Cath & Jonathan
My partner Jonathan (56 yrs) was diagnosed just before Christmas 2012 with stage 4 pancreatic cancer. Cath talks about their journey, our specialist nurses and how she has continued to be involved with Pancreatic Cancer UK after Jonathan's death.
My partner Jonathan (56 yrs) was diagnosed just before Christmas 2012 with stage 4 pancreatic cancer.
It was a terrible shock as he had had so few symptoms and the diagnosis was terminal with mets on his liver and peritoneum. In that terrible limbo over the holiday period waiting for the first appointment I found this charity’s website and, in particular, a page listing all the questions to ask at your appointments after diagnosis. I wrote all the questions out into a little notebook I then took to the appointments. It was such a help and I always carried my little notebook, writing the answers in as a record for the next time. It was good to know there were people out there who knew about and understood what we were going through.
Later I registered on the discussion forum and got a huge amount of support from people who were going through a similar thing at the same time. Some of these people have become real life friends since.
One weekend, looking for some advice online about a new symptom, I found the email address for the support nurses. I emailed, not sure what to expect and was amazed and delighted to get a very comprehensive and friendly reply in return. I replied to the email with some more questions and was even more delighted to get another comprehensive and friendly reply. The nurses and I continued to email afterwards and they were a source of encouragement with helpful advice over so many things like dealing with chemo side effects, drugs,etc.
The contact with the charity, the nurses and the forum really changed our journey (although sadly not the eventual outcome) and I was/still am so grateful to everyone for the support we both got.
I decided, after Jonathan died, that I would like to give something back to the charity. Jonathan died January 2014. Since then I’ve organised a benefit to raise money for the charity and have been involved in various other bits of work for them. I sit on the Patient and Carers Advisory Board and am now privileged to help host the Family, Friends and Carers’ Cuppa. It’s great to be able to give something back supporting and listening to people like me and Jonathan.