel very nearly back to normal.

    Apart from having my appendix out, I had never had an operation and had no idea what to expect. The hardest thing for me was leaving my four year old son behind the morning I went to Basingstoke, telling him I had a belly ache the doctors were going to fix it and I would see him soon. I don't remember feeling scared. My family and husband were all devastated. I felt if I got upset and scared they would feel even worse so I told them if I could get through it without crying then so could they and I didn't want my little boy to be worried. He was too young and had just started school.

    I think because I had no symptoms, it was easy to pretend nothing was wrong. I was told in November my appointment with Mr Cecil at Basingstoke was in February so I just got on with enjoying Christmas. I had a few tests in the New Year before my appointment at Basingstoke – a CT scan, ultra sound, colonoscopy and capsule endoscopy.

    My appointment at Basingstoke seemed to come round quite quickly for me; my family felt it had been too long. My local hospital had told me I was lucky and they had caught the cancer very early so it was a bit of a shock when I was told I had probably had it for 10 years if not longer and Mr Cecil and the specialist nurse, Sue, talked through the operation and options I had about freezing eggs if I wanted to have more children. My husband and I were trying for a baby but I decided then and there that I just wanted the best chance to be around for the child I had and we were lucky to have him. I got the date for my surgery the following day. It still all felt like it was happening to someone else not me as I felt great; I never even catch a cold.

    My local hospital where great. I had a specialist nurse for colon cancer. She didn't know much about PMP but she phoned me a few times a week to ask how I was doing from when I was diagnosed to my appointment at Basingstoke and she personally chased all my test results. I was also offered aftercare with a Macmillan councillor and physiotherapy in their hospital gym. My mum was wonderful and really looked after me she didn't leave my side through everything. My husband struggled with it all but we have come through it closer than ever.

    Five months after surgery, I'm well on my way to feeling great again except I now have a lot more confidence than I did before my operation. If I can get through that I can do anything. I feel I will have a better life than I did before as I worry less and enjoy everything more. I am very lucky to have had treatment and a chance to live cancer free and see my little boy grow up. I am much more laid back and we have a lot of fun. I went on holiday three months after my surgery and for the first time in my life I felt confident on the the beach in my bikini which is crazy as for the first time in my life I had a big scar and no belly button something I should have felt self conscious about but I didn't I felt proud of my body for getting me through such a huge operation!

    Georgina shares her story with Pseudomyxoma SurvivorI feel great. I was worried about catching colds and things without my spleen but I'm as healthy as I was before. My son and husband have caught colds but I have not which is normal for us. I have caught a sickness bug from my son since surgery but I recovered quickly with no problems and again compared to what I've been through, it felt like nothing. I got over it much quicker than I would have before. I feel stronger than I was. I know everyone is different but sometimes things can workout great.

     Georgina

     

     

     

  2. From time to time on our blog, we like to feature stories from fellow survivors. Today's story is from Mark.

    Mark shares his story with Pseudomyxoma SurvivorIn December 2011, I had five days of stomach unrest and pain which I wrote it off as a stomach bug. In May 2012, I experienced rectal bleeding and I lost five units of blood. From June to August 2012, I had severe abdominal pain of varying durations (but usually hours-long). It felt like knife stabs to my abdomen in waves. I had associated night sweats and nausea with weight loss gradually over this time period.

    Mark shares his story with Pseudomyxoma SurvivorFour different doctors assumed I had Crohn's Disease or some sort of twisted bowel. I was in the emergency room for the tenth time in June and then went in with a mechanical obstruction requiring surgery in mid-August. I had surgery, for my Crohn's diagnosis. This is when they found the cancer. I was given a diagnosis of stage 4, appendiceal cancer with signet cell tumours. I was 56. During the surgery, they removed the signet cell tumour and as much cancer as they could, along with the ruptured appendix. I spent  two weeks in hospital.

    I had surgery #2 in January 2013. This time it was cytoreduction and HIPEC¹ and I was in hospital for approximately 16 days. There were no complications. The surgeons removed my spleen, gall bladder, scraped my diaphragm, removed 5" of intestine and I was given a temporary ileostomy.  Surgery #3  was in March 2013 which reversed the ileostomy. This time I was in hospital for around eight days with one complication (ate solid food too soon) and had NG tube replaced for a day. I then had 5 more sessions of chemotherapy (FOLFOX, 5FU, etc²), ending mid-Jun 2013.  I've had no complications since!

    Oct 2013 marked the return of the cancer defined by small nodules, cramping, and elevated tumor markers. I was put on further chemotherapy, Xeloda³ (2500 mg/ day).

    On the 'good' side, having this disease, has made us re-think life priorities and what is really important. One of our cancer friends said that cancer is 'a gift wrapped in barbed wire' because it shows you who your friends are, how strong you are internally, and it forces you to reassess life.

    On the negative side, it makes you feel like a deer, grazing in the woods. Deer constantly get startled and 'freeze' every time they hear a strange sound, ready to flee danger. For us, every ache, every strange pain creates an ominous fear and foreboding that the bad old days are back. Unlike deer, you can't flee your emotions and your worries, the 'looking back over the shoulder' at Death possibly stalking you. Optimism sometimes takes a back seat.

