Ask The Nurse: Connecting with other people affected by myeloma

This month’s blog will look at the different ways Myeloma UK can help you connect and share experiences with other people affected by myeloma.

Ask The Nurse // 22nd February 2019

Our team of highly trained Myeloma Information Specialists talk to many patients, carers, families and friends of people with myeloma on a daily basis. We offer practical advice and answer questions about living with myeloma. Callers often say they find it beneficial and very reassuring to talk to someone on the Myeloma Infoline because they feel confident that the specialists have the knowledge to answer their queries and can alleviate their concerns. Some callers also say talking to other people in a similar situation can help them deal with the impact of living with myeloma and make them feel less isolated. Therefore in this month’s blog, we wanted to look at the different ways we can help you connect and share experiences with other people affected by myeloma.

Is there a way I can meet up with other people in my local area?

Support Groups offer a range of opportunities to meet other patients, carers and family members in your local area. Groups provide support, friendship and the chance to share information and experiences. Each group varies in size, in the frequency they meet and their format. Some support groups invite specialists or Myeloma UK staff to talk to group members about myeloma, invite people in the area to talk about their life experiences (e.g. talks from local historians, aromatherapists, or musicians), and/or arrange trips and events to support their members. To find your nearest support group, please visit the Myeloma UK website (under support groups) and enter your postcode or the name of your city.

There isn’t a support group near me. How do I start a support group in my local area?

Although this may seem daunting at first, Myeloma UK can help you to start a group and meet you face-to-face to help you build your group. This can include advice, support, information and resources to help you get started. Many groups were started by patients and carers and we can link you up with other support group leaders if you want to gain advice from knowledgeable leaders in the UK. If you want to start a support group in your area, please contact the Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland) to find out more.

Is there a place I can post questions or comments to other patients, carers or family members?

Myeloma UK hosts a Myeloma Discussion Forum where you can post a question or start a conversation with other patients, carers or family members. The Discussion Forum can be a great way to regularly connect with others, ask questions or share experiences about living with myeloma day-to-day. There are several different group discussions you can join (e.g. discussions about treatments or side effects) and members actively engage with each other through the group.

Additionally we provide a range of publications for myeloma patients, carers and family members to help everyone deal with the challenges and uncertainties associated with myeloma. Some of our key publications include our “Infopack for carers of myeloma patients”, “Infopack for living well with myeloma” or our book of hints and tips from people affected by myeloma  “The small things that make all the difference”.

To find out more about any of our services you can look at our website, follow us on Facebook or sign up for our monthly newsletter.

Best Wishes

The Myeloma UK Information Specialist Team