Making balanced decisions
What you need to know:
- Get as much information as you can about your personal risk of infection from your hospital team or GP.
- Think about how you live your life and what’s most important to you.
- Consider precautions you can take to protect yourself from getting infections.
- Decide what you can do to protect yourself and still have a good quality of life.
The importance of your mental health
Risk is the chance of something bad happening to you.
Infection always poses a risk to your health and wellbeing, but the risk is higher when you have blood cancer. Even if you are not currently having treatment, or finished treatment some time ago, your immune system may be weaker than it was before the cancer.
Your hospital team or GP may advise you to take extra steps to protect yourself from infection. Some things will be easy to add into your daily life and others may be more challenging.
Most people with blood cancer say there is a balance between taking steps to protect yourself and maintaining a good quality of life. Getting ill from an infection is a health risk, but so is feeling lonely and isolated. Your mental health is a key part of how you live with blood cancer.
It may help to talk to other people with blood cancer about their approach. But remember that everyone is different, even if they have the same type of blood cancer.
Talk to family and friends too. But don’t feel pressured into anything you’re not comfortable with. The decisions you make must be right for you.
Living your life
“It's about being able to evaluate your own risk, based on the information you're given, such as your blood counts. Different activities might carry different levels of risk, but they might not necessarily be high risk for everyone. And some things you either can't or don't want to avoid doing.
For me, it's about being prepared just in case things go wrong, but not living your life as if things will go wrong.”
David, diagnosed with myeloma
Which activities are most risky?
We learnt a lot about the spread of airborne viruses during the covid pandemic. Based on this learning, activities are thought to be more or less risky depending on:
The level of ventilation:
- Outdoor activities are lower risk than indoor activities.
- Indoor activities in a well-ventilated space (for example, with windows and doors open) are lower risk than indoor activities in a badly ventilated or enclosed space.
The number of people:
- Activities involving fewer people are lower risk than activities involving lots of people.
The type of activity:
- Activities where people are silent or speaking at a normal level are lower risk than if people are shouting, singing or exercising heavily.
Viruses like covid are a particular risk for people with blood cancer. But remember there are other types of germs, for example, bacteria from soil, pets, food and so on.
Read our hygiene and food safety tips that can help you avoid different types of infection.
We have specific information about what covid means for people with blood cancer including covid vaccinations and treatments.
Your 3-step guide to decision making
These steps may help you make decisions about how to live with infection risk.
Step One: Ask your hospital team or GP to explain your personal level of risk.
Here are some questions to ask:
- Am I at risk of infection?
- What’s my level of risk?
- Will that change?
- When will it change?
- What can I do or stop doing to lower my risk of infection?
Your team may not have exact answers, but they can tell you what they know based on the type of blood cancer, the treatment, and your test results.
Step Two: Think about yourself and what’s important to you
Different activities have different risks, but they also have different levels of importance in your life.
- What are my priorities?
- What’s essential – what can’t I change?
- How risky are the things I need or want to do?
- Is there a way to make these things safer?
Remember that if you work, you can ask for “reasonable adjustments” as someone with cancer. See our money and work page for more information and think about adjustments that could make you safer at work.
Step Three: Talk to someone about the decisions you need to make
Once you have answers to the questions in steps one and two, talk to someone about them. Talking things through often helps with decision making. You could talk to:
- a relative or friend
- your clinical nurse specialist
- a counsellor or therapist
- other people with blood cancer
- our Support Service.
Personal stories
Everyone is different, but it can help to hear how other people learn to live with infection risk.
Read their stories about the decisions they have made to keep themselves safe while continuing to enjoy life.