The following is a series of short Q & A discussions between Kate Ballantyne, a member of our public relations department, and Cobie Whitten, PhD about relationships and cancer. Cobie Whitten has a doctorate in Clinical Psychology from the University of Illinois at Urbana-Champaign and is a Psycho-Oncology Consultant for the Providence Regional Cancer System. Cobie is also a faculty member at Harmony Hill Retreat Center and co-chairs the Survivorship, Palliative Care and End-of-Life Issues Taskforce of Washington CARES About Cancer. Her passion is creating survivorship services for cancer patients and their families at all points along the cancer continuum.
Kate: When my brother was ill, everyone’s role was different. My mother was really the day-to-day nurturer, advocate and care coordinator. My stepfather was great about guiding my brother toward holding on to his identity as someone other than a cancer patient through the process. At times, I think, my brother could use his friends and me as an outlet to share some emotions that he may have worried would burden our parents. My father and stepmother did the work of financial advocates, handling almost the full-time work of insurance authorization follow-ups, charity care applications, bills and much more.
I’m not sure we would have been able to guess what everyone’s role would be. There was also a lot of negotiation in this process, in that my brother sometimes had to tell people how he wanted to be cared-for. Sometimes he had to say when he wanted to talk about the cancer and when he didn’t want to think about it, when he needed to be alone vs. with others.
We were all imperfect, but I think his ability to assert himself helped him get what he needed. Setting boundaries and saying no was sometimes part of the process – for example, ‘please don’t visit now, I need to sleep.’ Not everyone was equally respectful of his boundaries. What do you think about these negotiations with loved ones?
Cobie: In that initial diagnosis and treatment, it really should be all about you. Not in a ‘now you have permission to be difficult’ way, but where you feel empowered to be very clear about what your needs are and are not.
I’d like to wave my Jewish mother wand over newly-diagnosed individuals so they feel they can say what they want – and what they don’t want. It doesn’t help to expect people to be mind readers.
And being assertive can help when it comes to defining people’s roles. Maybe your spouse or best friend or grown child isn’t the best person to act as your primary care advocate, but maybe they are great at fixing the car, cleaning, paying bills, working in the yard etc. There are a lot of roles for people to take. Your feelings can help guide you to what you want from people.
And, sometimes, you may end up going outside of your immediate network of loved ones to get what you need – to therapists, spiritual leaders, support groups. The person you want by your side when you’re feeling very sick may not be the same person you want to pay your bills or build a wheelchair ramp, for example. There’s plenty of ways for people to help.
If someone told you twenty years ago that you would have cancer, you may have thought a certain person would surely be in the boat with you, but it may actually turn out that person isn’t a primary caregiver, or present it all. It may surprise you who is most important in your journey – people you never would have guessed would be there might turn out to be angels in that journey. Not everyone has the emotional skills to truly be there for you – some people may just be too scared. And some people may help in different ways than you would have expected.
Having an advocate who can help coordinate other helpers is great too. Some online resources for coordinating helpers are CaringBridge (www.caringbridge.org). Sites like this can help with meal planning, giving healthcare updates to groups of people, chores and also caregiver support. Another one of these sites is lotsahelpinghands. (www.lotsahelpinghands.com).
The theme here is asking for what you want and getting to set your own boundaries – you are the emperor or empress now, with the help of your advocate. And it is important to remember that sometimes you might want to say no. Dave Balch, author of Cancer for Two says ‘surround yourself with people who give you joy and love.’ If you are traditionally a pleaser, try to remember now is not the time to feel like you always need to please others. Once, on Oprah I heard (Maya Angelou or Toni Morrison?) said it was helpful to “think about how you feel after you’ve interacted with someone, and that should be your guide about whether you want to interact with them more.”