In his book, The Emperor of All Maladies, Siddhartha Mukherjee, remembers how, during his rotation in a medical oncology clinic, he would experience his patients as a surrogate family. He laments that he would spend hours and days with his patients, and because of the nature of their illness, they would sometimes die. Mukherjee explained that every physician has to handle grief differently, but I got the feeling from reading his work that he never got used to losing people he cared for.
These are just the reflections of an oncologist who cares enough about his patients to get close to them. Imagine what it's like when a family member discloses that she has cancer. Or maybe you already know. And you're here because someone you love has recently received a diagnosis.
How can families support cancer patients?
This is a good time for us to stop and let you know about an incredible organization in town called The Flatwater Foundation. The Flatwater Foundation is an organization that pays for the cost of mental healthcare for cancer patients and their families.
In our work with Flatwater, we've experienced some of the most powerful therapeutic conversations we could have imagined. We've witnessed clients grow and change as they endure invasive cancer treatments, we've watched families struggle and thrive as they learn to live with cancer and we've lost clients to cancer, which has caused us to throw typical counseling conventions out the window when it comes to dealing with our own losses.
There's no way around it. When a family member receives a cancer diagnosis, any cancer diagnosis, it's enough to shake the foundation of safety that many families enjoy. Patients are in shock. They're thinking about their own mortality for perhaps the first time. Families jump into action mode and start treatment planning before the patient may be ready.
No one knows what to do because there's no script.
In our experiences working with families, the first thing we do is "hold space" for whatever is in the moment without getting too far in the future. What this means is that we make sure the patient has the space to grieve, despair, be fearful or even question his own treatment. This is often quite difficult for family members who identify with a caregiver role out of their own anxiety and fear because their loved one isn't taking as much initiative in their own recovery as the family member would like.
But patients work on their own timing. And as therapists, we encourage family members to let patients work through their own decisions and attitudes as they feel is most appropriate. We usually find that patients settle into a resolve for their own health in their own time.
So how do families cope with cancer?
When patients are in this place of uncertainty about what they should do, how they should participate in their own treatment, or whether they think they'll survive, it leaves families feeling powerless. It's at this point that we suggest a strong self-care practice that can help family members wait on their loved one's timing while also feeling like they're doing something.
There's no way to ask family members not to do research, not to look for alternative treatments, not to find support groups or be proactive. But what families may consider is that they withhold that information from their loved one until she's ready to receive it. There's an emotional and mental experience that a patient is going through that you can only truly understand if you've experienced it yourself. It needs it's own schedule.
And you need to feel empowered. So do your research, seek your own caregiver support groups, find organizations like Flatwater, change your family's diet, seek alternative treatments and talk extensively to your physician, oncologist and nursing staff. Just be prepared to wait on your loved one to catch up when they're ready.
How can families fight cancer together?
When we see new clients, one of the paradoxes we have to prepare for is that clients sometimes resist their own change, or at least they feel ambivalent about it. Ambivalence is what it feels like when you're uncertain about a decision. As therapists, we struggle not to work harder than our clients. We wait on their timing and respect their ambivalence. When we push harder than clients are ready to be pushed, we usually lose them.
In this same way, families can fight cancer together by openly communicating about where each person is. Don't be surprised if you find anger as well as grief and fear. Don't be surprised to find that children worry about their parents for the first time, which may be a new experience for them.
Children need the opportunity to be afraid for their parent's life. They need to know that their fear is acceptable, that they don't have to be strong, that they can cry and that everything may actually not turn out alright. Patients need the same.
In the middle part of my years as a new therapist, I held a "caregiver support group" for family members of cancer patients. One of the things that group taught me was that it wasn't fair to assume that family members of patients were the only caregivers. As it turns out, a cancer diagnosis doesn't steal away a patient's desire to care for others also.
In fact, one of the most empowering thing a family member can do for a patient is let the patient take care of them.
This will allow your loved one to feel competent and useful. It will help them feel like they have a role to play and will temporarily relieve them of thinking so much about their illness, the next round of chemo or possibly their own mortality. Caring for another relieves the patient of the patient identity.
In our next caregivers group, I think we'll invite both patients and their families to honor the role that families play in supporting each other when one person has a diagnosis. It's a shared experience of illness anyway.
Because when one family member has cancer, its an experience everyone endures.