Hello there fellow - very rare and therefore special - peritoneal mesothelioma people.
I've had quite a journey getting a diagnosis, having spent 2.5 years being told I had End Stage Liver Cirrhosis and not being referred to a Centre of Excellence.
I'm now under the care of Papworth/Addenbrookes and although the diagnosis was unexpected, I am actually glad to have it, and finally know what is going on. I love them all there, as they genuinely have the patient at the heart of everything they do. My local hospital - different story.
And yes, I do plan on writing a book!
I am currently waiting on a Chest/Abdomen/Pelvis CT for staging purposes. Then I will start immunotherapy followed by chemotherapy- unless the chemotherapy is palliative, in which case I would want pain management only. I've worked in medicine most of my life, including in a hospice, so I'm very realistic. I would rather have 6 months of reasonable life than 10 months of vomiting etc.
I live on my own - well with my 3 legged cat Billie (female) by choice. Was married for 34 years. Have kids. I ride motorbikes, marshal classic bike events, read books, watch far too much television and love walking.
Hope this gives you all a brief overview of me, and why I am here. I have no problem with anyone asking me questions.
Hi AllieP sorry to read about your journey so far.
I have lived with Asbestosis since 2012 but I am fortunate that it has behaved itself….. even more so as I have been busy dealing with 2 rare types of Lymphoma for over 25 years.
Let’s look for group members to pick up on your post.