    For support, my (nurse) wife was and is my #1 caregiver and support person. I also had a good group of colleagues who brought dinner, checked on me, and even took me to the infusion centre on days my wife was working. I'm not sure how other families deal, but cancer made us (me, especially) turn inward and try to fight this in a small family setting, rather than inviting many others to help or come visit.

    My health is very good at the moment, all things considered. I am still on chemo but the recurrent cancer is seemingly microbial and controlled -- for now. The Xeloda causes a "hand-foot syndrome," which makes the extremities red, raw, dry and painful. The pills also cause sensitivity to sun, diarrhea, acne on the face (I'm a teenager again!) and neuropathy, so six of my fingers are essentially wooden doorstops at this time.

    All that being said: my markers are now all normal, the nodules are gone, and my last four scans have been clear as a bell. If taking five pills a day lets me be normal (the 'new normal' that cancer patients deal with), then I am almost back to pre-cancer health and the future's looking bright!

    What would I say to others? Firstly, research without being obsessed about statistics and horror stories. Know your enemy. At the same time, realize that everyone is different. I was given six to nine months to live, but I beat the odds and feel great. Find out what you can from others on the web, support groups, and so on but realize you are different from everyone else; their results probably will be slightly different than yours.

    Secondly, I have followed the four virtues to weather the storm:

    • have faith;
    • have perseverance;
    • have patience;
    • and have a good attitude.

    I visit various churches and cancer support groups and have a half-hour talk extolling these four virtues (the talk is on my blog; see below). These have been essential in my fight!

    Lastly, there's a line from a Bruce Springsteen song: 'You've got to learn to live with what you can't rise above'. Appendix cancer (in the advanced stages) almost always comes back. So deal with life a day at a time and just accept your lot. I can't wish away my cancer, but neither will I let it restrict me in what I do or where I go. As we say, 'You play the hand you're dealt'. I believe that as long as you follow those four virtues up above and make the Grim Reaper cash in his chips for the moment, you've won the hand. The old days are pretty much a memory if you're enduring PMP, but we can all craft new ones. NEVER give up.

    Mark shares his story with Pseudomyxoma SurvivorYou can read my CaringBridge blog (great for insomnia!) on http://www.caringbridge.org/visit/markfassio. The first year's entries (pages 80 and later) really give insight on the initial feelings and fears when diagnosed. They are probably the most introspective. The more recent pages are pretty fluffy and not always cancer-related, because it's hard to update your health when you always feel the same way.

     Mark

     

    ¹HIPEC - Heated Intraperitoneal Chemotherapy

    ²FOLFOX - combination chemotherapy treatment  made up of the drugs

    FOL = Folinic acid (also called leucovorin, FA or calcium folinate)
    F = Fluorouracil (5FU)
    OX = Oxaliplatin

    5FU - Fluorouracil, known as FU or 5FU, is one of the most commonly used drugs to treat cancer.

    ³Xeloda - the brand name for the chemotherapy drug capecitabine.

    You've got to learn to live with what you can't rise above is quoted from the song Tunnel of Love. Springsteen, B. (1987) Tunnel of Love. Columbia

  3. We are absolutely thrilled to announce that our wonderful patron, and son of our iconic PMP angel Audrey Hepburn, has been invited by EURORDIS to continue his Rare Disease Day Ambassador role into 2015.

    Having been appointed as Rare Disease Day Ambassador 2014 by our very own CEO Dawn Green, Sean had the following to say:

    quoteopenOn January 20, 1993, my mother, Audrey Hepburn, passed away from a rare type of cancer – Pseudomyxoma adenocarcinoma. When we found out that the only tentative treatment was a chemotherapy (5 fu leucovorin) available since the 60s, we, her family, truly connected with the fact that this disease was not a priority for Big Pharma. The most precious person we knew could not be saved.

    So, when Dawn Green, CEO and founder of the ‘Pseudomyxoma Survivor’ Charity and herself a one in a million cancer survivor, nominated me to be the ambassador for Rare Disease Day 2014, I knew that, not only did she have this rare cancer but also a rare ability to transform darkness into light and smile in the face of adversity.

    ‘Rare’ is a word most often used to convey the same values as  ‘precious’… unique… valuable. And if one adds up all of us precious beings that suffer from a ‘rare’ disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, I feel it is quite easy for any of us to relate to ‘rarity’… that rarity that comes in those moments when we must truly face life and adversity by ourselves.

    When my mother visited Africa for UNICEF she would often say; “we cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…” It is in this spirit that I accepted this invitation.

    The gift of Audrey Hepburn to the silver screen… to style and, ultimately, to humanitarian work was ‘one in a million’… and so was the disease that took her from us.

    I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with.

    quotecloseThank you,

    Sean Hepburn Ferrer

     

     Sean Hepburn Ferrer and Pseudomyxoma Survivor's Dawn Green

     

  4. pmprf

    We are delighted to announce that following recent collaborations with the PMP Research Foundation (PMPF) based in the USA, we can now officially reveal that we have achieved the status of partner organisations.

    Our individual organisations aims and objectives and our passion for the cause compliment each other beautifully, and we are delighted to be joining forces.

    The PMP Research Foundation awards grants for research and organises educational programs worldwide. For further information on the work that PMPRF does, please click on the following link:

    http://www.pmpcure.org/