MPN Voice
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Come on everyone, buck up!

Hi everyone,

I haven't been on health unlocked for ages because I seem to always see miserable posts!

Yes, I know it's great to unload your miseries when you're feeling down but have you all thought about the newly diagnosed who might be reading all this and thinking, my God. I might as well give up now.

Personally I'm thankful I only have Pv.

I go to the biggest cancer hospital in the north of England every 5 weeks. I see people in their 20's and 30's who've lost heir hair, who have blackened and bruised hands and arms, in wheelchairs, and just looking simply ghastly.

You know, I'm a great believer in the power of the mind. If you think positively, and count your blessings, and look at the good things that you DO have in your life, that can really help.

I have a completely separate condition - NOT connected to PV- called histamine intolerance, and interstitial cystitis, which makes me go to the loo about four times a night. If I deviate from my hugely restricted diet I have massive sleep problems, nausea, headaches, soreness under my skin, irritability, depression, itching ( not PV itching) and a plethora of other unmentionable problems.

I can only eat chicken, lamb, vegetables, rice and fruit.

I can only drink rooibos tea, water and elderflower cordial.


Quite frankly it's a pain in the butt. We can only self cater if we go away - even overseas.

I have to take my own food everywhere if we go out for dinner or lunch.

Do I let it get me down? No.

I look at all the poor buggers round the world with no home, no food, dying children and I think , crikey, how lucky am I?

So come on, buck up and look on the bright side.

Rant over.

Lots of love. Louise.


47 Replies

Hi Lou, all credit to you! A brave but important message to us all. Thankyou. We are on the whole so very fortunate. I admit I look less at the forum now as i find it can affect my state of mind negatively. There are things we need support and opinion about and we dont have many other avenues available to us but I guess we need to remember perspective and that we all experience this differently. My positive thought for today? Well, im really looking forward to my work in the lakes this week where i am fortunate enough to be taking a group of graduates out on the lake, im feeling a little tired, but a walk around Bowness will sort me out. Bring it on!


Hi Jo! Ho ho!

Call in! I live in Bowness and would LOVE to meet you - tea and buns for graduates too!



015394 45612. Or 07921 057552


Ps Thanks for your lovely post! Thought mine might get me into all sorts of trouble.....



No way! Thats an amazing coincidence. I'd love to but i think time will be too tight this week. I might be able to arrange an earlier train next week and possibly meet late afternoon in town for a coffee?


Sounds good, just let me know.



Hi Louise, I must say I find the forum has been doing the opposite for me! What I see are people who have got a serious condition usually accompanied by other ailments giving up time to support others. I think everyone is entitled to have a miserable moment, get support from other lovely people and in turn support others. The magnificent support shown for Chris in particular has shown great warmth, empathy and genuine concern for another human being.

I consider myself very fortunate to have stable PV at the moment and although usually pained by other ailments I just get on with life but on the odd occasion feeling down, have immediately received support from forum members. I know there is always someone worse off than me but day to day I have to live with what I have got and sometimes a little moan on the forum followed by wonderful replies just emphasises to me how lucky I am to have friends who are strangers in a way but know me in other ways. Kindest regards Aime xx 😺


Well said x


In fairness i havent seen anything to suggest that this forum is a 'positive' only forum. Online communities are a great way of sharing experiences both good and bad, bad ones happen its a fact of life. To dismiss someone if they dare to say they feel down or unwell and say 'get on with it there are people much worse off' is a very dangerous approach.

Do you know your more likely to suffer from anxiety, stress or depression if your afraid to share a problem because you consider it trivial, imagine going to the GP feeling depressed and being shoved out the door just because there are people worse off somewhere else.

In fact, i am a member of another online community, nothing to do with health problems, but one of the regular posters decided to share just before christmas that he was feeling depressed because he had no one, and would be spending christmas alone, he openly admits the response on the forum helped him through a difficult period, i know people took time out to go online and message him on christmas day..i dont recall a single post from anyone saying 'just get on with it mate things could be worse'.


I agree that positive thinking is very important and to live life for the moment. Was diagnosed with MF a year ago and once I had my head around it and decided I was not going to live with MF but instead, live in spite of MF, I have had more energy, felt better than I have for years and really appreciate everything, especially the small things. We're only here once, it's not a dress rehearsal, let's live life to the fullest while we can so we have great stories to tell when we have to take things easier :-)


Hi all,

Great! Let's get a discussion going !

