Search

easysearch.org.uk

Blog

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.

Subscribe to the Pseudomyxoma Survivor blog by e-mail

 RSS Feed

  1. With several upcoming conferences to attend, we recognised that id badges would be very useful but were unsure what exactly what we were looking for.

    Ashley at PPS ID Bureau has been an absolute dream to work with. She has listened to our requirements and quickly provided us with designs making any necessary amendments in a timely and supportive many.  Ashley has also become an ardent supporter of our charity, helping us spread a little bit of awareness of this rare disease.
    Extremely helpful and very pleasant to deal with providing a professional approach.  With grateful thanks to Ashley and hopes that we may work together in the future.

  2. As you may know, Julie was lucky enough to secure a place in the London Marathon 2013 and kindly volunteered to run in support of Pseudomyxoma Survivor.  As if this 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 timme was a personal challenge.  Julie has been amazing thoughout, enthusing us and the children at the school where she teaches and producing amazing progress charts for us to share.  Julie tells us about her marathon challenge:

    Julie shares her marathon story with Pseudomyxoma SurvivorThe last several months leading have been quite the journey and I have loved almost every minute. I admit that I find my new love for running quite strange as this time last year I never, ever had the desire to run more than 10km; that was painful enough.

    Julie shares her marathon story with Pseudomyxoma SurvivorMy husband decided that it would be funny if he signed me up for the marathon ballot as he was entering himself, this remained secret until October of 2012 when he got his commiseration letter and I didn’t. Instead I got a letter of congratulations. I can’t even put into words how I felt about this except that I felt as though I had just had my car towed. I had no idea what I was going to do. I certainly wasn’t excited or grateful for my wonderful surprise. I had time to think about withdrawing or deferring my spot for 2014, I knew deep down neither was an option as it wasn’t fair to the people who really wanted to do it (like my hubby) and I knew in 2014 I would feel the same way. I came across a quote that helped me make my decision:

    Excuses are always there.....opportunities aren’t

    From that moment, I knew I was going to do this even if it killed me.

    I started my training in January under the direction husband and believe it or not, we still actually love each other. Through the weeks, I slowly increased my mileage and after several weeks, each long run was a milestone for me. Every time I went that bit further I became more and more proud and wanted to go further. I realised I had never really had enough faith in myself to push my limits. I am so pleased that this journey has made me realise the only way for me to realise my true potential is to try. I have loved the fact that I have been able to run slowly and not have to make excuses for it. Now when people pass me on the roads, I quietly say to myself, “I bet they are not running as far as me today”.  I have been looking forward to each and every run. People are right when they say running is the cheapest form of therapy. Each run gave me time to think about anything and anyone, time to myself, peace and quiet and just a chance to appreciate the world around me, and what a great place it is. I always feel on top of the world when I am done.

    Strangely as race day approached (way quicker than I had hoped) I felt calmer and more and more excited. I think this was because I visualised this day in my head so many times. I saw myself running with a smile, with my special little angel on my shoulder encouraging me to keep going. I envisioned my smile getting bigger with every passing mile. Oddly, this is exactly how the “race” played out. The morning of the race I had an aura of peace around me; everything went smoothly from travelling up to the race, to checking in my bags, and finding where I needed to start. Once I got there, there was nothing left to think about but just to take one step at a time, have fun and finish the race. I won’t lie, even though I enjoyed EVERY second of the race there were moments where I got really emotional and a bit choked up. I just couldn’t believe that I was actually doing the race and enjoying it.

    Looking at all the charity shirts over the 26.2 miles made me realise how many stories of heartache, pain, joy and happiness there is out there, and this gave me that much more motivation to give it my all. It was such a beautiful day and the crowds helped to fuel the fire within, especially when I saw my hubby Matt at Mile 11 and Mile 24 with TEAM PMP (Dawn, Kirsten, Megan, Angela, Sarah and Jenny).  This gave me that extra boost to get me to the end. I was so unbelievably touched that they all travelled up to London to cheer me on, especially when I had never met most of the team before. I was going to finish strong for them.

    It wasn’t long until I saw the finish line in the distance, 800m, 600m, 400m, 200m I could feel myself starting to bubble over with excitement as I was nearly there. I crossed that line with so much pride for myself. I was on top of the world and I didn’t want that moment to end.....EVER!! Sadly it has, but I have fond memories of the day and yes......I would do it all again in a heartbeat!! Best experience ever and I am so glad to have chosen such a special charity and special people to run for.

