Guilt and Gratitude: Staying in Touch After Cancer Treatment

Cancer Stories: The Art of Oncology

Listen to ASCO’s Journal of Clinical Oncology essay, “Guilt and Gratitude,” by Dr. Ilana Hellmann, attending physician at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann explores the guilt surrounding the toxic consequences of chemotherapy and her gratitude for the patients who continue to connect with their physicians, even after treatment.

The interview starts at 06:15

TRANSCRIPT

Narrator: Guilt and Gratitude, by Ilana Hellmann, MBBCh (10.1200/JCO.22.02000)

It was the end of a long day in clinic. There was a knock on the door to my office and my assistant’s head appeared: “Avi called and asked for an appointment.” The look on her face mirrored the thought that immediately went through my mind: That cannot be good. I asked her to fit him in to one of my clinics in the next few days.

I had first met Avi about 5 years previously. He was then a 29-year-old computer programmer and recently married to Talia, an artist. He was tall, skinny and stressed. She was short, stout and happy, an eternal optimist. They had no children. He had had an irritating cough, then developed night sweats and by the time he was diagnosed, he had advanced stage Hodgkin lymphoma: stage IVB with all the poor prognostic factors on the list.

He needed treatment quickly. We planned to give him the escalated bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisone protocol-nasty stuff, with lots of side effects, but with good results. I explained it all to Avi and Talia. Aside from all the usual suspects: hair loss, nausea, pulmonary and cardiac toxicity, bone marrow suppression, and secondary malignancies, there are high rates of infertility, especially in males. We sent Avi to collect sperm samples before starting treatment, and despite numerous valiant efforts, his samples were all of poor quality. There was nothing there that could be used in the future.

His treatment course was not easy. The side effects were, from my point of view, mild. He had no life-threatening infections and no admissions because of side effects. But for Avi, it was awful. He described feeling like being run over by a truck. He stopped working, and things were strained between Avi and Talia. She found it very difficult to deal with his constantly long face, and he could not stand her persistent optimism. At one point, I remember a conversation close to the end of his treatment. I said something about how we were nearly there, to which he replied, “I started this treatment when I was young and now I am old.”

He finished his chemotherapy and thankfully went into complete remission. I breathed a sigh of relief and smiled at Talia, both she and I thinking that now Avi would recover. Months went by and physically, Avi recovered. He went back to work and started exercising again. Then as the months turned into a year and then another year, testing revealed what was initially feared. Avi was infertile. The conversations in my office between Avi and Talia were tense and painful. Talia wanted to use a sperm donor. She wanted a child of her own and the experience of pregnancy and birth. Avi felt that he could not be father to a child that was biologically hers but not his. He wanted to adopt. Neither one of them was prepared to compromise and despite the interventions of a wonderful psychologist and then also a marriage counselor, it was a downward spiral. Then, Avi missed a follow-up appointment and stopped coming all together.

It had been a good 2 years since I had last seen Avi when the assistant knocked on my door. The next morning I saw Avi in the waiting room. The woman next to him was not Talia but his mother. I concluded the obvious: divorce. The thought that now he was in relapse (why else would he need an appointment with me?) and would have to go through salvage therapy without her was paralyzing.

I called him in to my office. He looked great! He greeted me with a big smile and a hug. We went through his medical history. I examined him and looked at his laboratory results. Everything looked perfect. Avi was relaxed and chatty, asking me about my work and my kids. I was going quietly crazy waiting for the punchline. I took a deep breath and asked him: “How’s Talia?”

He smiled and pulled out his cellphone. He showed me picture after picture of a beautiful 3 month old baby girl. “This is Lia,” he said. “I thought you deserved to know.” The tears sprang to my eyes. “How?” I asked. He explained that he had eventually acquiesced to Talia’s pleas. She became pregnant with sperm from a donor. He said that the pregnancy for him was nothing short of terrifying, but that as soon as Lia was born, it was obvious to him that she was his.

I was overwhelmed with emotion. I realized that I had been suppressing a tremendous feeling of guilt around what had happened to Avi (and Talia). The feeling of guilt was not foreign to me. I had experienced guilt around the death of a patient or around mistakes, real or perceived, that I had made. Avi, however, was cured of his disease, and I had done nothing wrong. This was an altogether different kind of guilt: one less spoken of and less obvious. The knowledge that we as physicians are able to cure patients from cancer is humbling. The fact that we cure them but leave them with life-long and life-changing side effects is devastating.