I take on board all comments re support, but I also buddy quite a few people, a couple of whom are newly diagnosed. One was incredibly spooked by the seemingly majority of rather glum posts and has unsubscribed as a result.

I also agree re the incredible level of support shown for Chris - I email him personally with my support - but let's face it, his torrid and rather exceptional experience needs masses of support....what a long haul it's been for him, and how fantastically he's done.

We're all different aren't we? I'm lucky to be a cup three quarters full sort of an old bat, I know some folk aren't so fortunate.

Re the poor chap who was alone on Chrsitmas day - did anyone ask why?



Yeah they did, sometimes people find themselves somewhere in life when there is no one


Wow Louise! Worms and cans spring to mind!!

I can understand what you are saying. When I joined this forum in January 2012 there were just about 300 members. You were allocated as my buddy by Maz, ( who, by the way I thought was male, don't know why?) I was looking for information and via your lovely e mails to me I realised things weren't so bad. I was petrified of taking Hydroxicarbamide and by corresponding with you I realised it may not be so bad. I know you had your own health problems but you didn't inflict these on me, just told me honestly what I needed to know. Well, I eventually started the Hydroxy two and half years ago. I know I have been lucky and suffered no side effects whatsoever which I have posted on this Site many times. I think there are so many members now that people that feel ok tend not to log on so much. I feel it's invaluable for those that want advice on a problem, but as with all things 'internet' read all the views not just the miserable ones. I am basically a very private person and would not post some of questions and replies that I have read recently, but that's me and I just overlook those.

I know I have a lot to be thankful for and I am, but I'll always be a glass half empty person!

I think Chris must be a glass and a half full! He must have felt absolutely wretched at times over the last few months but always leaves an upbeat post. Good on you Chris!

Love to all

Judy xx


Well done Judy, great post!

I know I can be really outspoken sometimes but that's me.

I think that we need to often state the positive as well as the negative, for the sake of those who only have contact with other MPN patients via this site.

Yes, this site is so invaluable and such a support for the folk who aren't feeling quite as well as we are, but we must remember that there are people out there, newly diagnosed, lacking in confidence, who want to hear the good stuff as well as the not so good. You're spot on, perhaps only the patients looking for support and a bolster post comments which is understandable.

Maybe there are a few bods out there who'd like to post that they're feeling really well?

One of these days we'll meet up!



Have you missed all the positivity poured into this site by members all the time. Twinkly comes to mind first as a prime example. I guess human nature is such that two people can read the same thing and one sees positive and one negative. Maybe it depends on the frame of mind we are actually in ourselves when we read it? I always TRY to be positive but maybe I'm known for moaning too -I don't know. I agree that people should not be scared to share their doubts and worries here for fear of being negative. We have such a rare condition that we are unlikely to have a neighbour or close friend to share our worries with. Questions asked here are often taken up by Maz and she asks Prof Claire Harrison for an answer that she relays on here. That is for the good of us all surely

I know when I am not feeling so great I tend to avoid all forums until I feel better able to cope with others' problems as well as my own. We don't have to read what is written here but someone may have had the courage to ask a question that as an individual we were scared to ask. If newbies are scared off, perhaps it might be that they are not ready to face the realities of what they in turn might face but I think we should be wary of complaining about people expressing what they need to on this forum. That is surely the point of a forum - a place where we can rant, ask for help, be positive or negative and know we can do it safely and without criticism

Just my thoughts!


I am newly diagnosed with PV and I am really glad to read the response from Louise. She is my buddy and has been so positive for me in the bewildering and stressful situation I find myself in.

Positive thoughts make such a difference when you are trying to come to terms with a life changing diagnosis.



Thanks Jane! You know the really lovely thing about being a buddy is meeting delightful folk like Judy and Jane, and all the others not mentioned here.


I'm with you Louise , We really have nothing to moan about , compared to some people , I think It's easy to get carried away with negative posts ,

So hears to a Very Possitive Healthy & Happy 2016❤️

Thanks for the kick up the jacksie X


Well said. I always say there is someone somewhere much worse than me! Last time I was at the consultant there was some young girl - I'd say about 13/14 with her mum. Carrying around her portable oxygen but still with difficulty managing to smile/laugh and talk. At least the most of us have lived some years. Life IS what you make it. Look at the positivity of JR -aka Jedi Reject. Good luck and thanks for your refreshing post. Bruddery


I get what you are saying, yes, there are people far worse off than us. However, I cannot find anything positive to say about living with an MPN!

