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  1. 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

  2. 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

     

  3. 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/

  4. Baltimore firehouseWe are thrilled to report that our very own founder and CEO Dawn Green has been invited to participate in this year's "Heat it to Beat it" event in Baltimore!

    Pseudomyxoma Survivor has also kindly been offered an awareness table at the event and Dawn has also been invited to give a small presentation before the event gets underway!

    The wonderful Dr Sardi organises this 2.2mile sponsored walk yearly in conjunction with the Mercy Medical Centre for awareness, education and research into peritoneal carcinomatosis.

    We feel incredibly honoured to take part, feedback from Dawn to follow over the weekend!

     

    It's not too late to sponsor Dawn ....
    https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1108044&supId=412192213.

    To find out more about Heat it to Beat it, please visit http://heat-it.org.