SALE!
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 Email

 RSS Feed

  1. Kira shares her story about Pseudomyxoma SurvivorWhen my mother was diagnosed cancer, I was very young. I saw my mother as a friend rather than a mother, we did everything together. I would often tell my mother about things with great enthusiasm.

    Kira shares her story about Pseudomyxoma SurvivorWhen she had to go into hospital and I couldn’t contact her, I started using the laptop as a way of getting over my depression. I became addicted, I forgot about my sadness.  But I would get sad again when I went to go and tell my mother something, only to remember she wasn’t here. But I would Roleplay with people online, pretend to be someone else to forget my problems. I made a few friends, and one really close friend, but I was truly lonely.  School was no help, I’d lose my temper a lot easier and people would pick on me more because I was weaker. I only had one friend I could depend on at school; I couldn’t even depend on my teacher. I’ve kept this addiction to the computer ever since, I get violent easily if the internet or computer is turned off. Just because my mother was gone for a month.

    I never wanted anyone to go through something like this again so when we had to pick and research a charity of our choice, I immediately went for Psuedomyxoma Survivor.  We had to prepare a speech and present it to the rest of our form.  There would be a vote and the winner would have to give their speech to the whole of Year 8.  The winning charity from this owuld be the one that we would raise funds for.

    I used a lot of personal experience and facts in my speech to my form, but I didn’t win in my form. Another group won (most people worked in groups). However, they didn’t want to speak in front of the whole of Year 8, so second was chosen. Pseudomyxoma Survivor. Me. I later did my speech to the whole of Year 8 and had to wait for ages for the results. When I finally heard the results that the top three charities had been selected to raise money for and hearing Pseudomyxoma Survivor is one of them, I was extremely happy but it hadn’t hit me properly yet. It was only when I told my mother when it finally hit me and I cried with happiness.

    One of the teachers said: “Put your hand up if you knew what PMP and Pseudomyxoma Survivor was before the assembly.” Obviously, only my close friends put their hands up.Kira shares her story about Pseudomyxoma Survivor

    “Now, put your hands up if you know what PMP and Pseudomyxoma Survivor are.” The whole year group put their hands up. “I think Kira did an excellent job and has been so brave to do it by herself.”

    - Kira

    A big thank you to Year 8 at Colmers School and Sixth Form College, and especially to Kira, for all the support!

  2. Today's guest blogger is Julie.  Julie has been lucky enough to secure a place in the 2013 Virgin London Marathon and has pledged to raise funds for Pseudomyxoma Survivor and to raise awareness of PMP by so doing.

    quoteopenI will be running the London Marathon this April. This will be a huge challenge for me, particularly since I don’t think I have really ever run more than 8 miles. This means that I have another 18 miles to train for. Gulp!

    With this in mind, I thought this was the perfect opportunity to raise money for my chosen charity, Pseudomyxoma Survivor, and get you guys involved, especially since I know many of you are setting New Year’s goals now. What great timing, eh??

    My challenge to you, if you choose to accept it, is to cover the distance of the marathon in a preselected period. Don’t be scared, I don’t mean how many hours you can do it in, but… believe it or not, in how many days or weeks. You are more than welcome to walk, run or do a bit of both, as long as you complete the distance of 26.2 miles/42 km. When you do, you can spare a thought for me who will have to do it all in one day!

    This is what I propose:

    Run, walk, crawl 26 miles/42 km in a predetermined period.

    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

    It is entirely up to you as long as how you do it is a personal challenge to you.

    All you have to do...

    1. Get friends and family to sponsor you and give you encouragement. You can get your sponsors to sign the sponsor form provided or they can donate via JustGiving. This way, all the money we raise will all be in one place and we can all see how much our efforts have helped
    2. Get a friends and family involved in the challenge to make it more social and to help raise more funds (I know some of you are competitive)
    3. Each time you go out, log your distance and the time it took you to complete it
    4. It would probably easier to keep track of on a treadmill but you are welcome to do the challenge outside if you have a GPS unit like endomondo or map my run. If you have a running app, it may be worth mapping out a set distance for you to do each time you go out to make your challenge achievable. As you complete your distances, let me know as I am going to display a “marathon” board to display how everyone is getting on in their marathon
    5. Julie's 2013 PMP Marathon ChallengeOnce you have completed the total distance, add up your time and that will be your personal marathon time.

