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. 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!

  2. It is very easy for us to focus on the patient as being the person affected by pseudomyxoma peritonei and also very easy to forget the effect that a disease such as this has on friends and family.  Today, our guest blogger is Therese.  Her husband Keith is the patient and she shares her perspective:

    Therese shares a caregiver's perspectiveMy husband, Keith, was diagnosed with Appendix Cancer, mucinous adenocarcinoma and carcinomatosis in October 2010.  Like everyone reading this, we were shocked that there was such a thing as appendix cancer.  While we loved our local oncologist and his treatment consisted of treating this as it were colon cancer* he was very gracious in sending us for further opinion and not at all intimidated that he really had no clue about pseudomyxoma peritonei.

    Therese shares a caregiver's perspectiveLong story short, it was through internet research that we learned this cancer is “rare” – “one in a million” “incurable”– and further reading brought us information about cytoreduction and HIPEC, a possible chance at a cure and if not a cure, an extension of life.

    As a caregiver, I have found my role to be almost as imperative as the patient because often times the patient is so stunned by the prognosis that they can’t think straight.  Don’t get me wrong; when we first found out about Keith, there was a period of about six weeks in which I was barely functioning.  I didn’t want to lose him.  He was 55 years old and we had a lot of living left to do.

    But I took the role of information guru – I learned the lingo, the drugs, the surgery and I put into layman’s terms the best I could so that Keith could understand and make informed decisions.  We traveled the same road as all of you reading this – with hope and with purpose.

    After Keith underwent six months of chemo with none of them helping to shrink or even keep the tumors at bay, he went to a Surgical Specialist.  There was some concern that his name wasn’t on the “list” of surgeons but once we met him and he told us he had been doing the surgery for over 8 years, though scared, he put Keith’s mind (and mine) at ease by explaining the disease in detail, how most of patients have done post op and what statistics were (for him).

    Keith had cytoreduction and HIPEC on July 1, 2011. His surgical score was a “1” which meant though there was some millimeter tumor on the small intestine; the hope was that HIPEC would eradicate those tumors.  It was not to be.  Within 3 months the cancer had returned. Keith began different targeted therapy regimes to no avail.  By the six month, it was determined that chemo should be stopped as it had no benefit other than to weaken him.

    As a caregiver, I watch him closely. I live life with him. I hold on to what has been given to him; an extension of life and an amazingly good extension! I am here to hold his hand, give him his meals, tell him how proud I am of him, love him and thank God for him every single day.  This man, who has cancer throughout his peritoneum and pelvis again, extensive tumor on and between small intestine, liver, diaphragm, etc., never complains.  He goes about his daily routine without worrying too much about tomorrow because we are living for today.  We know that statistically things may change at any time but we do our best not to let that stop what today has given us. Today has given us an opportunity to make new memories, even if those memories are just sitting together in our family room looking at the TV or sitting behind our computer screens.  As his caregiver, as his wife, it is my responsibility to make sure that he has the best care possible and I will continue to give my all to him. It is also my faith that sees me through the troubling times – we are all here on this plain for such a short while.

    - Therese


    *Local oncologists will tell you this cancer is treated like colon cancer. We have never been hung up on that verbiage because in all honesty, there is no known protocol for appendix cancer and pseudomyxoma peritonei other than cytoreduction and HIPEC or IPEC (or EPIC). There are no chemo drugs specific to appendix cancer, but the ones used for colon cancer do appear to help some patients and that is why I believe these doctors say they will treat it like colon cancer.  Treat it = chemo.Therese shares a caregiver's perspective

     

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

  3. Karen shares her story of diagnosis with Pseudomyxoma SurvivorKaren from our Support Group shares her diagnosis story:

    Karen shares her story of diagnosis with Pseudomyxoma SurvivorMy regular walking route takes me on a trail where a grapevine has run wild, entangling itself in a tree. All summer long, I watch and wait for the grapes to ripen and turn purple. One summer, I sampled a couple of grapes, decided they were ripe, plucked a bunch and shoved it in my pocket to eat later. I never got to enjoy them, though, since I ended up having an emergency appendectomy that day. I remember it because nearly every medical person I saw asked the same question:

    "Have you had anything to eat today?"

    And my answer was always the same: "Just two small grapes".

    It was, of course, the surgery that led to my appendix cancer diagnosis. Well, the grapes were ripe last summer, as you can see from this picture. Karen shares her story of diagnosis with Pseudomyxoma SurvivorIt was my third harvest since the cancer diagnosis and I am looking forward to my fourth. I've just been to check on them today.  I swear those grapes get sweeter every year.

  4. 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