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 it comes to boundary setting, social media has complicated that. I’ve heard many stories of family members and friends posting things like pictures of the patient when he or she is very sick on Facebook or other platforms before knowing the patient’s wishes.
Cobie: That’s where I think people should really ask themselves: “Should I be doing this, will this help my loved one?” If they aren’t sure, they should just not do it, or at least ask first. The first rule should always be to try and respect the needs and wants of the person who is ill.
Kate: Then there are those who blame the victim, particularly if the cancer patient did make imperfect health decision – like smoking – before diagnosis. Do you have thoughts about ways people can handle this, and maybe even handle their own feelings of guilt about being imperfect?
Cobie: When it comes to blaming the victim, for example with a lung cancer patient when smoking is linked to their kind of cancer – what I always tell people is that their mind may never find the answer that it seeks about what caused this illness, but that you can and will move forward none-the-less. And no matter how you ended up here, there’s no use in tormenting yourself and there’s no excuse for others tormenting you. When people blame the victim, they are usually just trying to comfort themselves by creating a reason why bad things happen to people, to make themselves feel safer. Unfortunately, cancer is something that can happen to anyone, and does happen to a third of the human population. Personally, I always say “I’m not a cancer survivor yet” because I know the odds, and cancer can, and often does, happen to anyone.
Kate: And sometimes, I think a big portion of our hurt is for each other. We protect each other from our own fear of loss, of death. As loved ones, sometimes we protect the patient – and that can be great – offering faith in the patient’s ability to heal. On the other hand, you don’t want to make a patient feel like they can’t express their fears. And sometimes I think the patient does suppress their own fears and emotions to protect their loved ones, particularly those who are very close. I know we protected each other when my brother was sick. Some of that was good, and some of it may have been too much. That’s a different challenge to the caregiver relationship.
Cobie: Yes, we call that buffering. There’s a lot to be said about that, and this is turning into a master’s thesis (smiles), but yes, that’s a challenge. And there’s a big difference between denial and suppression. Denial is unhealthy; suppression is how you go on living your life with cancer. You never forget you have cancer, but that doesn’t mean you want to talk about it and think about it every minute. That elephant is always in the room, the sword is always over your head. It doesn’t mean you want to always dwell on it.
On the other hand, once, when I was a first-year graduate student, I visited a friend whose mother had breast cancer and father had very advanced colon cancer. At one point, everyone left the room and I was alone with the man. As soon as everyone was gone, he immediately grabbed my arm, urgently, and said “I am dying and no one will talk to me about it.” His family wasn’t up to it. They just weren’t able to do what he needed at that time. In those kinds of circumstances, I think it’s good to reach out beyond the immediate family, to go to counselors, survivor groups etc.
Kate: In my family’s experience, I realized that sometimes this protecting, buffering, came into play when it came to medical information. Like, for example, if the patient doesn’t want to know ‘average’ survival rates, but the caregiver does.
The head of my brother’s team said something really wise once, which was “I tell patients the truth when they ask. If they don’t ask, and it isn’t medically necessary to know, I don’t tell, but what to ask is the patient’s choice.” She even suggested to other members of the family that my brother should be allowed to ask his own questions, and that if they had more desire to know than he did, they could ask her questions in private.
Cobie: That’s great (nodding). I do believe information is power, but different people have very different needs for information, and there are some people that don’t want to know everything. When it comes to this issue, the important thing is to listen to the patient and know how to serve them. As a caregiver, partner, friend, it’s also important to know what your own limits are. You have to know what you can handle as well.
But yes, it’s not appropriate to ask for medically non-relevant information that the patient doesn’t want to hear about.
On the other hand, some people with cancer want to know everything, all the statistics etc. Some people will even do themselves harm by reading bad information on the internet. And if a patient is someone who likes to be as informed as much as possible, down to the details and statistics, it’s important to make sure you know what the best resources for information are, and not getting led astray by subpar information.
And, if you are designated as someone who has a right to the patient’s medical information, if they legally okay that, then you have a right to know, but that’s not synonymous with telling the patient everything you learn or asking questions that aren’t necessary for their care while they are in the room.
Kate: Despite all these pitfalls, and the physical and emotional pain of cancer, there are times when it almost seems like an opportunity to live better, or to discover a new kind of intimacy with each other. I feel like my family may have gotten closer during and after Nick’s treatment. What are your thoughts about that?
Cobie: I find that absolutely to be true in many cases. The term I came up with for that is “accelerated authenticity”. When people are together acting out of real empathy and love for each other – not just pity or self-interest – this time can be an opportunity for immensely authentic relationships. Cancer, in addition to fear and pain, can be a wonderful door to intimacy and a deeper life.
On the other hand, many cancer patients report feeling very lonely.
Kate: And in some ways they are alone in what they are going through.
Cobie: Yes. But real authentic connections can help with that. For people who are feeling alone and not getting what they need emotionally – recognizing the problem and getting help is very important. Emotional hurt is like medical hurt. It’s real.
Another thing to realize is that people are very different, their needs are different, how they react to grief is different. Even the ‘stages of grief’ have never really been documented. Elisabeth Kübler-Ross recanted that on her deathbed. There are a ton of factors that determine to how you cope with a cancer diagnosis. A great prognosis doesn’t mean you worry less – people are just that different. That’s part of why the individual patient’s needs and wishes must be listened to, seen as unique, always considered.
After our talk, Cobie shared a good link regarding relationships after a cancer diagnosis:
