Dialogues between Survivors and Caregivers – Contradiction in Terms

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– Actually, do you consider yourself ill?
– Yes , of course!

I was discussing survivorship adventures with Manuel, a regular at our Parisian after-work drinks who has become a friend. We’re neighbors. Twenty kilometers apart. But you could really call us neighbors given the density of CAYACS per square kilometer.

Anyway, we were chatting when I got the feeling that we didn’t see things the same way.
Hence my question. The answer came out as if it were obvious and gave me a good week to think about it. Thanks, Manuel!

If I’m sick, I’m in bed. I can’t work, or do anything. It happens once or twice a year, usually with a cold that takes a turn for the worse.

And of course, I was seriously ill when I was a child. In 1977, I was not yet 11 years old when my right lung was removed. Radiotherapy. Thirteen months with chemotherapy.

But I wouldn’t say I’m unhealthy.

So does that mean I’m healthy?

I considered myself cured when the treatments stopped.

On the paper that the hospital gave me when they “fired” me, after ten years of follow-up care, it says: “in remission since that time.” Apparently, we weren’t quite on the same wavelength…
That very day, they also said: “We don’t want to see you anymore,” and that suited me just fine since I thought I was cured for years.

From that moment until the day I heard about long-term effects 30 years later (Long Term Follow Up did not yet exist in the time of the CAYACS dinosaurs!), I never stopped trying to prove to my family, to doctors, to the whole world, I was healthy. Or more precisely, I couldn’t be ill anymore: I’d already had my fill. And the hospital: never again.

It was probably just myself I was trying to convince.

Looking back, I realize that in my twelve years old mind, I had placed health on the same level as school: I translated it into terms of success. At school, you had to get good grades. So you had to be healthy. Same struggle. Everything was mixed up.

It turns out that school came easily to me: natural curiosity is a real blessing for academic success. And my greatest pride as a teenager was not having to repeat a year despite months of absence in fifth and sixth grade.
It was as if desire alone was enough to succeed. And I wanted to be healthy.

This flawed system worked for a long time. It was unthinkable to question my “good health.”

I had minimal medical care: a general practitioner for bronchitis, an ophthalmologist every five years, a gynecologist every three years, and a dentist every ten years. No pulmonologist. Not even health insurance. No need when you’re healthy.

So I was “healthy” when my GP applied for Long-Term Illness rights[1] in 2003. That stands fo Long-Term ILLNESS, after all! Well, I didn’t catch it.
It was just an administrative and financial matter.

I decided to go for a checkup at Ms Pneumo’s clinic on the eve of my forties. I was still in “good health,” although the respiratory tests revealed significant post-pneumonectomy syndrome, which I was coping with very well, having known nothing else. The walking test, in particular, showed an incredible desaturation that was so significant it went off the charts.

They offered me the option of having an endothoracic prosthesis implanted in place of the missing lung to try and improve things.

The surgeon, one of the best in thoracic surgery, had never performed this rare operation so long after the pneumonectomy—27 years—and he couldn’t hide how excited he was by the challenge. For an uncertain outcome: “I’ll open it up, if I can do something, I will; otherwise, I’ll close it up and leave it as is.”

Not very reassuring… The prospect of returning to the hospital (never again, right?), undergoing major and painful surgery, and a recovery period of several months… I was scared.

The irony of it all, I wasn’t even sick! The period before the operation was very tough.

It worked.

I focused on getting out of the hospital as quickly as possible. Real life was elsewhere. Especially since I could enjoy it even more: I was still desaturating, but less so. The values were remaining on the chart now, and I was discovering the difference between fatigue and exhaustion which had been my daily reality until then. I had come through the ordeal with flying colors, as evidenced by a “certificate of courage” drawn by my nephews, which I even got the surgeon to sign!

And the icing on the cake: this episode, which improved my health, helped defuse my terror of hospitals, thanks to the kindness of the medical staff.

I felt reassured in my role as a champion, in the one-lung category.

I was in top form during the discoveries of Cancer 2 and Cancer 3.
Huge slaps in the face!

“I’m the girl who gets cancers. Usually, people catch colds, the flu, stomach bugs… Me, it’s cancer…” I found these words full of distress in a Word document while cleaning up my computer.

Ms. Psy, who was helping me cope with The Return of the Beast, episode3, told me she heard a lot of sadness in my words and spoke to me about grief…

Information about long-term effects, received during follow-up consultations and at Les Aguerris conference, shed light on why the cancer had returned, but also pointed to other potential risks.
I became aware of the threat at a time when I was struggling to rediscover my zest for life. I no longer knew where I stood. I felt changed. I was groping around and couldn’t find my way…

It couldn’t have been easy for Mr. Not-Yet-Ex either: while Cancer 2, denial obliges, had caused little turmoil in our relationship, the shadow of Cancer 3 still loomed two years later. I couldn’t explain that thing that I didn’t understand myself, and Mr. Not-Yet-Ex said I was playing the victim. Incomprehension on both sides.

