You look really well !

[chalet1]

I developed PV 6 months ago i am JAK 2 positive and take Hydroxycarbamide and Warfarin daily with various side effects, people say you look really well, its that thing when you have a broken leg , it can be seen you have a broken leg, with PV its invisible to everyone, you know you have it because of the fatigue and itchy skin and uncomfortable gums , my children are under the impression i will get better and all my symptoms will get better, a difficult situation when were out somewhere and i have to sit down for a rest. Does this make sense to anyone else.

[Cdseiter]

Only 100%!! Yes it is hard when you don't look sick. But then again, I think it is better for my 4 kids that they can't see it all the time. Hang in there...you will find great support in this board. We get it....I hope tomorrow that you feel as well as you look

[Nickyb57]

Hi, it's early days, I was diagnosed 6 years ago when I ended up in hospital with a portal vein thrombosis and had to have a splenectomy. I was exhausted for at least 6 months after that and was off work for a year. I'm back at work now and have been for 5 years. It does get better, stay positive and listen to your body, if your tired, rest, don't over do things. Nicky

[Helpatlast]

Yes it makes complete sense and all here will emphasise with you - MPNs are unseen and unfortunately also unheard of - so often people won't quite understand what you are going through and the "thing" of " but you look so well" is something we all suffer from I am afraid even at times family and friends - as you say the fatigue is felt by you and we all understand so you just take a seat when you need it - and know that all those bits and pieces we deal with as a result of our MPN will be understood on here - I find I try and be honest now and tell people some of the bits I am dealing with at any time ( although it still tends to be greeted with but you look so well!!) and also I send links to be bits on this site to friends if they have looked like they don't quite get it - somehow the written word on here seems to get the points across! Anyway hug to you and keep going we are all in it together.

[Janet123]

I understand so much I can not even put it I to words. My really good friend told me that I am making to much out of this. I was just shocked. She has a thyroid condition and told me "that" is so much worse than what I have. The people around me are letting me down. I have to rest a lot and put my feet up and always have some strange issues going on.

But I try every single day to be as normal as I can. Despite the fact that I feel no one really cares. We all know this is so real and it doesn't go away. But we want someone to say they understand . Hopefully they will find something in the near future to make us all better. I feel for you and hope you will have better days.

I have ET and jak2 positive, still on aspirin for now . I found out I had this in January. Doctor said I have had it for about 4 years???

I wish you well and I guess we should be thankful we still look good, after all think about the alternative.

Blessings, Janet

[Borage in reply to Janet123]

My mother in law plays that game. No one is sicker than her. No one understands what she suffers. Though not for want of telling!

Her latest offering was that I won't miss my mother because I didn't see her as often as I visit herself.

Avoid such poisonous people, they do you no good.

[beetle]

Twinkly brought up this subject last week. I am personally glad that I don't look sick. My GP told me yesterday how well I look. I don't know if he was thinking how well I look 'considering'..! I would rather my family see me as looking ok too. I know there is worse to come in the pipeline so why would anyone want to look sick if they don't have to. The nurses on the day-bed unit can often tell just by looking at me when I need a transfusion so there must be some tell-tell signs there somewhere! if it's just sympathy we need we just have to come here - we all understand and give support. Much more private too!

[catkinspolymer]

Hi chalet 1 ,

I tease the ones I don't like a bit with comments like "yes these new cancer drugs are marvelous even when your dying" or its all deception in fact I feel like SH one T.

however dint forget that people dont like to be reminded that they too are mortal.

Buy some whelks de-shell and stick them on your face you can often get a seat on a train with that ruse .

all the best Town Crier

[Loubprv Volunteer]

Well good morning! A long missive, bear with me.

Absolutely I understand. I've had PV for 6 years and take Hydroxicarbamide and aspirin.

Am well used to hearing people say, " how are you? You look really well" which I guess is a whole lot better than saying " Gawd, you look like death"

HOWEVER I completely understand how you feel, it's quite maddening, when all we want is a bit of sympathy and understanding of our predicament!

This is a copy ( more or less ) of an email I sent to the important people in my life, friends mainly, family I gathered together and spoke to directly.

Hi everyone,

You may have noticed I've been feeling under the weather lately, which is somewhat of an understatement!

Last week after two months of tests, I was diagnosed with a rare and serious blood cancer called Polycythemia Rubra Vera. This is one of three blood cancers which nestle under the umbrella of myeloproliferative neoplasms - I know, what a mouthful.

Surprising what you can learn when you have it....

Anyway, it's complicated, and all you need to know is that it's all to do with something called the JAK2 gene, bone marrow, and everything being a bit out of flunter so to speak. If you would like to learn more, and I would be utterly delighted if you would because it would be nice for my close friends ( of which you are one) to understand exactly how I feel and how jolly puzzling all this is.

If you have a spare hour perhaps you could look at mpdvoice.org.uk .

This cancer is treatable and is certainly not going to kill me off imminently, but it isn't curable - yet - I'm afraid. It affects around one in 100,000 people so yes, I would far rather have won the lottery but hey! that's life, and it could have been worse.

What you need to know is that I won't look any different, although I will most certainly be feeling a lot different.

A diagnosis of cancer is a frightening and bewildering thing, particularly when it's an "orphan" condition ie rare, such as this.

For the rest of my life, not only I will have to contend with a variety of drugs and their side effects, I also will have symptoms of the condition - severe fatigue, aquagenic prutitis ( contact with water or cold air causes a debillitating and unpleasant burning, prickling itch under my skin) loss of memory, inability to concentrate, general malaise to name but a few. Possibly a bit like having lifetime flu.