I do not know how much Avi understood what he had done for me by coming in that day. During that visit, he was treating me and not the other way round, and the healing effect was enormous. I possibly overdid it in my reaction to Avi in my office that day. But as he got up to leave and I thanked him for taking the time to share his news, I think he knew.

In the years since, I have learned to ask patients to call me when they are unwell, but to please remember to also call or text me when they are feeling better. There are many who have taken this very seriously, and those messages are often a tremendous source of inspiration and reassurance, especially on difficult days.

To Avi and to all my other patients who take the time to call to say they are feeling better or to share some piece of good news, who are able to see the person in their physician, and understand my need, I thank you.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You'll find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University.

Today, we're joined by Dr. Ilana Hellmann, Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel. In this episode, we will be discussing her Art of Oncology article, 'Guilt and Gratitude'.

At the time of this recording, our guest has no disclosures.

Ilana, welcome to our podcast and thank you for joining us.

Dr. Ilana Hellmann: Thank you for inviting me, I'm delighted to be here.

Dr. Lidia Schapira: It is our pleasure. Ilana, I'd love to start the show by asking you if you can recommend to our listeners any recent story or book that has moved or inspired you.

Dr. Ilana Hellmann: So, I read to escape, I don't read medical books, I don't watch medical programs. And I heard someone recently recommend, on one of your podcasts, a book by Anthony Doerr, called, All the Light We Cannot See, which I absolutely love - it's one of the most beautiful books I've read in the last two or three years. And I've just finished his next book which took him years to finish, it's a 600-page beautiful book called, Cloud Cuckoo Land, it has an interesting name. Have you read it?

Dr. Lidia Schapira: I have not read that one.

Dr. Ilana Hellmann: It's a wonderful book, and if you read the last one, it's no less inspiring with lots of different characters over different time periods, and they're all connected to each other by a story, by a fairytale, and it's a beautiful book. I enjoyed it tremendously.

Dr. Lidia Schapira: Oh, thank you for that. I have a book for my next trip now.

Dr. Ilana Hellmann: Wonderful.

Dr. Lidia Schapira: Let's talk a little bit about writing in Medicine, and writing, as a way of sharing our stories with our colleagues and our trainees. What was the motivation for you to write this piece? It seemed to me, when I first read it, that it took years to put it together. But what was the driver for sending it out to the world?

Dr. Ilana Hellmann: It's quite a strange story. In fact, what happened, happened a large number of years ago - the baby is 10 today. I wrote it just after she was born. It was a long, long time ago, when I saw the patient and I was overwhelmed by what happened, and I sat down and wrote something and put it in a folder on my computer, and forgot about it. What then happened, as you say, that it took years and years to finish, is that I got a call from the computer tech people in the hospital who said, "We're coming to give you a new computer, and if you don't clean up all these things on your desktop, they're going to get lost." And I found this folder that I'd forgotten about completely, and I read it and wasn't finished. You know, I hadn’t thought about it in all those years. The end part about what it had done to me over the years, and the things that have changed in my practice because of what happened came later.

I think we, as doctors, not just oncologists, doctors in general - we see bunches of people during the day, and one goes out, the next one comes in, and another goes out. You know, you don't have time during the day to process what you're feeling, and you just have to get past it and go to the next patient. I find that occasionally, at the end of the day, I think, "Wow, I have to write this down." And the truth is that I've just about never shared anything of the things I've written. I work a lot with students, and we encourage students to write narratives, reflective diaries; you know, I thought, "Wow, it's kind of hypocritical of me to tell them what a wonderful thing it is to do and not share something like this with somebody else." And that's how it happened that I shared this particular piece.

Dr. Lidia Schapira: So, before we go into what I think is the essence of the piece, tell us a little bit about what it's been like for you to share your writing with your students now. Have they had a chance to comment and react to this piece?

Dr. Ilana Hellmann: My students haven't seen it yet. My colleagues, our residents, have all seen it, and it's been quite amazing. It's a side of us that we speak of less. There are things that are left behind closed doors, and it's been wonderful. I think people who've read it have then come to me privately and said, "Wow, that's an amazing story, and I'm so glad you shared it with me. And that's an amazing outlook, what you thought about it." So, it's been quite something. My students have been on holiday the last two months, we're just starting again with all of them, and I'll share it with them once it's published.

