Writing a Medical Memoir: Lessons From a Long, Steep Road

Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "Writing a Medical Memoir: Lessons From a Long, Steep Road” by David Marks, consultant at University Hospitals Bristol NHS Foundation Trust. The article is followed by an interview with Marks and host Dr. Mikkael Sekeres. Marks shares his challenging journey of writing a memoir describing his patients and career.

Transcript

Narrator: Writing a Medical Memoir: Lessons From a Long, Steep Road, by David Marks, PhD, MBBS, FRACP, FRCPath 

The purpose of this essay is to take hematologist/oncologist readers of the Journal on my challenging journey of trying to write a memoir describing my patients and career. This piece is not just for those who might wish to write a book, it also can be generalized to other creative writing such as short stories or other narrative pieces intended for publication. My experience is that many of my colleagues have considered doing this but do not know where to start and that many embarking on this journey lack the self-confidence most writers require. I also describe other issues that unexpectably arose, particularly my struggle to get the book to its intended target audience, and of writing about myself in such a personal way.

In my book of semifiction, I tell the stories of my patients with leukemia, but also describe what it is like to be a physician looking after young patients with curable but life-threatening diseases. I recount my medical career and working in the United Kingdom's National Health Service (NHS), a very different health system to the one I experienced when I worked in Philadelphia during the early 1990s. Telling the stories of my patients with leukemia (and my story) was my main motivation but I also wanted to challenge my creative writing skills in a longer format.

As a young person, I wrote essays and some poetry. As a hemato-oncologist, the major outputs of my writing have been over 300 scientific papers and a 230-page PhD thesis. The discipline required to write papers does help with writing a nonfiction book, and as with writing scientific papers, the first step is having a novel idea. I admired the work of Siddhartha Mukherjee (“The Emperor of all Maladies”) and Mikkael Sekeres (“When Blood Breaks Down”), but I wanted to write about my patients and their effect upon me from a more personal perspective. I obtained written consent from the patients I wrote about; nearly all of them were happy for me to use their first name; they trusted me to tell their stories. All of the patients' stories have a substantial basis in fact.

I also wrote about colleagues and other people I encountered professionally, but those parts were semifiction. Names, places, times, and details of events were changed to preserve anonymity. For example, one subchapter titled “A tale of two managers” comprises events that relate to a number of interactions with NHS medical managers over 30 years. The managers I wrote about represent a combination of many people, but it would not have been possible to write this while still working at my hospital.

I had wanted to write a book for years but like most transplanters never had the sustained free time to jot down more than a few ideas. In the second UK lockdown of 2020 when we were only allowed to go out to work and for an hour of exercise, we all had more time on our hands. A columnist in the Guardian said that people should have a “lockdown achievement”; this would be mine.

This is how I went about it. I knew enough about writing to know that I could not just go and write a book. I considered a university writing degree, but they were all online: There was not the nourishment of meeting and interacting with fellow writers. I joined two virtual writing groups and got some private sessions with the group's leader. We had to write something every week, submitted on time, and open for discussion. In one writing group, there was a no negative criticism rule, which I found frustrating, as I knew my writing was not good enough and that I needed to improve. I had no shortage of ideas, stories to tell, and patients and anecdotes to write about. I have a pretty good memory for key conversations with patients but learned that I did not have to slavishly stick to what was said.

I also wrote about myself: my emotions and the obstacles I encountered. To understand how I guided my patients' journeys, my readers would need to understand me and my background. I carried a notebook around and constantly wrote down ideas, interesting events, and phrases. Every chapter underwent several drafts and even then much was totally discarded. I was disciplined and tried to write something every day, realizing that if I did not make progress, I might give up. Most days the words flowed; refining and editing what I wrote was the difficult part. Very different to Graham Greene in Antibes. He would go to his local café, write 200-400 words, then stop work for the day and have his first glass of wine with lunch before an afternoon siesta.

How would I tell the story? My story was chronological (in the main), but I felt no need for the patient stories to be strictly in time order. The stories had titles and I did not avoid spoilers. “Too late” is the story of a patient with acute promyelocytic leukemia who died before she could receive specialist medical attention. This had a devastating effect on the GP who saw her that morning.