My life at 37 years old, has changed completely, actually it started to change before my diagnosis 3 years ago! Our family life has changed, sometimes for my kids it's like living with their grandmother, not their mother! I can honestly say I cannot remember the last time I woke up feeling well. Yes, I get on with it, I don't moan to my family and hubby that I feel crap most of the time. I don't moan to my friends when I am too knackered to go out with them. I don't moan to my dogs when I feel too worn out to walk them. I just get on with life, so therefore coming on here sometimes is a bit of an outlet for trying to just get on with it.

I do think that the age at which you are diagnosed makes a huge difference. If I had found out at 60 I know it would have accepted it much easier and it would have had far less impact on my life than it does.


I was diagnosed at 53 and ANY age is not a good age to be diagnosed with any illness.

My late father used to say that you have to take what life throws at you and just get on with it as best you can. He spent 3 years in a P.O.W. camp during the war when he was a young man and his outlook on life has seen him through many difficulties. He lived until he was 92 and was an inspiration to his whole family. I try to do the same with the occasional wobble along the way.

Hope your BMB this time was a better experience for you.



Great comments showing what a diverse bunch we all are. I was diagnosed with MF 7 years ago when there was very little info/meds. I got to know several people on my hosp visits with the same illness who very sadly didn't make it. My mind at the time was very negative I wanted to see my gr d'ter at her first day at school and so on. My brothers weren't a match for bone marrow so I went through a period of negativity. Then Ruxolitnib came along and I was still around!!!!!!!! For me the best way to enjoy life is not to push too hard spring cleaning the whole house in one day is out!! Do what you can, take time out if needed and don't set difficult challenges. When you feel really low you can't always think of people worse of than you but I totally agree it's so important to get as much as possible out of life. Took hubby away for his birthday for a couple of days saw lots of homeless people on the streets, people collecting for soup kitchens and yes it sure does make you realize so many people have so many challenges. We could all take a lot of positivity from people like Chris spring is coming and hopefully a nice hot summer!!!! How's that for being positive!!!!!


Well said, what an amazing comment/rant👍


I read lots of positive posts on this forum. When newly diagnosed I found it extremely reassuring that there were others with the same problems. I think there are equal amounts of positive and negative posts. If you have a problem it's great to be able to share it, and get some reassurance that you are not alone and the problem isn't as great as it seemed in the dark of the night.

I was terrified of HU before I started taking it, but felt so much better after reading others had been on it for years.

Yes lots of us have other illnesses, but we all know there are so many people worse off than ourselves and are thankful for that.

We all need to unload sometimes and being able to do it via this site instead of worrying our nearest and dearest is wonderful.

Three cheers for all the contributors to this site! Hurrah, hurrah, hurrah!! 😀👍😉

Love to everybody!



I just would like to say that every day is not a good day and nobody should feel bad about saying that. I personally do about 1/4 of what I used to do. I just can't.

I do not post on here often but I thought when I joined this forum I would get ideas, thoughts and a good consepiton

of what was ahead. I don't want to hear about if I drink more water and green tea I will be better. I have done that my whole life ....then why would I get this? I want other positive ideas or options on different things to try. Like the person who posted about pomegranate. I am currently trying that.

I really know that there are people worse than me. Life is short and we better start thinking about how we want to make it as best as we can.

Most of us, in our own way are a bit frightened. But no one should be put down for venting. I would think that this is like a safety net with the people we know will understand. I am hoping I will continue to get more ideas on this site and not be afraid to say how I really feel.

Blessings to all, Janet


Inclined to agree with you on this one, Louise.

Missed your comments on this forum - don't always agree with you but a lot of what you say makes sense and has helped me over the years. Glad to see you making a contribution again.

Am having a good week, feeling well.



I agree with you - it is not easy having an MPN and, being newly diagnosed, I am finding it difficult to come to terms with. But there are people worse off than I am - and following your post I will try harder in future to be thankful for what I do have and to make being positive a challenge. Take care, Sue x


Whilst I hear what you are saying Louise, have you thought that this column might be the only place some folk can express their innermost fears and concerns.

