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Category: Surviving with PMP

  1. John's Story (part 3)

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    John has shared with us his initial diagnosis and his stay in hospital.  Now he continues his story.

    I was 59 years old when I was diagnosed with pseudomyxoma peritonei (PMP) and it took me eight months to get a diagnosis. I had surgery in June 2013 and I was discharged from hospital on Day 13.

    Over the next ten days following my discharge from the hospital, I was visited by the district nurse and the doctor twice.  I had had problems with my back and could not get comfortable.  It was suggested I had something called 'Table syndrome' which was due to the time I had spent on my back during the operation and in intensive care and the hospital ward (being that it was impossible to lie in any other position than on my back).

    John shares his story with Pseudomyxoma SurvivorThe doctor instructed my wife in how to massage my back and this became indispensable since every time I ate I also ended up with indigestion even though on medication.

    The district nurse would tend to my dressings and also inject me every day with an anti-coagulant.

    By the end of the third week after the operation, the staples were removed in two stages to ensure the wound did not rupture.  I was told to cream the wound everyday.  I never had any problem with the wound and still cream the scar after several months.

    One further complication was gout.  I have suffered from gout for 13 years.  I have not had a major crisis in over 6 years and I am on daily medication.  During the first 10 days in hospital I was not allowed to take the medication and by the third week I had started to experience severe gout.  This lasted for a further 3 weeks.  I was already suffering from diarrhoea and the crisis medication always brings on diarrhoea therefore I was still losing weight during this period and I could not walk. The doctor came to see me and prescribed a different treatment which in reality was no better.

    Eventually this subsided and I was able to exercise and start to move.  I had problems with shortage of breath, back ache (as explained), nausea, diarrhoea, stomach pains and also I found it difficult to urinate.

    This last issue was a reason for me visiting the doctor. He thought it was a urine infection. I was sent for an ultrasound but this confirmed it was not. Unfortunately the doctor doing the ultrasound could not see all of the organs because of the inflammation and I thought we were still talking of liquid in the abdomen. Eventually after 5 weeks this subsided and now it is fine.

    Concentration was also a problem; I was able to watch television but reading was a problem as was trying to do anything on a computer.

    In August, I returned to see the Professor.  He was just interested to see my general health since he had nothing really to go on since I had not been scanned.  The whole thing just took 15 minutes and we arranged a scan for the November and a follow up appontment for five days after that.

    On the November 12th 2013, I was told that the scan showed that everything was clear – Thank God!! – But also thanks to the professionalism of the French team – I cannot fault them at all, from the district nurses all the way to the Professor himself.

    Professor Pezet has now booked another scan in 6 months’ time.

    I still have problems with my bowels but this is gradually improving.  I had prepared myself for a recovery time of five weeks. I never anticipated three to four months.

    I had problems sleeping.  Because I was lay on my back for so long and could not get comfortable, I slept on the couch for four weeks.  Each time I tried to go back to bed I would wake at about 2.00am and that would be it for four hours.  Even when I decided to try bed again it was a separate bed because I did not want to disturb my wife.  It took three months before I got back to normal

    I think some of these issues were also related to frustration – not being my normal self and no matter what my wife or friends or the doctor said – it did not make it feel better. The saying “only time can heal” is true.

    What do I feel now? LUCKY!!!

    Knowing that this is a silent killer, I was in the right place at the right time.

    • The fact that I had kidney stones – with all its pain – really helped me out because without them it is highly unlikely I would have been diagnosed
    • The fact that I lived in Clermont-Ferrand – one of the two major centres in France for this treatment – was fortuitous
    • The fact that I live in France with an exceptional health service meant that once diagnosed the time for reaction was weeks. Alos the persistence of the consultants meant I was progressed on a regular basis

    What advice could I give to others?

    Get a body scan!!  We do not know what is in our body sometimes.  We feel pain, we can feel growths but that does not tell us exactly what is happening; I would advise anybody now to get a scan at 45 and 55 and invest in this form of diagnosis.

    In terms of cancer support – this is a hard question?  I preferred to go it “blind”.  I did not want to read all of the dialogue or information on the subject.  I read a few of the survivor’s stories just to see if there was really a survival rate.  I also believed in my doctor who told me they could treat it and that most likely I would survive.  You have to have that trust.

