Ask the Nurse: Living with uncertainty

Living with myeloma, a precursor condition such as smouldering myeloma or monoclonal gammopathy of undetermined significance (MGUS), or a related condition like AL amyloidosis, often involves navigating uncertainty. While uncertainty is a normal part of living with these conditions, it can have a significant effect on your emotional and psychological wellbeing, but there are ways to manage its impact.

In this month’s blog, we answer some of the questions you ask our Myeloma Infoline about living with uncertainty and explain where to find support.

Where does the uncertainty come from?

Uncertainty can begin before a diagnosis, continue while you are learning about your condition and remain throughout monitoring, treatment or periods of remission or plateau. You may find yourself wondering what happens next, what test results will show, whether treatment will work, if or when your condition might change or what the future could look like.

Living with unanswered questions can be difficult and may leave you feeling worried, frustrated or overwhelmed at times.

Why does uncertainty feel so difficult?

When you are diagnosed with myeloma, a precursor or a related condition, there can be many unknowns. You may be waiting for test results, trying to understand information about your condition or weighing up treatment options and decisions. You may also find yourself questioning plans, expectations or assumptions you had about the future.

These uncertainties can leave you feeling vulnerable and searching for answers. You might spend time worrying about situations that haven’t happened yet or struggle to make plans when so much feels uncertain. Friends, family and carers may experience similar feelings as they try to understand what the future may hold and how best to support you. Learning to live alongside uncertainty rather than trying to eliminate it can be an important part of adjusting to life with a diagnosis.

Can uncertainty appear at different times?

Yes, uncertainty can appear at different times for different reasons.

At diagnosis

Before diagnosis some people spend months experiencing symptoms or undergoing tests before finding out the cause. Although receiving a diagnosis can be a shock, some people also describe a sense of relief at finally understanding what they are dealing with and what the next steps may be.

During treatment

There can be uncertainty around drug names, side effects, treatment plans and procedures such as stem cell transplants. Being given lots of information can feel overwhelming and make decision making more difficult.

During monitoring or remission

Even when things are going well, uncertainty can remain. We often hear that the time around review appointments, blood tests or scans causes increased worry or anxiety, sometimes referred to as ‘scanxiety’. You may question every niggle, ache or pain, wondering if your condition is changing.

These feelings are natural. Speaking to your healthcare team about any concerns can provide reassurance, and it is important to report any new, changing or worsening symptoms. It may help to write down any questions you have between appointments and take them along to help discussions with your healthcare team. You might find our myeloma Patient Diary or MGUS Patient Diary useful for this.

How do people typically react to uncertainty?

People respond to uncertainty in different ways. Some people focus on the best possible outcome, while others find themselves imagining worst-case scenarios. Some people prefer distraction while others want as much information as possible.

There’s no single ‘right way’ to handle living with uncertainty, but understanding your own response can help you identify coping strategies that work best for you. Your needs may also change over time.

What if I keep imagining the worst?

When we feel uncertain, our minds often try to fill in the gaps. Sometimes we make assumptions that increase our sense of threat, such as:

• I need to know the answer before I can cope.
• I need to be completely in control.
• I need to make the perfect decision.

It can be helpful to gently challenge these assumptions. For example:

• I can manage without having every answer right now.
• I can plan for what I know and deal with the rest as it happens.
• I can only make decisions based on the information that I have right now.

How can I deal with uncertainty around treatment and side effects?

Many people worry about what to expect from treatments, how they will respond and how they will handle any side effects. It can help to remember that side effects listed in treatment information are possibilities, not certainties. Everyone’s experience is different and your healthcare team will monitor you closely. They can offer support with many side effects so that they can be managed effectively if they occur.

Our collection of treatment guides may help you to understand what to expect when preparing for treatment or discussing options with your healthcare team.

Are there practical ways to live better with uncertainty?

Many people find the following approaches helpful:

Focus on your values

Think about what matters most to you, whether that’s family, friends, work or hobbies. Try and spend your time in ways that reflect those values.

Look for the small certainties

Whilst some things may be uncertain, there are lots of things you can control. Focusing on these small certainties can keep you from worrying. This might include a planned visit from a friend, a favourite hobby or just a plan for what you want to do today.

Maintain routines where you can

Regular routines can help provide stability when other parts of life feel unpredictable.

Be open to change

Although maintaining routines can help with stability day to day, there may be times when you need to adjust plans or expectations. While this can be frustrating, flexibility can help reduce disappointment when circumstances change, and help you feel more in control.

Talk to others

Sharing how you feel with a friend, family member or healthcare professional can help. Talking about your worries often makes them feel more manageable and can help you feel less alone.

Where can I find support?

You do not have to manage uncertainty on your own.

Connecting with others who understand what you are going through can be helpful. Our Support Groups provide emotional support, friendship, and information, while the Myeloma UK Peer Buddy service offers one-to-one support from a trained Peer Buddy with lived experience.

If you would like to talk things through our Myeloma Information Specialists are here to offer emotional support, practical advice and a listening ear when you need it. Calls have no time limit, meaning you can talk for as long as you need to. You can contact the Myeloma UK Infoline on 0800 980 3332 (UK).

You may also find our Digital Infoday Sessions on Psychological wellbeing and myeloma and Living with uncertainty helpful. These were recorded with Surabhi Chaturvedi, a specialist haematology psychotherapist.

If you would prefer to access support in your own time, our Emotional and psychological support webpages, including the Emotional wellbeing tool provide practical information and self-guided support. Although these resources are primarily aimed at people living with myeloma, some may be helpful to those with precursor conditions too.

Your healthcare team can also provide support and discuss referrals to services such as counselling, cognitive behavioural therapy (CBT) or mindfulness programmes where appropriate.

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