Perhaps it might have been better were you to send positive notes more often rather than being scared off by moans. Personally I find great comfort from this forum, not nearly as alone as I did feel before I found it. I don't always feel the need to contribute but this morning I do!


PS Best wishes to everyone and I am pleased to say that MF and I are learning to live together with more ups than downs.


Sorry. Put My oar in in the wrong place! :-

Have you missed all the positivity poured into this site by members all the time. Twinkly comes to mind first as a prime example. I guess human nature is such that two people can read the same thing and one sees positive and one negative. Maybe it depends on the frame of mind we are actually in ourselves when we read it? I always TRY to be positive but maybe I'm known for moaning too -I don't know. I agree that people should not be scared to share their doubts and worries here for fear of being negative. We have such a rare condition that we are unlikely to have a neighbour or close friend to share our worries with. Questions asked here are often taken up by Maz and she asks Prof Claire Harrison for an answer that she relays on here. That is for the good of us all surely

I know when I am not feeling so great I tend to avoid all forums until I feel better able to cope with others' problems as well as my own. We don't have to read what is written here but someone may have had the courage to ask a question that as an individual we were scared to ask. If newbies are scared off, perhaps it might be that they are not ready to face the realities of what they in turn might face but I think we should be wary of complaining about people expressing what they need to on this forum. That is surely the point of a forum - a place where we can rant, ask for help, be positive or negative and know we can do it safely and without criticism

Just my thoughts!


I feel like I've lost something very important now. I am new to this site but when I was steered here from the MacMillan Cancer site I felt such a eureka moment because I finally found people who could empathise with how I was feeling, emotionally and physically. I am a carer for my 92 year old mum so I can't talk to her about my fears or symptoms and I know my wonderful hubby is scared to death that I am going through this now after losing both breasts to cancer so I try not to add to his worries. When I found this site I felt such a sense of relief that I had found people to talk to. I am very sorry I can't come on to these pages skipping, jumping and singing happy songs. I am exhausted, in pain and scared. After reading your post lou I feel like a scolded child and that my only lifeline has been snatched away because now I feel I shouldn't post on here for fear of upsetting anyone. I am a newbie and not once did I find the posts depressing or frightening. What I DID discover was that in the PV world I am "normal" and that came as a great relief. I have been a carer for my parents for 33 years and I just needed someone to care about me for once. I apologise if any of my posts have scared or upset anyone. I can't agree with what you have posted I just know that you have made me wary of posting anything again.


Ohhhh jilly jilly. I'm so sorry you're so upset, that was the last thing I intended. You are on exactly the right site and PLEASE don't let my rant put you off, you're exactly the sort of person who needs a bolster from everyone. ( Please remember though, that equally there are folk in your position who want to hear the upside all the time, not just how awful things are. ) read on because I'm not going to criticise you I promise.

You don't say which MPN you have or how long ago your diagnosis was.

You know, we've all been there.

I too am a carer for my 94 year old mother who's going potty and lives with us. It's jolly hard going isn't it when you don't feel so good? I make all my mother's meals and juggle the incontinence pads but we manage to have a laugh somehow.

When I was diagnosed 6 years ago, I'd never heard of MPNvoice, Healthunlocked or patient power. (Have a look at patient power it's a terribly upbeat site, not a chat forum, but lots of interviews with wonderful haematologists .......)

I didn't know anyone else who had an MPN, had never heard of polycythemia rubra vera ( what a mouthful) and used to tramp up the fell behind the house with my little dog and have a good cry!

I used to wake up in the night and lift my arms above my head to check I hadn't had a stroke. My husband woke one night to find me chanting baa baa black sheep, again to check I hadn't had a stroke. He thought I'd finally lost the plot.

I itched horribly, I had knee and back ache, vile,headaches, a face like a ripe tomato, felt like a wet rag.

My haematologist was useless, didn't want to know my worries only interested in my results. Told him what he could do with his unsympathetic attitude and decamped to the Christie in Manchester

Then one particular torrid day, when I knew I was getting depressed ( crying a lot is a good sign of that horrible condition) I thought, you're on your own here girl.

Start to help yourself.

So I did.

