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  1. Milton, from our support group, shares his story:

    Milton shares his story with Pseudomyxoma SurvivorAt the end of 2007, I began to realize that the circumference of my belly was growing. I never paid much attention to it, thinking it was something related to my age.

    milton shares his story with Pseudomyxoma SurvivorSome months later, a swelling near my navel began to reveal a hernia. Its rapid growth led me to a gastroenterologist in June.

    The doctor was more astonished with the size of my belly than with the hernia. He asked if I drank a lot, thinking it was a liver problem causing accumulation of fluid in the abdomen. He requested an ultrasound, which revealed the presence of intense ascites. There seemed no other abnormalities.

    Facing the result, I was referred to a hepatologist. Nothing further was discovered.

    Exploratory surgery was suggested. During the procedure, the hernia would be corrected.

    Surgery revealed a mass of tumor tissue, which was sent for pathological examination. It was the extremely rare Pseudomyxoma Peritonei.

    My physician, in the 30 years of his career, had never encountered the disease. But, recently, had attended a lecture at the Sao Paulo Cancer Hospital where one of the topics was exactly PMP. On this occasion, the physician-speaker spoke of his 10 years experience with the disease and how he had learned a revolutionary surgical technique with an American surgeon, called Paul Sugarbaker.

    I made an appointment with him immediately.

    At this meeting, I learned that the cancer had originated from a tumor in the appendix that on rupturing had spread cancer cells throughout the abdomen, implanting themselves on the surface of organs. According to the doctor, a long surgery for over 10 hours, would conduct a complete cleaning of all tumors and visible implants. After the surgery, a chemotherapy "wash" for 90 minutes and at 41º C, would destroy any microscopic tumors.

    The doctor informed me also that in 10 years his team had performed about 100 surgeries, with success rates similar to other specialized centers worldwide.

    I was taken to the operating room at 7 o'clock in the morning on November 9, 2008. At 11 o'clock that night, I was admitted to the ICU, already without my spleen, peritoneum and gallbladder. Very importantly, my stomach, liver and intestines remained intact and free of disease.

    In total, I was hospitalized for 21 days. Hallucinations and weakness were the highlights of this period. I had no pain or secondary infections or blockages or other traumas. Despite the constant interruptions for medications and x-rays, I managed to sleep well in my hospital bed. Excretory and urinary systems soon returned functioning almost normally.

    Once back home, I suffered for three months from weakness and a lack of taste. The effects of chemotherapy often left me nauseous and sleepy.

    But by April, had already resumed most of my activities at a moderate pace. I began to recover my lost 15kg, and was able to walk increasingly longer distances, eating returned to being a pleasure and I worked part-time.

    In July, I started running. Incidentally, something I had never done before.

    I was willing to take the best possible care of my physical body and eat as healthily as possible.

    For the first year I did CAT scans and x-rays of the lungs as well as blood tests every three months. Subsequent amendments have broadened the interval to six months.

    In late 2011, I had my first colonoscopy in 3 years.

    All tests were normal.

    Incidentally, I became a fan of running. Today I am able to run 40km a week.

    Besides a lot of luck and the great skill of the doctors that I attended, I have tried to collaborate with medicine by exercising my body, eating healthily, and by maintaining a positive mental attitude with less stress in relation to life.

    I think it is not a magic formula for health, but, I feel more active and participate in the exercise of survival that is part of a day-to-day routine for all of us who were diagnosed with this disease.Milton shares his story with Pseudomyxoma Survivor

    Above all, I think my case is just another, along with many others, showing that there is hope and perspective after PMP.

    - Milton


    Ro read more stories like this, please visit our Survivors' Stories page.

  2. Kira shares her story about Pseudomyxoma SurvivorWhen my mother was diagnosed cancer, I was very young. I saw my mother as a friend rather than a mother, we did everything together. I would often tell my mother about things with great enthusiasm.

    Kira shares her story about Pseudomyxoma SurvivorWhen she had to go into hospital and I couldn’t contact her, I started using the laptop as a way of getting over my depression. I became addicted, I forgot about my sadness.  But I would get sad again when I went to go and tell my mother something, only to remember she wasn’t here. But I would Roleplay with people online, pretend to be someone else to forget my problems. I made a few friends, and one really close friend, but I was truly lonely.  School was no help, I’d lose my temper a lot easier and people would pick on me more because I was weaker. I only had one friend I could depend on at school; I couldn’t even depend on my teacher. I’ve kept this addiction to the computer ever since, I get violent easily if the internet or computer is turned off. Just because my mother was gone for a month.

