I am writing this after 12 weeks of continual blood tests, with each one coming back platelets high, I have been terrified, finally got to see haematologist about a month ago, further blood tests, and an ultrasound, went to see him this week and he said I have P.V.I was and am still in shock, I feel very anxious, scared,and am currently worrying constantly. I am so glad I have found this group. As I wake up each morning and the anxiety is there, and is difficult to shift it during the day. My G.P did start me on an anti depressant and after 1 pill it was so awful I will never take anything like that again. I love to be busy and am trying though my mind wanders off. I do still work though find concentrating difficult, as mind wanders. I have told 1 of my children, but find it so difficult even approaching the subject.Reading the other positive posts are uplifting, so thank you to those who share. I look forward to hearing from and about all of you other wonderful people in this group. Wishing you all the very best of health.x
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Welcome to our forum, here, you will get lots of information and support if you need it so try not to worry.
I was diagnosed with PV 13 years ago at the age of 51, I continued to work until 2 years ago when I decided I had had enough. There are many people on the forum who have had PV for 30 years and more. I existed on venesection and aspirin until 5 years ago when I started Hydroxicarbamide, with no problems, maybe I’m lucky that I tolerate most drugs ok.
I have 3 daughters and seven grandchildren so keep pretty busy. I told all my daughters when I was diagnosed. One, the youngest came with me to a living with MPN’s day in London 5 years ago and is very interested and always wants to know how I am doing, one, asks occasionally, I guess when she remembers that I actually do have something wrong with me, and the other never asks at all. They all have busy lives, working, children etc. So I just accept that and know if I really did need help they would be there for me. I think, as so many of us say, we don’t look ill, so to say you have a serious blood condition is hard to believe.
If you haven’t already, look on mpnvoice.org.uk you will find loads of up to date and relevant, trustworthy information. Maz, the editor of this site can also put you in touch with a buddy to talk to or e mail. I have a lovely buddy in the Lake District, Louise, who I have yet to meet but when I first started Hydroxicarbamide I was really scared and she helped me greatly.
Keep checking in and don’t take notice of all the scare stories, we are all different and react to this disease differently.
I’m sure once you get you head around the diagnosis you will start to feel better.
Hi Judy,Thank you so much for your lovely message.If only I could tell my mind to switch itself off, and for the anxious thoughts to stop creeping in I know I would be ok.I know being busy does help immensely, you sound like you have 3 lovely daughters. My children live in Canada, so support I feel I need and want at the minute is thin on the ground. I am glad to hear you are doing well. I will contact Maz, try to stop over thinking, and look forward to posting ,and corresponding on the group. Take Care.xx
Welcome to the forum, I know only to well what it is like having all those blood tests and no answers until they did the JAK2 mutant test which proved that I had ET and was JAK2 positive, that was over five years ago now, take Hydroxycarbamide, Enteric Coated Aspirin and numerous other tablets and must admit that apart from the occasional blip health wise life for me is good. I make sure that I eat well and drink at least 2Ltrs of water a day, and keep fit which is a must, I am 69 this year and enjoy life to the full, mind you my grandchildren keep me on my toes.
I know this is a worrying time for you, being diagnosed with PV but as time goes on you will find that the worry fades and you get on with your life, plus you have found us, they are a great bunch of people who always are ready to listen and give some sound advise when needed.
You can get in touch with Maz who can arrange a buddy for you to talk with this helps immensely in the first months of being diagnosed they can give you so much support.
And finally always talk about your worries with your family and friends never bottle things up, it’s good to talk well that’s my thinking anyway, makes me feel better, gets things off my chest so to speak 😉 even if they are looking at me totally blank, I just say, “it’s not going to get any time soon” I’ve got a lot of living still to do.
Thank you for your welcome and uplifting post, I aim to talk to my daughter this weekend, my son was just so full of questions, and I was so panicky and anxious I couldn't talk to him for too long about it. You are right I have found the group and I am so grateful for that, and look forward to speaking with people and sharing. Thank you for responding and putting me at ease. Take Care xx
We are all here for each other, we are a very rare breed Indeed, and we are special well that’s what I think. Keep taking to us all it’s amazing how it makes you feel just to off load your feelings.
If it’s any help at all, the whirlwind of emotions and anxieties you describe along with the flashes of panic and underlying sense of general terror will be familiar to very many people on this Forum especially around the time of diagnosis. I think you’ll find that just about everyone here will undentify with that feeling of being overwhelmed and confused. Hang on in there. Those feelings will subside. To be honest when I was first diagnosed I thought I was a walking timebomb and going to drop dead at any moment. After a while I worked out that that did not appear to be the case. Gradually my brain cleared (sort of!) and I became less preoccupied with the diagnosis and all it implied. I think this is just a very normal process. There’s lots of good advice from previous posters. And talking to others who have an MPN is incredibly helpful. We ‘get it’. Be easy on yourself. Before too long this will no longer feel all consuming and you will embrace life much as you did before. Wishing you all the very best.
