Pseudomyxoma peritonei

Pseudomyxoma Peritonei is a rare cancer of the appendix. If you're suffering from PMP, or know someone who is, join this support group.

Hi! I'm new here

Kylo
Posted by
Hi .. I'm new and am posting my profile info as I'm not sure what else to say! 
I'm from Adelaide in South Australia, am female and am 44 years old.
I was diagnosed with PMP in August 2018 after surgery to remove a mass from my pelvis (along with full hysterectomy and appendectomy). This came about due to ongoing pain in my side which was investigated with ultrasounds and a CT scan. 
I'm in the process of pre-admission paperwork to have MOAS (cytoreduction and heated chemo) in November 2018.
I have been unable to find any Australian forums or support groups so have turned further afield for some support and help.
It's such a weird cancer and I feel like I need contact with others!! 
Adelaide, South Australia
Flowery
Posted by

Hiya  from the UK , I have Early stages pmp and I’m due to have surgery and hipec next month , there are a few support groups on Facebook which I’ve found helpful such as pmp appendix cancer support group , it’s a private group with people from all over the world in it , there is lots of info on there which I’ve found helpful , particularly when I thought I was the only person dealing with this ha hope you are doing alright considering x 

Kylo
Posted by

Hi Flowery .. thanks so much for your reply :) 

I've been off Facebook for almost two years now after getting a bit tired of all the drama but I have been thinking lately that this whole business is going to be pretty lonely without being able to reach out to others (both others with PMP and my own friends/family too). So I think it's time I got back on! 

Also I was reading back a few discussions on here and saw your post about having your op .. everything crossed for you!!!  There won't be many times I can offer any kind of advice or reassurance to other patients but as far as early menopause goes (just so you know) that's been super easy for me after having my first op almost 4 wks ago. I was put on oestrogen tablets straight away and have literally had not a single symptom of menopause, so it's been one less thing to even think about let alone worry about!! I'm sure you'll be fine as far as that goes .. it's just all the rest that's so bloody terrifying :( 

Am off to have a look at Facebook again now ....

Adelaide, South Australia
Flowery
Posted by

Thank you for that reassurance , all this is such hard work as it is and it’s good to hear that maybe something I was so worried about won’t be as bad after all . The support groups really do help especially when you see how many other people are in the same boat as you and are doing ok at the end of it . Keep in touch and good luck x

pmpsurvivor
Posted by

Welcome to the group, Kylo, although under these circumstances. Unfortunately, many of the wonderful forums such as this one seem to be very quiet now as people move towards Facebook which is such a shame. As easy as Facebook can be to use, there is something to be gained from forums such as keeping it away from your personal life and being able to have some degree of anonymity if you wish.

Where are you having your surgery and HIPEC? At the Queen Elizabeth Hospital?

Angela

Kylo
Posted by

Oh my gosh Angela ..I just looked at your profile.. you had your surgery 7 yrs ago?! How are you doing? 

Thanks for your message.. i agree that having quiet forums is a shame especially as a lot of people go looking online for support first (not necessarily FB) and not finding something like this makes for a very lonely experience.

And yes I'm going to the QEH .. it's only 25 mins from my house luckily and my surgeon is very calm and confident so he makes me feel the same (until I start googling for more information and freaking myself out!) 

I'm thinking this morning about asking friends and family to send me their favourite photos of themselves so I can take them into hospital with me and have something to look at to make me smile on the ward .. what do you think? I know it's by far one of the smaller details but it just occurred to me when I woke up today and it's something I can control  

Adelaide, South Australia
Flowery
Posted by

I’m taking photos too and something that smells nice to make the room smell less like a hospital , also treat yourself to a nice hand cream or something , little luxury’s made me feel a bit more human during my last hospital stay. X