I am so grateful for the grant from Pseudomyxoma Survivor which I received. It has helped me financially during such a difficult time.
A grant from Pseudomyxoma Survivor helped me
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I’m now on ‘watch and wait’ following a diagnosis of pseudomyxoma peritonei
For me, it all started with blood in my urine and an increase in the size of my stomach. In retrospect, I could feel the mucin moving when I walked. Now I’m on ‘watch and wait’.
The Sugarbaker technique
The Sugarbaker technique was developed by Dr Paul H Sugarbaker at the Washington Cancer Institute. and involves CRS and HIPEC.
We thought it was nothing more than an ovarian cyst
My journey started in October 2013 (I was 53 years old), when I had an ultrasound to determine if I had gallstones or an issue with my gallbladder. The results showed a small cyst and mild fluid in my lower right abdomen area. It was decided that we would monitor the cyst and fluid and have an MRI in one year. We thought it was nothing more than an ovarian cyst. I never thought it would lead to a diagnosis of Mucinous Appendiceal Adenocarcinoma.
This illness sucks but I’m embracing the moment
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….
Being sick
The last year and a half has been a profound and unmooring experience, and one I turn over in my mind with gratitude, disbelief, and amazement.
I was convinced I had gallstones but it wasn’t gallstones
After an elderly relative was admitted to hospital with gallstones and, after researching her symptoms online, I was convinced I had the same problem. I pestered my GP to refer me for an ultrasound which eventually showed I had no gallstones, but “a fair amount” of fluid around my liver.
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).
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.
About us
As well as raising awareness of pseudomyxoma peritonei, Pseudomyxoma Survivor is online global family of both PMP survivors and caregivers. Each day we see firsthand how patient advocacy and peer support helps in a real way. We see people supported both in a group environment, through our Facebook and RareConnect groups, and getting 1:1 support through our buddy scheme.
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.
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.