Covid vaccine and blood cancer
Coping with risk and uncertainty as restrictions are lifted
Now that restrictions are being lifted, this page is about your level of protection and risk, and dealing with uncertainty.
Page updated 10 August 2021
People with blood cancer have been taking extra precautions to avoid covid for over a year. As the covid vaccines continue to be rolled out and lockdown eases, people with blood cancer who are clinically extremely vulnerable are understandably asking, how protected am I, and how can I weigh up the risks to make decisions about what I do?
How effective are the covid vaccines in people with blood cancer?
As the covid vaccines continue to be rolled out, we are starting to learn more about how well the vaccine is working in people with different types of blood cancer. At the moment, it's clear the vaccine doesn't work fully in everyone with blood cancer.
Having said this, we do think that for most people with blood cancer, the vaccine does offer some protection, and is worth having. Although your immune response to the vaccine might not be as strong as someone’s without blood cancer, there is still likely to be a response. This response could well be enough to stop you getting seriously ill with coronavirus.
Read more about what we know about covid vaccine efficacy in people with blood cancer.
Is it safe for me to stop shielding?
At the moment, people with blood cancer are faced with making decisions about what they will and won't do, without fully understanding how effective their vaccine has been. This is understandably very difficult. But you might want to think about these other factors which also play a part, alongside you getting your own vaccine:
- People close to you getting vaccinated - people you live with can now get the vaccine as unpaid carers or household contacts
- More and more people in the rest of the population getting vaccinated
- Coronavirus rates in your area coming down - the lower the local infection rate, the lower your risk of coming into contact with the virus
- Understanding your own level of risk, as not everyone has the same vulnerability - ask your healthcare team.
There will come a point where because of the things listed above, the risk of coronavirus to you becomes much lower than it is now, and the benefits of full shielding no longer outweigh the disadvantages of it. This will depend on your personal feelings about risks and the disadvantages of shielding. At this point, you may want to think about things you are comfortable starting to do again, and things you still want to avoid.
Five reasons to be hopeful
As difficult as it feels today, there is real reason to hope the next few months could bring better news.
Making decisions about risks
People with blood cancer are now having to make decisions about which risks to avoid, without fully understanding how effective their vaccine has been. For many people, this is really hard. Whatever you choose to do, make sure that you feel comfortable with your own decisions - that you don’t feel pressured into doing anything you’re uncomfortable with, and equally that you don’t feel guilty about doing things that are important to you.
There are things you can think about, to help you make decisions. Not all risks are equal.
The risk is lower if:
- People you spend time with have been vaccinated
- Coronavirus rates in your area are low
- You meet people outdoors rather than indoors
- If indoors, you have doors or windows open, so there is good ventilation
- You wear a face mask
- You keep the number of different people you see low - can you prioritise who you see for a bit longer?
- The people you choose to see are not mixing widely themselves.
- You don’t share food, cutlery, tea towels, bath/hand towels, or other things that touch your face.
You could also consider:
- Checking the covid rates in your local area - you can do this anywhere in the UK using this BBC postcode checker.
- Ordering one of our free shielding badges, to let people know you still need space.
- Taking regular rapid covid tests, and asking other people to take rapid covid tests before they see you (these are available for free from pharmacies). It's very important to know that these tests are far from 100% accurate and false negatives (where someone tests negative even though they are carrying covid) are common. While a positive test can certainly help show if someone does have covid, so they can isolate and you can avoid mixing with them, a negative covid test does not prove that someone doesn’t have covid.
If you are back at work and don't feel safe, read our information about your rights at work. After shielding is paused, if you are clinically extremely vulnerable, you are still eligible for furlough until the scheme ends at the end of September.
Managing uncertainty about how long you'll need to shield for, or feeling pressured to return to work, may be very unsettling or cause you anxiety or frustration. Our support line is here to help. Call us free on 0808 2080 888. Our online forum is also a place where you can share your feelings or questions with other people with blood cancer.
Further down on this page you'll find a section on 'Dealing with uncertainty', and some insights from other people with blood cancer.
Why are feelings of anxiety so common right now within the blood cancer community?