So, quite a lot to take in particularly knowing that I'm stuck with this for the conceivable future, and there is no " remission".

I am as you know, not a moaner, and tend to soldier on regardless, but it would mean a massive amount to me if I could have the occasional hug and a shoulder to whinge on.

Meanwhile, are we still going out for lunch next week because I could do with a glass of wine and a bloody good laugh!

Loads of love,

Little old me.

xx

I probably laid the ' poor me ' on a bit.

One or two friends have never mentioned it and avoid me ( they're in a minority, just a couple) most close -about 8 - are truly fantastic, understanding and it means the world.

My family, husband, two daughters and a son in law, know all the info, and are wonderfully supportive too.

I suggest you sit yours down too and tell them exactly what's going on. Better still take them to the London forum at St Thomas's and Guys in July and let them learn first hand.

Hope that helps.

love

Louise

xx

[chelsea1 in reply to Loubprv]

Hi there,

Had to respond as I think that this is such a great reply! I too often get told how 'well' I look so I'm use to it. Your letter is such a great response and a great way to break the news to friends and family. I've actually copied it for future use so I hope you don't mind! Many thanks for this idea - its great!

Kind regards

Babs

[Hidden in reply to Loubprv]

That's brilliant - I must admit I now don't get upset when people say I look well as I want to look well... I represent and run a health and wellness business so I want to look healthy, even if I don't feel it always. I love as a woman that even if I look tired once I put on my make up I can look healthy and well again! I definitely think that's a bonus to being a woman (although guys can wear make up too).

I like you Louise have pointed people to the MPN Voice site especially previous partners so they can understand. I also tend to play down my blood condition to many but I have my moments and mini meltdowns.

Just to put things into perspective I was also diagnosed only last year with Bladder Cancer (totally unrelated obviously).. My joke was God loves me so much he gave me two I think that was the more shocking (or maybe I just can't remember how I felt 6 years ago when diagnosed with PV).. but it was other people's reactions to the C word that I was more concerned with, I had a positive mindset, decided there and then it would be superficial and treatable without chemo and I carried on with life and yoga.. yoga definitely helps mind, body and soul. I think my sister and parents do all the worrying for me!

Then to top it all off I had a miscarriage in January this year.. Now that felt like I had been given a gift and then it was taken away as the baby survived the removal of my bladder tumours (I didn't have chemo) and I didn't even think I could have children.. but everything is a lesson and I am grateful for the health I do have and I made a decision just after my 41st Birthday at the end of March, that enough was enough.. I was going to focus on my fitness, not use my fatigue as an excuse or blame my blood or bladder or anything else, and I was going to get back to my previous fitness in fact better than before..

I am sharing this story just to say that I can't change the cirumstances but I have a choice of how I deal with them, and although we are all unique and different, I can tell you two things, good nutrition (and supplements) and fitness is key to good health for everyone and that mindset is the other, the mind is a very powerful tool, so we must be careful how we use it.. we are what we think as Buddha would say!

Namaste

Louise xx

[Hidden in reply to Loubprv]

Hi thought that was very well said , can you or anyone tell me what the difference is between being ET and jak 2 positive to PV and jak2 postive please x

[Hidden in reply to Hidden]

Well ET is normally just raised platelets but PV is red blood cells and can be raised platelets too and also white blood cells.. check out the definition on MPN Voice

[Hidden]

I had a brilliant eye consultant who treated my TED (thyroid eye disease). He always started every consultation with, 'My, you are looking well!' Guess what, I always felt geed up and better for hearing that!

[fannetastic]

That is brilliant Loubprv. It certainly would inform people without going through the whole scenario of "well it's like this". With your permission I would like to copy this. I have a lot of head in thee sand people surrounding me and it can get frustrating at times. Keep as strong as you can be.

[ABman]

Sometimes you have to tell people you have a very rare cancer, and it has many strange symptoms, one of which is fatigue.

[ABman in reply to ABman]

I should add that I've had PRV for a full decade, as of this month, and I've had to explain my situation quite a few times; however, people have been consistently supportive, even if they say, "You're sure looking well!"

[Loubprv Volunteer]

Hi everybody,

What really great posts from you all, and how positive! Fantastic!

We're a hardy upbeat lot aren't we? Please feel free to copy my letter, or adjust if you prefer - it certainly worked for me...

And good luck surrey girl whoever you may be, you sound like one of life's survivors, but what a rotten time you've had. All the very very best.

Louise

xx

[nicki2]

I have et on the same tablets and I get the same reaction even when I feel awful also there use to be a poster in my doctor's surgery and it was a man with his leg in plaster with people all a round him but they said people with mental illness the same thing

[Kari1961]

I get this all of the time. But, I actually like it that way. Thankfully I have very understanding close friends and family, so they know I may look well, but I'm not 100% on a lot of days. They know that if I say yes to meeting up for some fun times one day I may well cry off a day later as I feel like poop and just want to rest up.

I'm also 'lucky' in the respect that I run my own business, so I have extra flexibility in my daily life ~ it was actually due to a Stroke in 2012 that I began running my business. "Every cloud has a silver lining" and all that.

I like that new people I meet haven't a clue that I have PRV, and I rarely tell anyone new in my life, unless they question the bruises on my hands and arms I get after blood tests and venesections (but that's mostly because I don't want them thinking I'm injecting illegal drugs)

Definitely distance yourself from negative people (if they don't understand your illness, then they have no reason to be in your life too understand it), rest-up when your body tells you it needs rest and enjoy the days when you're feeling that little bit better.