So, there were plenty of patient stories to tell, but I needed to learn the craft of writing. Visual description of scenes, plots, and giving hints of what is to come—I had to learn all these techniques.

Everything I wrote was looked at at least once by my mentor and beta readers, but I also submitted my work for professional review by an experienced editor at Cornerstones. This person saw merit in my work but said that the stories about myself would only interest readers if I was “somebody like David Attenborough.” Other readers said the stories about me were the most interesting parts.

So far, I have focused on the mechanics and logistics of writing, but there is more to it than that. My oncology colleague Sam Guglani, who has successfully published in the medical area, was very useful. I asked him how his second book was progressing. “Not very well.” “Why?” “It takes a lot of time and I'm not very confident.” Sam writes such lovely prose; Histories was positively reviewed yet even he still has self-doubt.

Hematologists/oncologists, transplanters, and chimeric antigen receptor T cell physicians are often confident people. Most of the time we know what to do clinically, and when we give medical advice, we are secure in our knowledge. This is because we have undergone prolonged training in the areas we practice in and possess the scientific basis for our decisions.

This is not the case when doctors take on creative writing. Few of us have training; it is out of our comfort zone. Nearly all new writers are insecure, in a constant state of worry that our outpourings are not “good enough,” that “nobody will like it.” Even high-quality memoirs may be hard to get published. I did not enter this thinking I would fail, and I have received feedback that I “can write.” But when you look at people who can really write, who have already been published, and earn a living from writing, you think that you will never be as good. Does this matter for a medical memoir? Yes, it does. I came to realize to improve it is important to surround yourself with people who read a lot and preferably with some who are well-regarded published writers. These people should offer unrestrained feedback, and you should take note. However, I learned you do not need to do everything they say—it is not like responding to the reviewers of scientific papers—your book should retain your individual stamp and cover what you think is important.

I found there are risks in writing a memoir. Private matters become public knowledge to your family and friends. In a hospital you have lots of work relationships, not all of which are perfect. It can be a tense environment; you often have to keep quiet. Writing about them in a book, even if colleagues and events are disguised or anonymized, runs the risk of colleagues recognizing themselves and not being happy with how they are portrayed.

Writing a book's first draft is hard; getting it to its final draft even harder but perhaps not harder than writing a major paper for JCO or Blood. (For me writing the discussion section of a paper was the most difficult task). However, finding an agent is perhaps the hardest of all. Every agent has their own laborious submission system. About a third of agents do not respond at all; they may not even read your book. Another third may send you a response (after up to 3 months) saying that the book is “not for me.” Three agents told me that their own experiences with cancer made it impossible for them to read the book while others said it was a worthwhile project but it was not their area of interest. That encouraged me.

It required resilience to get Life Blood published. I did not have the skills to self-publish, but I found a publisher that would accept the book, provided I contributed to the costs of publishing. This was not easy either because my book did not have as much final editing as a conventional publisher provides.

Getting the book to its target audience was another major challenge. A number of hematologic journals agreed to consider reviews of the book, and my colleagues were generous in offering to review it. However, I wanted my book to be read by people with cancer and their families: nearly all of us at some point in our lives. A digital marketing consultant helped me publicize the book on social media and construct a user-friendly Web site.

I hope this reflection offers some encouragement for budding authors who are hematologists/oncologists. However, as all writers reading this will know, writing is a lonely pursuit; it is something you do on your own for long periods and you cannot be sure your work will ever see the light of day. One of the main ingredients is persistence; this is probably the main difference between people who finish books and those who do not. Of course there may be benefits to physicians from writing per se, even if it is never published, although most hematologists/oncologists I know are quite goal oriented.

Was it all worthwhile? Yes, I think so. Writing about my career stirred up lots of memories and has been quite cathartic. Physicians often feel they have insufficient time to reflect on their practice. It made me reflect on my achievements and what I could have done better. Could I have worked harder for my patients (rarely) or thought of therapeutic interventions earlier (sometimes)? What about my professional relationships? In my efforts to do the best for my patients, was I sometimes too impatient (yes)?

