What happens after cancer treatment ends?

Reaching the end of treatment is an achievement – so why don’t you feel like celebrating? Here’s a Live Better With to coping emotionally and practically with life after chemotherapy or other cancer treatments…

“I got very good at putting on my public face but got to the point that I could quite happily have thumped anyone who told me how strong/inspirational/amazing etc I was because I didn’t feel it.” Live Better With community member

You’ve had the shock of the diagnosis that nobody wants; you’ve been through surgery, and possibly chemotherapy and radiotherapy. You might be on continuing drug treatment or hormone therapy but the major part of your cancer treatment has finished. You can breathe a sigh of relief and start to get back to a normal life . . . or can you? If you’re finding it difficult to adjust, or if you’re feeling anxious, angry, low, or lacking motivation, you are not alone. One of the things that many of our Live Better With Cancer Community Forum or  Facebook group members have found is that they don’t feel as positive or relieved as they or their loved ones would have expected.

We wanted to look at why this happens, what sort of feelings people have when treatment finishes, where to look for support, and what can help.

How do you feel when cancer treatment ends?

A cancer diagnosis, together with the effects of surgery, the invasive nature of cancer treatment, and the side effects that can accompany it, all combine to take their toll on your mind and emotions, as well as on your body.

In addition, when you are going through treatment, you put normal life on hold and have to adapt to a very different schedule. Your daily life is completely altered and taken over; cancer patients often liken it to being in a cocoon or describe it as surreal. Instead of the usual fixed points of daily life – family, friends, home, work, social life – it’s all about hospitals, appointments, doctors, nurses, and medical procedures.

So, readjustment to everyday life, even if you were diagnosed early and have a good prognosis, is not going to happen overnight. It takes time to recover and to readjust and, because we are all different, one person’s experience won’t necessarily be the same as someone else’s.

Anxiety, anger and irritability, panic attacks, and feeling low seem to be frequent features of life after cancer treatment for many of our community members, which is not surprising. Even when your cancer has been treated successfully, and even after you’ve had that landmark five-year all clear, there can still be a residue of fear – you worry about new symptoms or the unexplained aches and pains, especially the niggling pain that won’t go away.

And it doesn’t always help when friends and family members tell you how well you are looking and how strong you are. Their intentions are good but, as one community member found, ’The truth is I feel neither . . . I consistently feel flat, no energy and still struggle to be amongst people, despite putting on a brave face.’

Another member was still experiencing feelings of panic and anxiety, 18 months after her treatment finished, ‘I couldn’t go in shops, walk on my own, not even down the road.’

And this member felt that she had a permanent black cloud over her, ‘I got very good at putting on my public face but got to the point that I could quite happily have thumped anyone who told me how strong/inspirational/amazing etc I was because I didn’t feel it.’

As community member, Lou, says,’ I think a lot of post-cancer living requires a lot of “self-help” and that is not easy.’

Who can you turn to after cancer treatment?

When you are stuck in the middle of feeling down, or are suffering from panic attacks or anxiety, it can be hard to see a way out, but help is available and you do not have to cope alone.

  • Specialist cancer nurses – they can be a vital lifeline, as community member, Lou, found, ‘The hospital runs drop-in coffee mornings once a month that you can go along to, just to chat with others. The breast care nurses are always available at these too, should there be any queries etc. They have people visiting who offer help for post-cancer patients, courses, exercise classes, groups etc. They are trying to help people move on after cancer. Anything like this can only be a good thing.’
  • Local cancer support charities – such as Force, which is based in Exeter. As well as funding local research and buying equipment to help with patient care, Force provides support and counselling and offers practical support too. There are local organisations like Force around the country so check with your hospital or medical centre to see what is available.
  • Macmillan Cancer Support – offers a range of services around the country and some of our members have benefited from counselling and Reiki treatment, for example. The Macmillan website has some excellent guides to care after treatment and you can call its free helpline on 0808 808 00, seven days a week from 8am-8pm.
  • Talking therapies – including cognitive behaviour therapy, can be a very effective way of tackling negative thoughts and feelings, such as anger or anxiety. Find out more about talking therapies here. Check with your GP to see what is available locally and ask for a referral.
  • Social prescribing – a growing number of GPs’ practices are now looking at social prescribing as a way of helping their patients in a more holistic way. They do this by referring them to local community services that offer activities such as gardening, group learning, arts, walking and swimming. Check with your GP or medical centre to find out if this is something the offer and what is available locally.

What will work for you after cancer treatment?

The key to emotional and psychological recovery is to find something that you enjoy or that resonates for you. It may be discovering something new or rediscovering an activity that you once loved. Even if cancer or cancer treatment has limited your mobility, there are phone and online support services that you can tap into and activities that you can do at home. Here are some of the things that people have found helpful, as they move on from cancer treatment:

  • Meditation and mindfulness – techniques like this can help you shift your thoughts from negative to positive, by focusing on the here and now. Although you can join a local group, you also learn some simple techniques to practice at home from the many books, CDs and DVDS now available on meditation and mindfulness. You can find a specially selected range of recommended books and aids to mindfulness in the Live Better with online shop.
  • Arts, photography and crafts – join a local art, photography or craft class or group. Even if you can’t get to a class, hobbies such as knitting, sewing or woodwork can help to give you a new focus; making or creating something can be very therapeutic. The mental health charity, Mind, has some helpful information on arts and creative therapies, including art, music, dance and drama. You can also find details of craft courses and workshops around the country here.
  • Join a choir – singing, especially singing with a choir, is good for you physically and mentally, and you’ll make new friends. You don’t always need to read music, especially in community choirs, so check which choirs are active in your area. You can find details of community choirs led by members of the Natural Voice Network here.
  • Bibliotherapy – if you’re a keen reader, or once were, reading the right book at the right time, can be immensely helpful. In case you think that it’s a new-fangled idea, bibliotherapy has been around for over 100 years. The School of Life runs a bibliotherapy service that you can access in person in London, or remotely via Skype or phone. Maybe a loved one could buy you a voucher for your birthday or Christmas . . . or you could visit your local library – librarians are so knowledgeable and their advice is free!
  • Connect with nature – being in the open air, especially in the country, by the sea or in woodlands, can all help your sense of well-being. If you want to start gradually and don’t want to walk on your own, get in touch with Walking for Health, which organises short walks around the country. (Find your local group here.) It’s free to join and welcomes members with a range of health conditions.
  • Join a social group – the Men’s Sheds movement, for example. They’re community spaces for men to connect, converse and create. The activities are often similar to those of garden sheds, but for groups of men to enjoy together. They help reduce loneliness and isolation – and they’re fun.

Live Better With Cancer has a range of recommended books that cover all stages of cancer treatment and beyond.

Visit the Live Better With Cancer Community Forum for information, advice, and tips and to share your own questions and suggestions.

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