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Keep in touch with what is going on at Pseudomyxoma Survivor.  If you have something you wish to share, please do not hesitate to contact us.

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  1. Pseudomyxoma SurvivorThere has recently been some discussion about where all this fundraising goes.  What actually happens to the money? 

    So we thought this would be an ideal time to give you the chance to ask questions which we will answer to give you a chance to understand a little more before donating.

    As we are sure you appreciate, Pseudomyxoma Survivor is a very small charity run, in the main, by two volunteers and fit in around our own health issues and busy family lives.   

    We have no office overheads and run the charity on bare minimum funds from our own homes. No salaries are claimed but that is not to say that there aren't fundamental costs involved with running an organisation such as Pseudomyxoma Survivor.

    Pseudomyxoma SurvivorWe always look for the best value taking up the goodwill of some of our amazing suppliers whenever we can.  We have been extremely lucky to have found a number of good people who is such austere and difficult times for many organisations have found it in their hearts (and profit margins) to provide us with essential items at a very low or zero cost to the charity. However, some things just have to be paid for.

    So where does your money go?

    A £5 donation would pay for the printing and postage of 5 posters.

    A £10 donation would pay for a runner's tabard.

    A £100 donation would pay for a leaflet run.

    A £1000 donation would pay for one of our small research grants.

    With a raft of other things in between. 

    Donations to date have also funded vital medical equipment for clinical areas at both Basingstoke and the Christie hospitals, the two centres of excellence for PMP in UK as well as helped many patients on a personal level to fund travel and expenses incurred from hospital visits and so on.   The establishment of the charity and of the support group together have created an invaluable support advocacy and advice network both online, over the phone and in person as well as raised crucial awareness into this extremely rare disease.

    We hope that this has given you a small insight into our world and we would gladly answer any further questions you may have. Just click the comments link below.

    Dawn and Angela

    xx

  2. 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/

  3. 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