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’.

Pseudomyxoma survivor Susan with her family

I had an ultrasound and a large cyst was found. They could not see where the cyst was attached as it was so large, the size of a small baby. After surgery to remove this cyst, I was given a diagnosis of pseudomyxoma peritonei (PMP). It took three months from when I originally saw my doctor to getting a diagnosis.

At my local hospital Poole in Dorset, I had a full hysterectomy and my appendix with the tumour removed as well as part of my bowel a small section of my stomach lining and 2/3 litres of mucin. If I was to recommend anything to have in hospital, it would be your favourite perfume because it helps make you feel human (although I know this might not be true if you have had HIPEC as it can affect your sense of smell for a while).

Pseudomyxoma survivor SusanI listened to my favourite music when I first came home and slept a lot. The biggest change I faced after my operation was to become reliant on my husband. I did my family history and I watched a lot of daytime television. I went on a pre-booked Mediterranean Cruise 6 weeks after my operation.  I was told in my local hospital that I would have a further operation but when I saw Mr Mohamed at Basingstoke and North Hampshire Hospital six months later (!), I was put on ‘watch and wait’ with yearly scans. Emotionally, I’m constantly anxious and I find support both from my husband and from Pseudomyxoma Survivor. I do sometimes get tired and have stomach pains but otherwise, I would say my health is good. I do feel guilty as I have been lucky compared to a lot of PMP patients yet I am anxious all the time.

My advice for someone newly diagnosed is to take a notebook and someone with you at your appointment with your consultant. Write down any questions in the book beforehand and make sure you go through them all. If possible, record the meetings with your consultant. You can be so emotional at the time that it’s difficult to take it all in and remember afterwards. Talk about your concerns. If you don’t feel you can do this with family, find a friend who will listen and make sure you join the support group.

– Susan

I'm on watch and wait

Susan’s story is in her own words and we’d like to thank her for allowing us to share it.

Watch and wait

'Watch and wait' is also called watchful waiting or active monitoring. Sometimes, as hard as it is, there's nothing to be done but wait and see how the disease develops before going ahead with a course of treatment.

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