Hi Ebot. I am really touched by the responses I have had to my post, and so grateful others understand. It is so frightening to hear. I am fighting a couple of fires in my life at the minute so feel doubly hit. And you describe those feelings so well, again my thanks, for responding and I hope to speak with you and others in the group. My very best wishes to you too.x
Your reply was also reassuring to me, even though this wasn’t my post. I was diagnosed with ET over a year ago but feel 100% and just took low dose aspirin and had monthly blood tests. Then about 3 months ago I had a tiny TIA (the MRI said “brain activity consistent with”, anyway), and am now taking Clopidogrel 1X daily and am supposed to start 1X daily Hydroxyurea today. I am trying to be positive and upbeat, but find that I’m so worried and anxious just about all the time. It’s good to know that not only will I likely live a normal lifespan, but that I won’t always feel so terrified.
Hi Wileyfrench I too will be starting hydroxy soon and like you I'm anxious to say the least. However the majority of posts I've read from mpners on hydroxy are positive so I'm holding firmly on to that. I really hope things go well for you I'm sure they will I think we're just frightened of the unknown. Good luck you're in my thoughts. X
Hi Camelian - thank you so much for your note. I’ve now been on HU for two years with no noticeable side effects - other than platelets are in normal range. I did have another small TIA over a year ago so I take clopidogrel and low-dose aspirin daily too. I can say that the relentless anxiety and worry I felt two years ago has dissipated. I wish I didn’t have ET and that I hadn’t had the TIAs, but other than taking the pills (and having to get travel insurance at a higher rate, dammit!), my life is not altered. So that’s good and, as you say, that seems to be the case for most MPN-ers. So I’m going to hope that remains our case too, and I bet it will!
Hi, each Of us here on this site have been, seen and got the tee shirt.
You feel so vulnerable at the moment and that is very normal at this stage of your life changing diagnosis.
There is 24hour support on here thanks to the support team and all of your new mates.
Advise will always come from your team in charge of your planed care but emotional support is like a pick and mix on here.some of it will resound with you and you decode to go with it.my head was all over the place at the beginning.
12months on I am living, feeling optimistic and I go to my first clinical nurse this next time so it is one step forward.
We are here to support you in which ever way we can.
I found meditation, helped and just gentle exercise at first even if it was a short walk in the park with a borrowed dog.
Hi Roger,lovely to hear from you, and thank you, I feel much better knowing that I am not alone, and already folks on the forum have been brilliant in reassuring me. Im amazed at how the feeling, and emotions are all so similar, if only our minds would switch off. I did meditate previously though have found at least this week,I have not been able to quiet my mind enough to meditate, however in time I know it is a wonderful tool, and I won't give in. I do have dog if he will walk instead of pulling he's going to get a lot more walks. Take care , very best wishes.x
Hello and welcome to the forum. Your recent diagnosis has been a shock and taking it all in cannot happen instantly. We are holistic beings;-mind, body and spirit and of course parts of you can go into overdrive with processing so much strange information. Other friends on here have given sound advice. In time your perspective will balance out and your ongoing health condition will be just another part of life. Please take heart from the experiences on here where many friends are living full lives many years after diagnosis. Self-care is really important and shock affects us all differently. Maybe in time, you can find the relaxation that works for you. We can all relate to and understand how in those first few weeks your PV can be all-encompassing. My diagnosis was before Christmas 2015 and I can honestly say my head was functioning more like a cabbage over the festive period.
Please be gentle with yourself and if you feel like having a rant, venting emotions, asking for advice, needing a hug or just checking in on here, someone will always listen. xxx
Hi Fionnuaghla, and thank you for such a lovely and inspiring reply. I am very grateful that others and listening and are so knowledgeable and kind. I think women in general are not good at taking care of ourselves , we do put others first, so this will be a learning curve for me. I also have another issue going on and to have both at the same time has totally stressed me out. I do have amazing children and have spoken to my son, my daughter I am yet to tell, though will try to do that this weekend.I am still working though find that I can't concentrate. I really wish I could as it would take my mind off this overthinking. I will use the forum, and look forward to speaking with you and many others, and I really can't thank you enough for your lovely message, and I will move forward with love and hope. Take care
Hi Wyebird, and thank you. I am trying and it comes and goes in waves, one minute ok, the next anxious, and panicky, so one step at a time.It is the knowledge that others are there and supportive, son huge thank you.xx
I know it is a shock to the system:/ I was diagnosed with ET February of this year and it has taken many months to become comfortable in my own skin. This forum has been a blessing as you read of many people who have had MPN’s for over 20 years and are living well despite their diagnosis. Thankfully, Hydroxyurea and aspirin and eating well and exercise has brought my platelets down. I have had no side affects from the medication other than a tad tired. You will adjust as we all have I wish you well and please start an exercise routine it helps greatly with the anxiety.
