The Cancer Directory. Dr. Daniel Rosy
state. But it is a mistake to assume that, because you have a close partner or family, you have a support network.
Those closest to you will be going through their own reactions and, quite often, distress ricochets around families like a ball in a pinball machine. You may feel you are able to offload your feelings, but find, later on in the day or week, that they come bouncing back to you in the form of a marital row or a sick child. It is therefore good to form a group of six to eight friends who are ‘signed up’ members of your personal support group who can pledge to be there for you in times of need. You may wish to have your support group meet once a month at your home to hear about what you are up to and what your needs will be in the forthcoming month. This will help them as well as you.
At first, this might feel like an embarrassing thing to do – to concentrate so much focus and attention on yourself. However, you are giving people an opportunity to express their care and love, and it is likely that they will find this very rewarding. You will also find that being clear and articulating your needs gets easier as time goes by. In so doing, you will be providing a tremendously healthy model for your friends and family to follow in their own lives. It doesn’t all have to be a one-way street either. You may choose to structure the support group so that everyone in it has a chance to express their feelings and ask for the support they need from the group each month. You will probably find this empowering as, although there may be some areas in which you are very vulnerable and needy, there will be others in which you are strong and able to give good-quality support to others.
Veronica’s Story
Before you become concerned about ‘being a burden’, read Veronica’s story below. In the 1980s, she changed her ‘three months to live’ with liver cancer secondary to a melanoma into more than nine years, living to see her children leave school. When she realized that her friends avoided telephoning her in the weeks following her diagnosis, perhaps through embarrassment or a lack of knowing how to help, she sent out this ‘round-robin’ letter:
Dear Friend,
Yes, I have cancer.
Yes, I have been told I have only three months left to live – but actually I AM STILL HERE and I need help!
If you would like to help me, the things I need or would really like are:
1. Flowers every week to cheer me up
2. My organic vegetables picked up each week
3. Money for my holistic therapy
4. Any information any of you can find out about alternative treatment for cancer, anywhere in the world
5. My children taken out while I meditate and visualize
6. A holiday in the Bahamas …
and on to a total of 20 wishes.
All 20 of Veronica’s needs and wishes were met, and she received letters filled with love and gratitude – such as:
Thank God you told us what you needed. We really wanted to help, but we had no idea what to do for the best.
Perhaps there are many people around you in your family, social and work circles who feel just like Veronica’s friends did, and who would be relieved if you would let them know how they could best help you! Let the people who care about you know exactly what help you need. Be specific about your needs, but do not get upset if they say no this time.
Mapping Out Your Personal Support Network
Think now about the family members, friends and colleagues who may be able to help support you now and in the future.
Setting Up Your Personal Support Group
• Ask yourself whether you want (or want supporters) to set up a personal support group.
• If the answer is yes, think about which of your friends you would like to invite to be part of this support group.
• Contact these friends and invite them to join the group.
Suggested guidelines for a personal support group
Below is a set of guidelines on which you could run your support group. Read out or send a copy of these guidelines to all the members of your personal support group.
A Framework for Setting Up a Personal Support Group
A personal support group is being set up by ________________.
I have cancer, and need ongoing emotional support and a ready source of practical help at times of crisis. I will also be very happy to provide support for other group members when I am able to do so, but this may not be possible all the time, and will depend on the demands of this illness and its treatment. I would like to invite you to join the group. Please think about the following suggestions for how the group will be run before saying ‘yes’ to joining. Perhaps you will want to make some suggestions of your own, too? I believe that:
• The group should ideally comprise a minimum of six people besides me, who are not themselves seriously ill at this time. It can include family members, but there should be as many or more non-family members if possible.
• The group members should be able to spare at least two hours every month to come to a group meeting, and have some extra time free each month to provide some care or practical help as needed.
• Ideally, none of this group should be involved with me professionally so that there is no risk of breaking confidentiality or compromising their professionalism.
• At each meeting, it is recommended that each person in the group take 10 minutes – entirely uninterrupted – to tell the others first how they feel, what they are having to deal with and then the support they would ideally like in the following month. The voicing of the support required is not necessarily an active request so much as an opportunity for each person to formulate and voice their needs.
• The time taken by each group member can be lengthened or shortened, depending on the time available and the group members wishes – even three minutes each can be highly effective.
• If possible, members should try hard not to jump in and try to ‘fix’ the way someone is feeling with practical solutions or advice, as this may shut them down emotionally, stopping them from having a good cry or rant. A great deal of the value of the group will be in supporting each other to express our feelings, and its effectiveness will depend greatly on the ability of the group to sit and bear witness to the others’ distress without trying to make them feel better immediately. It is important to think about whether this is possible for you.
• It will be important to keep the group to time. It can be helpful to pass a watch around to be held by the person talking, or for one person to keep time and gently ring a small cymbal or bell when the time is up.
• After the initial go around the group (which will take about an hour for six people), we can then move into practical mode, looking at the practical possibilities for the group to offer each other help in the forthcoming month.
As you prepare for and go through treatment, and then embark upon your recovery process, your wider support network will then also include the holistic therapists you take on to help you.
Your support network will give you great security as the days go by and, even if not needed all the time, will give you a tremendous resource to call