Hi Guys and Girls, first of all, Maz, the MPD poster is now on the wall of James Cook Haematology Clinic so, hopefully others can find this site which has offered me so much support and advice.
On the info board was a notice from MacMillan Cancer advertising for patients experience with cancer. I made contact via email last week and today met the lovely Kay for coffee. Kay was looking for people with either lung, bone or blood cancer to discuss patients experiences from first sign of symptoms to diagnosis and treatment. The MacMillan Foundation had given Kay an 18 month contract to process all the information she could so that MacMillan could contact health care providers with their shortcomings regarding these 3 forms of cancer. They had to limit it to 3 because of the case array of cancers.
I sat with Kay and my hubby and we talked about everything, especially the frustration of getting consultants and GP's to listen to a patients symptoms and realise they exist even though blood levels are within acceptable parameters. I told Kay that the difference in support and information from when I had the more "popular" breast cancer to what I was receiving with my PV was like chalk to cheese. it turned out I was only verifying what she had discovered so far. I told her about MPDVoice and asked her to check out what was, or should I say wasn't happening to patients under the MPV "umbrella". My history of delay in diagnosis, the research I was having to do myself because my health professionals hadnt a clue about MPD's, and the lack of communication was what she had found in everyone she had spoken to over the last 18 months. Apparently MacMillan were so concerned with the findings they have extended her contract for another 18 months. Kay asked if I could meet her again next week to go into more detail and I agreed on one condition, that she visits this site to read other people's story.
I am so relieved that an organisation as big as MacMillan is listening to peoples stories and doing their utmost to ensure health care professionals treat patients as people with struggles and concerns, not just a diagnosis. God bless you MacMillan CC for everything you do. I will keep you up to date on what happens at our next meeting