I hope the book inspires young people contemplating a career in hematology/oncology but also gives them a realistic idea of the commitment it requires; even relatively successful doctors encounter adversity. To all my hematologic/oncologic and transplant colleagues worldwide, if you think you have a book in you, find the time and the intellectual space, start writing but also get help. In telling the story of your patients you honor them; it is a very satisfying thing to do but there are risks. I have had lots of feedback from friends and colleagues, the great majority of it positive, but when my book was published, I prepared myself for more critical reviews. I learned a lot from writing Life Blood; at the end, I was a stronger, more secure writer and hematologist/oncologist, more confident that the story of my patients and career was worth telling and relevant to a wider audience.

Dr. Mikkael Sekeres:

Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Dr. Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.

And what a pleasure it is today to be joined by Professor David Marks, a consultant at University Hospitals Bristol NHS Foundation Trust in the UK. In this episode, we will be discussing his Art of Oncology article, "Writing a Medical Memoir: Lessons from a Long, Steep Road."

Our guest’s disclosures will be linked in the transcript.

David, welcome to our podcast, and thanks so much for joining us.

Professor David Marks:

Thank you very much for inviting me. It's a real honor.

Dr. Mikkael Sekeres:

David, I really enjoyed your piece. We've never had a "how to write a memoir" sort of piece in Art of Oncology, so it was a great opportunity. And, you know, I think 30 years ago, it was extraordinarily rare to have a doctor who also was a writer. It's become more common, and as we've grown, still among our elite core of doctor-writers, we've also birthed some folks who actually write in long form—actual books, like you did.

Professor David Marks:

I'd sort of become aware that I wasn't the only person doing this, that there were lots of people who liked creative writing, but they had difficulties sort of turning that into a product. This was the reason for sort of writing this. I'm hardly an expert; I've only written one book, but I sort of hope that my experiences might encourage others.

Dr. Mikkael Sekeres:

I think it's a terrific idea. And before we get started about the book, I, of course, know you because you and I run in some of the same academic circles, but I wonder if you could tell our listeners a little bit about yourself.

Professor David Marks:

So, I'm Australian. That's where I did my internal medical and hematology training in Melbourne. And then I did a PhD to do with acute lymphoblastic leukemia at the University of Melbourne. I then moved to London for three years to do some specialist training in bone marrow transplantation and some lab work, before spending three years in Philadelphia, where I did transplant, leukemia, and some more lab work. And then, mainly for family reasons, moved back to the UK to take up a post in Bristol. I have retired from patient-facing practice now, although I still give medical advice, and I'm doing some consulting for a CAR T-cell company based in LA.

Dr. Mikkael Sekeres:

Great. And can I ask you, what drew you to focus on treating people with leukemia and doing research in that area?

Professor David Marks:

I think leukemia is just such a compelling disease. From really the first patient I ever looked after, there was a person who is both life-threateningly ill, has had their life turned upside down. Yet, there is—increasingly now—there's an opportunity to cure them or, at the very least, prolong their life significantly. And also, its sort of proximity to scientific research—that was the attraction for me.

Dr. Mikkael Sekeres:

There is something compelling about cancer stories in general. I think we talk about the privilege of doing what we do, and I think part of that is being invited into people's lives at probably one of the most dramatic moments of those lives. We're, of course, unwelcome visitors; nobody wants a diagnosis of cancer and having to have that initial conversation with an oncologist. But I wonder if, as doctors and as writers, we feel compelled to share that story and really celebrate what our patients are going through.

Professor David Marks:

So, that absolutely is one of my main motivations. I thought- there aren't, to my mind, all that many books out there that sort of try and tell things from both the patient with leukemia's point of view and the doctors looking after them. And I thought that their stories should be told. It's such a dramatic and frightening time, but I think the struggles that people go through in dealing with this—I think this is something I sort of felt people should have the opportunity to learn about.

Dr. Mikkael Sekeres:

Yeah, we're really honoring our patients, aren't we?

Professor David Marks:

Absolutely. When you think of the patients you've looked after, their courage, their steadfastness in dealing with things, of just battling on when they're not well and they're scared of things like dying—you've just got to admire that.