    Would I do it again?? ABSOLUTELY, YES!! I was the only runner for Pseudomyxoma Survivor, but all it takes is one person to make a little difference. If you haven’t already, please can you make a small donation to http://www.justgiving.com/topmp.Julie shares her marathon story with Pseudomyxoma Survivor

    - Julie

    We would like to take this opportunity to say a mahoosive thank you to Julie for all she has done in supporting Pseudomyxoma Survivor and raising awareness of pseudomyxoma peritonei.  You can find out more about Julie's marathon challenge here and show your support on her JustGiving page.

     

  3. As you may know, Julie ran the Virgin London Marathon on Sunday last to raise awareness of Pseudomyxoma Peritonei.  She had an amazing race finishing in 4:28:01 - beating her target of 4:30:00.  Not only has Julie been training for this, her first marathon, but she has also been managing the Pseudomyxoma Marathon Challenge 2013.  At the beginning of the year, Julie set us a challenge to run, walk or crawl 26 miles/42 km in a predetermined period, whatever was a challenge to you personally.

    For example:

    42km in 4 weeks = 10.5km/week
    42km in 8 weeks = 5km/week + 2 bonus km
    42km in 12 weeks = 3.5km/week

    Support for the challenge has been fantastic.  As well as classes at the school where Julie teaches taking part, she has had support worldwide.  Today, our guest blogger is Deborah, herself a pseudomyxoma survivor, who co-ordinated the challenge for 'team LA' in sunny California:

    Pseudomyxoma Survivor Marathon Challenge - Team LA's reportOne of the most positive things that came out of my illness was finding an amazing group of PMP Cancer patients, caregivers and survivors simply called PMP Cancer Survivors Group.  They are an 800 plus strong group that shares stories, gives support and information to patients and their caregivers.

    Pseudomyxoma Survivor Marathon Challenge - Team LA's bibsWhenever I have an odd symptom, I find someone in the group who has had it and has a solution. Before this group, I would panic over things that were normal for someone who has had my illness and treatment.  They also bolster each other mentally and emotionally. It is beyond wonderful to have a group of people to talk to who have walked in my shoes.  They are there for Jon as well.  If this wasn't enough, the group has members who've started charities to raise awareness or to help fund research or help patients. One such charity is Pseudomyxoma Survivor.  On Sunday, one of our group ran in the London Marathon to help raise money and awareness for the charity.  There is so little in the way of aid for this cancer every little bit truly helps.  To help support the group, Jon, Ohio buddy Bruce Kline, the infamous Craig and I have been doing our own marathons to raise money.  Every week we log those miles. This past Friday, we passed 53 miles or two marathons.  We were hoping that in doing this, Julie wouldn't be running alone.

    Pseudomyxoma Survivor Marathon Challenge - Team LA - DebI thought of it as running a marathon on the layaway plan. I do at least 3 miles per errand and at least 4 errands a week. The miles add up quickly.  Jon walks two miles per day as part of his commute to work, and then we do 3 or more on the weekends.  We decided to finish our second marathon circuit walking from Marina del Rey to Venice Circle on Venice Beach.  It was a 4 mile stretch to cap off a week of walking every day.  Though it probably wasn't smart for me to do after a week that included planting a community garden.  I really wanted to do as much as the rest of the team did last week.

    Pseudomyxoma Survivor Marathon Challenge - Team LA - BruceBruce Kline does his walking during disc golf when not relaying traffic reports for his Columbus radio station.  He does 3 to 4 miles each course and typically does a couple courses a week.  Bruce and I have been friends since the 1980s when we both worked in Manhattan.  He was an aspiring musician and radio DJ.  I was trying to peddle my writing.  Currently, he is a musician in his home town of Columbus, Ohio where he is an on-air radio personality.  He also writes music for some of our film ventures.

    Pseudomyxoma Survivor Marathon Challenge - Team LA - CraigAnd then there's Craig. He runs up mountains for fun. He was the only marathon runner. He did his part in big jags. During the second circuit, he nearly got 'swatted' by an LAPD SWAT team investigating can urgent call at singer Rhianna's estate. And last week, he ran a half marathon run on behalf of the fallen at the Boston Marathon.  I've worked with Craig in our day jobs off and on the entire time we've lived in LA.  He is a gifted writer whose life seems to be out of any Coen Brothers movie.  He's never been an actor, but he is one of the most entertaining people I know.  He also looked after me when I was at my sickest by taking me tquotecloseo and from appointments and making my sides split with laughter. What we did wasn't a lot in the face of the terrible toll this cancer takes, but we had to do something. I'm very proud of the team and the team is proud to be part of this incredible effort.

    A huge thank you to team LA for taking part in this worldwide marathon challenge and congratulations on completing 2 marathons.  To show your support for Team LA, please visit their JustGiving page.

    See all of Team LA's photos here: http://dlwarner.blogspot.com/p/blog-page_21.html.  You can follow Deborah's blog here - http://dlwarner.blogspot.co.uk/.