Patient navigator, Alice Banze, gives advice on how to include your family in your cancer journey.
Changes that come with cancer
The physical impact of a cancer diagnosis and its treatment is known to affect the patient. It’s frequently overlooked that the cancer journey affects both the patient and family emotionally.
The common physical changes expected may include hair loss, skin changes, appetite loss, changes in smell/taste, nausea, vomiting, changes in sleep patterns, and poor concentration.
The main physical changes that may be worrisome are physcial pain and extreme tiredness (fatigue). The pain can be caused by the growth of a tumour, side effects of chemotherapy and radiation or pain associated with surgery.
Tiredness may start with the development of cancer and can continue through treatment and long after treatment is completed.
You might discuss these changes with your immediate caregivers but not necessarily with all your family members. This depends on your culture and the ages of family members. Children are often the ones that are left behind when big discussions are taking place.
The reality of emotions
Cancer is an individualised journey. It affects people differently. Once diagnosed, the anticipatory grief sets in. It could be directed to loss of life, loss of income, poor health or poor social life.
A series of emotions like fear, guilt,sadness, frustration, worry, anger, lack of control and uncertainty follows. Then emotional stress can add to the existing fatigue.
Each family member grieves differently, more so, it may be overwhelming for them to see you in pain, knowing they aren’t able to help.
The reality of a cancer diagnosis is that it doesn’t stop life events. You continue to fulfil your role in your workplace, family and in society at large. Plus, your family members have to continue with their lives.
Just as the medical team plays a role in the management of your cancer, so does family. It’s important to talk to them as soon as possible after your diagnosis. Your oncology navigator can discuss various ways to include your family.
HERE ARE SOME SUGGESTIONS:
Communication with family is the first step in family involvement. Often patients aren’t able to indicate family medical history because they were never included in family discussions when they were children.
Holding a family meeting is a very good way as it opens doors for meaningful communication and creates a space for everyone to voice their fears.
This meeting can be done in the comfort of your home where you discuss family business (routine issues, family plans and decisions).
Your oncology navigator can guide you to find a way and locate a psychosocial team to assist you further with your plans.
Include your children
Let them be the one to tell you if the commitment is too much. Remember that you’re your children’s first and most important teacher. So, teaching them about your cancer will make them feel confident in taking part in caring for you.
Smaller children may participate in reading stories to you. They may want to spend time next to you in bed or watch a TV programme together.
You may anticipate the days that you will feel tired and sick and be able to plan activities when you feel better.
A different approach will be applied when teaching older children as they might understand more. Your oncology navigator can assist if you need more information. Your spouse will form part of the older children’s discussion.
Include your spouse
Talk around intimacy is to be initiated between you and your spouse
Building of trust and empathy
The advantage of making your cancer journey a family affair is the foundation of building trust and empathy between family members.
Family meetings provide an opportunity for members to express their fears and share the load. It also creates an opportunity to introduce the oncology navigator to the family.
Keep in mind that an oncology navigator will help increase, reinforce and encourage meaningful communication between family members and the medical team.
The teaching of cancer will be dealt with in-depth and your family will feel the sense of partnership.
Speak to an oncology navigator regarding communication of your cancer with your loved ones. Remember you don’t have to walk this journey alone.
MEET OUR EXPERT – Alice Banze
Alice Banze is a nurse navigator at Netcare. She is an oncology trained professional nurse and a former bone marrow transplant coordinator. She is also a member of Academy of Oncology Nurse and Patient Navigators (AONN).