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  1. 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.

  2. 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.

  3. 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.

  4. We are incredibly excited to announce that we have our very first patron of the charity, following his close involvement with Pseudomyxoma Survivor, Mr Sean Hepburn Ferrer.

    Sean has supported us during our early days and through our development and progression into the strong organisation we have grown to become today, Pseudomyxoma Peritonei survivors are particularly close to his heart as his mother Audrey Hepburn sadly passed away from PMP some 20 years ago.  Following his recent successful invitation to become EURORDIS Ambassador of the year 2014 to represent all rare diseases, we felt that to honour Sean with the title of patron seemed like the most natural progression to further our awareness raising campaign.

    We very much look forward to working together, and want to take this opportunity to thank Sean for all of his support thus far.

    sean gala

    Pictured are our CEO Dawn Green and Mr Sean H Ferrer
    at the recent EURORDIS Gala Dinner in Belgium