Jo62 - my husband was diagnosed with ET & is struggling

My husband was diagnosed with Essential Thrombocythaemia (ET) in April this year. It was completely out of the blue. He was diagnosed with epilepsy last year and took a heart attack just before Christmas. We knew there was a problem but no one said anything and we just assumed he was low in iron or something simple like that. He was told while at a hospital appointment and on his own that he had this blood cancer.

Life since April has been so stressful. My heart breaks for him. For the man he was and the one he is forced to be for the rest of his life.. This blood cancer is incurable but it can be treated. Chemo tablets for the rest of his life. He suffers dreadfully with extreme fatigue. He was a man worked all his life and never stopped at home and now he can walk to bathroom and get breakfast and might have to lie down and sleep for maybe 2 or 3 hours. 

I am so worried for his mental health. Like most men, he doesnt talk but he sometimes, most times,  looks so forlorn and lost. Other times  he can be quite sharp and cross. 

Is this type of cancer familiar here? I know its a very rare cancer. Id love to get talking to someone with it or someone who has a loved one with it.

  • Hi Jo, I'm so sorry for your news. I did a forum search and found one from 2 months ago. It's here  RE: Anyone living with Essential Thrombocythaemia?  and there are some links on there that you might find helpful too. Please know that we're all here to help whenever you need to talk. Gill xx 

  • Hi Jo I have just been diagnosed on Monday with exactly the same thing as your husband, I go back tomorrow (Thursday) to start the Hydroxycarbamide. Really anxious knowing this is it for the rest of my life and for what side effects I may have. I met with one of the cancer nurses within my appointment and I’ve been given contact numbers for any concerns, you don’t say how long your husband has been on the medication for but you should definitely speak with the haematology nurses about this issue with the chronic fatigue.