Coping with myelofibrosis

Coping with a rare condition can be difficult both practically and emotionally. Being well informed about your condition and possible treatments can make it easier to make decisions and cope with what happens.

Taking in information can be difficult, especially when you have just been diagnosed. It can help to make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask and help remember the answers. 

Don't be afraid to ask your doctor and nurse to explain things again if you need them to. You can also ask them for written information to take away with you. 

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. 

Talking to other people

Talking to your friends and relatives about your myelofibrosis can help. But some people worry about the emotions this could bring up and won’t want to talk. They might also worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

Your healthcare team can also help you. You can talk to them about how you are feeling and they may be able to put you in touch with local support groups.

Cancer Research UK

It can also help to talk to people with the same thing. But it can be hard to find someone with a rare condition. You can look at Cancer Research UK’s discussion forum - Cancer Chat. It is a place to share experiences, stories and information with other people who know what you are going through.

Organisations

There are organisations that can help you cope with a diagnosis of myelofibrosis.

MPN Voice

MPN Voice provides information, community and advocacy for people with myeloproliferative neoplasms and their families or carers. They also have information for healthcare professionals.

Email: info@mpnvoice.org.uk 

Telephone: 07934 689 354 (Monday to Friday between 8am and 5pm)

Leukaemia Care

Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support. 

It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and nurse education days.

Freephone helpline: 08088 010 444 

Chat via WhatsApp on 07500068065

Blood Cancer UK

Blood Cancer UK funds research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website. 

Support line: 0808 2080 888 

Email address: support@bloodcancer.org.uk