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  1. 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. Following on from his post about his initial diagnosis, John shares his treatment story with us.

    John shares his story with Pseudomyxoma SurvivorI was 59 years old when I was diagnosed with pseudomyxoma peritonei (PMP) and it took me eight months to get a diagnosis.  Following this, events moved along apace.

    I was initially given a date of the June 3rd 2013 for my operation but this was delayed by one week. Here in France, work is assessed on a priority basis with patients normally given state the week of the operation and not the date until the Friday before.  At this stage they decided to delay and give me a new date a week later.

    On the following Friday, I was given a date of entry of June 9th 2013.  On entry that day they asked me to shave and scrub myself.  I prepared myself that night by shaving from just above my biceps down to the groin.

    I was wheeled into the preparation theatre at 8.00am on June 10th 2013 and the anaesthesiologist tried to give me an epidural – it seems this was not successful but I do not know since I passed out.

    That afternoon, after an operation lasting eight hours, I was transferred to Intensive Care. I had two drains, one on the left and right for my abdominal cavity.

    John shares his story with Pseudomyxoma SurvivorThe next day it was explained to me that I had had my appendix removed, part of the liver removed, all of the mucin.  All the organs in the cavity were scrapped in order to ‘clean’ them.  In addition, I had also had part of my intestine removed but the good news was the cancer was not advanced as initial thought and I did not have a colostomy.  Thus no need for a second operation.

    I was in intensive care for five days. I had a multitude of different medicines fed by a drip and these were progressively removed during that time.

    The first night I asked to go to the toilet but was told it was okay since I had a catheter inserted in my penis. Strange sensation!!!

    The second day I was asked to get out of bed to move around and this was possible for 15 minutes. I tried to eat something but I just felt nauseous all the time.

    The third day it was found I had fluid on my lung and another drain was inserted – this was the most painful experience during that first week.

    Again I was not feeling hungry and ate hardly anything.  Because of the third drain I was not able to get out of bed.  The fourth and fifth days were similar – I did not get out of bed and hardly ate anything.

    During the time in intensive care, I had an X-ray every day and a bed-bath every day.  My stitches were inspected and treated every day.  On the fifth day they were left open to allow air to get to them.  In all I had 44 metal staples on the outside and I was told about 80 stitches on the inside.

    I was lucky in that during those five days I was in intensive care I did not have to evacuate my bowels thus allow the healing process to continue unheeded. The downside is that I lost over 14 pounds during that time.

    Because of the constant pain I found it difficult to sleep and was on self-medication (morphine drip) during this time. The dreams I had were weird, it was almost like an out-of-body experience.

    At the end of the fifth day I was transferred to the ward which was a private room.  The X-rays continued every day and I was allowed to stay on morphine for another 3 days at which time the drip was removed. I was questioned every day as to the level of pain and feeling and my medication was adjusted accordingly.

    I was able to evacuate my bowels for the first time on the 6th day.  I could not face the hospital food and my wife would bring in for me two meals a day (I did eat the bread and jam in the morning).  Even then I could not face a full meal because of the nausea.

    By the end of the ninth day, the anaesthesiologist suggested I have a tube inserted so that I could be fed with vitamins to supplement my diet since I was losing weight.  I suppose a little like ‘foie gras’ and force feeding.  This was horrendous since my throat was already swollen from the operation and I was heaving all of the time.  After two hours, I started to vomit and it was decided to remove the tube.

    By the end of the tenth day the first drip was removed – the one from my lung John shares his story with Pseudomyxoma Survivor– this was an enormous relief because this constantly give me pain.  By the end of eleventh day the second drip was removed.  By the morning of the thirteenth day the third drip was removed and I was discharged the same day!

    - John

    John will be back in a later blog post to share more of his experiences with us.  To read more stories like John's, please visit our Survivors' Stories page.

  3. Salena's brother Colin had Pseudomyxoma Peritonei (PMP).  Sadly, he passed away ten years ago on 22nd November 2013 having been diagnosed on July 1st of that year. He was aged just 33 years.  Salena and her family decided to carry out activities to remember Colin's life ten years after he passed.  Searching the internet, Salena was so pleased to discover that there is a charity supporting people affected by Pseudomyxoma and to see the Salena runs the 5k Great Winter Run for pseudomyxoma Survivor and the Christiewords "Pseudomyxoma" and "Survivor" together.

    As part of her training for the Great Manchester Run in May, which she is running with a friend, Salena took part in the 5k Great Winter Run.  She tells us

    Salena is supporting Pseudomyxoma Survivor

    The 5k Great Winter Run was a difficult one with an impressive route at Edinburgh's Holyrood Park.  It was a great atmosphere and I felt quite emotional, running with Colin's name and picture on my bib for the first time.  I managed it in 27:13.  I'd liked to have done it in 25 minutes but am letting myself off as I'd just turned 42 on Friday and have only been running since last summer!  My friend Caroline was there to cheer me on and was apparently in tears as I set off.  My friends were incredibly fond of my brother too and have been very supportive of my recent efforts to raise funds and awareness in his memory.Salena is supporting Pseudomyxoma Survivor

    - Salena

    Salena also ran the Trailtroopers 10k at Finlaystone Country Park and Glasgow Uni 5 mile Road Races in November.  She is abseiling 140 feet at Old Trafford for the Christie Hospital on March 23rd and undertaking a Race for Life 10k at Hopetoun House, South Queensferry on 4th May, in preparation for the Great Manchester Run.  Phew!

    To show your support for Salena and in memory of Colin, please visit Salena's JustGiving page.

  4. As you probably know, February 28th was Rare Disease Day (think we mentioned it enough times?).  Today's guest blogger, Mel, had the brilliant idea of using Rare Disease Day as an opportunity to raise some awareness of pseudomxyoma peritonei in her workplace.

    Pseudomyxoma Survivor Mel shares her Awareness Raising activities on Rare Disease Day I decided to use Rare Disease Day as a way of raising awareness of pseudomyxoma peritonei (PMP) and raising funds forPseudomyxoma Survivor Mel shares her Awareness Raising activities on Rare Disease Day Pseudomyxoma Survivor at the same time.  I ordered some leaflets and a poster from the web site and used them to create a display in our staff canteen area.

    I created my own poster and "came out" to my fellow work colleagues about having PMP and how rare it is.  The reaction I received from them was overwhelming (which even resulted in me giving them a small talk about it in their lunch breaks!).  Of course, no one had heard of it (apart from one of my colleagues who has a cousin that had his MOAS¹ in October, such a small world!!) and they were surprised that only two hospitals in the UK specialise in treatment.

    I had a lot of sympathetic "We didn't know you were ill" comments to which I gave them my normal reply of "Well, I'm not".  I left them some leaflets to take away and I hope that by bringing it to their attention that they will spread the word and get people the early diagnosiquotecloses they need.  Oh and one other thing… I had over £90 of donations for raising awareness that day which brings my JustGiving page total to over £500 in just two weeks!! 

    - Mel

    We would like to say a huge "Thank You" to Mel and she has certainly given us some ideas about what we could do for the next Rare Disease Day! You can support Mel by visiting her JustGiving page.

     

    ¹MOAS - 'Mother of all Surgeries'.
    This is a nickname for the big cytoreductive surgery - full peritonectomy and HIPEC. It was thought up by the wife of an appendix cancer patient some years ago via her blog.