Hello I was diagnosed with primary peritoneal cancer 5 yrs ago sorry this may be a long post but my consultant suggested I share my experience with you.
When first diagnosed I went straight on the internet I gave myself 2yrs to live as information indicated this, that was the last time I went on it, t frighten me so much , I met a lovely consultant who's words still ring in my ears there's always hope she said, I had 3 months of chemo then a.full hysterectomy with removal of my omentom and then 3 more months of chemotherapy, cancer had gone , 6mths later it was back , I restarted treatment and when this finnished I started a maintenance drug , this drug works better if you have brac.1 gene which I.dont have, it didn't work for me , it has worked for some , I've have had various chemotherapy treatments , caylex was the worst one made the skin under my arms and breast red raw, my consultant even tried to get me on a.trail unfortunately there was non suitable for me it is a rare.cancer and only treatment is same as ovarian cancer,, they use the word palliative treatment don't be scared by this I was at first it doesn't mean you are terminal in my case they are still treating me, I keep my self as healthy as possible and have a possitive approach to treatments and life i smile.every morning as its another day im here sharing my love with my family .i've had great consultants who work with me we keep an eye on my ca 125 levels how I'm feeling and scans the longest I went with out treatment was.18 months, last may 2023 I was very poorly due to a bowel blockage I had narrowing of the small bowel I lost a lot of weight it was weight I had to loose so don't stress if the steroids put weight on you it worked in my favour, my chemo was stopped ,I had a year from hell to be honest I was angry that I might die from something else when I fought so hard against the cancer, I was admitted to hospital again in January I think I certainly have a guardian angel the consultant said he would give my a.chance and Try to remove the area of the narrowing of the bowel and I may have a stoma bag I had a resection instead and it's great to be.pain free , my ca125 markers have only grow at a slow pace I'm starting chemo again 28th Feb, this is my 7th round of chemo 40 lines in total my consultant says I'm the topic of discussion at every consultant meeting yes I shouldn't be here but I am so that word of hope at the very beginning has carried me a long way I live my life the best I can I don't give cancer the time of day it doesn't define who iam and as I say to the consultant I'm not a statistic or number I'm an individual . I wish you all well on your journey and have hope xx
