I wonder because several people on the forum have stated these days they are better imformed now about mpn's but after a recent encounter in town i'm beginning to wonder. I was approached by someone who was at a macmillan stand asking if I was aware of them and what they did for people with cancer and also if I had any family members effected by it. I replied that I had a myeloproliferative neoplasm and she asked me what it was, to which I replied a rare blood cancer. She then proceeded to call the second lady over who was with her and asked her if she had heard of it and replied no. I was shocked and told them I thought they were more aware of it these days,they then asked me about symptoms and the like about it but I was so shocked that they had never heard of it that I made my excuses and left. As anyone had a similar experience? Atb,tina.🤗
Are mcmillan really aware of mpn's?: I wonder... - MPN Voice
Are mcmillan really aware of mpn's?
I haven’t had any connection with McMillan.
I can remember someone on the forum saying much the same as you though. I’m not a medical person, but the name Myloproliferative Neoplasm spells it out really.
Hope you’re keeping well
Mary
Thanks for the reply mary, I seem to remember people here seem to have mixed dealings with them. I will inquire with my cns when I next visit the haematology clinic. I feeling fine thank you mary, my grandson and I are at the tail end of a nasty cold we got, won't say flu, only men seem to get that,lol🤣 Hope you're keeping well also,tina.x🤗
I had to go into 'Boots' on Saturday and just asked for a box of Lint, I seem to be getting small sore spots on my feet and covering them with lint helps, the girls behind the counter looked at me with BLANK faces, I said you haven't a clue what lint is have you? and the two assistants shrugged their shoulders and said 'no what is it' The young man chemist came from behind the prescription counter to assist, we got chatting I told him I was a 'Boots' girl back in the day and we all knew what these things were. He offered me a job and I said they wouldn't cope with a 74 year old bossing them about , he said that's just what we need and i would take you on if you want a job. what he said then amazed me, he asked why I wanted the lint told him the story and he said what meds are you on , when I said Hydroxy he immediately said PV?. It turned out he was standing in for the regular chemist and he was a scientist at our local hospital and knew all about the problems of PV. It was most delightful to actually speaking to a 'lovely 'young man who knew what he was speaking about and also I came out feeling I wasn't quite yet on the scrapheap.
Yes, amazing isn't it, my granddaughter was due to have an operation yesterday (now cancelled,surgeon sick) but at her pre-op the nurse asked about history of blood clots in family, my daughter told her our family history with strokes, (2 myself) and my condition etjak2 the nurse looked blank but anaesthetist in attendance knew all about it and had as much knowledge as an haemo about it! But i'm still shocked some at macmillan are still in the dark about the condition. Atb,tina🤗
I don't know anything about how McMillan functions as a charity but I do know that a lot of charities use volunteers to staff stands at exhibitions. I just wonder whether the personnel on the stand were volunteer workers rather than paid staff and, of course, volunteers wouldn't be as up to speed on all aspects of cancer as the professionals. Just a thought.
Thats a very good point chris and probably right of course but it did get me thinking about when I got diagnosed and Gp put Thrombocytopenia on my notes and when i've been admitted to hospital the same or worse once when admitted for a week they didn't see it on my notes and woudn't phone haematatology when I insisted because they couldn't find it on 'their system'. I suppose we'll remain a rare breed! I just hope I don't need urgent treatment at local A&E and i'm unconscious at the time!
My specialist MPN nurse is a Macmillan nurse and she is brilliant. There is also good information material produced by Macmillan on MPNs. They are a great charity. But as ChrisAnnSen noted, volunteers working for the charity are not health professionals and are unlikely to know much about rare blood cancers like MPNs.
Yes. It seems to be a completely unknown ....condition! My gp and practice pharmacist know nothing a bout it. My haematologists knows nothing about it....well that's h ow I feel when he cannot answer my questions. I have never had any information about it apart from what I found myself and deduced from other members of this site.
To date, I have never had any symptom of the condition or the drug confirmed as such by a medical person. Only, 'that's nothing to do with your MPN'. It simply is not true. It only results in me keeping quiet and joining in with the 'purpose of the appointments' to be purely to write another prescription.
Very poor. We all need to be very resilient to live with this. There's no doubt, just re the mental effect.
They wont even support me starting a self-help group locally or even tell me how many MPN patients they have, in order that I may decide how to go about it or whether to.
Sending you all love and hugs. We are rare birds but very special! xxx
May I ask who won't support you setting up a support group? Tina x.🤗
Hospital Macmillan Clinic I visit. Or rather, the doctor I visit there. I just wanted to know how many MPN patients visited. I also wanted to put a notice up with my contact details asking for anyone interested to contact me to join a self-help group. I was told, Macmillan won't really be happy for you to do that!
Seems as if you are amongst a group of people who do not have empathy for the likes of us. I just bless the day I moved to be under an MPN specialist . Maybe Maz can help you.
