Hello and thank you for your post,

Living with myelofibrosis can be difficult even if you do not need to start treatment. This is because of living with the uncertainty of what will happen, as is the case for many things in life. Unfortunately, no one can tell you what will happen which can be worrying.

I cannot speak for your family however because they may see that you are physically well they may not understand the psychological impact living with myelofibrosis could cause. So, if you are able to it might help to remind them about your diagnosis and that living with it is difficult for you. They won't necessarily see that if you don't tell them. The chances are they would want to know.

It might help to read the information we have about coping with myelofibrosis on our website.

You may also want to ask for help, this could be your GP or a specialist nurse in your chemotherapy team. They may be aware of the support you could receive locally. You might also want to read about looking out for your mental health on our website.

You may find it helpful and you would be welcome to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline

Hi Gillian I was diagnosed more than two years ago I had no symptoms just had my annual check up and blood test with GP then sent to hospital for a bone marrow sample then Myelofibrosis was diagnosed at the moment I don’t have symptoms I walk every day swim twice a week and am reasonably fit for my age,no medication at the moment,my mood and worry goes up and down thinking of the future, the walking in nature and swimming really helps, like you they didn’t mention it’s a blood cancer so very upset finding out at home on the internet I also do handcraft hobbies like dressmaking,embroidery ,and crochet which help a lot ,thank you I will be kind to myself and the same to you