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. Pseudomyxoma Survivor attend ASCO Annual Meeting 2013Dawn and myself were privileged to be able to attended the ASCO 2013 Annual meeting in Chicago thanks to the patient advocate scholarship scheme.  Finding out that we had been awarded two of just five international scholarships awarded this year made us feel particularly honoured especially as ill health meant that Dawn was unable to attend last year.

    ASCO (the American Society of Clinical Oncology) hosts such a meeting each year bringing together more than 30,000 delegates from a broad range of specialties, making it an excellent venue for exploring the theme of the Meeting — "Building Bridges to Conquer Cancer".

    The venue is huge - "a vast barn" is one description I have heard - being the largest conference centre in North America.   This may sound a little daunting to those of you that have attended such conferences or even been to a large exhibition centre.  However, the excellent organisation and signage around the venue made that impossible.

    There are many academic sessions throughout the conference as well as an exhibition and poster sessions.  Of particular interest to us was the session entitled "Peritoneal Cancers, Heated Controversy (eQ&A)" and the opportunity to meet like minded patient advocates particularly those representing colorectal and ovarian cancer.

    - Angela

     

  2. You may remember that Pseudomyxoma Survivor were really lucky to have Julie run the London Marathon in support of the charity.  Julie is a primary school teacher and she engaged some of the children in her marathon challenge.  Some of the children wanted to share their experiences with us.  We say a big thank you to them for all their support, you guys have been amazing!!!

    Yr 6 Marathon Challenge

    By Carlo

    Before

    It was just another school day when Ms T said that we were going to run a marathon. I thought, how are we going to do this, we haven’t been training? Ms T then said “We are going to run it in small parts.” Then I thought “Ohhhhhhh.” There was a whole session on how we were going to do it and things like that. When Ms T showed us the route, I thought, “Wait, how are we going to do this?”........

    During

    At first I said, “Oh my gosh!” I was feeling so tired! But, when I go used to it, and we got to use the football it was so much easier! On the last day we could do it. The reception children came to support us and there was a finish line. We all walked together and 5 meters from the finish line, we ran our fastest through it.

    After

    We were so tired! I felt really of myself because I ran 42 km (26 miles)! I have learned from this challenge it isn’t about coming first, it’s about taking part.

    By Rachel and Hillary

    juliemarathonIn February, our class decided that we should do a marathon challenge. Ms T said that we should run to raise awareness for a cancer called Pseudomyxoma Survivor which is a rare cancer that starts in the appendix and works up. We had to run 26 miles (42km) in 12 weeks.

    When we selected the marathon, some people weren’t that keen on doing it, but everybody liked it after a few weeks. Everybody enjoyed it and we really had a good time even though we had many stitches. It would feel more painful to have cancer than have a stitch. When we ran we felt out of breath. It was really easy when we worked in groups. We played football and used all sorts of equipment to keep us as a team. When we finished our challenge, we felt so proud. Nearly every week we had a piece of fruit or vegetables. When we crossed the line we felt amazing.

    The time we finished the challenge in, was the time Ms T had to try and beat when she ran her marathon. We finished in 5:49.42; unfortunately Ms T beat our time. Ms T’s time was 4:28:01. Even though we didn’t win, we had fun.

    Our names are Rachel and Hillary. When we crossed the line it was fantastic. We had a brilliant time running, especially in a group. At the start we thought we couldn’t do it, but we WILL do it again.

    By TARA

    In January our class decided that we should do a marathon. Ms T said that we should run for the charity Pseudomyoxma Survivor which is a rare cancer. Ms T chose it because her friend called Jenny has PMP Cancer.

    When we started the marathon, people weren’t that keen because we thought that it was impossible, but when we got the hang of it we loved running, The furthest we ran at once was 7.5km Many of us were speeding ahead, (that not including me) so Ms T gave us items to use to keep a group of 6 together. After that, loads of people caught up and it was more of a team effort.

    My name is Tara and when I crossed the finish I felt great not just because I had completed my challenge but because the year 2’s and receptions came to cheer us on.

    Marathon Race

    By Amani and Ines

    We loved the marathon race a lot because it was fun and very exciting. It was very tiring, but we loved it especially when Ms T gave us fruit and made us cookies. No matter what the weather was we still tried our best. Our time was 5:49:42 for 42 km over 12 weeks.

    When we finished the marathon we missed it a lot.

    We really tried our best to raise as much money as we can for the charity called Pseudomyxoma Survivor.

    We would still run if we had the choice. We really liked the race; we tried not to cut corners during the race.

    When the year 2’s were cheering us on, we felt very special and very proud of ourselves.

    This will be in our memories forever.

    MY LAST BREATH........

    By Byron and Umut

    Our run was very tiring, but Ms T gave us delicious fruit to make us more determined to carry on. It took 42 breath taking kms. We ran every Tuesday. It took us 5 hours and 49 minutes.

