News
Keep in touch with what is going on at Pseudomyxoma Survivor
Starting a food diary
Many patients discover varying degrees of issues with food and drink during the weeks and months after their operation. Although appendix cancer and pseudomyxoma peritonei patients may have similar cytoreductive surgery (CRS), including the partial or total removal of...
Receiving a diagnosis
My original symptom was an ‘irritated‘ bladder — it is difficult to describe but the closest I can come up with it that it felt like it was vibrating all the time. In March 2010, after several months of bladder discomfort and many trips to my GP, I was referred to the genito-urinary clinic at my local University hospital with suspected bladder prolapse. Eventually, this lead to a diagnosis of pseudomyxoma peritonei (PMP).
RareConnect
Pseudomyxoma Survivor is proud to introduce a new online community to our members and friends. In partnership with EURORDIS and NORD, two of the world’s most established rare disease patient organisations, we’ve created a place where you can connect with others from around the world who know what you’re going through.
My baby and obstetrician saved my life!
I had a caesarean section on July 12th. This took 35 min and I was delivered of a beautiful, healthy, big baby boy, weighing in at 3820 grams/8.6 pounds. During my normal c-section, I had a further operation, an ’emergency appendectomy’. I had two masses removed and further testing showed they were both cancerous tumours and I was diagnosed with pseudomyxoma peritonei (PMP). I was told I would have to have further treatment in the future. The tumours showed two different types of cancer, carcinoid & appendiceal mucinous tumours.
My pseudomyxoma peritonei (PMP) was picked up on an ultrasound scan
CT scans showing the cyst getting bigger with each scan and a final scan showing fluid in my pelvis, the doctors thought I had a burst cyst. An MRI scan showed the fluid still there after 2 months where it should have been absorbed by then should it have been a cyst. The Christie Hospital in Manchester where straight away doctors diagnosed it as pseudomyxoma peritonei.
Susan, Cancer 52 and the House of Lords
I don’t know what has come over me recently but I am just starting to raise my head above the parapet. Which, considering I was first diagnosed in 2003, does make you wonder what I’ve been doing in between my 6 operations (MOAS in 2009), 3 rounds of chemo, radiotherapy, rounds of IVF and — oh, yes — that ‘miracle baby’ who is now 6 years old and in full teenage strop mode.
Cancer 52 meeting
Did you know that the percentage of patients diagnosed with a rarer or less common cancer in the UK is now 53%? No, I didn’t either until I went to the latest Cancer 52 meeting at the House of Lords.
I thought I had a kidney infection
I feel great. I was worried about catching colds and things without my spleen but I’m as healthy as I was before. My son and husband have caught colds but I have not which is normal for us. I have caught a sickness bug from my son since surgery but I recovered quickly with no problems and again compared to what I’ve been through, it felt like nothing.
Sean Hepburn Ferrer to continue his Rare Disease Day Ambassador role into 2015
Having been appointed as Rare Disease Day Ambassador 2014 following Dawn’s nomination, we are absolutely thrilled to announce that Sean Hepburn Ferrer – our wonderful patron and son of our iconic PMP angel Audrey Hepburn – has been invited by EURORDIS to continue his Rare Disease Day Ambassador role into 2015.
My treatment was largely uneventful…
We have been having a discussion within our support group about the fact that the internet will focus on the more ‘sensational’ rather than the more ‘mundane’ and so we asked for some of the support group members to share their stories just to show that there isn’t always complications and sometimes things just turn out well.
The Lodger
Written during Bumper’s ongoing cancer battle, April 3rd, 2007 to August 2014 and onwards, this poem sums up how many of us feel about the lodger we’ve acquired.
Marilyn’s Story
When my doctor told me what he had discovered during surgery for a suspected ovarian tumour, I could barely pronounce the words let alone understand what it might mean for me.
Meet our very first patron, Mr Sean Hepburn Ferrer
We are incredibly excited to announce that we have our very first patron of the charity, following his close involvement with Pseudomyxoma Survivor, Mr Sean Hepburn Ferrer.
The doctor suspected that I had kidney stones
I was 59 years old when I was diagnosed with pseudomyxoma peritonei (PMP) and it took me eight months to get a diagnosis. My scan showed a “fog” or liquid around my liver and my spleen.
Janesa’s journey with pseudomyxoma peritonei
The most common question I get asked is “How did you know something was wrong?”. So, here’s the story.
An ultrasound showed cystic masses in both ovaries
My initial symptom was a tiny pain (feel like pins and 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 lifestyle.
Just two small grapes
Doctors asked “Have you had anything to eat today?”. And my answer was always the same: “Just two small grapes”.
PMP Patients’ Meeting – Dr Paul Sugarbaker
Pseudomyxoma Survivor is 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 Dawn Green as well as attending breakout sessions which covered a range of topics.
Sent for ultrasound for possible hernia
For 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!
40 for 40
We have been best friends for more years than we care to remember, we have laughed, cried and supported each other through the good, the bad and often the ugly. This year we plan to celebrate our 40th birthdays in style by raising money for Pseudomyxoma Survivor, a...
Misdiagnosed with ovarian cancer
On November 30, 2009 Megan went to Northside Hospital, Cherokee, with severe abdominal pain. After hours of testing and exams, she was admitted to do further testing. Megan’s abdomen was swollen to the point that the doctors, had they already not tested for pregnancy, said that she looked to be about five to six months pregnant.
Busting Cancer Myths
There are many myths out there. World Cancer Day is a chance to try and bust some of those myths. Did you know?
My stomach looked really distended
When we got home from a family holiday and I looked at the photos, my stomach looked really distended. After noticing this, it just seemed to get worse and felt quite hard. I went to see the Doctor and he said I probably had wind or had just put on weight.
My belly size surprised the doctor more than my hernia
He asked if I drank a lot, thinking it was a liver problem causing accumulation of fluid in the abdomen. He requested an ultrasound, which revealed the presence of intense ascites. There seemed no other abnormalities.
I was devastated at first as I am a single parent
Before I was diagnosed, I suffered from abdominal pain and tiredness. I felt full quickly after only eating small amounts. I saw various doctors who gave me a diagnosis between appendix, ovaries and bowel but no firm diagnosis.
Raising awareness of Pseudomyxoma Peritonei
When 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. When she had to go into hospital and I couldn’t contact her, I started...
The Waiting is Almost Over!
It’s just two days until my operation but how did I get to this point?
The 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…
How shall I tell my children that I have appendix cancer?
Looking back, I think we were trying to protect our children from the reality of the disease. Initially, when we discussed my diagnosis, we used terms like death, dying, chemo and cancer. We thought we spun this into a very positive approach, but our “method” may have given our children a confusing and unrealistic message about survival instead.
I had no outward sign that this mass was inside my abdomen
Following an abnormal smear, I was referred to my local gynaecological oncology centre where an ultrasound scan revealed a complex mass believed to be ovarian in nature.
My waist kept expanding over a period of seven months
I was working as a daybaker and would come home and fall asleep on the sofa soon after I got home. I was exhausted and, despite exercising regularly and when my mother asked me if I was pregnant I began to feel unsettled. I also experienced some back pain that felt like my muscles were torn apart (like Velcro).
Authors posting articles on our blog are patients and family caregivers who write their articles with the goal of sharing their experiences fellow patients and their families.
As survivors and carers, information here is from our perspective – we are not health care professionals. We are all individuals, everyone is different. We recommend that you take advice from your doctors for specific information.
Feeling inspired?
We hope our blog has inspired you and perhaps you have a story to share – let us know if it has. You can leave a comment on a story or you can contact us with yours.