The Following Tips and Suggestions May Be Helpful To You
These personal thoughts are offered by Anne Crook who is a counsellor in Psycho -Oncology working with The Christie NHS Foundation Trust
Cancer and Fatigue
Most people having treatment for cancer will experience fatigue. Fatigue is more than tiredness as people describe feeling constantly exhausted no matter how much rest they take. They find it a struggle to accomplish the daily activities that used to be so straightforward and this can lead to feeling frustrated and depressed. Family and friends are also affected and may find it difficult to understand, although children respond well when it is explained to them.
There are ways to help cope with fatigue. Explain how you feel to your healthcare team, as clearly as possible, so that they can address any medical causes and advise you on steps that you can take for yourself.
It is helpful to keep a fatigue diary. Note the times of the day when you feel better or worse and what you were doing. This will help you to plan your day with the things you really want to do and to build in rest periods. It is better to have shorter naps of 15-20 minutes rather than longer periods and to get into a good nightly sleep routine. Set realistic goals so that if you are busy on one day, plan an easier day to follow and spread your tasks out over the week. Try to include some gentle daily exercise as this has been shown to reduce fatigue - it may only be a short walk but it will help.
Stress uses up valuable energy and can make you feel more tired. It can help to use simple relaxation and breathing exercises. You can learn them at home using a CD or contact one of the valuable local support groups or charities mentioned on this website.
As with all aspects of your illness, fatigue is a very individual experience. You can find out more about coping with fatigue from the Cancerbackup booklet available on the website www.macmillan.org.uk or by calling their helpline on 0800 500 800
Cancer and Carers
Many of the family members or friends of people with cancer that I meet do not want to be described as a “carer”. They say “ I am his wife/ mother/partner and so ,of course, I am caring for him – I do not need a label”.
So I hope that you will forgive me if I say something about “carers” as a group. It is estimated that 3 out of every 5 of us in the UK will find ourselves giving unpaid care at some point in our life. Recognising oneself as a carer can be a gateway to getting help and support.
Carer’s groups are challenging healthcare professionals and policy makers to recognise the unseen contribution of carers and to address their needs. These needs range from financial help (an estimated £660 million of carer’s benefits go unclaimed each year) to practical help at home. Carers have a legal right to an assessment of their needs from social services. This may result in help with practical tasks, arranging a break from caring or adaptations to your home (carers are at risk of back injury through poor lifting skills). If you work as well, you may be able to request flexible working from your employer.
Many people don’t get the support they need because they don’t recognise the caring role they have. If you regularly provide or intend to provide care you can find out about the help available from your local carers organisation .
Carers UK free advice line on 0808 808 7777 can point you in the right direction.
Cancer and Families
There was a recent drama on TV in which Martin Clunes played a man who was diagnosed with testicular cancer. It portrayed how the illness and treatment had an impact on him and his ability to work and maintain his role as a father and husband. It also showed how every member of the family was affected. His wife tried hard to keep a brave face for him and the children but felt increasingly alone, as she could not share her fears with her husband. Their teenage daughter resented the extra expectations that she would help more at home and the eight year old son retreated into playing video games when no-one would answer his questions.
Cancer disrupts families and puts an extra strain on relationships, roles, finances and daily living. Treatment goes on for a long time and everyone needs to find ways of living with uncertainty whether it be waiting for blood counts or for bone marrow results or wondering if Mum or Dad will be out of hospital for a birthday party or wedding or the school holidays – family events that mean so much. Young peoples lives may be disrupted just as their friends head off to college or a long-awaited retirement means trips to the hospital rather than seeing the world. Life is turned upside down as everyone wonders what the future will hold.
Each family and family member will find their own way of adjusting and coping. Being able to communicate with each other about fears and anxieties helps to make those feelings more manageable. We may try to protect each other from our negative thoughts and feelings but the energy it takes to stifle such emotions can make coping much harder. Talking openly can free up energy for a more hopeful outlook. Including children in conversations (whilst giving them reassurance) will enable everyone in the family to feel supported in facing the challenges ahead.
Cancer and Couples
“My husband has cancer and I have cancer too” This was how it felt for one woman when she talked about how cancer affected her relationship with her partner and their life together. Living with cancer is a challenge to any relationship. It is like an uninvited and unwelcome visitor that has moved into the family home. It cannot be ignored and must somehow be incorporated into the couples lives.
One of the most difficult challenges is that the illness gives each partner a new role that neither wants - as patient or as carer-giver and it can feel lonely. Sometimes you may not want to burden each other with your problems but if you can find ways of working together as a team, you can face the challenges together.
The threat of loss can feel like a dark cloud that hovers in the background. It is natural that feelings and emotions run high and we can feel stretched to breaking point. Try to be honest about your fears and feelings with each other. You may also need to make allowances for the times when your partner is more inward-looking. You are not being disloyal if you talk to a friend or counsellor at these times.
An aspect of close relationships that often suffers is that of physical intimacy. Treatment side-effects and the stress of illness may bring loss of sexual interest or ability. Many of us find it embarrassing to talk about sexual matters but physical intimacy is too important to let modesty stand in the way of finding solutions. Do talk to a healthcare professional about this.
And remember to put time aside to keep some of the positive things going that are nothing to do with illness- an activity, a treat or a conversation that reminds you both of your life together without cancer.
Talking to Your Children
Some years ago I attended some training about supporting children when a parent has a serious illness. I was very moved by a video interview with a nine year old boy taking about his own experience. He described how scary it was to sense that something was going on with his Mum but no-one told him about it. He felt he could not ask and so imagined that the situation was much worse that it actually was. Parents naturally want to protect children from upset and pain and there may be a temptation not to say anything. But children soon pick up when something is going on and it’s generally better to involve them from the beginning.
You know your children best and your instincts will guide you on when, how and what to tell them. Be honest, use language that they understand and give them information at their own pace. Young children will often change the subject and come back to it in their own time. Be prepared for frank questions at unexpected times. Children sometimes imagine that they have caused an illness by being naughty or that they may catch it themselves so help them to talk about their fears. Cancer can be a frightening word. We can take away some fear by using the word freely and knowledgeably and with the reassurance that more and more people respond to treatment and live with the illness. We cannot protect children from feeling sad or worried but they can feel supported if we keep them informed and help them to feel involved.
Cancerbackup and Macmillan Cancer Support publish booklets with ideas and advice about talking to children (0800 500 800) and your healthcare professional will be able to support you. Macmillan have a telephone support Youthline (0808 808 0800) and there is a website for 12-16yr olds at www.riprap.org.uk