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  1. A pseudomyxoma survivor herself, Jo shares her story on her own blog and has kindly provided our guest blog for today.

    Pseudomyxoma Survivor Jo shares her storyWe were on holiday in Thailand when I noticed that it hurt when I laughed.  When I got home, I thought I'd just eaten too much - my belly was getting bigger.  So I started exercising more, but it didn't go away - in fact, it seemed to be even larger.  And I started feeling sick after meals and it jolted in a weird way when I stepped heavily. But I still felt pretty healthy...

    Pseudomyxoma Survivor Jo shares her storyAfter endless tests and appointments, I was told they were 'looking for cancer' - possibly ovarian or peritoneal. But after my biopsy they told me it was a form of pseudomyxoma peritonei (PMP), an incredibly rare cancer originating from the appendix.

    I was admitted to C2 ward at Basingstoke & North Hampshire on August 13th, 2013 for complete cytoreduction and HIPEC¹. My surgery was two days later and took 10.5 hours.  They removed my spleen, appendix, omentum, ovaries, gall bladder, a section of the large intestine and the peritoneal lining.  After surgery the morphine and pain meds really mucked with my head and I experienced hallucinations and paranoia - this was the worst of my experience.  I had five days of intraperitoneal chemo, after which they removed the tubes. I was in hospital for just over three weeks.  It hurt a lot.  The nurses and surgeons were absolutely fantastic and I couldn't have asked for better care.

    How has my experience affected me emotionally and physically?  It is an ongoing process.  Initial shock and terror gave way to dealing with practical matters and concentrating on getting better.  You don't expect to be diagnosed with cancer at 34, especially when you felt pretty healthy beforehand.  I have got used to having had cancer, but future issues such as whether it will return, and the impact it has had on my chances of having a family - I'm still working on these.

    In terms of support, my GP was fantastic and the Specialist Nurses at both Basingstoke and the Churchill in Oxford have been great.  My partner and family have been wonderful.  I also visited the Maggie's centre in Oxford which was useful.  Writing a blog helped keep friends and family updated, and meant I didn't have to go through the whole thing a million times.

    Now, I am six months post-surgery and have two more chemotherapy infusions to go.  Apart from the chemo, I feel pretty well and although still not at peak fitness or health, feel pretty positive about the future.

    My message for others is:

    • PMP is not like other cancers. It doesn't spread in the same way and it is (relatively) slow growing. So don't panic if you don't get treated right away - it's better to have the right treatment than be done quickly.
    • Pseudomyxoma Survivor Jo shares her storyIt will take a long time to feel normal again, but you will get there.
    • No one will have ever heard of Pseudomyxoma - get used to explaining what it is.

    - Jo

    You can follow more of Jo's story on her blog - http://jocancerdiary.wordpress.com/ and more stories from other survivors on our Survivors' Stories page.

    ¹HIPEC - Hyperthermic Intraperitoneal Chemotherapy.  Heated chemotherapy, delivered directly into the abdomen, after complete cytoreduction. If the surgeons are able to remove the all the tumours, you will be given a heated chemotherapy drug. This is usually Mitomycin C. This is put directly in your abdomen while you are in theatre and the chemotherapy is left in for 90 minutes. HIPEC will penetrate tumour nodules up to 2.5mm in size. The heat increases cytotoxicity of chemotherapy.

     

     

  2. We have been extremely blessed to have several of our supporters choose to donate to us in recognition of the no make-up campaign and have so far had donations reach over £480 in just over 48hrs!!!

    Thank you to everyone who have chosen to pledge their donations, and for those of you wanting to join in with this please text "RARE01£3" to 70070 to help us continue on our mission to raise awareness of pseudomyxoma peritonei and provide invaluable support to fellow pseudomyxoma survivors.

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  3. 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.