Providing support and advice
Being told you have a GI cancer leads to a wide range of reactions in different people. Many people have strong emotional and psychological responses to cancer and its’ treatment. There can be fear, anger, fatigue and anxiety, sometimes lasting longer than the disease or treatment.
After being diagnosed, a period of sadness is normal combined with concern about your family and well-being. You may worry about financial or legal matters, or about your body image, work, hobbies and social life. In many cases, good listening and support may be all that is needed.
But if this sadness continues and seems to overwhelm you, it may be sign of depression. It may be hard to tell whether symptoms like loss of sleep or appetite, fatigue, pain or low moods are because of the cancer or because of depression, or both. Longer-lasting symptoms of this kind, and particularly thoughts of suicide, are indicators of depression.
You may need medical or community help to deal with this. Ask for advice from your medical team who can refer you to specialist psychologists, or point you to sources of information. This is a good time to ensure your financial matters and Will are up to date.
- Dealing with depression and anxiety
For the main carer and family, sometimes being a sympathetic listener may be enough to help a loved one through the first stages of sadness and adjustment. If the person with the cancer doesn’t seem to find relief, you may need to ask for help from your medical team. They may be able to come up with strategies to improve a sense of control and reduce the sense of helplessness. Otherwise resources and organisations are listed below.
‘My mother has a saying, life will give you rain drops, then it will give you hail, then it will give you bricks. Cancer was bricks for me. And when you get given bricks, you have to throw them back’.
Jan Robinson, GI Cancer Survivor.
Going through cancer can have lasting impacts on the mind and emotions of both yourself and the family. Whatever the outcome, anxiety, depression, fatigue and fear of recurrence can last for a long time afterwards. It is important to acknowledge this and for carers to be patient and supportive. However for others it is a time to re-evaluate life and put in positive changes to ensure life is enhanced.
Useful resources and websites:
www.gutcancer.org.nz go to resources for personal stories
http://lifepaths.co.nz/book.html for the book Life, Happiness…& Cancer.
- How to support someone with GI cancer
A diagnosis of cancer can be a shock for the person concerned as well as family and friends. It may take time for the person to accept the news and be ready to talk.
Support may come from family, friends, health professionals, and / or special support services. For the main carer, family and supporters, it’s important to be positive and sensitive to the feelings of the person with the cancer. There can’t be too much understanding and love; though sometimes a person with cancer may not want to be over-whelmed or pitied.
As new screening programs and better treatments develop, many of them thanks to clinical trials, more people are surviving GI cancers.
Whether you’re someone with a GI cancer, or supporting someone with it, try to inform yourself and your family about its’ symptoms, treatments, new research and ways of coping.
People are always helpful with advice and not everything you hear or read will apply. New trials may apply to some cancer types but not others. Keep discussing what you hear or read with your medical team.
- Supporting the main carer
The spouse, partner or other main carer for a person with GI cancer can sometimes try to take the whole weight of the illness on their shoulders. The main carer can also suffer fear, fatigue, confusion and other effects while trying to keep up responsibilities to a family, work or other commitments.
Having a family member with GI cancer may mean changes to the family routines, especially to make sure no single person is left carrying the whole burden. Kids can take on extra chores and help prepare simple healthy meals. Friends and neighbours can help relieve the load with shopping and transport. People want to help and feel useful. Keep in touch with your GP and practice nurse and ask for support if required.
Helpful tip: Send out a weekly email update to all concerned outlining how the person and carer are coping. Outline dates and times you require help, what support is required and thank everyone for their concern while requesting calls be kept to a certain time of the day.
People often feel very abandoned once they complete their last treatment for their GI cancer. At this time it is important to put in place strategies to cope and engage with other support services. Click on Anne's story to hear view her video.
This can offer a good chance for all members of the family to work through their emotions and problems. Ask your medical team to refer you to family counselling services or contact your local cancer society.
- Supporting the family
Talking with the family:
A cancer diagnosis in the family can cause many emotional responses in children, some of them unexpected.
Both adults and children can and do learn to cope with cancer and its treatments.
Some general suggestions:
● Don’t hide the truth from children. It is best they find out from you in a sensitive way rather than in some other way might lead to far worse imaginings
● Give them straight forward, truthful information, without too much detail all at once, in words they can understand appropriate to their age
● Use some basic cancer terms and explain what they mean
● Be balanced, encourage facing the negative but working on the positive
● Be prepared to cope with a range of reactions from children. Seek professional help if needed
● Give children plenty of chances to ask questions, have them answered, and to express their feelings
● Don’t be afraid to say “I don’t know”
● Weekly family meetings are a good way to manage anxiety that can build up and provide an opportunity for all family members to air their concerns and have them addressed
● Keep your children informed, involved and able to feel they’re being useful
Children are exposed to a lot of information about illness and health: from peer, social media and the internet, TV or elsewhere. Not all of this information is accurate! Ask your children what they have heard and talk to them about cancer, pointing out reliable sources of information.
They may want to know about effects of the cancer, side-effects of treatment, likely changes to family plans or routines, and the long term outlook. They need to know enough to deal with their own fears and still be able to get on with things at home, at school and with their friends. Inform the school of the situation so they can offer support when required.
Changes at home:
Having a family member with cancer can change some roles and responsibilities in the home. By taking some of the responsibilities, children can feel they are doing something to help; preparing healthy meals or doing extra chores. This can help them counter feeling powerless. Preparing healthy meals can be a good way of educating children about the importance of health eating for their future!