Shelly
On the 23rd January 2007 I got a telephone call from the gynaecologist saying my CA-125 test came back elevated and I would be admitted to hospital on Sunday 28th January ready for surgery on the 29th.
Monday came and I was ready for my op, 3 hours later back I came expecting to be told “the operation went well we have removed the cyst”. This was not the case, I had to have a hysterectomy and my appendix removed because there was something else wrong. “You have mucus in your abdomen, but don’t worry it’s not cancer but we will send you to The Christie in Manchester where they deal with this type of thing”, I was told.
I was discharged from hospital on 2nd February 2007 knowing there was something inside me but not what. Thinking I hadn’t got cancer and a Macmillan nurse visiting me did make me question what I had been told at the hospital. But I tried to not let it play on my mind.
A week after a letter came from The Christie saying I needed to have a CT scan before they can see me, in the letter was the information I needed, a diagnosis, pseudomyxoma peritonei (PMP). At last a name! I could look it up on the internet. The first thing I found out was that it is cancer and a very rare one too, only one in a million people a year get it.
I received my CT scan and the results are at The Christie, they had a meeting on the 19th March 2007 to discuss my case. I then went up a week later to find out the outcome.
After many tests I underwent an operation on 10th September 2007. The op went very well, they removed my spleen, gallbladder, omentum, a small amount of colon and all the mucin. They also did a hot chemo wash to make sure they got every last bit. After 2 weeks in hospital I was discharged and continued to recover in the comfort of my own home. I continue to have follow ups at The Christie with blood test, CT scans and consultations from the specialist. All was progressing well with results coming back all clear, the anxiety and anticipation of having the check ups have never changed.
In January 2009, I took a turn for the worse suffering intestinal blockage which meant enduring further surgery to eliminate the problem. The cause of the blockage was adhesions from earlier operations. I was on the road to recovery again but had been advised that it may not be a long-term fix. Due to the previous operations, it was pretty certain that I would suffer from side effects of the adhesions in the future also.
I still have the all clear from the cancer but unfortunately due to the continual pain from the adhesions the reminder of everything that I have gone through is there every day. I am thankful to all the doctors, nurses, family, friends and fellow PMPers for all their help and support.
– Shelly
In case you missed it...
The disease was actually growing out of my belly button!
I do an exercise class and I was having trouble keeping up and my belly was growing with no changes to my diet. In my head, I was thinking that was just signs of perimenopause and that was my new figure. Some women just have a muffin top at 44, right? I was also going to the restroom for frequent urination. I was under the care of a urologist for that at the time of my diagnosis with pseudomyxoma peritonei or PMP.
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.
When you’re faced with life and death, you choose life
I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.
Hi, my name is Suzanne Zimmerman and I’m a ten year survivor of Appendix Cancer/PMP/Mucinous adenocarcinoma. I was given 3 months to live ten years ago. I’ve had the debulking and heated chemotherapy. Over the years I’ve had partial bowel blockages and ALOT of adhesions in my peritoneal cavity which have lead to many days of extreme pain. I live my life on a day by day basis. I can be ok one minute then be crying in pain 15 minutes later. It’s frustrating to have something so internal, that when people look at me they may think , ” Well she LOOKS fine”, and I’m not. So, I enjoy the good moments and lean on God for everything else.
Suzanne
Thank you for sharing your story with us. It takes a lot of courage and strength to battle with a disease like PMP. Your resilience and determination to live life on a day-by-day basis are truly inspiring.
It’s not easy to deal with the aftermath of cytoreductive surgery and heated chemotherapy. Partial bowel blockages and adhesions can cause severe pain and discomfort, making everyday life a challenge. It’s understandable to feel frustrated when people cannot see your pain, but please remember that your feelings are valid.
Despite the challenges, it’s heartwarming to hear that you still find joy in the good moments of life. It’s essential to cherish those moments and hold on to them during difficult times. Faith can be a source of comfort and strength for many people facing health challenges.
Thank you for being a survivor and sharing your story with others. You’re not alone, and we’re here to support you on your journey.