Drowning in Every Conceivable Way
A Conversation with John Saltalamacchia
In this interview, I speak with
, whose wife passed away from triple-negative breast cancer in 2023. He is incredibly brave for speaking with me about caregiving and his grief, which is still very raw. We discuss the lack of support for caregivers in the healthcare system and the need for better resources and understanding. Thank you, John, for taking the time to talk with me. Please show him your support.************************************************
Kristina: Hi everyone. Welcome to "After He Said Cancer." I am a physician-scientist and the wife of a man with male breast cancer. Today, it is my pleasure to talk with John Saltalamacchia, whose wife passed away from triple-negative breast cancer in 2023. He was her full-time caregiver.
John, how are you doing right now?
John: I don’t recommend anything that I have gone through to anyone. My life has been a weird journey since her passing—it's moved from hellscape to a general dystopia. I left the world to take care of my wife, and I feel like a fish out of water trying to reintegrate.
Kristina: Every part of the cancer journey is difficult. Watching someone go through this is its own emotional purgatory. The uncertainty of losing them is something I continually grapple with.
I don't want to lose my husband. He's my best friend. The idea that something's going to take him away makes me angry. I think the myth is that you are supposed to deal with grief, the anger disappears, and you arrive at acceptance. But I still feel all the grief emotions at once.
John: I've been studying this for a year and a half, trying to find my way through it. I've gathered as much information as possible from others' experiences—newly grieving, down-the-road grieving, reading books, whatever seems helpful.
The conclusion I've reached is that grief doesn't go away. You're metaphorically carrying a weight you somehow continue carrying, which becomes more normal—though that's not the right word. Though you do acclimate, and then it feels more like a flat line of pain. Although I had time to anticipate this, there's a profound difference between anticipating loss and experiencing it.
As someone said at my wife's eulogy, I would have been happy to continue caregiving forever for her to be there. I would never have stopped taking care of her or given up.
But when she passed, I experienced a grief so painful that it seemed as if I hadn’t done any grief work in the five years since her terminal cancer diagnosis. The difference between the second when she was alive and the next when she was gone was unlike anything I could have imagined.
Heidi Saltalamacchia, John’s wonderful wife
Kristina: I had a taste of this disconnect between anticipatory grief and actual grief when my father died of dementia in 2014. Once he died, my world went black. I remember feeling shocked and thinking, "I should have known this was coming. What is wrong with me?" It's taken me years to realize you can't judge yourself.
My therapist said, "When you're in the middle of hell, the only way out is to go through it." It’s important to allow yourself to feel whatever comes without self-judgment. There are few resources to help caregivers go through this emotional journey.
John: Caregiving support is not baked into the system. During COVID, when my wife had radiation, I couldn't go in with her. While waiting in the car, I found a support group for male caregivers in the Midwest. The group leader told me about a resource in New York, a woman who pioneered caregiver support. She was at Sloan Kettering, where we'd been going for three years, and I hadn’t known about her.
Even when resources exist, nobody tells you. You don't have time to research. You can't say, "Hey, you have cancer. Let me take a month off from this rollercoaster to research resources." None of that happens.
Kristina: There's someone on Substack—
—who has compiled caregiving resources after going through this herself. It's tremendous what she's done. I recently became a Foundation Supporter of her Substack because I admire what she has done.I sympathize with how hard it is to access support. I remember knowing I was depressed, thinking, "There's got to be a support group," but nobody knew of one for caregivers at our cancer center. You're not the priority, yet you're holding everything together.
What would you recommend to someone who is caring for a cancer patient?
John: I'm a terrible person to ask because I'll tell you the truth, which may not help anybody.
We were drowning in every conceivable way. Even with theoretically available resources, I couldn't access anything or look up information, and there was no opportunity.
I've been studying death doula work and better approaches to end-of-life. That's an example of a good way to prepare for an inevitable outcome, whereas with caregiving, no one prepares for that ahead of time, and then they’re just screwed.
Things could have been different with better resources—a big family, grown kids, younger parents. In our case, we had none of that; our parents were elderly, and then COVID complicated the possibility of outside support for much of that time as well.
Kristina: Thank you for that brutally honest take. I appreciate you sharing your experience.
John: Thank you for doing this. Maybe some people will hear this and will get better educated before they are in this situation. I hope other people have more support to help them through this experience in the future.
Here are other ‘After He Said Cancer’ caregiving stories near to my heart.
1. A Holy Experience. My conversation with
, an organic farmer in Hawaii, who was a caregiver for her wife who passed away from breast cancer. https://www.afterhesaidcancer.com/p/a-holy-experience?r=1acedj2. A Queen. My story is about one of the most well-known caregivers in the male breast cancer community,
. https://www.afterhesaidcancer.com/p/a-queen?r=1acedj3. Friendship at the End of Life. My conversation with
, a hospice chaplain and Baptist minister, about his work supporting those at the end of life and spiritual caregiving. https://www.afterhesaidcancer.com/p/friendship-at-the-end-of-life?r=1acedj4. A Low Priority. My story about the neglected mental health of caregivers. https://www.afterhesaidcancer.com/p/a-low-priority?r=1acedj
If you haven’t heard of
, the Carer Mentor, I highly recommend subscribing to her and visiting her website. The resources on her website are endless and growing.Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:
Hearting this post, so that others are encouraged to read it
Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts
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Aw John - tears seeping from my eyes here. Thank you for sharing your thoughts so openly with Kristina and thanks to Kristina for interviewing you with such compassion and empathy. Heidi's gorgeous.
I hear you. My grief is different, yet I feel so much resonance with what you've shared. The research. Exploring death doula work/training. In particular, carrying the grief. Even when life's growing around it, there are piercing moments, and the dam bursts...and everything is raw.
Several of us are walking alongside you.
Dear Kristina, thank you so much for your support and advocacy of Carer Mentor. I appreciate you, and your financial endorsement of my work - as you know time and effort is always a challenge for me. Thank you!
Thank you, Kristina, for sharing John’s experiences of going through his grief. It sounds like he was a wonderful caregiver for Heidi. I agree the caregiver services are not routinely offered for those of us who are needing it. I agree that Death Doula services would be very beneficial for caregivers of those with a terminal illness. Thank you both again.