I gave myself a jolly good talking to, looked for the good things in every day and told a couple of good girl friends about my predicament ( I too have a husband who I didn't want to worry at the time. Can I give you a little tip? Go to the next MPN forum and take your husband. It will enlighten him, and give you a boost. You need to be able to talk frankly and openly to the nearest person to you. Although my husband, Steve, still isn't au fait with the whole thing he's so supportive and upbeat, I'm really glad I hauled him onboard)

You know what?

You will feel better.

Where do you live?

This is my phone number again - 015394 45612 - please phone me, I'd love to chat and help if I can.

I PROMISE I 'll understand exactly how you feel and what you're going through, ( although I haven't had a double mastectomy, how ghastly for you and then this on top of everything else) and I PROMISE I won't tell you to simply buck up and get on with it. I'm really not the heartless old bag you think I am.

Carry on posting, carrying on having a moan, and everyone else will be there for you, including me.



My thoughts entirely. I am newly diagnosed and I hope I get to the stage I don't feel frightened of what's ahead. I am always reassuring family and friends that I feel ok i have been doing that most of my adult life after losing a son and suffering with depression.

When I feel ok I probably won't even look at most of the posts on here but I hope I will look at the ones who really need a response. I thought it was what this forum was for, to help people who are struggling.

I envy those who can look at life so positively but they should remember that not everyone can and they should be helping the ones who can't and not repeatedly tell them there are people worse than them. We know that!



Whoa folks!

As you say we're all entitled to our own opinions. Yes of COURSE I have thought about the lonely sad people who have no one else to talk to - perhaps we could think of a way of helping them apart from online natter, because a one to one chat with a real person is so much more helpful than reading public posts.

Equally, as I said, I'm bearing in mind the two newly diagnosed buddies who are in pieces having read only the moans and groans many more are out there I wonder? It's so important to try and stay positive, to see the good in every day, and to count our blessings. I certainly do.

I often have trouble logging on to this site because it seems to gobble up every new password I put in! Soooo frustrating.

Until this morning I was beginning to think I'd written the wrong thing, but I had a phone call ( my number's above and I'd love to speak to anyone who feels like calling - whatever your thoughts!) from a newly diagnosed lady who said thank you so much for writing what you did. She has had a torrid time, has no one to talk to, ghastly haematologist who keeps telling her to pull herself together, and hated seeing all the negative posts because it made her feel even worse.

Hopefully worried lady from the north we'll stay buddies!

Meanwhile, thank you for ALL YOUR POSTS, whatever they say, I'm a thick skinned old bat and can take and appreciate all comments!

Have a good day everyone, snow has thawed here in dark and dismal old Bowness, I'm about to put my bloochers on and hike up the fell with the dog. Don't feel a bit like doing it but I know that an hour's hike will do me far more good than sitting here and swigging tea, and I'll come back newly invigorated!



I would just like to say that this forum is here for all of us to use and to freely put down our happy good feelings and thoughts and also our not so happy feelings and thoughts, to say we are scared about things relating to our MPNs and how they are affecting us, and to also share the good things that make us feel better, like the birth of a grandchild or the wonders of pomegranate juice.

I would hope that no-one is put off asking a question or sharing a concern on this forum, to quote the old adage 'a problem shared is a problem halved', and we must all remember that when you ask a lot of people for an answer or an opinion you will get positive and negative responses because we are all different in the way that we deal with things, some people are able to cope better than others with life and all that it throws at us, but I hope that on this forum we will all continue to support each other, old and new members. So don't be afraid to ask a question or share a good or bad feeling/thought, and to give your responses, again good or bad (though if they are too bad I will delete them, don't want anyone getting advice that could be harmful).

So to everyone on here, I would like to say how amazing you all are, your support for each other is fantastic so keep doing it.

Maz x


Maybe we should start again Lou. I was diagnosed with PV early in 2015 after years of DVT's, exhaustion, stumbling like a drunkard and all the other things associated with this condition. I wish I knew where you got all your energy from! By the time I have been shopping and got home I am exhausted. I read this site like my daily newspaper because I have found out more on here than any of my health professionals. In one of my earlier posts I did state that I actually felt "lucky" considering what other people have or are going through but somedays I want to cry out of pure frustration. This is when I read everybody's posts and realise it's okay to cry, because I realise I am not alone in this. I think Maz has been sent from heaven for all that she's done for everyone on here. Including finding my nearest MPN specialist. If you could just realise that people are frightened, confused and just need a good cry or moan sometimes.


