I’m new to the forum so have no idea what I’m doing, I was wondering whether there are any group chats on either WhatsApp or Messenger that I could join.
I was diagnosed with Primary Myelofibrosis in June 2019, I’m currently in the High Risk category I believe, other than speaking to doctors & nurse when I have to go for hospital appointments it’s get kinda lonely as no one really understands my condition and symptoms.
Thank You for taking the time to read.
It is a disconcerting time for you. No wonder you are feeling lonely.
I have a very different blood cancer to you but feel sure that someone will pop up here with the same problem as you.
I was remarkably lucky as I found a lady, I already knew at home, had the same blood cancer as me and she was a few years ahead of me and gave me a lot of support. I discovered this forum a bit later but I am thrilled that you found it now. You will not be alone. Useful advice and warm good wishes just make you feel more relaxed and less stress is always golden. Are you working Mark1? If so how is that going. Do you have good friend and family support? One of the most difficult things is that we do not want to worry our loved ones and bottle things up. If it would help you do. Insider a chat on the phone with the support line.
I will be thinking of you and watching this chat to see who can help you and how things are going. Grandma Jo
Hi @Mark1 you are definitely not alone now, you are part of our forum family.
@GrandmaJo has given you a brilliant response.
I also find that it often does not matter which blood cancer we have we often share similar fears, anxieties, thoughts, feelings and practicalities.
There is a lot of helpful information on the Blood Cancer UK website and the Blood Cancer UK support line is there for you on 0808 2080 888.
Yes, no matter which blood cancer you have it can feel a very lonely place.
I could not explain to work what I did not understand myself.
I felt in a bubble with the world going on around me.
That was 20 yrs ago.
As for your question I do not know about WhatsApp and Messenger groups.
I will copy Blood Cancer UK @BloodCancerUK-SupportTeam for you
Please do keep posting as I look forward to hearing more about you.
Really look after yourself and I am so glad that you have found us