Dr. Mikkael Sekeres:

Yeah, yeah. David, you have a tremendous number of academic publications and have been transformative in how we treat people who have acute lymphoblastic leukemia. How did you first get into writing narrative medicine?

Professor David Marks:

Although I have written quite a lot scientifically, although that is incredibly different to creative writing, some of the same sort of care that one needs with a scientific paper, you do need for creative writing. I always liked English at school, and, you know, even as a teenager, I wrote some, you know, some poetry; it frankly wasn't very good, but I had a go. I came to a point where I wanted to write about my patients and a bit about my career. I had trouble finding the time; I had trouble finding the sort of intellectual space. But then COVID and lockdown occurred, and, you know, all of us had a lot more time; you know, we weren't even allowed to leave the house apart from working. So, at that point, I started writing. Prior to that, though, I had sort of kept a notebook, a quite big notebook, about stories I wanted to tell and events in my career and life that I wanted to tell. So there was something of a starting point there to go from. But when I first started writing, I realized that I just didn't know enough about writing. I needed to learn the craft of writing, and so I also joined a couple of writing groups.

Dr. Mikkael Sekeres:

That's—I find that absolutely fascinating. I think there are a lot of people who want to write, and there are some who have the confidence to go ahead and start writing, right? Whether they know the craft or not. And there are others who pause and say, "Wait a second, I've done a lot of reading, I've done a lot of academic writing, but I'm not sure I know how to do this in a creative way." So, what was your first step?

Professor David Marks:

I had sort of notes on these stories I wanted to write, and I did just try and write the sort of two- to five-page story, but I then sort of realized that it was just—it just wasn't very good. And I needed to learn really all the basic things that writers need, like developing a plot, like giving hints of what's to come, using visual description. Those things are obviously completely different to scientific writing, and I—it was a bit like going back to school, really.

Dr. Mikkael Sekeres:

And how did you even find writing groups that were at the right level for someone who was starting on this journey?

Professor David Marks:

So, I got a recommendation of a sort of local group in Bristol and a very established sort of mentor who has actually mentored me, Alison Powell. But it is difficult because some people on the group had written and published a couple of books; they were way ahead of me. And some people were just really starting out. But there were enough people at my level to give me sort of useful criticism and feedback. But yes, finding the right writing group where there's a free interchange of ideas—that is difficult. And, of course, my—what I was writing about was pretty much different to what everybody else was writing about.

Dr. Mikkael Sekeres:

So, you joined a writing group that wasn't specific to people in healthcare?

Professor David Marks:

There was something at my hospital; it was a quite informal group that I joined, and that had a whole number of healthcare professionals, but that didn't keep going. So, I joined a group that was really a mixture of people writing memoirs and also some people writing fiction. And I actually found a lot of the things that people writing fiction write, I needed to learn. A lot of those skills still apply to a sort of non-fictional or semi-fiction book.

Dr. Mikkael Sekeres:

You write in your Art of Oncology piece—I think a very insightful portion of it—where you're identifying people who can give you feedback about your writing, and you're looking for honest feedback. Because there are a lot of people where you might show them a piece and they say, "Gee, this is David Marks, I better say something nice. I mean, it's David Marks after all.” Right? So, you don't want that sort of obsequiousness when you're handing over a piece of writing because you need truth to be told if it's compelling or if it's not compelling. How did you identify the people who could give you that honest feedback, but also people you trust? Because there are also people who might read a piece and might be jealous and say, "Gee, David's already going on this journey, and I wish I had done this years ago," and they might not give you the right kind of feedback.

Professor David Marks:

Yeah, I mean, one of the writing groups I joined, there was a sort of "no criticism, no negative criticism" rule, and I did not find that to be useful because I knew my writing, frankly, wasn't good enough. So, funnily enough, my wife—she's very lucky—she has this reading group that she's had for 25 years, and these are—they're all women of her age, and they are just big, big readers. And those were my principal beta readers. And I sort of know them, and they knew that I wanted direction about, you know, what was working and what was not working. And so they were fairly honest. If they liked something, they said it. And if there was a chapter they just didn't think worked, they told me. And I was really very grateful for that.

