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  1. Our blog today comes from Jenesa.  She shares the start of her journey with us.

    Jenesa shares her journey with Pseudomyxoma SurvivorThe most common question I get asked is “How did you know something was wrong?”. So, here’s the story.

    When I was pregnant with my son, I began having excruciating pain in my lower right abdomen.  It was May of 2010 and I was about 21 weeks along.  The first time it happened it was in the middle of the night and it lasted about 30-45 minutes.  The pain continued to occur intermittently throughout my pregnancy.  It would always only last about 30 minutes and was assumed to be pregnancy related pain. On a scale of 1-10 it was a 9.9999999.

    Jenesa shares her journey with Pseudomyxoma Survivor

    After I gave birth, the pain continued to come intermittently.  It was always in the same spot and it was very, very painful.

    I had an exam and a pelvic ultrasound in April of 2011.  Everything, including blood work, was normal.  I also scheduled a physical around the same time and was told I was healthy and it was probably muscle cramps.  I was put on vitamin B-12 injections and continued to put up with these monthly, painful episodes.  At my next annual GYN visit, I mentioned that something wasn’t right because the pain was still going on and always in the same spot.

    She checked me out again and again nothing seemed wrong.  She referred me to a Gastroenterologist.  Upon meeting with him in May 2012, I was told that it was either gas, IBS or maybe even a UTI.

    I point blank asked if it could be my appendix and was told it was not. As the summer went on, the pain seemed to be occurring more frequently.  I went back to the GI Doctor and my GYN in September 2012. I was scheduled for a hysterosalpingogram (HSG)¹ and a colonoscopy².  The HSG revealed that my right fallopian tube was completely closed.  This was alarming because I have had two children and I know it was open in July of 2009 because I had an HSG after an ectopic pregnancy.  The very next day I had the colonoscopy and it was completely normal.

    After talking more with my GYN, we decided it was time to do an exploratory laparoscopy.  On November 13, 2012 I had the surgery and also had an unscheduled appendectomy.  I had NO idea that something was wrong until I was told on November 19, 2012.

    Moral of the story….

    Jenesa shares her journey with Pseudomyxoma SurvivorIf you are experiencing pain, in the exact same spot…. IT IS NOT NORMAL.

    If you feel like something is wrong…… GET IT CHECKED OUT.

    And finally, make sure you trust your doctors.

    - Jenesa

    To read more stories like Jenesa's, please visit our Survivors' Stories page.  If you would like to read more of Jenesa's journey, go to her blog³.

     

    ¹http://www.webmd.com/infertility-and-reproduction/guide/hysterosalpingogram-21590

    ²http://www.webmd.com/digestive-disorders/colonoscopy-overview

    ³http://www.jenesasjourney.blogspot.co.uk/

  2. 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. Today's guests on the blog are Rod and Lynda who recently organised the Scunthorpe Saints & Stags Speedway Reunion.

    Scunthorpe Speedway ReunionScunthorpe Speedway Reunion supporting Pseudomyxoma SurvivorFor anyone unfamiliar with Speedway, this was a reunion meeting staged to renew friendships between fellow racers, officials, promoters and supporters from way back in time, some not having met up with each other for 40 years.

    To make it relevant for today's spectators, we arranged static displays of racing bikes both old and new, one-off engines (all collectors items), race jackets from teams all over the country, many photographs of both teams and individuals, a special board of photographs of 'Absent Friends' those no longer alive, a sales table for memorabilia and more.

    Scunthorpe Speedway Reunion supporting Pseudomyxoma Survivor

    We also ran a supersize raffle and an auction of memorabilia, much of which was up to date, autographed, and specially donated by the cycling and motorcycle fraternity.  Our thanks go to Speedway's Tai Woffinden and his mum Sue, Moto G.P.'s Dani Pedrosa, Marc Marquez, John McGuinness, Alex Lowes, Ryuichi Kyonari, Jason O'Halloran, and lastly to Sir Chris Hoy, for their personal donations for the auction.

    Scunthorpe Speedway ReunionAll told around 150 people attended the event, which we were very pleased with.  A substantial sum was raised for Pseudomyxoma Survivor of £1,400.

    - Rod and Lynda

    A huge thank you from us here at Pseudomyxoma Survivor to Rod and Lynda for co-ordinating this unique event and for the amazing amount that was raised on the day.

     

  4. Today we are pleased to announce the winners of our Fundraiser of the Year award. Yes, winners. This year we have two of our amazing supporters whom we are rewarding and we would like to share with you what they have been doing during the year.

    Pseudomyxoma Survivor Fundraiser of the Year 2013In March, Michelle took part in the Centurion Thames 100 mile Challenge to raise money for Pseudomyxoma Survivor and raise awareness of PMP. The conditions on the day were horrendous and just completing the path was little short of amazing. During the week prior to the event, it was in threat of being cancelled due to the extreme weather conditions and flooding on the Thames Path. The event did go ahead but the route had to be changed... now extended to 103 miles.

    The day started with snow and it took Michelle 24 hours 48 minutes to complete - including taking a wrong turn along the way and adding some extra miles.

    You may remember that Pseudomyxoma Survivor was privileged to have Julie run the London Marathon in support of the charity. As if thiPseudomyxoma Survivor Fundraiser of the Year 2013s wasn't enough, Julie also established and co-ordinated the Pseudomyxoma Survivor Marathon Challenge 2013 where she encouraged us to run, walk or crawl a marathon in whatever time was a personal challenge. Julie was amazing thoughout, enthusing us and the children at the school where she teaches and producing amazing progress charts for participants throughout the world.

    As a primary school teacher, she engaged some of the children in the marathon challenge. The children have been fantastic, with some of them sharing their experiences with us here on our blog.

    Please join with us in congratulating both Michelle and Julie and all our other amazing fundraisers for their fantastic efforts in raising awareness of PMP and helping us raise funds to continue with our charitable aims.

    If you have been inspired by Michelle and Julie, please get in touch, we'd love to hear from you!