We're here for you if you want to talk

0808 2080 888

[email protected]

Active monitoring (watch and wait)

We're here for you if you want to talk

0808 2080 888

[email protected]

Active monitoring: coping with your feelings

It’s natural to have mixed feelings about being on active monitoring (watch and wait). On the one hand, it’s good that you don’t need treatment. On the other hand, it’s hard to take in, and explain to others, that you have cancer but aren’t being treated for it.

Managing difficult feelings

Being told that you have blood cancer but don’t need treatment can be tough emotionally. Some people talk about feeling like a “fake” cancer patient when they are on active monitoring. Others say they feel they’re not in control, because they don’t know if and when they’ll need treatment.

However you’re feeling, you’re not alone. And there are things you can do to manage these difficult feelings.

Talk to your doctor or nurse if you feel anxious about being on active monitoring. They may be able to reassure you about some of your concerns. They can also refer you for counselling or other professional support, which many people find helpful.

Our support service team talk to lots of people on active monitoring. You can call free on 0808 2080 888 or email  [email protected].

An image of Kate, who was diagnosed with non-Hodgkin's lymphoma, smiling and standing to the left of a wall.

Coping with your emotions

How Kate's new approach has managed to turn a negative into a positive

Kate's story

8 tips for coping with anxiety

We asked people on active monitoring how they deal with the emotional and psychological impact of delaying treatment while living with blood cancer. Here are some of the things that help them stay positive.

1. Talk to the people you love

If you have the support of family and friends, don’t be afraid to embrace it and share your worries or concerns with those close to you. Sometimes, just spending time with the people you love can make all the difference.

My family and friends are a great support – they treat me exactly as they did before my diagnosis, which really helps me cope. I am very lucky to have them.

- Kate

2. Look for peer support

It’s not just those close to you who can offer valuable support. Some people treat being on active monitoring as an opportunity to find others who are going through a similar situation.

Find out more about peer support services or visit our online community forum to talk to other people on active monitoring.

At 45 years old, it took quite a while for my diagnosis to sink in, but support from my family and people who have CLL have been the best things of all, as we are going through this all together. No one should have to go through this alone.

- Adrian

3. Make use of support organisations

There are also plenty of support networks you can access through charities and organisations across the UK and beyond.

Our support service is here for anyone affected by blood cancer. You could also ask your hospital team about local cancer support services.

Elaine found fantastic support at her local Maggie’s centre:

“Watch and wait can be stressful, but I found going to Maggie’s really helped me control the anxiety.”

4. Appreciate the good things

You don’t have to be positive all the time; everyone has their bad days. But some people find that their diagnosis actually helps them appreciate the little things in life, and this positivity can help to keep worries at bay.

Watch and wait does cast a shadow over your life, but every day I don't need treatment is a real gift, so I try to appreciate each one.

5. Take each day as it comes

For some people, focusing on the here and now can stop them worrying too much about the future.

“I can’t do anything about yesterday or tomorrow, so I do what I can with this day and I will deal with any eventuality when it comes,” says Kit.

6. Look after yourself

Another way to stay relaxed and positive is to take care of yourself – both physically and mentally. Keeping active and eating well can help you feel well and reduce stress. And if you do need treatment in the future, it will mean you’re as well as possible to cope with treatment and side effects.

“I work out as much as I can to stay in good shape, if the time comes for treatment,” David says. “I feel very blessed to be in this situation compared to a lot of people receiving treatment.”

7. Don't be afraid to access counselling

Counselling can really help, particularly if you’re worried about sharing everything with your loved ones. Bethan found it takes a great weight off her chest: "It’s a moment in time to offload and say what you really feel and fear; a time to reflect without protecting those you love."

"Counselling helped me cope with change. I ended up seeing the counsellor for two years and that definitely helped a lot."

Dan, whose mum Kate has been living with small lymphocytic lymphoma (SLL) since 2010

Read Dan's story about how he and his mum support each other

A mother and child laughing together on their sofa at home, the son's feet on his mother's lap.

8. Trust your healthcare team

It can be hard to accept that delaying treatment can be a good thing, but having faith in your healthcare team, and the years of research that show active monitoring is safe, can help to put your mind at rest.

Vivien has found this really empowering. “Every time I see my consultant he assures me that the side effects from chemo can be a lot worse than no treatment and, as I am doing well, it's best to leave treatment well alone,” she explains. “Now, I feel very lucky to be on watch and wait.”

Rob, who has CML, makes a smoothie with a young family, placing fruit into a blender.

Living well

Practical tips and real stories to help you with everyday life

Living well with or after blood cancer

We're here for you if you want to talk

0808 2080 888

[email protected]