    I never wanted anyone to go through something like this again so when we had to pick and research a charity of our choice, I immediately went for Psuedomyxoma Survivor.  We had to prepare a speech and present it to the rest of our form.  There would be a vote and the winner would have to give their speech to the whole of Year 8.  The winning charity from this owuld be the one that we would raise funds for.

    I used a lot of personal experience and facts in my speech to my form, but I didn’t win in my form. Another group won (most people worked in groups). However, they didn’t want to speak in front of the whole of Year 8, so second was chosen. Pseudomyxoma Survivor. Me. I later did my speech to the whole of Year 8 and had to wait for ages for the results. When I finally heard the results that the top three charities had been selected to raise money for and hearing Pseudomyxoma Survivor is one of them, I was extremely happy but it hadn’t hit me properly yet. It was only when I told my mother when it finally hit me and I cried with happiness.

    One of the teachers said: “Put your hand up if you knew what PMP and Pseudomyxoma Survivor was before the assembly.” Obviously, only my close friends put their hands up.Kira shares her story about Pseudomyxoma Survivor

    “Now, put your hands up if you know what PMP and Pseudomyxoma Survivor are.” The whole year group put their hands up. “I think Kira did an excellent job and has been so brave to do it by herself.”

    - Kira

    A big thank you to Year 8 at Colmers School and Sixth Form College, and especially to Kira, for all the support!

  3. Today's guest blogger is Julie.  Julie has been lucky enough to secure a place in the 2013 Virgin London Marathon and has pledged to raise funds for Pseudomyxoma Survivor and to raise awareness of PMP by so doing.

    quoteopenI will be running the London Marathon this April. This will be a huge challenge for me, particularly since I don’t think I have really ever run more than 8 miles. This means that I have another 18 miles to train for. Gulp!

    With this in mind, I thought this was the perfect opportunity to raise money for my chosen charity, Pseudomyxoma Survivor, and get you guys involved, especially since I know many of you are setting New Year’s goals now. What great timing, eh??

    My challenge to you, if you choose to accept it, is to cover the distance of the marathon in a preselected period. Don’t be scared, I don’t mean how many hours you can do it in, but… believe it or not, in how many days or weeks. You are more than welcome to walk, run or do a bit of both, as long as you complete the distance of 26.2 miles/42 km. When you do, you can spare a thought for me who will have to do it all in one day!

    This is what I propose:

    Run, walk, crawl 26 miles/42 km in a predetermined period.

    For example:

    42km in 4 weeks = 10.5km/week
    42km in 8 weeks = 5km/week + 2 bonus km
    42km in 12 weeks = 3.5km/week

    It is entirely up to you as long as how you do it is a personal challenge to you.

    All you have to do...

    1. Get friends and family to sponsor you and give you encouragement. You can get your sponsors to sign the sponsor form provided or they can donate via JustGiving. This way, all the money we raise will all be in one place and we can all see how much our efforts have helped
    2. Get a friends and family involved in the challenge to make it more social and to help raise more funds (I know some of you are competitive)
    3. Each time you go out, log your distance and the time it took you to complete it
    4. It would probably easier to keep track of on a treadmill but you are welcome to do the challenge outside if you have a GPS unit like endomondo or map my run. If you have a running app, it may be worth mapping out a set distance for you to do each time you go out to make your challenge achievable. As you complete your distances, let me know as I am going to display a “marathon” board to display how everyone is getting on in their marathon
    5. Julie's 2013 PMP Marathon ChallengeOnce you have completed the total distance, add up your time and that will be your personal marathon time.

    Most importantly, have fun and don’t give up. You can do it! It doesn’t matter how fast you do it as long as you have fun, get fit and help a worthy cause. If you have any questions please feel free to contact me.

    - Julie


    If you are interested in taking part in the 2013 PMP Marathon Challenge, please contact Julie via email, jtraupe@yahoo.com.  Follow team progress either here on the website or on Facebook.  T-shirts and other merchandising are available from our Zazzle store.