by Anne Gallagher
Do you share everything about your cancer diagnosis with your family and friends? And if you do, do you do it right away?
I have been accused of withholding information in the past from my loved ones about my lung cancer. When it comes to communicating with family and friends about my cancer diagnosis, I feel strongly that it’s up to me how and when the information is disseminated.
Some people need time to process. I am the type of person who needs to mull over information and digest it before I can reasonably talk about it with another person. For years I did keep information somewhat hidden and only gave out small amounts of information because I thought I was protecting them. What I have come to realize is that I was protecting myself.
It was very difficult for me to watch my family and friends experience the information that I was giving to them so instead I limited that information. The more emotional I knew the person would be, the harder it was for me to share openly with them.
Communicating with family members and friends can be a tricky situation. Not only is the patient dealing with the information about themselves, but they are dealing with the emotions of their support system.
As a Patient Navigator I will frequently see patients choose wisely who they bring with them to a consultation. They may not bring the child who is the most emotionally fragile, or the person who may be a distraction rather than a support. While it is important to have that second set of ears in the room, make sure that it is someone who can write down good information without being too distracted by the news.
I encourage patients to have at least one person in their life that they can be really honest with. I don’t care if it is a spouse, long-time friend, or even a therapist; patients need one person that they can say how much this really stinks to. I know that family members and friends just want to be helpful but letting the patient guide the communication is an important piece to being helpful.
Patients also need a gatekeeper for information and the information that is being shared. It might be a person designated this responsibility or one of many websites that are designed to communicate information for patients. I especially like Caringbridge.org or Mylifeline.org. Both of these websites allow you to journal what is going on and then your family and friends sign up to receive a notification when something new is written. This allows a great number of people to get information without the patient getting many phone calls and stops patients from having to tell the same story over and over. Not only is this a private way of communicating but friends and family can leave messages to the patient and those little notes can be very uplifting during difficult times. Many patients use Facebook to communicate and creating a closed group is another option.
Most patients receive offers of help, especially early on in a diagnosis. As a new patient it is hard to know what to ask for and it is also hard to swallow that little bit of pride and independence and ask for help. I find that people really do want to help but they need very specific requests. It is our responsibility as patients to say exactly what we need. Sometimes that means a specific task like a meal for a night, childcare, or a ride to treatment. Sometimes it means saying that I just need someone to listen to me or even give me some space. There are great sites like lotsahelpinghands.com or mealtrain.com in which patients can list specific needs and friends and family can sign up for duties or to bring meals. These duties can even be coordinated by another person so the patient can focus on their treatment.
Communicating throughout a cancer experience can be difficult but there are tools that can help. Always keep in mind that all parties involved are hearing the information with their own set of circumstances and with their own emotional abilities. Sometimes family or friends do not behave or communicate how we expect them to in this situation. Honesty and forgiveness go a long way in this area.
Communication is the key to getting through this process. So keep those lines of communication open as much as possible.
If you need help communicating with your caregivers and family members, visit LUNGevity’s Caregiver Resource Center for resources and suggestions. Post your ideas, tips and suggestions below.
**You can see Anne at the 2013 LUNGevity HOPE Summit in Washington DC where she will be speaking on a panel about Surviving with Cancer.