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 then 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:
- Always ask the person if they would like someone with them. Then listen to the answer.
- 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.
- 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?
- 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?
- Know it isn’t your fault.
- If you are sad, it’s ok to show it. It is normal to be sad at a time like this.
- Have Kleenex available. Allow for tears. Stop talking. Don’t rush.
- Have someone you can talk with before and after you give news that will change our lives. You will need support.
- Make sure that we know the medical plan for what is next. Tests, an appointment, treatment.
- Offer resources to support us emotionally, spiritually, logistically that we can access soon. Don’t wait for us to ask.
- Offer information and resources to help us learn about our disease if we want it.
- 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 knowing 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 lifesaving. 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.
Brilliant! Yes. Absolutely yes. Beautiful. Wow. Thank you.
Beautifully stated. Susan
Sent from my Verizon, Samsung Galaxy smartphone
Perfect! Truth be shared!
Hello, I am very moved by your article. My husband was diagnosed with MM in 2007. However, we were first told that he had lung cancer and had 6 months to live. Our first moments with the oncologist was troubling because of his arrogance, his cold message and in his dismissing a med student stating that she thought it may be MM instead! She was obviously right!! It is a long story so I won’t go into it here. But I realized at the time that we were also flying without a net and needed someone to guide us through the maze we were about to go through: a steroid reaction, chemo, a bone marrow transplant and recovery, etc. I have wanted to write about it (I got my MFA in playwriting) but have had a hard time going “there.” Yet, recently, I have been jotting things down and have realized enough time has passed to start writing about our experience. I lost Joby ten years ago. Thankfully, for so many, the cancer is caught early enough to catch it and with the new drugs can live with MM as almost a chronic disease. I hope that is the case in your situation. I believe there needs to be a person as a liaison in the cancer world to help patients and families to negotiate the difficult world they step into with a cancer diagnosis. Thank you for bringing this and your story to our attention! Holly
Thank you, Chaya, for this thoughtful, articulate, extrapolation of what you learned and the excellent suggestions to help providers do better. You are a hero.
This is great, Chaya, and your suggestions should be medical protocol for everyone in the health care system. As for whether support from the news-giver would have helped the whole process, I’ve gotta believe that yes–it would have. It would give the grieve a smaller universe in which to compound or spiral. Love to you and Judith.
Chaya, Your beautiful piece should be required reading for all doctors and other medical people. Thank you. Bonni Schiff
Beautifully said!
Your writing is always so moving. I am so sorry that you and Judith were treated so poorly at such a difficult time, by health care providers no less, causing extra pain on top of what was already so awful. I hope it’s ok that I passed this piece along to some other who work in health care. Love to you and Judith.Julie
Deeply touched by your willingness to share your pain so others may be treated differently. A beautiful contribution Chaya. Love to you both.
Amen!
Wow! Well done my friend. Love you both.
Chaya, this is perfect, brilliant, & should definitely be required reading
and training for oncologists. Thank you for sharing your hard-won wisdom.
We all need to listen to you. XXX