Hi Jilly,

Good idea.

You know it's really early days for you yet, and everyone handles their MPN differently, some people feel fine, take the tablets and get on with it, so we never hear from them, some are absolutely terrified, feeling grotty tired sweaty etc worried about having a stroke, thrombosis, managing life, falling off their perch ( I too was one of those for at least 18 months until my haematocrit was lowered) and they are the ones who need support. I do realise that. However, having buddied about 7 people, I also know that these patients need to hear the good things too.

No one can be a buddy until they've had their problem for at least two years - for a reason I think.

It does take you quite a long time to get your head round all this.

I do know that people out there are very frightened and confused, as I said I was one of them, which is why it's so important to go to forums, ask questions, read as much as you can, and talk. We all have to be our own project managers if you like.

The forums are brilliant. So upbeat and uplifting, honestly.

Maz is an absolute star, she works so hard for us all, as do all the all the MPN voicers.....

I probably logged on at the wrong time after a long sabbatical, and simply read the not uplifting stuff.

If you can possibly try and look on the brighter side eventually you'll help yourself massively.

That's how I eventually got round the fatigue and everything else.

I don't have massive amounts of energy, I'm 61, and I pace myself. I've completely changed my lifestyle.

Closed down the two businesses that I ran, stopped dashing about, I don't do stuff that isn't important, in fact I've turned into a bit of a sloth.

I concentrate on me, looking after my mother and husband, and potter.

Turned into a bit of a recluse in fact.

I'm so lucky in the fact that I have retired, which is why I count my blessings every day.



You sound an amazing lady. I am looking forward to some warmer weather as hubby and I both got new cameras for Xmas and so far we have just taken hundreds of pics of the dogs! I really suffer in the cold no matter how much I wrap up so looking forward to a packing the dogs into the car and going off for a couple of hours. We also treated ourselves to some metal detectors last year and todate I have found a whole 10p lol. My dogs are my furry children and we love them to bits. They help take my mind of my PV with their funny ways. I do miss the long walks with them that's for sure but I need a rollator to help me control my balance now which makes it hard when on walks. Last week I fell straight into a hedgerow, I am sure everyone must have thought I had had one to many. Anyway, see my new GP tomorrow about referring me to MPN specialist at the Freeman in Newcastle so here's hoping I can find out more than what I have been told already.


Oh, Maz, thank you so much for your very kind post. This can be a fearsome disease (I spent Christmas day in the John Radcliffe Hospital with it), and sometimes - such as my Christmas - it has to be OK to feel a bit down, and to ask questions. I am so glad all of you are here, and are a help to me and to others with MPNs.


So sorry to hear about your Christmas Day and that you can share it with us. Thinking about you, kindest regards Aime xx😺


Hello Monnywese, sorry to hear that you were unwell over Christmas and spent it in hospital, I do hope that you are now feeling a lot better. Maz x


Oh Monnywese, what a shame you were in hospital over Christmas. Hopefully, the bulbs just coming through and the birds early morning singing will lift your spirits if only a little bit. We do have some miserable moments with this wretched condition but remember you are definitely not alone so ask your questions and yes, it's really OK to be down from time to time - we all are. However, the sun does come out and it's amazing how good it feels when this happens don't you agree.

Much love and hugs to you and may 2016 be bright and full of hope.

Linds x


Hey you "Debbie Downers" I am new to this site and not at all put off by the "miserable post's ". Reassuring to see others are experiencing same feelings as I am. Nice to have a place to express ones self. Educational and thought provoking. Just newly diagnosed it has made me more appreciative of the health I have, empathetic to those not as fortunate and optomistic from the longevity of others.