    I think people should seek out advice and advisors should judge what to say based on the emotional state of the person in question.  The doctor has already told the patient the problem – the patient now needs support in whatever form through the period of time.  My advisor and councillor was my wife – she was there to listen; there to give a response and there to make me feel secure.  Not all people are capable of this support which is why a network of experience is required.

    - John

    A big thank you from us to John for sharing his story.  If you would like to read more stories of survival, please visit our Survivors' Stories page.

  2. Miranda shares her story

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    Today's guest blogger is Miranda, from Sydney, Australia.

    Miranda shares her story with Pseudomyxoma Survivor

    Miranda shares her story with Pseudomyxoma Survivor

    My initial symptom was a tiny pain (feel like pins & needles) from my lower abdomen, it only last a couple of seconds, it came and went.  I was a healthy, active mum filled with energy and a busy life style.

    This discomfort did not stopping me from doing any thing including my regular active sport - badminton. I ignored this tiny pain didn't think it was a sign of a disease until one year later, during my long Christmas break, planning to spend some lovely time with my kids, and pampering at the same time. I decided to go to check it out.

    The ultrasound picked up some abnormality from my abdomen - it shown cystic masses in both ovaries.  The blood test results showed three out of the four tumour markers were elevated.  The diagnostic was treated as ovarian cancer.  I had debulking surgery where it was found that I had stage 3 pseudomyxoma peritonei (PMP).


    I then had further cytoreductive surgery, I was so lucky that the surgery was performed by Prof. David Morris who is one of the world expert in this procedure.  I was given HIPEC¹ during the operation and EPIC² after the operation for one week.  I had post surgery complication by a chyle fistula.  I was treated with octreotide and total parenteral nutrition (TPN) throughout the periods at the hospital, I was at the hospital for 5.5 weeks.  The operation left me with a stoma, I had a reversal after 5 months.

    Emotionally, I was affected every time I faced my children, particularly my son who has Autism. He relied on my care.  For support, I turned to my family and colleagues from work, community nurses.  Most importantly, I found Kay and she introduced me to the PMP support group.  This group had given a strong support during my darkest time!

    My health is fantastic now, I've returned to my normal life and be surrounded by families and friends. I was able to get back to my regular favourite sport - badminton - and I went back to work just four weeks after my stoma reversal operation.

    If there are three things that I would share with fellow patients, they are:

    • Be strong and confident, just thinking of your children, that they need your care
    • Talk to the PMP support group, they will spiritually assist you and build up your hope - you are not alone
    • Be happy and stay healthy.

    Miranda shares her story with Pseudomyxoma SurvivorI trust my surgeon, Prof. David Morris, who is based at the St George Hospital, Kogarah, NSW, Australia.  I am so thankful that I was placed under his care, he has saved so many lives!

    - Miranda

    If you would like to read more stories, from survivors like Miranda, please visit our Survivors' Stories page.

    1. HIPEC, heated intraperitoneal chemotherapy
      Chemotherapy given directly into the abdomen during surgery.  It is usually heated to 40C.
    2. EPIC - early post-operative intraperitoneal chemotherapy
      Chemotherapy given directly into the abdomen after surgery
  3. A Caregiver’s Prospective

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    It is very easy for us to focus on the patient as being the person affected by pseudomyxoma peritonei and also very easy to forget the effect that a disease such as this has on friends and family.  Today, our guest blogger is Therese.  Her husband Keith is the patient and she shares her perspective:

    Therese shares a caregiver's perspectiveMy husband, Keith, was diagnosed with Appendix Cancer, mucinous adenocarcinoma and carcinomatosis in October 2010.  Like everyone reading this, we were shocked that there was such a thing as appendix cancer.  While we loved our local oncologist and his treatment consisted of treating this as it were colon cancer* he was very gracious in sending us for further opinion and not at all intimidated that he really had no clue about pseudomyxoma peritonei.

