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  1. Julie, from our support group, shares her story:

    Julie shares her story of survival with Pseudomyxoma SurvivorMy 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.

    pseudomyxomasurvivorjulieWhat 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.

    Julie shares her story of survival with Pseudomyxoma SurvivorIt 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.

  2. 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.

  3. 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!