Beating bowel cancer together

Tips for coping with bowel cancer and the impact of COVID-19 on our emotional wellbeing

Sunday 9 May 2021

A diagnosis of bowel cancer may be a huge moment in a person's life. You're likely to have a range of thoughts, emotions and questions. It can feel like being on an emotional rollercoaster and things may feel uncertain when some of your future plans and life goals have changed or are put on hold. For some people, dealing with having bowel cancer during the coronavirus pandemic has been particularly difficult and in these unprecedented times, we know many of you are understandably worried and concerned.

It's now been over a year since the first wave of coronavirus and the first lockdown in the UK. While restrictions are lifting, these changes could also affect how you feel, as people react to news in different ways. There's no right or wrong way to react.

With the right information and support, some people feel more confident about managing their emotions and continuing with aspects of their everyday life. There are lots of ways to get support and manage your emotions to help you feel more able to cope.

We spoke to Claire Foster, a member of our Scientific Advisory Board and Professor of Psychosocial Oncology at the University of Southampton to discuss ways that can help manage your emotional wellbeing during this time.

Claire is involved in multiple research projects across the UK that aim to understand the impact of cancer and its treatment on daily life. This information is being used to improve support for people with cancer, including bowel cancer. They include:

  • The colorectal wellbeing study (CREW), a study involving 1000 bowel cancer patients investigating the impact of bowel cancer and treatment
  • HORIZONS, a study involving over 3000 cancer patients that looks into how a diagnosis and its treatment affects a person’s life over time and is also assessing the impact of the coronavirus pandemic
  • ENABLE, a smaller study involving people with advanced cancers who have described their experiences of the pandemic

Here Claire discusses ways to help cope with bowel cancer coming out of the coronavirus pandemic.

I'm worried about national coronavirus restrictions being lifted. How can I cope?

Whilst some people may feel some relief as restrictions are lifted, it may be a particularly worrying time for others. It's normal to have mixed feelings or be worried as these are unprecedented and uncertain times. You, and those who care for you, may feel anxious about mixing with others or engaging in activities you did before the pandemic because of the risk of exposure to coronavirus. If you have been shielding this may be harder still.

It might help to talk to someone you trust about how you're feeling such as family, friends, colleagues or your health care team. If you're meeting up with others and are concerned, remind them that you need to be extra careful and that they need to strictly follow national guidelines too. This could include keeping a safe distance, wearing a mask and hand washing to help keep you safe. You might want to meet one-to-one initially.

People in the CREW study have told us that having bowel cancer can knock confidence and make it more challenging to engage in everyday activities. The pandemic and restrictions are likely to have made this even more challenging and the thought of re-engaging with people and activities may be particularly daunting.

It might take time to rebuild lost confidence, but try not to feel pressured to do things you're not yet comfortable with. It may help to set yourself small, achievable goals that you are comfortable with. Taking small steps towards doing the things you want to do can help you grow in confidence and feel less concerned. Independent Age has some useful advice and links to resources about managing anxiety as restrictions lift.

I feel isolated and lonely because of the national restrictions. What can I do?

Before the pandemic some people in the CREW study reported low and declining support from others after their bowel cancer treatment. Low levels of social support were associated with poorer mental health and lower quality of life. The national restrictions have made social connections and getting support even more challenging and many people reported feeling isolated and lonely as a result.

However, the ENABLE study found that using technology has increased significantly in the past year and has helped people stay in contact with family and friends. There are some great resources that can help with using technology to stay connected from a distance.

There are also lots of online group activities that are freely available.

  • Penny Brohn is a charity that provides online group activities, such as exercise classes, a virtual community choir and virtual pub night
  • The Every Mind Matters website provides tips for mental wellbeing while staying at home including eating well, engaging in physical activity, taking time to relax, staying connected with others, doing things you enjoy, and keeping on top of difficult feelings with links to resources to help
  • We also have our Bowel Cancer UK online community, a welcoming place for anyone affected by bowel cancer to ask questions, share their experiences and support each other

Some people have had help from family, friends or neighbours for things such as food shopping or collecting medications. Many local communities have set up support networks. If you're not already aware of these you might want to see what is available in your local area or ask family, friends or colleagues to investigate on your behalf.

