A guide to helping manage your thinking and feeling more in control throughout treatment and beyond
Cancer touches the lives of everyone. If we have not had cancer ourselves, we all know someone, be it a family member, friend or work colleague who has. The ‘C’ word has so many connotations causing people to automatically fear the worst. This is not helped by the catastrophic language and frequent myths portrayed in the media, reinforcing a sense of worry and helplessness. When anyone is given a cancer diagnosis their whole world is turned up-side-down. This news is met with a huge raft of emotions. However, once the shock of an initial diagnosis has passed, there can be a significant variation in how individuals and their families cope. Having worked as a paediatric oncology nurse for the last 8 years, I have always been interested to understand how some families manage adversity so well without any detrimental effect to their mental health, whilst other families really struggle. It was not until several years ago when I went through the Thrive Programme myself and then trained to be a Thrive Consultant that I started to get a clearer answer to this question. What are the key psychological components needed to not just survive through cancer but Thrive?
To enable us to effectively manage our thinking and not crumble during periods of adversity, it is important to have strong psychological foundations and challenge limiting beliefs and unhelpful thinking styles that are creating symptoms such as stress, anxiety, phobias and depression. Having a healthy self-esteem, low social anxiety, feeling powerful and in control of our experiences and having good coping skills are all key to not only surviving through cancer but thriving. None of us were born with low self-esteem social anxiety or a belief that we are powerless to change our lives. We have learnt these unhelpful ways of viewing the world. But the great news is that these can easily be changed.
Taking Back Control
The extent to which a person feels they have power and control over their lives is really key to how well they are going to be able to manage their emotions at diagnosis and during treatment. In psychology speak, this is called locus of control. An internal locus of control is when we believe we are in the ‘driving seat’ of our own lives, whilst an external locus of control (LOC) is when we believe our lives are controlled by luck, chance, other people or any external force outside our control. We may have an internal LOC for some aspects of our lives, for example our work, however, in other aspects this may be external.
Of course there are many situations with a cancer diagnosis that are beyond the control of the individual, for example, treatment schedules, appointments for scans, blood tests and theatre slots. There are also inevitable side effects to chemotherapy and radiotherapy that are beyond the control of the individual. Some of these are important indicators that treatment is working, such as hair loss and a lowered immune system. Some side effects are predictable but there are of course individual differences. Preventative strategies are used to help alleviate side effects such as nausea and vomiting. Having an internal locus of control in relation to a cancer diagnosis is also about developing great coping skills for those things we cannot control. It is the recognition that this is happening but there is a choice in how we respond to it. Two people can have the same diagnosis, with the same grade of tumour, yet how these people respond emotionally to having a cancer diagnosis could be very different. One person may approach the situation with real grit and determination that they are going to do everything in their power to help themselves get through this situation, whilst another person may become depressed, anxious or angry. Of course these emotions are completely understandable with many questions be asked such as ‘why me’ or ‘why my child/partner’. However, acceptance of the situation needs to come and with it a way of thinking that is going to create good coping skills. We cannot change the diagnosis, but we can change how we think about it in order to develop a healthier emotional response.
A strong desire for control should not be mistaken for having good coping skills. When someone is trying to control every aspect of a situation, it really means they are feeling very overwhelmed and helpless. ‘Micro-managing’ a situation or just avoiding it all together does not allow us to develop coping skills. It is really important to learn to tolerate and face up to situations that we may find uncomfortable. We can then slowly build up the evidence that we can tolerate situations in a healthy way. Instead of asking the question, “What’s happening to me?” it is more helpful to ask: “What am I doing to make myself stressed, anxious or depressed?” If we realise that we are doing this to ourselves that we can do something about it.
There have been thousands of studies on the detrimental impact of an external locus of control in relation to our physical and mental well-being. For example Gale et al (2008) analysed results from the 1970 British Cohort Study where thousands of British adults were followed from birth. They found that those with an internal LOC at 10 years old were less likely to be overweight at the age of 30. Whilst Sturmer et al (2006) found that those with an internal LOC in relation to health had a lower risk of a heart attack. Roper and Login (1977) compared 2 groups of pensioners in a nursing home. One group was told it was their responsibility to take care of their well-being and also was given a plant to look after. In the other group they were told that it was the job of the staff to make them feel happy and that they would care for their plant. The mortality rate prior to the study was 25% over an 18 month period. 18 months after the study, this was 30% for the group where the staff was responsible for their happiness and only 15% for the responsibility induced group.