    Most importantly, have fun and don’t give up. You can do it! It doesn’t matter how fast you do it as long as you have fun, get fit and help a worthy cause. If you have any questions please feel free to contact me.

    - Julie


    If you are interested in taking part in the 2013 PMP Marathon Challenge, please contact Julie via email, jtraupe@yahoo.com.  Follow team progress either here on the website or on Facebook.  T-shirts and other merchandising are available from our Zazzle store.

     

  3. Christine from our support group is due to have her operation in two days.  She shares with us how glad she is that the waiting is almost over.

    quoteopenThe call came out of the blue. When my gynae consultant's secretary called, I thought she wanted to say the appointment I had changed was inconvenient.  But no, she wanted to ask me to come back in!  Even then I wasn't particularly worried, didn't really have a clue why...

    Christine shares her tale of waiting with Pseudomyxoma SurvivorThe consultant sat in his chair and advised me that my histology after the hysterectomy had shown a borderline malignancy.  I relaxed in the chair... borderline... well, that didn't sound too serious, did it?  The consultant said he had seen this tumour before but much worse than mine so it all seemed very positive.  He gave me the name Pseudomxyoma Peritonei (PMP) and told me he would refer me to a general surgeon.

    Well, I came home and went straight on the internet.  My husband wasn't interested at all in checking it out but I read everything I could find! As I read, I got more and more alarmed.  This didn't sound very borderline to me, more like a full-blown tumour!... and the treatment! Very scary, I understand why patients call it MOAS (mother of all surgeries) but on the other hand I didn't fancy the watch and wait scenario, not an impatient person like me!!

    The consultant had said it was one in a million and my husband had said he always knew I was! I'm never lucky on the lottery so how come I was unlucky enough to get this? Why me?

    I had read so much about PMP that I knew there were only two centres in the UK that treat it.  I decided to call Basingstoke in advance of my appointment and ask how to get referred.  I just happened to speak to a very helpful lady who advised me they would need all my test results including the actual histology not just the results.

    Armed with this information my husband,John, and I set off to Kingston for my appointment with the general surgeon. I was all ready to do battle to get referred to Basingstoke but need not have worried; the consultant suggested it himself before I could get my words out!

    So, "No problem", I thought.  It was now June... and I was impatient to get to Basingstoke.

    OMG, So many phone calls and so many letters later... then I was told "It's slow growing so there's no rush..."!  I was in such a state! Why can't I see the specialist now? My appointment came through for August and that was a private one! I used to lay in bed in night and cry.  I didn't want to die, not just yet.  I would wake John up at night and cuddle him and go through the whole 'Why Me' scenario...

    Before I had my hysterectomy, my work had wanted me to postpone the operation due to the business need.  It had all got very unpleasant. When I went back to work, I stunned them with the Big C word but didn't really fill them in completely...

    Now the corporate policy decided not to fund all of the consultant's fee.  What next?... More stress!!

    Finally, August arrived and I saw the PMP specialist, Mr Moran. We had a long chat. Still not sure why this serious condition is called BORDERLINE for goodness sake!! I was worried I was overweight but I have always been pretty fit with it.  I don't think John wanted me to have the big op but I was up for it straight away... bring it on!

    "Ok", I said, "Let's do the op next week".

    Oh no, it wasn't that simple... it was deemed better to wait 6 months after my original op.  What??? REALLY??? As you may have guessed, patience is not a word I'm familiar with.

    So with the next appointment in November, I went back to work and tried to forget it.  I sent off for a wristband and car sticker from the Pseudomyxoma Survivor website but didn't join the support group.  I still read everything I could get my hands on about PMP, including a very highbrow paper given to me by the hospital.  Although it was a long time ago, I used to be a nurse and midwife and you know what they say, a little knowledge is a dangerous thing!  Not that I knew anything about PMP or had even heard of it.

    Poor John, I would read out bits to him, mortality rates and so on, what a cheerful soul I was!  His answer was to take me away to every place possible... in the space of four months, we visited America twice and visited Germany.  John lives for his holidays.

    When I saw Mr Moran in November and he said "OK, let's do the operation".  Although I was terrified, I was also so relieved! Did I mention that I am not a very patient person?

    So from confirmation of my operation to the surgery itself has been about 7 weeks to wait.  I gave work the news that I would be off for up to 6 months.  Thankfully, this time there have been no problems after I spelt out how major the surgery is.  Even then, one of the team leaders thought they were putting all the organs back! Oh, I wish... wash 'em off with Flash and stick 'em back!!

