I'd just like to say that I think every single person on here is absolutely amazing. I'm so glad there is a space where people can come to connect and open up about this horrible rare disease. I was gutted to read updates of those that had lost loved ones and I'am deeply sorry for your loss. 
 

My mum turns 59 this year. I love her so much. She was diagnosed with PPC in 2018, after a rare stay in hospital which we all thought was due to a nasty chest infection. It turned out that there was fluid on the lining of her lungs which was tested and it showed cancer. With further investigation it was later discovered to be PPC. 

My mum has since had the talc drainage procedure, debulking  surgery, two rounds of chemo, a semi permenant pleural drain which has now been taken out (they say chemo helps dry up the fluid from the lungs) and my mum is currently not on any treatment. Her symptoms have started to come back again so she's booked in for a scan to check that there's no further progression.

She has no appetite, but try's to eat because she says she knows she has to. The tiredness and lack of energy makes it difficult for her to want to go out and enjoy life and she can't get about without a wheelchair now. She is losing weight all the time and it's really hard to see someone you love so much in that way. 

There is talk of hormone therapy and chemo tablets, but my worry is that one day my mum won't be able to have treatment at all. It's a cruel game of Cat/mouse always trying to keep one step ahead of the cancer. Or keep it at bay. 

Im not ready to lose her and she is not ready to die. She has four kids, and 6 beautiful grandchildren. I just hope that they haven't exhausted all the options and we can keep fighting. 

sending love, thoughts and best wishes to you all xx