My brother died of NHL in June and my dad was diagnosed with Myelofibrosis in 2006 and had an intracranial haemorrhage 2 years ago. He is currently in hospital running a temperature and blood in his urine. Feeling the fear today...
Dear keep smiling, I am so sorry to hear about the loss of your brother, as a fellow blood cancer patient I have some insight into the strain you will have been under as a family over the past 2 years. With your father currently in hospital it must be a very stressful time for you. There is a group here on the forum for bereaved relatives who offer each other support, it’s a safe space where you can express your feelings honestly and openly, it might help reduce any anxiety you are feeling at this difficult time. I read your profile and know you did everything you could to help your beloved brother, and I hope this is of some comfort to you.
Thank you for taking the time to respond Jane. Very kind of you. I joined the Bereaved group too. How are you doing? My brother had a rare one... Large Anaplastic T Cell. I scoured the internet looking for more info but there wasn’t any point - I can see that in hindsight. As for Myelofibrosis, that too seems to be pretty rare. I am so incredibly touched that you replied.... The nurse who was with me when Martin died was called Jane. She was amazing. She exuded and extended such kindness to me on what was the singularly most devastating day of my life so far. Kindness of strangers...
Dear metta, my condition only effects one person in 1 million of the population so information is very thin on the ground, just a couple of pages on google. the doctors just do what they think is the best for me, the condition is not curable but at the moment I am stable and enjoying life with my husband. I’m a quality of life person and that informs every decision I make regarding treatment decisions. I’m glad you decided to join the bereaved relatives group as I’m sure it will help you to express your feelings freely. It touches my heart to know that Martin was in a loving environment at the end of his life and that you felt well supported, it’s what everyone should have. I’m a great supporter of the hospice movement whose only goal is to give dignity to the dying and to allow families to have a better experience. Thank you for your kind words
