My partner Judith had pain in her sinus cavity caused by a tumor called a plasmacytoma. After her biopsy, her surgeon called Friday afternoon with the results. She asked him to wait fifteen minutes until I could be home with her to get the news. He had no flexibility and said he could speak either then or Monday. She chose to speak with him then on the phone still alone. He confirmed that the tumor was cancer of an unknown type. She hurried to the hospital to get more tests to learn what kind of cancer it was. That was a really bad day.
Judith and I both work in the health care system. I am a palliative and acute care chaplain, and she is a physical therapist who worked in a managing chronic pain clinic for many years. We thought we were prepared when we walked into the oncologist’s office several weeks after that phone call to hear the results of the bone marrow biopsy. We hoped it wasn’t, but thought it likely was Multiple Myeloma (MM), an incurable rare blood cancer. Even so, the final diagnosis of MM that day was devastating for both of us. Our lives were changed forever.
I will never forget how alone we felt as we left that office, even though our dear friend accompanied us. We both worked in that building, but we felt like we were on another planet, in a strange building and had been left to die without food. We were free falling without a net. Nothing happened in that meeting that helped us feel otherwise.
Life continued during this time. We both lost a parent and grief became what we ate for breakfast. I learned how to stop trying to control everything since I couldn’t control anything.
I have done a lot of thinking about the days we received the news that she had cancer and, weeks later, her definitive diagnosis. I wish it had been different and wonder how it affected the rest of our journey with cancer. I hope doctors who give difficult news as part of their work know or learn things they can do to make it a more human and compassionate experience. Some suggestions:
1. Always ask the person if they would like someone with them. Then, listen to the answer.
2. Convey that you understand in your kishkas/guts that what you are about to say is going to change our lives and everyone in our lives forever. Our lives will never be the same. Ever.
3. Show compassion. How would you want your mother or daughter or brother to receive news like this? How would you want to receive life changing news?
4. Notice your body. Are you distracted with movements like tapping of feet or pens? Are you making eye contact or looking at the computer? Are you being interrupted by staff or phone calls?
5. Know it isn’t your fault.
6. If you are sad, it’s ok to show it. It is normal to be sad at a time like this.
7. Have Kleenex available. Allow for tears. Stop talking. Don’t rush.
8. Have someone you can talk with before and after you give news that will change our lives. You will need support.
9. Make sure that we know the medical plan for what is next: tests, an appointment, treatment.
10. Offer resources to support us emotionally, spiritually and logistically that we can access soon. Don’t wait for us to ask.
11. Offer information and resources to help us learn about our disease if we want it.
12. Have a net available to catch us as we fall. We are falling, whether we show it or not.
What the net might look like:
- Loving, compassionate silence
- If you can’t pick us off the floor or mop up the river of tears, find someone who can. Right then.
- The net could include words like:
- “We will help you get through this.”
- “We are with you all the way.”
- “You are not alone.”
- “Stay in touch, it’s ok to call with anything you need. I am guessing you may not remember much of what we talked about today, except that life has changed. Please call me with any questions or concerns before our next meeting.”
- “You will need support. You are probably in shock right now. Our wonderful social worker or chaplain or nurse will call you in a few days. I highly recommend you meet with them. They can be very supportive and help you find the right kind of support for you and your family.”
- “I can’t imagine how this must be for you. (And mean it!)
- “Is there something else I can support you or your family with right now?”
I am still hurt that no one from the medical staff held out a net for us on the day we received the catastrophic news. No one to light the way. No one to meet us where we were. There was just a bomb, a word bomb. We did find our way by ourselves. With a few wonderful chemo nurses, other patients who came before us guiding our way and deeply committed friends, we made it through two bone marrow biopsies, one surgery, weeks of radiation, several different ongoing chemo treatments with steroids, several PET/CT scans, MRIs, weekly subcutaneous chemo shots, oral chemo, a harvest of stem cells, a stem cell transplant in the middle of a harsh winter and numerous weekly or monthly blood draws.
There was the waiting and worrying. Every month the lab test told us whether the latest chemo treatment was working and how well. Every few months there was a very hard decision about which treatment to switch to or which doctor or option to trust because there are a variety of opinions about how to treat multiple myeloma. We struggled our way through the fatigue of knowing there is no cure. A deep fatigue. And a deep understanding that with life comes dying. Eventually.
We tried to weave our own net to help us out of the deep despair we often felt. We tried many different support groups, a writing group, the local myeloma support group, cancer life coaching, outpatient palliative care and were both involved with creative expression that only grief can give birth to. Judith wrote and performed several amazing one woman plays, and my writing and spiritual leadership was deeply affected by this experience. There was always fear and always love.
Some of what we tried was not right for us, and some was life saving. I can’t stop wondering if this journey would have been different if there had been a net from the very beginning. Or, maybe, nothing could have softened the fall. But I will never know.
Chaya Gusfield is a palliative care and acute care chaplain.
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