The other thing I did at a sort of critical moment in the book, when I just thought I was not on track, is I sent it to a professional editor at Cornerstones. And that person I'd never met, so they had no—you know, they didn't need to sort of please me. And that review was very helpful. I didn't agree with all of it, but it was incredibly useful.

Dr. Mikkael Sekeres:

That's fascinating. So, I've submitted pieces in venues where people can post comments, and I always force myself to read the comments. And sometimes that hurts a little bit when you get some comments back and think, "Oh my word, I didn't mean that." Sometimes those comments illuminate things that you never intended for people to take away from the piece. And sometimes you get comments where people really like one aspect, and you didn't even know that would resonate with them. So, any comments you can think of that you got back where you thought, "Oh my word, I never intended that," or the opposite, where the comments were actually quite complimentary and you didn't anticipate it?

Professor David Marks:

I was reviewed by an independent reviewer for The Lancet Haematology. And you've read my book, so you sort of know that looking after people with leukemia, you do encounter quite a lot of people who die. And she sort of, almost as a criticism, said, "Professor David Marks seems to have encountered an extraordinary number of people who've died." And I thought—almost as a sort of criticism—and I thought, "I'm sort of sorry, but that's the area we occupy, unfortunately." There's lots of success, but there is, you know, sometimes we don't succeed. So I found that—I found that hard to read. But when you open yourself up as a writer, when you talk about your personal things, you've got to develop a bit of a thick skin. And I really haven't ego about my writing. I sort of still feel it's very much in its formative stages, so I'm quite open to criticism.

Dr. Mikkael Sekeres:

And were there comments that you got that were—you were pleasantly surprised that people liked one aspect of the book, and you didn't know it would really hit with them that way?

Professor David Marks:

I think they particularly liked the patient stories. There's one thing in the book about a young woman who has this amazing experience of being rescued by CAR T-cell therapy. This young lady's still alive. And that very much sort of captured the imagination of the readers. They really identified her and wanted to sort of know about her and, you know, was she still okay and so on.

Dr. Mikkael Sekeres:

I remember there was a piece I wrote, and included a patient, and it was an entree to write about a medical topic, and my editor got back to me and said, "What happened to the patient?" Right? People get invested in this. We've done this our entire careers for, for decades for some people who've been in the field for that long, and you forget that it's still a diagnosis, a disease that most people don't encounter in their lives, and they get invested in the patients we describe and are rooting for them and hope that they do okay.

Professor David Marks:

Yeah, I found people got very involved with the patients, and I've had actually several sort of inquiries; they want to know if the patients are still okay. And I think that I can definitely understand that from a sort of human level.

Dr. Mikkael Sekeres:

So, you wrote a memoir. How long did it take you?

Professor David Marks:

I suppose from the time I really started writing properly, I'd say about two and a half years. So, quite a long time.

Dr. Mikkael Sekeres:

Two and a half years. That can be daunting to some people. What advice would you give them if they're thinking about going down this path?

Professor David Marks:

I think it's a very rewarding thing to do. It is hard work, as you and I know, and it's sort of extra work. The only way to find out if you can do it is to try to do it. And try and find some time to do it, but get help. You know, seek the company of other people who are more experienced writers and sort of find a mentor. Somehow, you've got to, I guess, believe in yourself, really, and trust yourself that what you're writing about is worthwhile. And yeah, I don't know that I have specific advice for people about that aspect of things.

Dr. Mikkael Sekeres:

Well, I think that's a great place actually to end: to tell people to believe in themselves and trust in themselves. And I want to encourage everyone listening to this podcast to please check out Professor David Marks' book, Lifeblood: Tales of Leukemia Patients and Their Doctor. It's a terrific read. David, thank you so much for joining us today.

Professor David Marks:

Thanks very much, Mikkael. It's been a pleasure.

Dr. Mikkael Sekeres:

It's been delightful from my perspective.

Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Until next time, thank you, everyone.

 

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:
Professor David Marks is a consultant at University Hospitals Bristol NHS Foundation Trust in the UK.

 

Additional Reading:

Life Blood: Stories of Leukaemia Patients and Their Doctor, by David Marks