Dr. Lidia Schapira: I think they'll appreciate it. But let's talk a little bit about this, and you just said there's so much that happens when we close the door. I don't want to trivialize the message in your essay and say that it's just about self-care, because I think it's about much more than that. So, let's talk a little bit about what it felt like to you to be on the receiving end of this gratitude. Patients often express that they are so grateful for what we've given them through our treatment, and, you know, an extension in life, or an improvement in symptoms, but it's rarer for us to really have and feel that compassion emanating from a patient, and it feels so good. Take us there. Tell us a little bit about what it felt like.

Dr. Ilana Hellmann: Absolutely. I completely agree with your sentiment. As I wrote, I had no idea what was going to happen when he walks through the door. I expected something completely different. When he pulled out his cell phone and there were these pictures, it was just overwhelming. I couldn't stop the emotion; it was just amazing. And I knew that he'd come for me, literally. He'd come to say to me, "It's okay, I'm fine. I've gotten on with life, everything is good." I hadn't seen him in two years. He then disappeared, and I didn't see him again until he needed a letter for something, or other.

And I've actually seen him again, I saw him two weeks ago because of this essay. And after that happened, I thought, "Wow." As you say, it's not just self-care, it's way deeper than that. And in a way, we are trained to look after our patients. The patient is the one with the disease. We need to think about what the patient is feeling, we need to make sure they don't have too many side effects and long-term stick to what we give them. And we are not trained to look after ourselves, or certainly, to ask our patients to consider what we feel, or whether what they're going through has any effect on us. But as I wrote, in the years since, I had a patient recently with lymphoma, and she was very, very unwell in the beginning, a young lady, she dreamed about going for a walk on the beach. And over the first few months that she was treated, she was very unwell and she could barely walk, and I said to her, you know, she kept saying to me, "I'm going to get to that beach. I'm going to get to that beach." And I said to her, "You know, when you get to that beach, it would be so wonderful if you could let me know." And when she got to the beach, she sent me a WhatsApp-- all she sent me was a picture of the waves rolling onto the beach. As you say, I was so grateful for her sharing that with me.

And I think, and maybe this is the bottom line, that exposing that side of us to our patients makes us more human. You know, we're not just the people who hold their hand and give them their chemotherapy, and hopefully, help them get past whatever it is that they're ill with, but we are people. People like it. When I give patients my email or my phone number, I say to them, "You know, when you are not well, or whatever you need, let me know. But if you're feeling better, I'd love to hear that too." And I've never, ever had anybody dislike that. Most of them say, "That's wonderful. Absolutely, I'll let you know." And then, as I wrote, they take it very, very seriously, and it's such a wonderful thing. You know, in amongst the 20 emails of, "I've got terrible nausea, and I'm constipated, and another lump has appeared in my neck, I need a letter for some insurance," and so on, and so on, then to, "I just wanted to let you know that I'm really doing okay." Or, "Whatever you gave me, it feels better." And again, really, I think it just gives the patients a bit of a look into the human side of their physician.

Dr. Lidia Schapira: And it definitely feels so healing I think for us. I was struck by your account when you talked about the fact that people walk in and out of your office, and you're constantly prepared for emergencies. Basically, our clinical time is often responding to all of the challenges and the problems that patients bring to us, because we deal with people who are so ill and it's very stressful, so, it almost seemed to me that you were surprised when what happened in that encounter was just meant to be a gift to you - an expression of gratitude, and that seems to have had a huge emotional impact. And as you were talking, I wondered, do you and your colleagues share these stories? The stories, the photos of your patient getting to the beach, and the messages of gratitude that often come months or years later?

Dr. Ilana Hellmann: We do, we do. You know, as the years have gone by, technology has changed. There used to be that board in the doctor's room, where a patient would have written a letter, and would get pinned on the board - those days have gone. Today, patients, some of them write letters, and then people take a photograph, and we have a WhatsApp group, or an email-- I'm sure there was one like that, yesterday, from one of my other colleagues, who got a beautiful letter from a patient. Absolutely, absolutely. In the same way that when there's bad news about a patient that everybody knows, it's shared, when there are good things about when patients thank us, or if they're just better, you remember there was so and so who was really doing unwell. Well, you know, things are looking better. Definitely, definitely, we share, for sure.