    I felt so much better once I had a goal, to get through the MOAS.  The uncertainty has been the worst part, I was so positive after I knew. I was joking I just wanted a free tummy tuck and 6 months off work!

    Christmas came and I spent huge amounts of money on my family.  If this was going to be my last Christmas, I would enjoy seeing their faces... of course I know it won't be my last but with such big surgery there is always that nagging doubt you won't wake up... you keep batting it away but it keeps popping back into your mind.

    So nearly there and since New Year I have spoken to Dawn, signed up with a Pseudomyxoma Buddy and joined the Facebook group and started posting on the site.  In fact, one could say I'm obsessed with the site! I have probably posted every day and it has helped so much! So much positive support.  On the negative side, and I know this is why consultants sometimes aren't keen on internet support groups, I keep thinking there are a lot of people who have had MOAS twice and that's scary!

    However, the benefits hugely outweigh any disadvantages.

    Everyone at work thinks I have been so brave... I'm not brave at all, I'm terrified... and I have a very low pain threshold! I had to have two teeth out a couple of weeks ago and was in such a state I took Valium! It's true, however, I have been joking about sautéed spleen and ovaries with onions... laughter is definitely the best medicine and I definitely have a great sense of humour.

    I feel very sorry for John, he is obviously so worried about me but also his Mum is showing signs of dementia.  He even got annoyed with me yesterday when I said how concerned I was for her and he told me just to concentrate on myself!!

    It has been really weird until now two days before surgery, I have been more relaxed and positive than I was when I was first diagnosed! On top of all of this, my nine year old grandson, Lewis, has been very poorly.  We are anxiously waiting to see if my son can donate his kidney to Lewis for his transplant in the spring.  Strangely, worrying about them took my mind off myself.

    So, two days time.. finally feeling very scared...  I am thinking about it all day.  I am very lucky though and have great support from friends and family.  I think it's fairly normal to be scared.  It's a big op but I think having a network of people who have gone through the same thing is great.  I look forward to all their advice post op.

    Bring it on... now I have waited seven months so am impatient to get it over with and start my recovery.  I am mad about cards so I have taken all the Birthday cards into work for my colleagues until the end of May.  I have the ones at home all stamped and ready for John to post.  I took 2 books of stamps into work and told them to write if they can remember how.

    My family are all coming over today.  I can't wait to see my grandson, hopefully he wont be too bad.  Sadly, he isn't allowed potatoes crisps, chocolate and so on but he is very sensible and knows what he can eat.  My son has said he doesn't want it to be like the Last Supper so I think there's no medical chat today for me or Lewis!

    Christine shares her tale of waiting with Pseudomyxoma SurvivorAnyway good luck to everyone who is undergoing MOAS.  The remit is stay positive, have a sense of humour, take baby steps, don't worry if things don't go exactly to plan and surround yourself with a network of friends, family and Pseudomyxoma survivors.

    I think the phrase I have heard most often in the last two weeks is "You'll be fine".  I'm sure I will.

     

    - Christine

  4. Rodney shares his story

    Rodney share his story with Pseudomyxoma SurvivorAt the present time, I have just got over the latest surgery on the abdominal hernias that developed during the past few years along with a clearing out of a large amount of PMP jelly. Also this year have had surgery on an ankle and am still getting over a previous ankle operation from Dec/2010. All in all a year to write off, with a hope that 2013 will be illness free. PMP isn't always the immediate death sentence some expect, with top quality surgery it can be overcome with a decent life expectancy afterwards. My tips would be to

    • make sure you fully understand all the implications of how to properly cope with a stoma and avoid hernias
    • always ask if anything is not fully understood, there are experts in all related fields.

    Rodney share his story with Pseudomyxoma SurvivorHaving undergone surgery and removal of 4.5 stone of tumour and jelly just two months before it would have been fatal, I feel very lucky. My wife Lynda and both sons bore the brunt of all the waiting and so on. Lynda in particular stood up better than she herself expected. The whole experience led to both of us having a completely different perspective and outlook on life.

     

    - Rodney

    If you would like to read more stories like Rodney's, please go to our Survivors' Stories page.

     



site stats

Tell a Friend

Donate with JustGiving

 
Pseudomyxoma Survivor
Giving support to survivors and raising awareness of PMP worldwide
A registered charity in England and Wales, number 1143642

 

  © Pseudomyxoma Survivor 2014 | Privacy and Cookies | Follow us on Google | |   |

Powered by Create