By Annie Angle, cancer nurse, Dip. Oncology Nursing, Royal Marsden, London
Reviewed by Dr Michael Jefford MBBS, MPH, MHlthsevMt, PhD, MRACMA, FRACP
Consultant Medical Oncologist, Peter MacCallum Cancer Centre
Taking time to understand and accept your feelings
Finding ways to accept your changed feelings
During your cancer treatment it was probably hard to imagine that it would come to an end. Maybe you were too scared to believe it would end, or too anxious to think that your treatment would be successful. You and your family were probably focusing on just getting through each day: getting to hospital appointments on time, having tests and dealing with the side effects of your treatment. You were coping with so many emotions and changes in your life. You may not have thought much about life after your treatment.
You probably feel your life has been turned upside down. You may think that you should be able to just pick up where you left off before your cancer diagnosis. Now's the time to return to a ‘normal' life, feel happy and positive about your future, or feel relieved you no longer have regular hospital visits.
For many people who finish their cancer treatment, it isn't that simple. You may no longer feel sick because of your cancer-but you might not be feeling that great either. Knowing what to expect after your treatment can help you and your family cope with the future and any changes that you may have to make.
‘Every cancer sufferer needs to go through an extraordinary process of re-adjustment after the treatment.' (Neil)
Most people go through a mixture of good and bad feelings after their treatment is over. You may feel relief and happiness that you made it this far and your treatment seems to have been successful. But it isn't unusual to feel frightened and lost, especially during the first few months. You no longer have the regular attention and support from your nurses and doctors. Even though they may have told you to call them if you are worried, you might not feel comfortable doing that. Your family and friends may not visit or call you as much. You may get the feeling that the people around you are assuming that you are doing OK! Many survivors say that they can feel very lonely and angry about this. But, at the same time, you may think that you should be able to cope now your cancer has gone. All these emotions and thoughts can become confusing.
‘As soon as the treatment finished, that was more of a shock. All of a sudden you're on your own. Having spoken to quite a few other people, they felt the same. Not that people have left you: I could call on anyone, I could call on the hospital, I could call on my doctors-but it wasn't the same, there wasn't active treatment going on.' (Patricia)
Immediately after your treatment, it is very natural to have concerns about your future and how you will cope. Like many cancer survivors, you may feel:
‘[Following treatment] I felt very scared in a lot of ways, very nervous about what things held for me, because you're seeing somebody every day, day after day, and then suddenly it's goodbye, we'll see you in three months. So you're left there on your own to cope with things.' (Rosemary)
Not everyone will have difficulties after their treatment finishes. But for many people their problems and fears won't just go away. You may need a lot of love and support: maybe even more than you did during your treatment.
Be kind to yourself during this time. Don't expect to feel great about everything. Go slowly and give yourself the space to come to terms with all you have been through and what lies ahead. You may have possible long-term side effects that you will have to deal with as well as finding the confidence to get your social life going again. You may feel sad that you can't do some things that you used to enjoy. You no longer feel certain about your health and the future. This can be very upsetting.
‘Survival keeps on going; every day brings a new challenge. I think it's been both a curse and a blessing, when I look back on it.' (Neil)
It can be very exhausting to try to stay positive all the time and act as if you are fine. You may have days when you feel awful: very down, sad and alone. Other days you may just feel angry, fearful or frustrated. This is OK. It can be difficult but try to listen to your feelings and accept them as they happen. It is better not to ignore negative thoughts but try to work through them. Most cancer survivors say that they do feel better with time. But it usually doesn't happen overnight-so don't expect too much from yourself too soon. Also, don't be surprised if, some time after your treatment (sometimes a few years), you have periods of feeling down. This is not uncommon either.
Many friends and colleagues may keep advising you to ‘think positive'. This is very difficult when you are dealing what has happened and how your life has changed. There is no scientific evidence that ‘being positive' has any effect on surviving cancer. (Although many survivors say that being positive helped them to cope through their illness.)
If family and friends think that you should be doing more and feeling happier, let them know that you still have a lot to deal with. You may get sick of others telling you that you look so well. It's perfectly natural to feel like this. You need those close to you to try to understand your fears and be there to listen and support you. Remember: go at your own pace, not theirs.
If you continue to feel very low for long periods of time, see your doctor. You may be suffering from depression. This is different from the sadness and low moods that many cancer survivors have soon after their treatment. There is more about depression and its symptoms here.
You may have negative feelings for months after your treatment. Some cancer survivors say that some of these feelings never go away. But they find ways of coping with them. The most important thing to remember is there is no right way to feel. Each person is different and has different concerns and long-term worries.
Feeling negative a lot of the time takes up a lot of energy. You and those close to you can get worn down by this. Family and friends may not be as understanding as you want. They may try to tell you how you should be feeling. This can put a lot of strain on your close relationships.
Try not to see it as a weakness if you are having trouble coping on your own. Lean on those close to you. Don't be afraid to ask for help. See this as a positive move towards your recovery. Support from others will not only give you comfort but also practical ideas on how to cope.
If you don't feel comfortable talking to those close to you about your feelings, a trained counsellor may help. See the section on ‘Support services and resources'.
‘People did shy away from it [the cancer] a bit, and that there was an element of having to manage those relationships in a sense that you had to bring it to the table and make people feel comfortable.' (Jason)
As well as talking to others about how you feel, there are other things that you can do. For example, try:
When you have negative thoughts, try to work through them by remembering a happy time in your life. This may be difficult at first but becomes easier with practice.
Throughout this booklet we discuss more ways of coping with specific feelings and concerns. We also suggest further resources that you can use to help get the information and support you need.
