Hi there I’m new to this…I was diagnosed blood cancer 14yrs ago and have told no one up until recently…it’s been a struggle…was in denial for a long time but I have been so tired recently I decided to tell my family…I have essential thrombocythemia …hoping to find others with this on here and look for some support…thankyou x
Hi Emma, great to see you using this site. I have just replied to your other post, but please keep posting and take care of yourself.
Thankyou Erica…I’m abit lost on this to be honest…not sure where I’m supposed to be posting my comments…still finding my way around x
Hi Emma, so do I sometimes, but don’t worry it isn’t a problem, the main thing is that you do post so we can all support each other.
Emma, someone will find you, wherever you post! I have posted a comment on your other thread
Hi Emmaco:blush: I too have ET & I’m Jak2+ . As well as finding info on here I find that MPN Voice ,a specialist support & information group specifically for those of us with MPNs, is excellent too. They hold conferences nation wide throughout the year . If you would like a support buddy then Maz the coordinator would sort it for you . The whole organisation is overseen by Prof Claire Harrison from Guy’s & St Thomas’s . Patient Power, a USA based organisation is also excellent on MPNs & isn’t allied to any drugs companies or other interest groups . Hope these ideas help . Annie
Hi there Annie
Thankyou for your comments…I too have jak+2 but not 100% sure. I know it was mentioned before when I was first diagnosed but I’ve forgotten as my memory isn’t great since this all came about. I am enjoying hearing people’s views and support on bloodwise…it’s comforting to know others understand…how long have you had ET? And what are your worst symptoms of having it?
Hi there Emma !!! I was diagnosed four years ago but blood tests show that I had ET for eight years prior to that without it being appropriately diagnosed … I’m on hydroxycarbamide & dispersible aspirin & the doses have varied over the years . My worst symptoms in the past were erythromelalgia, silent migraines with loss of vision & TIAs . Currently just tiredness, & brain fog & bleeding gums . I feel very very grateful for the amazing care that I have at The Christie - it’s been a game changer .
Thankyou for your reply…I have had ET for 14yrs now…I’m 44yrs old…Im also on hydroxycarbomide and warfarin after having a blood clot on the brain in 2005…currently my worst symptom is tiredness…I have recently had to change my work shift pattern due to this…but I do find the winter months are worse for my tiredness…I get bleeding gums and light headaches now and again…but I receive good care from my heamatologist and GP.
Thank you so much for sharing your experience witth ET. I am so sorry to hear and I honestly cannot imagine how difficult it has been for you, especially having a blood clot on your brain.
You mentioned a little bit about changing your shift pattern because of tiredness. How do you feel about your work schedule changing and how does your employer feel about it?
Yes my tiredness is the worst thing really…I get occasional headaches. My work and manager have been very supportive and have altered my shifts two that instead of doing 13hrs they have split some of them and made sure I have some days off inbetween. I cannot unfortunatly afford to cut my hours down but I’m ok with that as it’s my job that keeps me going. Thank you for getting back to me…I’m hoping to get some more info from Macmillan.
Hi Emma, I am so glad your work and manager have been supportive and that some of your shifts have been split. I find that manageable shifts so I can rest in between are so much better that the really overdoing it and then it takes me longer to recover as my fatigue really gets a hold on me and it takes so much longer to start to recharge my batteries emotionally and physically. I know you were diagnosed 14 yrs ago and as you say your were in denial for a long time. Can you tell us what you have learnt about yourself emotionally and physically in that time?
Hi @Emmaco, welcome to the forum. It must have been a big step to decide to tell your family about your diagnosis. I hope it has been a positive step for you? I don’ t have personal experience of ET (although I am learning a lot from this thread!), but I hope you are finding support from others on here. x
Thankyou for your message…yes it was a big step…it was the right time for me…I think a couple of famiky members are in denial but I’m giving them space and time…not discussing it much at mo with family…I’m waiting for some counselling I’ve been revered to.
Hi Emma, perhaps everyone come to terms in their own time. It sounds as if you are doing all the sensitive and sensible things regarding family and counselling, please let us know how both progress and take care.
Yes I will let you know how it goes…I’m sure I will be fine…I am an emotional person anyway with things in life but just want this huge weight off my shoulders…I don’t want to feel ashamed with ET…I don’t want people to feel sorry for me…I just want support from friends and family with every day to day things…like I said before the fatigue is the main problem…I know I need to lose some weight…need to find my motivation as I’m sure if I lost a little bit it may help my fatigue…easier said than done though…x
Hi Emma, I know its been a little while since you were posting in this thread, I just wondered how you were and whether you had told your family and how things had been since then? I hope you’re well. Dawn
I’m poorly at mo…just got home from the Drs…had to leave work early…I’ve got a boil in my left ear…I’ve had earache for few days…having an early night tonight and resting before I’m back at work tomoz. Apart from that I’m ok…just the normal fatigue I get…Thank you for your concern…hope to chat again soon x
Dear Emma, sorry to hear you have been feeling poorly. I always get boils etc when I’m fatigued, it’s probably our weakened immune systems, something we all have in common. I hope your issues can be resolved by your gp and you feel better soon.
Sorry to hear that your immune system is causing problems. I hope the boil clears up soon. Take care x