Confronting one’s death creates a deeper appreciation of life

Have you ever been in a large room full of people and felt completely alone? Cancer patients sometimes feel this way in their own families. To those unfamiliar with cancer, this must seem so strange, but hundreds of patients and caregivers have reported this to me. The disease of cancer is very isolating, and certain dynamics and communication styles in families can ironically enhance the loneliness a cancer patient feels. Sometimes families don’t realize that they are not being as helpful as they could be. Many patients and family members have reported to me that being the caregiver is more difficult emotionally than being the one with cancer. A sweet patient put it so well when she told me, “At least I (the patient) am doing something about the disease by having chemo, getting radiation, going to appointments etc. My husband can only watch, and he feels powerless.”

Below are a few challenging family dynamics that have repeatedly shown up in my practice. If you see your family in one of them, there is hope for you! There are action steps you can take to improve how you communicate with your loved one listed at the end.

1. We must be positive all the time.
   Some families refuse to allow themselves or the patient to utter any so-called negative words or thoughts regarding the illness as they fear it will somehow bring it into being. They believe that the power of totally positive thinking (which many big thinkers call the tyranny of positive thinking) somehow enhances survival odds. But this notion is fantasy, not reasonable or realistic and can lead to massive disappointment. The truth is there will be difficult times on the cancer journey for every member of a family. Not being allowed to talk about these scary and sad truths is unhelpful and dishonest and can lead to burying negative emotions.
2. Let’s pretend.
   This dishonest style of communication usually flows from the prohibition on sharing anything deemed as “negative.” Some family members and patients will simply not show any evidence that they feel fear, sadness or anger – preferring to stuff the powerful emotions deep down. Patients and family members sometimes believe that sharing their honest feelings and thoughts will “make it worse” for the other. The cancer becomes the elephant in the room that everyone pretends to not see.
3. You will have tx.
   no matter what Some families insist that the patient get as much treatment as possible, as quickly as possible and for as long as possible – sometimes in spite of the patient’s doubts or reluctance about the debilitating side effects. Some families coerce or cajole a patient to continue treatment against his or her wishes to satisfy their desires to “do something!” I have worked with patients who endured highly toxic treatments against their will to assuage their family member(s)’ fear that they did not do enough to “fight the cancer.” Patients are entitled to self-determination to choose their treatment or to choose not to take treatment.
4. Can’t we just get back to normal now that treatment is over?
   Caregivers unaffected personally by a cancer diagnosis just do not understand the concept that who the patient was before the cancer – is gone forever. That version of the patient no longer exists. After cancer, the patient is changed forever. The changes are not all bad, but there is no going back. Ever. There is no “going back to normal.” There is growing into the “new normal – the life after cancer.” Even with complete remission, the fear of recurrence and some of the long-lasting effects of the disease and treatment do not ever go away. The patient may look like they used to on the outside, and they may be smiling and laughing, but I guarantee you, they are living with the fear of it coming back and the internal and external effects of what just happened to them for the rest of their lives. Many patients have told me that survivorship is much more difficult than active treatment.
5. Refuse to prepare for the end of life.
   Some families just will not go there. They won’t allow the end-of-life discussions or planning to occur. Perhaps they fear it may hasten death, or seem uncouth, or be too painful – but, paradoxically, many amazing opportunities to deepen relationships and heal brokenness are lost when this topic is avoided. Even if imminent death is not on the horizon (and most of the time it isn’t), planning and talking about what the patient wants is never a bad thing. No one is guaranteed tomorrow. If anything, cancer at least makes us face the cold reality that we are all going to die one day. A cancer diagnosis gives an unexpected, uninvited and yet beautiful opening to explore this mysterious area together- to plan – to prepare – to bless – to heal. To create confidence, security and harbor no regrets.
6. Now what can I do?
   Families can overcome these challenges if they are educated, willing to change and motivated to grow. No one has to go through cancer alone – including family members. Get help. Imerman Angels will match the patient and his or her caregiver with a separate 1:1 mentor who either has the same diagnosis or who is related to someone with the same diagnosis to provide emotional support through a cancer diagnosis. Invest in inspirational books written by and for cancer survivors and their family members to read together, such as Cancer for Two by Dave Balch and 50 Days of Hope by Lynn Eib. Join a caregiver support group and open up. A few caregiver specific websites to get you started are: Cancer Support Community, Caregiver.org , and Can Care. Read The Four Things That Matter Most by Dr. Ira Byock for four excellent ideas of what to start talking about when cancer’s shadow affects someone in your family. Lastly, consider working with a therapist who has expertise in oncology or grief and loss to help you and your loved one navigate this new landscape. It’s likely you’ve never been here before, so you have a lot to learn – and it’s never too early or too late as long as we are still alive!

Originally published 4/8/2024 at TAC Challenging Family Dynamics and Cancer

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Published: Vol. 2; Issue 3; 2024 Quarter 3 Bulletin