Stories
Meet our inspiring survivors
Courage in the face of cancer and of treatment is a common thread running through all our stories, even though they’re all very different. Read how appendix cancer and pseudomyxoma survivors have fought through stormy times and misdiagnoses, and yet somehow found an inner strength. Overcoming fear and uncertainty to face treatment requires immense courage and perseverance.
You are not alone in this journey. Many others have walked this path before you and found inner resources they never knew they had. By sharing their stories of misdiagnoses, difficult symptoms and times of struggle, these survivors hope to give you hope and empower you with the knowledge that healing is possible. Your own story – of resilience, determination and healing – has the potential to inspire and uplift others just beginning this difficult journey. If you would like to share, to help those newly diagnosed, please click here.
In sickness and in health
On the 4th May 1974, we married in the beautiful Christchurch Priory which was then Hampshire and is now Dorset, to have and to hold from this day forward. I didn’t realise how important the words in our vows “in sickness and in health” were at the time.
I found out I had an appendix tumour during my c-section
Oh, there’s an issue with your appendix. We’ll need to get another surgeon across to remove your appendix. There seems to be a tumour-like growth on your appendix and there is mucous leaking around your abdomen.”
A grant from Pseudomyxoma Survivor helped me
I am so grateful for the grant from Pseudomyxoma Survivor which I received. It has helped me financially during such a difficult time.
I was admitted to hospital with abdominal pain and operated on the next day
On March 1st 2016, I was admitted to hospital with abdominal pain and operated on the next day. The surgeon found a tumour in my appendix and mucin throughout my abdomen. My story is about what happened next, my surgery, coping with the stress and the positives that came out of it.
My Olympic Victory
Four years ago, I had to give up my ticket to watch the London Olympics to go to a hospital appointment and be told I had PMP and had only ‘a few months’ if Basingstoke could not offer me CRS and HIPEC. Now I’m in Rio!
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.
Too young for cancer
It’s tough being only 20 years old and an appendix cancer patient at that. Mainly because no one expects or even wants to believe you could even end up developing cancer, and the worst culprits are medical professionals. True, the odds are so low it’s a waste of time to even bother, but that ‘waste of time’ could have cost me my life!
Don’t give up hope!
On February 2nd, 2011, my appendix burst and I had an operation in Burton-on-Trent. I was 36. On March 7th, I received a letter from the hospital saying I’d missed a follow-up appointment for a suspected case of PMP. I hadn’t received the original letter and just what was PMP? I looked it up on the internet.
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.
I knew that I didn’t have textbook appendicitis but does anyone really have “textbook appendicitis”?
I cried as I was driving home from my doctor’s appointment. Then I picked myself up when I got home and googled “low grade mucinous appendiceal neoplasm” because I needed to know everything about this new enemy. That’s when I found the term pseudomyxoma peritonei.
My PMP journey and why I’m doing my bit to raise awareness
I was diagnosed with PMP aged 32, after many months of stomach pains, bloating, constipation and irregular periods. After numerous trips to my GP, which led to an ultrasound and eventually a CT scan, I was told I had a nine centimetre tumour on my appendix which had burst and leaked cancerous mucin into my abdominal cavity.
Putting on your happy face every day to those you love, trying not to worry them, has been exhausting
It is not in my nature to reveal all of the everyday trials and tribulations to every person I meet. I do believe that this has been the hardest thing I have ever done in my life, and to try and remain calm, cool and collected in the face of such an obstacle, has been exhausting, to say the least.
I didn’t have endometriosis, I had PMP
My story began a few months after I got married. My first symptom was the sudden onset of intense pain while I was at work one day. After a few hours, the pain subsided but I decided to make an appointment with my family doctor a few days later.
I was told it looked like ovarian cancer… but it wasn’t
After my diagnosis with metastatic, well-differentiated mucinous adenocarcinoma of the appendix, my doctor said I have a 72% chance of being alive in 10 years; those are great odds for a cancer patient.
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 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.
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.
The patient stories shared on this website are personal accounts of individuals who have been affected by pseudomyxoma peritonei (PMP), appendix cancer, or related rare peritoneal surface malignancy (PSM). These stories are not intended to provide medical advice, diagnosis or treatment. Every person’s medical situation is unique, and what works for one person may not work for another. The stories shared on this website should not be used as a substitute for professional medical advice, and readers should always consult with a qualified healthcare provider regarding any medical concerns or questions. The views and opinions expressed in the patient stories are those of the individuals and do not necessarily reflect the views of Pseudomyxoma Survivor or its members.