Self-esteem is just a belief related to our self-worth and how we view ourselves. It is nothing to do with what other people think of us, just how we see ourselves. Self-esteem is not fixed and can be changed in the matter of weeks. Some people are incredibly harsh on them-selves and have an inner voice that is really self- critical. In order to manage your thinking effectively during cancer treatment, it is really important to be kind to yourself and give yourself a break. To increase your self-esteem and make it more stable, it needs to be internal. By this I mean that you are not relying on other people to make you feel good about yourself. This can be really exhausting as every time someone praises you, your self-esteem is high, but if someone criticise you, your self-esteem plummets. In order to make it more internal, it is really important to process events in a positive way. You may believe this could be difficult if you have just been diagnosed with cancer, but with practice it isn’t. It’s about recognising the things you have achieved that you would normally do any way but not recognise as positive. It could be the way you were calm and in control at the last visit to your consultant, talking to a friend you haven’t spoken to in a while or going for a walk. Write your positives down 3 or more times a day in a journal or on your phone. For each one think about what made this a positive experience, what you would say to someone else who had this experience and what does this show you? This exercise will really help you to feel better about yourself.
As with low self-esteem, social anxiety is just another limiting belief that can prevent us from managing our thinking effectively and dealing with situations in a helpful and positive way. It is a fear of being judged by others. If we have high social anxiety and fear asking questions during diagnosis or treatment with a consultant, this can lead to greater feelings of helplessness, frustration, hopelessness and a sense that your needs are not being met. It is really important to ask questions and say if you don’t understand something rather than just agreeing to please others. Remember consent for treatment or entry onto a clinical trial is informed; you have a choice and you need to understand what your options are. No one expects you to take on board all the information at once; there is far too much to absorb. I always say to families to write a list of questions before their next visit. This is a great way to feel more in control.
Social anxiety and body image are also connected. When your hair starts to fall out you may worry about people staring at you. It may help you to feel more in control of the situation by getting your hair cut shorter and talking through different options such as wearing a head scarf, trying on some wigs or hats. If people do look at you, it’s likely to be through empathy and nothing malicious intended. Remember social anxiety is not real. If you are smiling, getting on with your life in-between courses of treatment, everyone with have respect and admiration for you. It’s about learning to tolerate feeling a little bit uncomfortable and this will help your confidence and give you evidence that you can cope well with different situations.
Visualisation and Rehearsal
In my role as an oncology nurse, I observe patients feeling sick before they have even been given any chemotherapy; sometimes it can happen as they are just walking into the unit. This is due to anticipatory anxiety. They may have had some nausea or vomiting in a prior course of treatment and become anxious that this is going to happen again. A great way to combat this anticipatory anxiety is to practice rehearsing what you want to happen rather than what you fear will happen. Your imagination is so powerful it will always win so we need to get it working with us rather than against us.
As Thrive Programme Consultants, we use the analogy of the Jaws film to explain anticipatory anxiety. If we watched Jaws or a horror film with no sound, it really wouldn’t be very scary! Visualise and rehearse in your head about feeling calm and in control and that you are not going to be sick. You may have been sick during a previous course of chemo, but you are now on new anti-emetic tablets that actually did help much better last time. Write down the evidence or do a small video diary to remind yourself that you were absolutely fine last time. The more evidence, the stronger your belief in your coping skills. The same principles apply with anticipatory anxiety in relation to injections, getting blood taken or any painful procedures. If you let your imagination take hold and become really anxious about how much it will hurt, it really will be painful as your muscles will tense. I know it’s really irritating when someone says ‘try to relax’ but it’s about finding a strategy that works for you. Never be afraid to tell a nurse or doctor how you want something done. This is your way to exert some control. You cannot control that fact that you may need a certain procedure or injection as it is part of your treatment, but you can control how you can manage your thoughts and how the injection is given or bloods taken.
Mind Your Language!
Language and thought are inter-connected so it’s important to be mindful of this. If we start using really catastrophic language, we will inevitably make ourselves feel worse. If we play things down, rather than making language melodramatic, it helps us to manage our thinking more effectively. Start recognising what your inner voice is saying to you. Is it helpful and kind or is it putting you down and telling you that you are worthless and stupid. Many people have a very low opinion of themselves. They certainly wouldn’t talk to others as they talk to themselves. So start being kind! The following is a really helpful mantra that we use with our clients going through the Thrive Programme:
“The thought that is in my mind right now: is it helpful? If not, then either change it for one that is, or bin it”!
Secondary Gains and Colluding
If you are living with a cancer diagnosis, your loved ones will want to do everything in their power to help you through this experience and give you great support. However, being overly sympathetic can often have the opposite effect. It is lovely to have tea and sympathy but it can reinforce a sense of helplessness. Secondary gains are about all that extra attention you are getting since your diagnosis. For someone with low self-esteem this can feel really great. However, it is re-enforcing a sick role and an external LOC. It is really important that your loved ones support and challenge any unhelpful beliefs or behaviours, not collude with you. Colluding really does cement a sense of helplessness. Online support groups can also have the same effect. It is often good to chat to people who are going through a similar experience as these people really understand what you are going through. This sounds great in principle but what is the nature of this support? Is it helping you to feel more powerful and in control? Or is about talking through how awful things are and how terrible you are going to feel. It is important that your loved ones are able to gently challenge you and give you the inner strength to recognise how you are creating stress and anxiety yourself.
Mind-Body Connection – Psychoneuroimmunology
How we manager our emotions is not only important for our psychological health but also on our physical health. If we process an event internally, believing we have choice in how we respond we will manage stress better. Everyone gets stressed but it’s how we manage it that is important. Poorly managed stressed and anxiety can cause not only psychological problems but also can impact on our immune system. This connection is called psychoneuroimmunology (PNI). PNI is the interaction between psychological processes, the immune system, endocrine system and the nervous system in the body. When we are stressed we are more prone is getting minor illnesses due to a weakened immune system. Stress can cause a flare up of eczema, muscle tension, aches pains etc. There is a significant body of research that links anger and anxiety to a greater risk of heart attacks.
There have been many studies that have looked at stress, anxiety and depression in relation to cancer survival and as a risk factor for developing cancer in the first place. Anderson et al (2008) conducted a randomised control trial comparing survival rates of breast cancer patients who had received a psychological intervention to reduce stress compared to those who hadn’t. Results indicated psychological interventions delivered as part of the study did indeed improve survival rates. Lengacher et al (2008) found patients with breast cancer who went through guided imagery and relaxation had higher natural killer cells (immune cells which kill infected and tumour cells).
Psychological factors appear to predict survival lengths for a number of different types of cancers including breast cancer, melanoma, cancer of the kidney and small-cell lung cancer. Results from a study following patients for 8 years indicated that where cancer and depression coexisted, there was an increased risk of death (Onitilo et al 2006). Mols et al (2013) found that cancer survivors who are depressed are twice as likely to die prematurely compared to those who were not depressed irrespective of the cancer site. Although there appears to be a growing body of research indicating a correlation between caner survival and psychological well-being, the results are mixed. Studies have different criteria making it very difficult at this point in time to determine the exact mechanisms at work in regards to PNI and cancer. However, the evidence does appear to suggest that psychological well-being during cancer treatment is more important than merely improving quality of life. Clearly more randomised controlled trials are needed to determine the most significant factors.
The Stockdale Paradox
With a cancer diagnosis, there may be lots of friends, relatives or health care professionals that are telling you to be positive. This I suspect may be incredibly irritating and put you under more pressure because you feel you should be positive. However, having a realistic appraisal of the situation, maintaining perspective and realising that you have a choice in how you respond can be an alternative way forward. The Stockdale Paradox is a helpful way to look at such circumstances. Admiral Jim Stockdale was a prisoner of war for 7 years in Vietnam. He was tortured on numerous occasions along with his fellow prisoners. He developed a number of different psychological survival strategies to help him and his fellow prisoners cope with the situation. Unlike most of the other prisoners, Stockdale got out of the prisoner of war camp almost completely psychologically intact and was able to carry on with his life.
“I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which in retrospect I would not trade”
He never got depressed. Perhaps you are thinking this is because he was the most optimistic. No he wasn’t and this is the paradox. The optimists kept hoping to be rescued by Christmas or Easter, but when this didn’t happen, they started to give up and as a consequence die.
“This is a very important lesson. You must never confuse faith that you will prevail in the end-which you can never afford to lose-with the discipline to confront the most brutal facts of your current reality, whatever that may be”
This is all about maintaining perspective, having an internal LOC and the belief that you can tolerate and influence situations that you face. Even if you are in a prisoner of war camp stuck in a cell, there is still a choice.
An example of someone who was able to apply this to his own life was a man called James Reck. He smoked heavily and had also just lost his wife. He went through the Thrive Programme in 6 sessions, felt better and stopped smoking. Several weeks later he was given the terrible news that he had terminal lung cancer and only 12 months to live. You are probably thinking that this would be a real set-back for him and he would start smoking again and be really depressed, however this was not what happened! He was very happy, positive and calm. James understood that the cancer was happening to him, which is of course external, but he realised that he had the coping skills to deal with this. He could control how he responded. When asked how he was coping with negative thoughts he said that he doesn’t actually create any negative thoughts and feelings! This is incredible but it is true. It is not about being blindly optimistic, believing that things will somehow magically get better. Instead it is about maintaining perspective, having a realistic appraisal of the situation, being positive that you have the skills and resources to manage your thinking affectively even in difficult circumstances.
James Reck was truly thriving despite his prognosis. He has unfortunately passed away now, but his thriving legacy lives on through his video testimonial on the Thrive Programme website: http://www.thriveprogramme.org/thrivers/
Post Traumatic Growth: Resilience and Beyond
Post traumatic growth is the notion that an individual who has been through a traumatic experience can make positive life changes as a result of this event. Resilience is about bouncing back to where you were. Post traumatic growth is about bouncing forward and fostering personal growth from a traumatic event. Individuals who experience post traumatic growth have gained a greater clarity for what is important in their life. Things in life a person may previously have thought important may now appear trivial. Post traumatic growth can help you forge stronger family relationships and change your philosophy on life. Instead of letting a traumatic events affect you in a negative way, post traumatic growth is about a re-evaluation of life, a way of looking forward, not back. You can see many new possibilities and goals. It is never the event itself, but how we process it that is crucial to our emotional well-being. The past has happened and there is nothing we can do about it, but we can change our thoughts about it now in order to move forward and make positive changes in the future. I have seen so many examples of post traumatic growth in my nursing career: families who have a child with a cancer diagnosis raising loads of money for charity by doing sporting challenges; families who have lost a child who set up charitable foundations in their name to raise money for further research and to support other families. These families have been through extremely challenging times, but despite this trauma, they are able to move forward and create something positive. Of course they will never forget what has happened and nor should they, but they are able to make a positive future.
Thriving Not Just Surviving
Having a healthy emotional response to cancer is so important but also completely achievable. Any unhelpful thinking styles and beliefs have been created by ourselves, but the great thing is that we can learn to get rid of them. Nothing is fixed, our brains are malleable and we can all learn to change our thoughts into more helpful ones. This will not only improve our quality of life but help us overcome depression, anxiety and improve our immune system and physical well-being.
Anderson, B., L., Yang, H-C., Farrar, W., Golden-Kreutz, D., Emery, C., Thornton, D., Young, D., and Carson, W. Psychological intervention improves survival for breast cancer patients: A randomized clinical trial. Cancer, Online: November 17, 2008; Print Issue Date: December 15, 2008 DOI: 10.1002/cncr.23969
Gale, C.R, Batty, G.D, and Deary, I.J (2008). ‘Locus of Control at Age 10 years and Health Outcomes and Behaviours at Age 30 Years: The 1970 British Cohort Study’. Psychosomatic Medicine, 70 397-403
Lengacher, C.A, Bennett, M.P, Gonzalez, L, Gilvary, D, Cox, C.E, Cantor, A, Jacobse, P.B, Yang, C, and Djeu, J (2008). ‘Immune responses to guided imagery during breast cancer treatment’. Biological Research Nursing, 9 (3) 205-214
Mols, F. et al. (2013), Depressive symptoms are a risk factor for all-cause mortality: results from a prospective population-based study among 3,080 cancer survivors from the PROFILES registry, Journal of Cancer Survivorship. DOI 10.1007/s11764-013-0286-6
Onitilo, A, Nietert, P.J and Egede, L.E (2006) Effects of depression on all-cause mortality in adults with cancer and differential effects by cancer site. General Hospital Psychiatry 28 (2006) 296 -402
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Sturmer, T, Hasselbach, P, and Amelang, M (2006). ‘Personality, lifestyle, and risk of cardiovascular disease and cancer: follow-up of population based cohort’. British Medical Journal BMJ, 332 (7554) 1359-1362
Blog contributed by Sue Tetley, Paediatric Oncology Nurse and Thrive Programme Consultant