Living with Kidney Cancer: Managing the Psychological Challenges Dr Chris Hewitt Consultant Clinical Psychologist Beatson West of Scotland Cancer Centre
What influences how we cope with cancer? Treatment received type of nephrectomy, possible need for dialysis, cryotherapy/ablation, biological (targeted) therapies. Managing side-effects. Health Beliefs and Coping Style. Support availability Satisfaction with support and information. Stage of treatment/recovery. Age at diagnosis and Life Stage. Fertility, employment, education, dependents i.e. elderly relatives/children, financial situation, other health problems.
What kind of emotions are experienced? Fear, uncertainty, worry, anxiety (fear of recurrence/progression). Low mood, sadness, irritability, depression. Anger, resentment, frustration, guilt. Shock, numbness, disbelief, adjustment. Loneliness, isolation, avoidance, lost. Body image, sexual relationship, confidence. Memory, concentration and dual tasking.
What are the signs of anxiety to look out for? Muscular tension Palpitations Tearfulness Pins and needles Appetite change Butterflies in your stomach Sweating Dizziness Irritability
Anxiety Beware of the internet! Beware of statistics Beware of other people s stories Beware of fortune telling Beware of shoulds and oughts Gentle exercise Spend time with supportive friends Maintain structure activities you enjoy Relaxation exercises
Managing Anxiety Different components to anxiety i.e. physical, psychological and behavioural. Physical Relaxation, includes muscular relaxation, imagery/visualisation, hypnotherapy, massage Controlled breathing techniques Listening to music, TV, walking etc.
Managing Anxiety Cont Psychological Looking at beliefs and interpretations of situations e.g. mind reading, fortune telling or black or white thinking. Questions to ask yourself: - What am I basing these beliefs on? - What triggered them? - What would an alternative explanation be? - Do I need more information? Am I making assumptions? - Are there things I can do right now that will help?
Managing Anxiety Cont. Behavioural - Excessive internet searching - Excessive reassurance seeking - Withdrawl/avoidance Recognition of behaviour how helpful is it? Regaining confidence in own ability and judgements vigilence vs hypervigilence. Maintaining activity build this up gradually Are you behaving as if your worries are facts?
Low Mood Activity Planning small achievable tasks each day Treat yourself! Physical activity Break down tasks into manageable chunks Your thinking and feelings are often associated with your thoughts worst case scenario thinking. Is this helpful/realistic?
Managing Depression Physical Maintain activity small, achievable (and pleasurable) goals Keep record if this helps Be realistic with yourself Maintain control over aspects of your life Maintain regular sleep/wake cycles
Access the information and support that suits you leaflets, internet, support groups, CNS, consultant, counsellor, psychologist. Try to talk over events, conversations, feelings, thoughts that are worrying you. See people you want to see. Try and keep up with your interests/hobbies. Be realistic with your expectations.
Coping Strategies No right way to adjust. Likely to have good days and bad days. Develop good communication with your healthcare team let them know about problems. You don t have to put up with it. Can help you to feel that you are more in control and part of team. Prepare list of questions Access to good quality information Let others help practical and emotional. Support groups can be helpful for some. Adjustment of plans to accommodate chronic illness how to live as full a life as possible Look after yourself Give yourself time takes a while to adjust to new set of circumstances
What to say, how to respond, how to help..? Don t underestimate listening. Shows you understand rather than trying to just reassure. You don t have to offer solutions. Encourage to talk. Person who is anxious/depressed can be difficult to help argumentative, irritable, withdrawn, demotivated.
Changed and additional roles and responsibilities Little time for other relationships Neglecting own needs health, nutrition, exercise Isolation Managing medical situation multiple hospital appointments, communicating with staff, relatives, organising medication. Managing physical care Generally less likely than patients to disclose their concerns/difficulties.
Informal supports Mutual patient/partner support Communication openness and honesty can t be everything to everyone Accept help from others Avoidance coping generally unhelpful alcohol, keeping how feel from others Make time for break, treats, friends, Information needs know what to expect
Resilience and Coping Many people demonstrate great resilience through cancer treatment. Support of (and for) partner, family, friends Peer supports formal and informal Mental attitude how threats are perceived Activity and routine/structure Good quality information Decision supports Medical and nursing team Stress buffers
When to ask for help It s not normal to be depressed or struggle long term with anxiety help is available i.e. you don t just need to accept it. Not a sign of weakness! If you feel that it is affecting your quality of life and having a significant impact on day to day life speak about it!
Where to ask for help Family and Friends CNS Oncologist Church/Spiritual Group Voluntary agencies Kidney Cancer Scotland, Macmillan, Maggie s, Cancer Support Scotland, Other patients Counselling/Psychology GP
Useful Websites http://www.jameswhalefund.org/scotland/ www.macmillan.org.uk www.getselfhelp.co.uk www.moodcafe.co.uk www.glasgowsteps.com
The treatments for kidney cancers are improving all the time. Increasing awareness of the critical role that family/carers play. Most patients and carers cope well with the support of family, friends and staff. A number of patients and carers experience particular difficulties and can benefit from specialist help.