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
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jillydabrat
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Well done. That's a fantastic piece of networking. I agree that to get MacMillan on board lends even more credence to the struggles of life with MPV's for so many. Thank you so much for following through on this. Bruddery
Wow fair play to you and your hubby for taking the time to do this. It surely will benefit a lot of people. The problem I find is that I look really well but.........
Yes. Its good to hear that MacMillan are listening. Also that they need to update their info to Myleoproliferative "Neoplasms" instead of the more ambiguous "Disorders". Thanks Jilly for putting your frustration into positive action and Maz for your continuing support as our catalyst for change, despite your own struggle with ET. X
My husband was diagnosed with myleofibrosis and myleodisplasia in 2010. We find many people on here with MF but not MD and wonder if it is very rare. Therefore we know very little about MD and would like to know what Macmillans take is on this disease. Thank you.
Sorry to here your Hemo / doc don't communicate well. I notice you also use James Cook. We have a specialist in MPD There, her name is Dr plews ( could be spelt wrong?) also Dr wood is good. I see Dr Nurousi who is nice although symptoms seem to pass him buy unless they are likely to kill me! Haha. Try to get Dr plews .. Hope this is helpfull.
Hi craigdarcy, thanks so much for your comments. Is Dr Please a haemotologist? I am due to see my haemo tomorrow, Dr Marianna David so would love to hear back from you before then if you can. I have been in touch with the Freeman and a Professor O'Brien holds an MPN clinic there every Thursday but my GP refuses to refer because my bloods are okay at present. He actually told me and my husband that because my blood levels are all in range at the moment then I am not actually suffering from PV. I could have dropped through the floor. I had to leave before I blew up big time about his lack of knowledge and for saying such a stupid, stupid thing.
Yes she is the head at James Cook hamitology although she is quite a big cheese in her field. I understand from a doctor friend we both share that MPDs are her speciality . Good hunting.
You were right with the spelling, clever you. It's Dr Diane Plews at Haematology at James Cook. Just phoned the department to see if she specialises in MPD's but the receptionist "was ot really sure" so I will have to ask Dr David tomorrow. Would be fab if Dr D would hand over my file to Dr P. I did look Dr P up in the consultants list at James Cook and it did say special interest in red blood cell disorders. Will update tomorrow. At least my GP can't moan if my file is just transferred like he did when he refused my request to be referred to the Freeman. I know it was his concern about the cost that stopped him referring me. When I had my new patient check with the practice nurse she told me she would be doing my INR tests. I told her she wouldn't as it was done through the hospital with a finger prick test as I had had my lymph nodes removed from my right arm when I had breast cancer so you are not allowed to have any injections of blood taken from that arm as it can cause Lymphodemia (?sp). Because of this the poor veins in my left arm are badly scarred and it's virtually impossible to get blood out of them anymore. The nurse said "Dr Dave will not like you going to the hospital for your INR check because it's more expensive ". Well TOUGH! I was actually becoming needle phobic because it was taking 6 or 7 attempts each time to get the smallest amount of blood. In the end I flat out refused anymore INR blood tests which is when my old GP practice referred me to the hospital. Rant over lol, cup of coffee and a sneaky biscuit me thinks x
As I said I know her via a GP friend of my family, the kids all school together. On of the other hemotologysts at J Cook told me she is top dog on MPDS and consults in London with research etc. I haven't been transferred to her myself as my Hemo is great and better to keep things separate sometimes for me.
This is fantastic news. We are being recognized at last for this debilitating condition. Well done to all those concerned in making this happen. Maz not only are you a lovely person, you are also a champion for MPN.
Yes Jillydabrat, I know how frustrating it is to hear your bloods are within the normal parameter when you feel you just want to crawl into a hole. I am very happy to have those pesky bloods within the limit by the way, but how frustrating is it to not be understood as to how you are feeling. . On a good note, appointment today was encouraging.
That is fantastic news. My platelets have just gone up again, second month running, to 678 but he is happy with that reading. That is one consultant that needs direction from this study!!!!!! 😃 x
Fantastically well done, Jilly, and who knows the good you will have begun and so many new people helped, just because you took this initiative. Good on yer!
Thank you I find your post very encouraging as when first diagnosed with mpn I saw a macmillan truck but could find nothing about mpns the people on board were lovely but knew no more than me about my condition I eventually found this site but not before me and my daughter had been through hell and back . I had by then found maggie's in nottingham but came on here and got such support decided to start a mpn support group in nottingham. At the time I was starting this angela the specialist nurse started and maz and angela now run the group.what I am trying to say is hopefully with more support groups and specialist nurses for mpn and now macmillan becoming involved hopefully no one will have to go through the years of hell me and my daughter did x thank you for sharing
Hi Shelly, I am meeting Kay from MacMillan on Monday at the Cats Whiskers coffee shop oin Guisborough on Monday so if anybody wants to meet us there then please free. I will update as soon as I get home, hopefully with some positive news xx
Glad that MacMillam is taking us seriously now. 5 years ago when newly diagnosed with Et I phoned their helpline to talk to someone about what to say to family and friends. To say I got brushed off was an understatement, I got the feeling that they either had not heard of it or did not think it a serious condition. Needless to say I have had nothing to do with them since that. I just say thank the Lord for MPDVoice
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