Dr. Lidia Schapira: So, how do you think this experience affected or changed your practice and how you treat in future patients?

Dr. Ilana Hellmann: When I called Avi, the patient in the essay, and I hadn't spoken to him for many years-- he disappeared from follow-up, and it happens - young patient, he had better things to do than come and see his hematologist. When I called him, immediately, he recognized my voice when I said, "Hello", and he was very happy to hear from me. And when he heard why, and I sent him the piece, he was overwhelmed with the effect that it had on me. Immediately, we made a date, and he came in for an appointment, and we chatted about it.

He had a lot to say about the essay. He was very, very stunned, in fact, by the accuracy, from his point of view, of how I had described him and his wife, and what they'd gone through, and what had happened, and he wanted to know if things have improved. You know, back when he was ill, it wasn't so easy to find a psychologist for him. It wasn't something that was-- now, we have two psychologists who work with us, and things are a lot better. But his biggest question to me was, he said, "You know, I never thought about your side. It never occurred to me that what was happening to me was affecting you." He said, "You know, are you counseled? Does somebody look after you?" That's a difficult question. It's not such a comfortable question. I don't what you would answer to that one. But certainly, not officially.

There's definitely no special time to work through-- you know, things come up when we have meetings, but it's not as if I have sessions to say, "Oh, I had a bad day, and this is what happened, and so and so, and whatever," but I share more with my patients. They're sad, I say, "Yes. It makes me sad too." I used to think maybe it made me weaker, or it was unfair to the patient to show them my emotion, and I've learned that I think it's absolutely fine, to a certain limit, to show them that I'm human, and I'm with them, and that's okay. And as I say, I'd ask them specifically to share good things with me, and not just bad things. And it's something that I tell my residents and students, I say, "Even people who are unwell have good moments, and we need to encourage them, and also enjoy them ourselves."

Dr. Lidia Schapira: I think we could talk for hours, and I sincerely hope that the listeners will talk with their colleagues - so, with somebody else about these same issues. I think it's a fabulous conversation. I'm not trying to evade answering your question of what I would've said, or what I would say; I had an almost transformative moment many years ago when I was a young oncologist, and a patient who was incredibly kind and tuned into me, who had metastatic cancer, saw my expression when I walked in the exam room, and she said, "You're having a bad day." And just that moment of empathic connection, when she recognized that I was under stress, I clearly showed it, was enormous for me. And I felt such deep compassion from her and was able to then turn this into a self-compassion moment, and then I sort of reset myself, and we had a good visit. But since then, I've been much more aware of the fact that our patients do also pick up some of these feelings. And when there's a good connection, their presence can be, and feel, very healing for us as well.

And the answer to the question of, "Do we have psychologists? Do we need therapists?" I think is one that we as a collective group, or as a tribe, should often ask ourselves. What do we need? How do we vent? How do we unload? How do we share, and how do we get that social support that we need to do this difficult, stressful work, in the same way that we think about the mental health and well-being of our patients, as you so beautifully pointed out?

So, I thank you very much. I think that as the Editor, and the readers who first looked at your essay, we were very moved by this sentiment that you have about the deep connection we feel, and how much we wish our patients well, and how grateful we are when they tell us that they are well.

So, I wanted to give you an opportunity to finish the podcast with a thought or reflection.

Dr. Ilana Hellmann: I think we don't reflect enough. Today, we teach students to think reflectively - "I saw something, it meant something to me. What does it do with me?" But it's not something I was taught, or it's certainly not the regular kind of discussion that happens, and that I think writing things down is so therapeutic - you think about something, you write it down, you read it again, you come back to it, as this happened to me, years later. It's a beautiful process. I would recommend to people to just try - when something happens, to just sit down with a piece of paper-- well, nobody sits with a piece of paper, in front of a computer and write it down.

Dr. Lidia Schapira: Even if we don't have an IT person coming to give us an ultimatum, they're going to clear everything on our desktop by tomorrow.

Dr. Ilana Hellmann: Right. Absolutely.

Dr. Lidia Schapira: Until next time, thank you for listening to JCO's Cancer Stories. And thank you, Ilana, for a wonderful show today.

Dr. Ilana Hellmann: Thank you.

Dr. Lidia Schapira: Don't forget to give us a rating or review wherever you listen. Be sure to subscribe, so you never miss an episode.

JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

Show Notes

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Guest Bio

Dr. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel.