Ask the Nurse: Talking to friends and family about myeloma

Talking to loved ones about myeloma can be challenging and feel overwhelming. However, it can also help you to find the support you need at home, at work and from your healthcare team. In this month’s blog we answer some of the questions you ask our Myeloma Infoline team about talking to friends and family about myeloma.

How do I talk to my friends and family?

There is no one-size-fits-all approach to discussing your diagnosis and the timing and approach is different for everybody.

Telling people about your diagnosis can feel daunting and it’s natural to worry about their reactions. Choosing a time and place that is comfortable and free from interruptions can help you all focus on the conversation. Letting your loved ones know there is something you would like to talk to them about can help prepare them for a potentially difficult conversation.

It is important to speak openly and honestly, saying what feels most natural for you in your specific situation. Some people might find it easier to have some prepared notes to start the conversation. Try not to worry about showing emotion, it is normal to find these conversations difficult.

You may find our Myeloma – An Introduction Infoguide useful to refer to when having these conversations. For further information our Infopack for newly diagnosed myeloma patients may also help.

How might my family/friends react?

People may not react the way you expect, especially if they weren’t aware of your diagnosis.

Some may have questions, others may need time to process the news. You can guide them to our website  where they can explore a range of information in their own time or to our Myeloma Information Specialists if they want someone to speak to.

You may find that talking about myeloma brings you closer to the people who matter to you and helps you navigate the challenges of myeloma together.

How can I stay connected to my partner?

Living with myeloma can bring challenges to a relationship.  Open communication is key to supporting each other through strong emotions and treatment side effects.

The physical impacts of myeloma such as pain and fatigue, treatment side effects and the emotional impacts of living with myeloma can affect your relationship and may affect sex and intimacy. Making sure you have quality time with your partner can help things feel more normal. This can be anything you enjoy together and can be adjusted to reflect your energy levels. More information can be found in our blog Ask the Nurse: Myeloma, sex and intimacy.

Following diagnosis, your partner may take a greater role in supporting and caring for you as you both adjust to living with myeloma. This may alter your relationship dynamic which can feel difficult and may take some adjusting to. Talking openly about the challenges and changes this may bring can help with understanding on how to face them.  Our Infopack for carers of myeloma patients contains more information.

The challenges that come with living with myeloma can also bring positive changes. Focusing on shared priorities can bring you closer as a couple.

What should I tell my child(ren)?

It is natural to want to protect children from difficult news but explaining what is happening may make things more understandable and less unsettling long term. Children may pick up on changes to the family dynamics or overhear conversations, so having a conversation about what is happening gives them a chance to talk about any fears or worries.

As a parent/guardian, you know your child(ren) best and know the best way of talking to them, how they may react and what support they might need. If you have young children, our illustrated children’s book Kelsey and the Yellow Kite may be helpful in explaining myeloma to them. You may also find our Ask the Nurse: Parenting and grandparenting with myeloma blog helpful.

Additionally, organisations like Barnardo’s and Hope Support Services provide emotional support for children and teenagers with a parent living with cancer.

Macmillan Cancer Support have an in-depth booklet and some brief tips for talking to children about cancer.

How do I talk about relapse and remission?

The relapsing/remitting nature of myeloma can be difficult for people to understand. Explaining what to expect to friends and family now can help prepare you all for the future.

While entering a period of remission or plateau can be a cause for celebration, this can also be a very anxious and worrying time for patients and loved ones, wondering when myeloma will return.

Our webpage on Treatment for relapsed myeloma is a useful resource to share with loved ones to encourage understanding and consideration.

Who should I tell?

Sharing your diagnosis is a personal decision. People often tell those closest to them first. Talking about what is happening and how you feel can help you to make sense of it and enables loved ones to offer practical and emotional support.

If you are employed, informing your employer early helps them to provide any support you may need in the workplace. Find out more about working with myeloma in our Ask the Nurse blog on Myeloma and work.

Who else can I talk to?

There may be times that you feel like talking to someone you don’t know. Talking to someone who understands what is happening can reduce anxiety or worries you may be experiencing. You can find a local support group near you or may consider accessing Myeloma UK’s Peer Buddy service, where you’ll be paired with someone who has first-hand experience of living with myeloma. They can provide support, understanding and a listening ear, one-to-one.

Our Myeloma Information Specialists can also offer support – get in touch on 0800 980 3332 (UK) or 1800 937 773 (Ireland), or use our Ask the Nurse email service.

How do I handle offers of help?

Family and friends may offer their support and ask how they can help. Having open conversations about the support you need or want and what your loved ones can offer is important.

It may help to focus on practical things and how situations will be managed, such as help with housework, cooking, shopping or attending appointments. Sometimes just having someone there to talk to or sit with is enough.

It’s okay to decline help if you feel you don’t need it right now but let them know their support may be welcome in the future.

What if I don’t want to talk about it?

Sometimes, you may not feel like talking about myeloma, even if others want to. It’s ok to let them know it’s not the right time but that you may talk later.

Chatting about everyday things is just as important and can help to keep communication open.

Writing in a diary or blog may help you to keep track of important information related to your myeloma. It can help you recognise your successes and achievements as well as any challenges and may help you communicate with those close to you. Our free Patient Diary is available online.

If you have any further questions or need support, contact us through the Myeloma UK Infoline at 0800 980 3332 (UK) or 1800 937 773 (Ireland) or use our Ask the Nurse email service.