    When we crossed the finishing line, Mrs T and the reception children made us feel special. Ms T beat our time however she did not come first, but she tried her best. She finished in 4hrs and 28 minutes.

    We all think Ms T did great.

    We used a football to teach us to stay together as a team and to help us get more stamina.

    What we learned:

    • Working together
    • Not always about winning
    • Team work gets you further
    • Slow and steady
    • More determined

    The Marathon Nightmare........

    By Donna and Zoe

    I was excited and gobsmacked after Ms T blurted out that we were doing the marathon; on the other hand Zoe wasn’t so excited about running 42 km.

    We have never ever run for charity before so this was our first time raising money and awareness for Pseudomyxoma Survivor (PMP). Our challenge was to raise funds for the charity and set Ms T a time for Ms T to beat at the London Marathon.

    We faced rain, wind and the boiling hot weather. At first I was rushing then I started to feel exhausted. I was so tired; I nearly smacked myself to the floor. Zoe was dying for water and rest. In the end, it was easier and we managed to finish the race.

    During the marathon Ms T kindly offered us fruits and treats. We started running independently and then we worked in groups. Then we thought about other things that would keep us together. We turned on our brains and thought about football and passing the ball to one another.

    In the end, the receptions came and supported us with cheering and clapping. It was amazing. I learnt that it want always about the winner and Zoe learned not to judge what things will be like and never give up as she felt it was fun and joyful.

    Ms T (our PE Teacher) Ran the London Marathon and timed how long it was to finish it. She came back with the results, told us the time and if she beat our time, we lost. I was shocked and Zoe was surprised.

    In the end we were relieved and felt incredible that we reached our goal.

    The Long Challenge

    By Derek and Ismael

    In January, we started to do a marathon for PMP, We were determined to beat Ms T and to raise at least £100.

    It was hard at the beginning but it got easy. I liked when we got to use the footballs. At the end, I felt amazing when we passed the finish line. We did the marathon over 15 weeks. Even though we tried our best, Ms T beat us. We got our time by the slowest and fasted times and averaging it out. Our time was 5:49:42 and hers was 4:28:01

    Pseudomyxoma Survivor

    By Anna and Emilda

    We did our marathon together no matter what the weather hot or cold, just for PMP.

    PMP is a rare cancer that not many people have. PMP is a cancer that builds up in the appendix that means you have to have a special operation.

    The goal was set up for us to raise money to help people with pseudomyxoma. We were doing this because of Ms T’s marathon and because of the people suffering. When I found out about our challenge, I didn’t know what to say. When we started I was really proud of myself. When Ms T said that we would be doing the marathon I was excited but it was tiring.

    Are they amazing?  To show your support, please visit Julie's JustGiving page.

  3. Pseudomyxoma Survivor are proud to have sponsored the recent PMP Patients' Meeting which was held in Basingstoke in May 2013.  The first meeting of its kind in the UK, attendees heard sessions from Dr Paul Sugarbaker and patient advocates Amani Albedah, Dave Mason and Pseudomyxoma Survivor's very own Dawn Green as well as attending breakout sessions which covered a range of topics.

    Dr Paul Sugarbaker attends the PMP Patients' Meeting in Basingstoke, May 2013Dr Sugarbaker spoke of the history of PMP.  He introduced us to the history of the Peritoneal Surface Oncology Group International (PSOGI) and explained that "psogi" is also the Japanese for 'clear'.  He talked through the different techniques of administering chemotherapy - during surgery and post, intravenous and intraperitoneal - and the efficacy of these methods.  The key message was that survival statistics show a direct correlation to complete cytoreduction during surgery (1). 

    He also introduced the topic of long-term intraperitoneal chemotherapy, a treatment not usually seen in the UK.  Dr Sugarbaker described a study carried out with ovarian cancer patients where the quality of life (QOL) was significantly worse in the intraperitoneal-therapy group before cycle 4 and three to six weeks after treatment but not one year after treatment (2).

    Dr Sugarbaker then went on to talk about the history of heated intraperitoneal chemotherapy (HIPEC) with a key point of interest being the designation of the pseudomyxoma peritonei treatment center for the United Kingdom at the North Hampshire Hospital, Basingstoke, England in 1998.  He explained the use of the Peritoneal Cancer Index (PCI) where a score is given as a summation of scores for areas of the abdomen based on tumour size and described studies which showed survival by PCI for both adenomucinosis and mucinous carcinoma.

    We were then introduced to the CC score which is used after surgery:

    • CC0 - No disease
    • CC1 - tumours present but less than 0.25cm
    • CC2 - tumours between 0.25cm -> 2.5cm
    • CC3 - tumours larger than 2.5cm

    and again, Dr Sugarbaker described studies showing survival by CC for both adenomucinosis and mucinous carcinoma.