How can you make that statement? Who do you refer to as 'the likes of us'? I am ET JAK2+ and living with a total lack of support apart from my own determination and a superbly supportive husband.
I have many of the side effects caused by the drug and still, many of the symptoms of the conditions. I hurt all the time mentally as well as physically but manage to make myself walk daily and do my best to keep 'up' in my mood. Even on those days when fatigue is so severe I cannot even think to combat it. However, I do feel a great lack of support from the professonals I meet. Empathy? For who?
Really sorry if I’ve offended you. I really didn’t mean it in that way
Upset rather than offended. Understanding seems to be in short supply and I have always been the one who listens.....
You said just what i was going to say. The volunteers at Macmillian aren't likely to know when most of the consultants we meet (&are supposed to be treating the mpn) don't. The age old story of it not mpn related really starts to wear thin. Hubby is having tests & referrals all of the place to help him because it's not mpn related & all the other departments once they read up say it is & nothing they can do. Such a waste of valuable NHS time & money - as well as demoralising for us all. We also just go through the motions of appointments nowadays & keep our mouths shut. I will say Macmillian have been supportive in general even if they don't know what the condition is, as have our local maggie centre. Meeting others at mpn forums have also been very helpful as well as this group.
That's good to know. My closest is about 50 miles away. My nurse is great but every other consultant I see regarding symptoms etc. does agree that they are related to the MPN. No wonder we become demoralised. There is little or nothing to help us keep the determination to 'carry on regardless'.
I hope all works out well for you and husband. M husband is the absolute best support and understanding I could hope for. that in itself is worth a fortune! xxx
I find it very difficult to find anyone with the same problem as we all have as the medic's will not tell you if there are any other people in your area. I live in the Channel islands and only ever seen two others in our sister island of Jersey.
I have met none a t all. But I will. I'm determined that we are llowed to help and support each other in our quest to just 'feel' better and gee each other up to be more proactive. Lots of love to you.xxx
If you look on Macmillan website it is mention. Also there are absolutely loads of cancers. There are over 20 types of lymphomas so we really can’t expect everyone to know about us.
Or 'anyone'? I actually do! If they don't know they should be researching as we do. They're paid enough to do the job. If I told my students I didn't know something...........?
Hi wyebird, jacklina didn't put Macmillan down, she was just stating the care she received herself. Must say my old haemo was a waste of time and I decamped to a more specialist hospital. Macmillan are wonderful and helped my son-inlaws nan when she had breast cancer and yes in the last couple of years they have reconized mpn's on their website, when I was diagnosed I like Jacklina wasnt told anything and couldn't get any answers, it was basically carry on taking the tablets! I'm thankful it is more reconised today than it was for other people and more is known about it. Atb,tina🤗
I had was greeted by ignorance when I decided to check out the Big C centre next to the haematology department at my hospital. The volunteer who pounced the moment I walked in asked what sort of cancer I had. She said she had never heard of Polycythaemia Vera and led me to the vast array of information books, none of course covering mpns. She asked if I would like a coffee and I accepted. She disappeared but immediately came back saying her colleague had overheard our conversation and said what I had wasn't cancer, I had a normal life expectancy and I wasn't going to die from it. She added I can still make you a cup of coffee but that's all. Well I wanted the ground to swallow me up. She made me feel like a fraud. I drank that coffee as quick as I could even though it was scalding hot as I just wanted to get out . Why I thanked them as I left I don't know. I burst into tears the minute I got out. It took me 2 weeks before I calmed down enough to write and complain to someone high up. I received a very apologetic reply telling me I was correct in everything I had said and was fully entitled to use all their facilities. Needless to say I haven't been back.
Hi MCW22, thats absolutely disgraceful and I wouldn't have even drank the coffee,I think I would have felt the same. How long ago was that and how long had you been diagnosed at the time? Atb, tina🤗
I was diagnosed towards the end of 2017 and I think it was around spring 2018 when this incident happened
So not long after being diagnosed. It must have been even worse for you,i'm glad you got an apology. It shows people can have different experiences. I personally go about it robotically when asked about health conditions when I have to mention it and people ask whats that, I answer casually Google it! Atb,tina🤗
Should have thrown it at them! Haha j/k
Hi I phoned McMillan because I was struggling with fatigue I told her the more I do the more I end up in bed all the next and it ending up ally 3days she just told me to try a little bit more every day 🙄 although she did give me this sights details 😁
They were very understanding to me and aware of my Et CalR. They called me and were very concerned. They gave me so much advise and were kind and understanding to me when I was diagnosed in Nov. 2018. I had a lot of issues and they talked everything through with me.
Hi Helen303,that good but some people have had a very negative experience. I suppose its who you catch on the day. Atb, tina.🤗
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