Hi MBR,8076.Thank you for taking the time to reply, it is greatly appreciated. I am not yet a week since finding out so still in a spacey place about it all.I was in a gym and did yoga lates, yoga, zumba, until April when awful chest pain had me going to the G.P. they thought I had had a heart attack, after several hours in hospital and bloods, and ECG. I was told I hadn't though I was told I was dehydrated, this was because my platelets were high, my own G.P continued to do weekly blood tests and they remained high. And after seeing haematologist last week having had more bloods , and an ultrasound he said I had PV. Since then I haven't returned to the gym as thought maybe this had contributed, however I do enjoy going so will need to pick it up again very soon. I do do some exercises at home and don't like to sit around. I am grateful to everyone for the support after only a couple of days, and hope to be on the forum regularly. Look forward to speaking with you, and others.Thanks again. Take care, very best wishes.xx
Sorry to hear that you have been diagnosed with an MPN but welcome to the club. I don’t know where you live but have a look on the MPN Voice website and see if there is a patients forum day near you, they are great and well worth attending, a super chance to meet up and chat with people with the same diagnosis. Hope it goes well for you janet x
Hi eastwood,Thank you for your message. I am in the process of finding out some more information Re a patients forum, and in general about things. I so appreciate hearing from everyone. For now its got to be one day at a time. I Look forward to speaking with you and others on the group. Thank you again. Marilyn x
Don't be scared, it is not that bad and we can live a relative normal life to the point people think we are lying because we look and do so well the majority of the time. The drugs sound scary but again your health will improve, Download headspace, I find that very useful, it will help you with your anxiety and is better than anti-depressants. Headspace has a cancer program and it will help you to relax. Take care, eat well and drink loads of water, rest and stop worrying, we will survive😂
Good Morning Angelinagaffer, what a great message to find so early on a Monday morning, Thank you.I am beginning to look at recommencing my exercise classes, and will be on the forum, and share ,its wonderful to know there are many others who are there, and so supportive. I have started drinking lots of water, can do about 2L, though have tea regularly throughout the day, don't think this counts. In Good Health Marilyn x
My platelets began to rise in my mid 30s. Im now 44 and my platelets average 1500. Im on no medication other than Aspirin. Most of that time I was not concerned. However, when it became obvious that my spleen was growing in size I very nearly had a mental break down.
My GP made an appointment for me see a psychologist but I didnt go. I felt the power to overcome this needed to come from me. So I started to actively think about things that would help mentally . For example I would contemplate how people with much worse conditions cope and be happy. There were other very specific thoughts I would dwell on that related to my faith and my understanding of our purpose. (which I cant go into here as its not the place to discuss such things.)
Before I was diagnosed with ET I was diagnosed with generalised anxiety. I have learnt to overcome anxiety I need to constantly point my thoughts in a more positive direction. If I couldn't think of anything more positive I would look for them in the world around us.
Good Morning Blood Zero,Thank you for taking the time to respond, and to share. I totally understand what you are saying and its true. I think at times of stress or unexpected situations, we become overwhelmed, and the fight or flight kicks in, particularly if we have even more things going on in our lives. It is at times like this we struggle to see the wood for the trees, I think support and hope are two things we need to have , and to harvest, it is not a good place to be however I will go forward, we all have people we love and want to live and be healthy for, including ourselves, so thank you for reminding me , its all about our own strengths. Look forward to talking on the forum.In Good Health. Marilyn x.
Hi Ansaseeker and welcome to this amazing forum. I see you’ve had lots of lovely responses - I think pretty much all of us can relate to where you are right now and what you’re going through. I was in a terrible state following diagnosis. Most days it was all I could think of and I’d be constantly googling things and getting myself in a state. There’s a lot of outdated information out there I now realise.
I won’t say “don’t google” because it’s impossible not to, and also because there’s loads of good information out there too and it’s helpful to be armed with as much knowledge as possible. But eventually you will realise that all the stats relate to other people and your own journey with an MPN will be unique to you.
It probably feels like your life will be spent worrying from now on. I thought mine would. But believe it or not when you live with your PV for a few months you will start to get on with things. Don’t beat yourself up about feeling anxious - I did and it seems silly now, because of course you’re going to be anxious. Just be reassured that things do return to (almost) normal eventually. It took me 4-5 months to settle down. I’m at seven months now and think about it occasionally and have the odd off day. But mostly it’s something I put to the back of my mind and just get on with things. It will happen, just give yourself time to process it all. All the best x
Hi Timjonze have just come across your post, and have to say what great timing, Thank you so much for responding, its only day 11 since I found out and after a very anxious week, last week, I felt it start again today and reading your post has been super helpful. Thank goodness for this group and the supportive people who are out there. I can't thank them and you enough.I look forward to talking to you and others on the group. Very Best Wishes x
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I wish you well and please start an exercise routine it helps greatly with the anxiety.
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