    Therese shares a caregiver's perspectiveLong story short, it was through internet research that we learned this cancer is “rare” – “one in a million” “incurable”– and further reading brought us information about cytoreduction and HIPEC, a possible chance at a cure and if not a cure, an extension of life.

    As a caregiver, I have found my role to be almost as imperative as the patient because often times the patient is so stunned by the prognosis that they can’t think straight.  Don’t get me wrong; when we first found out about Keith, there was a period of about six weeks in which I was barely functioning.  I didn’t want to lose him.  He was 55 years old and we had a lot of living left to do.

    But I took the role of information guru – I learned the lingo, the drugs, the surgery and I put into layman’s terms the best I could so that Keith could understand and make informed decisions.  We traveled the same road as all of you reading this – with hope and with purpose.

    After Keith underwent six months of chemo with none of them helping to shrink or even keep the tumors at bay, he went to a Surgical Specialist.  There was some concern that his name wasn’t on the “list” of surgeons but once we met him and he told us he had been doing the surgery for over 8 years, though scared, he put Keith’s mind (and mine) at ease by explaining the disease in detail, how most of patients have done post op and what statistics were (for him).

    Keith had cytoreduction and HIPEC on July 1, 2011. His surgical score was a “1” which meant though there was some millimeter tumor on the small intestine; the hope was that HIPEC would eradicate those tumors.  It was not to be.  Within 3 months the cancer had returned. Keith began different targeted therapy regimes to no avail.  By the six month, it was determined that chemo should be stopped as it had no benefit other than to weaken him.

    As a caregiver, I watch him closely. I live life with him. I hold on to what has been given to him; an extension of life and an amazingly good extension! I am here to hold his hand, give him his meals, tell him how proud I am of him, love him and thank God for him every single day.  This man, who has cancer throughout his peritoneum and pelvis again, extensive tumor on and between small intestine, liver, diaphragm, etc., never complains.  He goes about his daily routine without worrying too much about tomorrow because we are living for today.  We know that statistically things may change at any time but we do our best not to let that stop what today has given us. Today has given us an opportunity to make new memories, even if those memories are just sitting together in our family room looking at the TV or sitting behind our computer screens.  As his caregiver, as his wife, it is my responsibility to make sure that he has the best care possible and I will continue to give my all to him. It is also my faith that sees me through the troubling times – we are all here on this plain for such a short while.

    - Therese


    *Local oncologists will tell you this cancer is treated like colon cancer. We have never been hung up on that verbiage because in all honesty, there is no known protocol for appendix cancer and pseudomyxoma peritonei other than cytoreduction and HIPEC or IPEC (or EPIC). There are no chemo drugs specific to appendix cancer, but the ones used for colon cancer do appear to help some patients and that is why I believe these doctors say they will treat it like colon cancer.  Treat it = chemo.Therese shares a caregiver's perspective

     

    If you would like to read more stories, please visit our Survivors' Stories page.

  4. Lynne's Story

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    Lynne shares her story with us:

    Survivor Lynne shares her story with Pseudomyxoma SurvivorSurvivor Lynne shares her story with Pseudomyxoma SurvivorBefore I was diagnosed, I suffered from abdominal pain and tiredness.  I felt full quickly after only eating small amounts.  I saw various doctors who gave me a diagnosis between appendix, ovaries and bowel but no firm diagnosis.  Eventually, the colorectal doctor forwarded my CT scan on to the Basingstoke and North Hampshire hospital after I complained of pain in abdomen after jogging.

    I have had my appendix removed and my right ovary so tumour removed from there. I have had no further treatment so far and am currently on watch and wait.

    After receiving a cancer diagnosis, I was devastated at first as I am a single parent and the thought of not being there for my daughter was worse than thinking about what surgery lay ahead of me. I was angry also as just two weeks earlier had just found out I had passed my nursing degree.  Now though I have learned to take one day at a time and stop worrying about the future so much.  I just enjoy time now whilst I am fit and healthy.

    Survivor Lynne shares her story with Pseudomyxoma SurvivorMy advice to others would be don't read too much on the internet as each case is different and you will only scare yourself, enjoy life as we are only here once and talk about your feelings - don't let things build up.

    To read more stories like Lynne's, please visit our Survivors' Stories page.