Comparing different risks
Here are some articles and infographics that might help you think about and compare different risks. These are not specifically for people with blood cancer, but they do allow you to compare different activities and their risk levels in general:
"As someone with blood cancer, every day, month and year I can do things feels extra precious. But I feel like covid has robbed me of some of this.
"What I have to keep coming back to is 'scaling the problem' – as long as I don’t catch covid and die from it, then anything is better than that. I also try to see what covid has given me – for me, this is more time with family. It’s easy to become fixated on the losses, but there have been some gains. To anyone else struggling with this, please talk about your concerns – don’t hide them! There are lots of people who understand what you’re going through in our online forum."
Mel, living with chronic lymphocytic leukaemia (CLL).
What are other people with blood cancer doing to support themselves during this time of uncertainty?
Dealing with uncertainty
Lots of people talking to us are finding that not knowing how long they’ll need to shield for, or not having the government support to be able to shield if they feel unsafe, is becoming increasingly difficult. There are also uncertainties about how effective the vaccines will be, and whether coronavirus rates will stay down as society reopens.
All this uncertainty makes it difficult to look to the future, to plan, to feel hopeful or even happy. It might also be having an impact on your employment or personal relationships. Uncertainty can also cause anxiety, feeling out of control, anger or sadness.
Rebecca, our Support Services Team Leader, shares the suggestions she often gives to callers on our support line:
"It’s important to acknowledge that we are living in challenging times. Uncertainty, whether from coronavirus, a blood cancer diagnosis, or even something like moving house, can sometimes feel unbearable, and lead us to ‘catastrophise’ or focus on the worst possible scenario. This type of thinking is a common response and may seem protective, but it can lead to spiralling “what if” thoughts and panic.
"The first step is to recognise these unhelpful thoughts and to ask yourself, are the things I’m thinking/telling myself based on the information available to me? What information do I need to make an informed decision? Is the source of my information reliable? Sometimes we select information that magnifies negative details, and filter out information that offers balance. There’s a lot we don’t know, and our minds can fill in the gaps with incomplete information, predictions and worry.
"The second step is to ground yourself in the present and the here and now, which can help you sort through your thoughts and feelings, and allow you to reflect before you respond or act. This gives you the space to ask yourself, what do I need right now to help me cope? What support is available to me? We often feel better when we have a plan, as being proactive and focusing on the things we can control can reduce worry.
"The third step is to ask yourself, who can I talk to about this? How have other people found ways to cope? Isolation can increase fears and create more unhelpful thoughts. Seek out connections with others. Sometimes we need help from family or friends, or a professional, to help us sort through our thoughts and feelings and find ways to respond to challenges. You can contact our Support Services Team to talk to one of our team.
"The most important thing is to be kind to yourself. You are not alone. Your feelings are normal. It is normal for your capacity to cope with change to fluctuate, especially if you have other stressors in your life. There are steps you can take and strategies you can practise, to help manage anxiety – some of these are described below."
My mental health and coping strategies for shielding
Self-care tips from a clinical psychologist
"Shielding as a family (for those of us who chose to) hasn’t been easy for household members either.
"It’s been almost a year of full isolation for us too. For those of us who’ve watched our loved one fight for their life, the sense of responsibility to protect them now is overwhelming. Better days are coming though, and we'll keep doing it for as long as it takes, because more than most, we know what's at risk."
Jude, whose husband is living with lymphoma.
In times of uncertainty, many people find these things helpful:
- First of all, acknowledge and accept how you feel – it’s normal to find this uncertainty difficult.
- Talk about it – there are many people with blood cancer struggling with this, who are supporting each other. Talk to others or simply read about what helps them in our online forum.
- Limit how much news you read or watch. It can become slightly addictive, especially if you’re feeling anxious. Try limiting it to once a day.
- Take moments to engage with or focus on something, to bring your mind into the present moment, rather than worries about the future. For example, do something practical, take some long, slow breaths and count them, or engage your senses by listening to a song, or just really looking at what’s around you, whether in your home or on a walk.
- Try mindfulness – there are so many ways to be ‘mindful’ (it's not just through meditation) and it reduces stress. Try some of our guided exercises – they take just a few minutes and could help you to feel calm.
- Find more information and resources on our page about coping with your emotions about coronavirus.