Pseudomyxoma Peritonei

First-time poster here. My mum has been diagnosed with Pseudomyxoma Peritonei and I am struggling to wrap my head around it as a whole. She has brain damage and is disabled (the bd covers memory loss, tiredness and her physical mobility isn't strong, needs a stick etc), so when in hospital, I act as her first point of contact and support along with 2 other family members.

I have to explain any diagnosis or information in layman's terms to my mum so she is able to digest it and I don't even know where to begin with understanding and explaining what this is to her.... Has anyone on here been through this or supported someone who has? If so, any advice or guidance on what to say or expect would be greatly appreciated!

 

  • Welcome to the forum Winter-ton although I'm really sorry to read about your mum's recent diagnosis.

    I've had a quick look around the forum and wanted to put you in touch with our lovely [@Cavecrawler]‍. He was diagnosed with pseudomyxoma peritonei 10 years ago and updates his blog regularly which you can have a look at just here[@Jules213]‍ found out she has this in February this year so hopefully you'll receive some good support and advice from them soon.

    We also have a section about pseudomyxoma peritonei on our website which I hope will help make things easier to understand and explain but you're more than welcome to give our cancer nurses a call about this next week on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

    Best wishes to you both, 

    Steph, Cancer Chat Moderator

  • Thank you Steph, this is all incredibly helpful!

  • You're more than welcome :)

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hi Winter-Ton.

    I was diagnosed in February following a laparoscopy which found a tumour on my appendix. I had been unwell for about 4 years. I tell people it's appendix cancer and that it ruptured and spread jelly in my abdomen. I was referred to a specialist unit straight away and I had extensive surgery in April. I am still recovering now and it has been very difficult. The specialist unit were great and very supportive. They should be able to help you and your mum. I joined a group on Facebook but you do have to be careful what take from it as there are lots of different comments made. There are lots of different types of pseudomyxoma peritonei so treatment varies. I don't know if this will help. Please feel free to ask any questions. 

  • Hi Jules,

    Thank you for your advice. I had no idea there were different types of Pseudomyxoma Peritonei. We have the consultation with the specialist hopsital in 2 weeks, so hopefully we will know more then. When were you given a more specific idea of what kind it was and where it began?

    The worst part is the waiting as my mum just wants it done with, bless her. I am glad to hear that you are recovering and I hope that it goes as fast as possible for you, I can't imagine how long of a road it must have been. I appreciate your help.