Wow, what real feisty, heart felt, authentic replies to Lou's original post....and Maz's reply, I feel, pretty much sums up what this forum is all about. For me, it's here to use as each individual needs & that's going to be different for everyone. I go into 'rebellious child' mode when I'm told what I should be doing, feeling,eating, posting etc because that's someone else's 'rules' and experience, not mine. Personally, I feel great respect and admiration for ALL posters here because balance is essential-days can be good and not so good and on my not so good days, I'm not going to invalidate how I'm actually feeling by saying or hearing there's others worse off than me, be positive etc etc. I'm feeling what I'm feeling in any given moment...and that's ok. And if posting about it has a cathartic effect then, whaddaya know, I'm right on to the site! To have a wide spectrum of posts echoes the wide MPN spectrum-it's pretty big and yes, there are generic symptoms but there are also unique, personal fantastic was the post from the lady who asked about libido problems? To air a very personal issue (which we were all possibly experiencing!) takes enormous bravery and I, for one, applaud this particular member's honesty & congruency. So sorry, Lou, I prefer to be real, whatever I'm feeling and I think it takes real people to be receptive to that, not feeling like you have to paint a smile on when you're feeling like c..p. Because it won't quite reach the eyes. Much love, Poll X


Thanks for your comment Polly, I couldn't agree more.


Hi Lou, going to be really honest here and say that your post has disturbed me quite a bit. Before I found this site I had visited so many with conflicting information and I felt lost. This isn't my first cancer, my first was breast cancer in 2009. When I was diagnosed with that I felt like my world had caved in but I had to play "Mrs Cheerful" because my mum wouldn't talk to me about it and I wouldn't talk to my husband because he couldn't handle it, so I had no one. When I found out I had PV and finally found this site I really felt I could talk about anything, happy or sad. My friends on here were the first people I told that I had finished my degree in Canine Science and Biology and had achieve a "Distinction".

People must be allowed to say how they feel, be it happy or devastated. People can not be expected to hide away with their worries for fear of upsetting others, what a sad world this would be.

We all know of the suffering of those much less fortunate, those who are starving, those who have no home, those who have a terminal illness and we all have, or at least I hope we have, compassion for all of these people but people on here are also going through their own personal crisis as well and I for one will never complain if they choose to tell us on this site. In fact we should feel privileged that they have chosen to confide their fears to us.

I don't need to "buck up", I need to keep myself available to listen to the problems of those who have joined this community and, when I am able, offer any advice that I can.

I have been on too many forums where people have been shut down by others and I am not going to be one of those people. God bless everyone and I hope you all have a happy and healthy new year but, if you do have any problems, I hope you have the faith to keep coming back to the lovely people on this site.

Now I will sit and wait for the comeback.

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Hi Jilly Brat,

caramba baramba! I posted that a whole year ago, and so am delighted and nay, amazed that it's still being read! Just had to reread to remind myself what I'd ranted on about.

No comeback at all, simply other than to say I'm really not the raddled old harridan that perhaps you would think I am, and gosh of course we're all entitled to post on this site exactly what and how we feel - which is why I said what I did!

As far as I can remember when I posted the above ( and as I say amazed to have so many replies) I had just spoken to one of the ladies that I buddy who had been worried sick about all the somewhat downhearted and miserable entries that she had read - sparking her to have an hour's conversation with me.

This poor lady had only just been diagnosed and was worried sick that her life was about to become blighted with horrific fatigue, bone pain, and the general malaise that so many people seem to experience, and an ability to live her life as she had previously. I suspect there are many many people out there who have the sheer good fortune - like I - who are well, and on the whole feel great. Yes I do very occasionally have some " off " days, but I just choose not to share them. We all cope in our different ways I guess.

So, end of 2015, as I said, I wondered how many other frightened, newly diagnosed MPN patients there might be out there, who only read how poorly everyone is, and so you have my sincere apologies Jilly Brat if my post upset you, but I must assure you that it went a long way to help this particular lady.

My heart goes out to those of you aren't so well, and you have my sincere sympathy.

However, if you ARE new to this site, take heart, all is not lost when you're diagnosed with an MPN, and things most certainly may not be as black as they might appear. There's lots of help out there if you find the right specialist.

Wishing everyone a good, happy and peaceful Christmas, and a much better New Year and 2017 if you do happen to be feeling rotten.

Remember, exercise, decent nutrition and a positive upbeat outlook helps enormously..




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Hi Lou, I must have been in la la land as I didn't see the date of the original post and that I had responded when it was first posted, just saw that it was on the daily forum. Will definitely check dates of any further posts I reply to.


Loubprv, well done!

I agree completely with you and thanks for having the courage to put it into words

No amount of complaining or feeling that it's 'not fair' will make any difference. Nothing is going to cure any of us!

So I agree with Loubprv pull your socks and enjoy what you have got!!



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