What can help me get back to normality?

Whilst having bowel cancer may have knocked your confidence, the restrictions put in place due to the pandemic have also taken us away from our usual routines and activities and have prevented us from seeing family, friends and colleagues for long periods of time. It's likely to take time to feel comfortable in social encounters again after many months of restrictions.

Establishing a routine can help if your usual way of doing things has gone awry, as this can help establish a sense of normality and help you get back to the activities you enjoy. This routine and the activities you chose may be quite different to those you had before bowel cancer and/or before the pandemic. Do things at your own pace and try not to feel pressured to rush into things.

Before the pandemic, many people reported fatigue after bowel cancer and this may make it difficult to do the things you want to do. If you're struggling to manage fatigue you may find RESTORE useful in helping you to feel more able to do the things you want to do whilst managing fatigue. RESTORE is an online resource that provides information about things you can do to help you cope with fatigue and gain confidence to manage it.

Once you have identified something you want to do, a next step is to break this down into realistic achievable goals so that it doesn't feel too overwhelming or ambitious. Setting yourself small achievable goals can help to set you on the path to getting back to doing the things you want to do or that you did before. For example, trying a new hobby, doing some physical activities, getting outside, or calling or meeting a friend.

If it's hard to achieve some goals, it may be useful to think about what it is that's making it difficult and adjust your goals accordingly. It may also be helpful to think about ways you may be able to overcome certain challenges. Others might be able to help you achieve your goals and may welcome the opportunity to do so. The ENABLE study found that having a routine and achieving tasks at home was helpful in maintaining a feeling of normality.

I'm feeling overwhelmed by changes, delays and cancellations to my treatment due to the ongoing impact of coronavirus, and worried about attending appointments. How do I cope?

If you're worried about changes, delays and cancellations to your treatment and are worried about attending appointments, you're not alone. This was reported by some participants in both the HORIZONS and ENABLE studies. There have been changes to planned treatment and tests due to the pandemic, and it's important that you discuss any concerns with your healthcare team.

Many appointments are being conducted by telephone or video calls rather than having to attend appointments in hospital or at your GP practice. Some people find it useful to have someone with them when they have their phone or video appointment to help them take notes and remind them what was discussed. Taking a list of questions and a pen and paper to your hospital appointment can help too.

If you're invited to attend appointments in person at the hospital, you may have concerns about your safety. This is understandable, but NHS services have made changes to make sure it is safe for you to be seen. You still may not be able to take someone with you to your appointments, which might be difficult. If you attend an appointment on your own, you might want to have someone waiting outside the hospital so that they can be with you immediately after the appointment.

You can ask your healthcare team for permission to record the consultation so that you can listen again later as it can be difficult to take everything in. Cancer Research UK provides some useful advice about preparing for telephone, video or in person appointments.

Find out more information about how treatment and care may have changed during the pandemic.

I'm feeling depressed. How do I cope?

For many people, the pandemic has taken its toll on mental health and had a negative impact on quality of life. Not being able to visit family, friends, and colleagues for long periods of time, or engage in meaningful activities due to restrictions, has been detrimental to some people's mental health.

In addition to the suggestions above – including establishing a routine, setting small achievable goals to engage in activities you enjoy, talking to someone you trust and getting active – there is support available online or over the phone and useful resources can be found below.

Getting support

There are lots of ways to get support and manage your emotions to help you feel more able to cope.

Your healthcare team can refer you to lots of places so that you can get the right support for you.

  • Ask your healthcare team to be referred for professional emotional support
  • Join a support group. This could be online or face-to-face
  • Contact other charities such as Macmillan Cancer Support, Cancer Research UK and Maggie's for additional information and support if you can't find what you need on the Bowel Cancer UK website

Some people find it helpful to speak to someone who understands what it's like to live with bowel cancer. Our online community is a welcoming place for everyone affected by bowel cancer to ask questions, read about people's experiences and support each other. Join our online community today.

Claire Foster, Professor of Psychosocial Oncology at the University of Southampton and member of our Scientific Advisory Board

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