My mum has been diagnosed with Myelofibrosis today after months of decline. She went into hospital in November with low blood and needed blood transfusions. She has since been in 3 times and was waiting for a bone marrow results as she had an aspiration to take samples. The samples have led to this diagnosis.
Does anyone have any understanding of this rare blood cancer? Online seems to be filled with horrible life expectancy and I am so afraid of losing my mum.
She looks very poorly, has asthma and is in general very out of breath. She is currently in hospital recieving blood transfusions again.
Thanks in advance
Hi IvyGeorge and a very warm welcome to the Macmillan Community but sorry to hear about your mum's MF diagnosis.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges will help a lot...... although I do understand the journey as I have lived with another rare type of blood cancer for over 24 years.
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated
MDS/MPN/ET/PV/myelofibrosis (MF)
support group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your mum and indeed yourself you may benefit from joining and posting in our
support group where you will connect with others navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
Do get back to me if you need further help navigating the community.