    Dr Sugarbaker then told us of the development of Peritoneal Surface Oncology treatment centres in the UK.  The importance of a treatment center in the United
    Kingdom for pseudomyxoma peritonei patients was made clear. In 1998 this became a reality with the establishment of the centre in Basingstoke.  In 2002 a second center was established under the direction of Sarah O’Dwyer and colleagues in Manchester, UK. Other designated treatment centres have appeared throughout Europe.

    Dr SuDr Paul Sugarbaker attends the PMP Patients' Meeting in Basingstoke, May 2013garbaker described the incidents that cause issues following surgery and those which cause patients to have to have a further operation.

    Of most interest to many attending was Dr Sugarbaker's discussion of the future direction for patients.  He summarised these as follows:

    • Abandon the watch-and-wait policy with referral of symptomatic patients to a peritoneal surface oncology centre.
    • The preoperative treatments are now bidirectional with some chemotherapy agents for use with heat targeting to the peritoneal cavity - this is the use of both intravenous and intraperitoneal chemotherapy before surgery. Others as part of a hyperthermic intraoperative intraperitoneal chemotherapy regimen (HIPEC).
    • Neoadjuvant treatments (treatments that are given before a main treatment) are now being explored for gastric cancer, presenting an exciting new direction for a group of patients with very poor prognosis.
    • Perioperative (during a surgical procedure) chemotherapy is being moved to the primary management of gastrointestinal and gynecologic cancer.

     

    (1)Youssef et al. Operative findings, early complications, and long-term survival in 456 patients with pseudomyxoma peritonei syndrome of appendiceal origin. Dis Colon Rectum 2011

    (2) Intraperitoneal Cisplatin and Paclitaxel in Ovarian Cancer Armstrong DK et al. NEJM 2006

  4. Today, Iain, from our Support Group, shares his story:

    Pseudomyxoma Survivor Iain shares his storyFor well over a year I noticed my belly steadily getting bigger though I didn't seem to be eating any more than normal. I of course tried dieting a few times but when I didn't lose weight I gave up pretty quickly.


    At work I used to eat at my desk and started noticing when I brushed down the crumbs (mucky pup!), I felt a pain right down the surface of my chest but again didn't think it was more than just getting fat.  But around October 2012, this pain in my chest began bothering me all the time and found it very difficult to tie my shoe laces so only then did I go to the Doctors.

    My Doctor thought I might have a hernia and sent me to Ninewells Hospital in Dundee for an Ultrascan.  I got this appointment within a week and was seen first by a student who could not explain what she saw so called the nurse who also had a look.  She also couldn't explain what she was seeing so then called a doctor who explained that there was something there obscuring the view but again he had never seen this before and recommended my own GP send me for a CT scan which he did.


    I had the CT scan early December and waited 2 weeks for the results. I was surprised when Mr Polignano at Ninewells Hospital wanted to see me the following week to discus the results but still not fearing anything serious was wrong I went on my own to be told I had this rare cancer PMP which needed the huge operation you all know about.

    My operation lasted 12 hours followed by the Chemo Pack for another 2 hours and eventually got to Intensive Care after midnigh.  I only spent one day in Intensive care and was taken to the High Dependency Unit for a further 5 days. During this time I have to admit I had short periods of depression and wanted to die as I felt so bad but luckily these feelings didn't last long as the staff were marvellous and made me as comfortable as I could possibly get.

    I was then transferred to a private room on a ward where i stayed for a further 2 weeks.  I was given a pass to go home for a long weekend but was let back home as they could see I was eating much better at home and getting much more exercise that I was on the ward.
    So I was in hospital for just over 3 weeks.

    When I was initially told I don't think I really took it in; I had a wee cry in the car and went back to work. It was difficult telling others as my mother, partner, friends and family, seemed to take it quite bad.  Apart from one day, 2 days after I was told, I've never really got upset whilst everyone around me acted like they were going to lose me.  I did get upset when my original operation was cancelled as I lay on the bed sedated waiting for the operation to begin, and then to receive a letter saying I had to wait a month until the new date. I did get chest pains which my Doctor said was acid reflux which I am prone too but I think it was also anxiety.  I do get very emotional about anything and should really stop watching programmes like 'NHS In A Day' as I always end up in tears. This emotion is not in anyway sympathy for my own condition as I have always accepted I have no control over it and want to get on with a normal life.

    I feel quite good at the moment but want to push on the recovery so I can get back to work. I'm an impatient patient!!  My stoma is soon to be reversed and I can't wait for that.  I worry about catching any colds or worse off people in supermarkets etc. but will not become a hermit.

    My advice to tohers is to stay positive whilst recovering as it does help. As one doctor doing his daily rounds told me,

    " We can help you overcome any physical problems but It's up to you to keep your mind positive." and he was right.

    To read more stories like Iain's, please visit our Survivors' Stories page.