It took a few years to process it all: it meant accepting the idea that the illness would always be a part of my life, and that was far from easy. The illness was nothing but bad: pain, fear, sorrow, awful memories… Who wants that in their life? And me, who so desperately wanted to be “healthy,” in a way, I felt like a failure.

If resistance is what reveals how trapped we are by our thought patterns, then the bars were thick and sturdy… But things started to shift when I approached the question from the perspective of “HOW MUCH SPACE am I going to give it?”

By refusing to accept the idea of illness, it ended up taking up all the space…
Perhaps the solution was there, and the answer depended entirely on me.
So I chose to give it a very small place. With that, serenity set in.

So? Ill health or good health?

That’s the paradox for survivors: cured, yes, but…

I was cured at a time when the long-term effects of treatment were not yet known, and I was lucky enough to enjoy a long period of being “cured” without questioning anything, before the “but” started causing trouble. Now, new generations of survivors hear about late effects as soon as they are declared cured. It’s a different journey. I’m not sure I envy them…

What is certain is that I am alive. With one lung, no thyroid, almost constant widespread pain and fatigue, but in pretty good shape, actually.

My health is what it is, and I take care of it. I would describe myself as “medically vulnerable” and now I have health insurance!
The disease may return, but it does not define who I am or what I am.
First and foremost, I am alive, and that is what matters most.

[1] This is a status that allows, in France, that every consultation – every exams are covered totally by the health national system

Sabine Heinrich – a patient from Les Aguerris, France

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This testimonial offers an incredible insight into several recurring issues encountered during our long-term follow-up consultations…

Recovery… ultimately, what is true recovery? Recovery can be defined as the complete disappearance of the symptoms of an illness, condition, or disease, or the consequences of an injury, with a return to one’s previous state of health. However, it is entirely legitimate to question this very definition in the case of CAYACS, given that it has been demonstrated that this ‘return to the previous state’ is rare, if not impossible. Can a CAYACS patient be considered cured when they have undergone major surgery with functional sequelae? If not, which of the few survivors can truly be considered ‘cured’? How to take into account the psychological effects on these survivors who are physically ‘recovered’?

This issue can be broadened to encompass current debates on the appropriate methods for long-term follow-up, which must satisfy both physicians seeking to detect potential side effects at an early stage and survivors who wish to visit the hospital as infrequently as possible. The anxiety caused by the various tests, the notion of being free from illness but still under monitoring, and the need for regular check-ups that constantly remind CAYACS of their past illness can be significant barriers to a return to as normal a life as possible. However, as described in the testimonial, a complete absence of tests and follow-up can lead to underdiagnosis, and a ‘shock’ if side effects do arise.

One of the key points raised by Sabine here is also the concept of success. Many survivors speak of a strong pressure to succeed at “everything”. As Sabine reflects, this pressure may be less about success itself than about not wanting to disappoint, or feeling a sense of responsibility toward those who did not survive. This also ties in with the idea of minimising the burden on their loved ones as much as possible, as if the fact of having been ill, of having relied on their family for support over a period of time at the expense of family life (siblings, parents as a couple), had to be made up for during the period of survivorship.

This burden does not fall solely on the family present at the time of diagnosis and treatment. As Sabine describes, it can persist throughout the survivors’ lives, dictating the schedule of various follow-up appointments and even leading to a new illness. Then comes a time of mutual misunderstanding, ignorance, and guilt at placing the weight of the sword of Damocles or a second diagnosis upon loved ones present during adulthood.

Thus, Manuel’s response to Sabine’s opening question seems more than legitimate: do you feel ill? Yes, of course. I can be both healthy and ill, or ill but in remission…

Amandine Bertrand – Pediatric Onchologist at Centre Leon Berard– Lyon, France

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The long-term follow-up period is marked by a particular form of complexity and ambivalence.
One may have been ill, then in remission, and sometimes considered cured… and yet, the follow-up continues.

After going through such an ordeal, it is easy to imagine wanting to distance oneself from hospital appointments, medical tests, and ongoing monitoring: “now, just let me live.”

There can be a desire (or even a need) to show the world that one is cured, that one is doing well, that there are no longer any complaints. Yet we now understand that this is not necessarily what patients truly feel.

One may have reached a stage of medical recovery without feeling fully recovered.

In this context, the space offered by long-term follow-up takes on its full meaning: it allows individuals to put words to what they are experiencing, to express feelings that may be difficult to share with loved ones, and to be heard in the full complexity of their experience.

This perspective echoes what Sabine’s story so powerfully illustrates.

What Sabine’s story illustrates is something we increasingly acknowledge in medicine: survivorship is not a binary condition.

From a strictly medical standpoint, a patient may be in remission, with no detectable disease, and yet live with significant long-term consequences of past treatments. This reality does not fit neatly into our traditional definitions of “healthy” or “ill.”

In practice, we sometimes describe this situation as one of medical vulnerability. But this is not about being defined by illness. It is about living with a body that carries its own story — a body that may need care and attention at times, while still allowing space for a full and meaningful life.

This is not something fixed. It can change over time, as each person gradually finds their own way — learning to take care of themselves while continuing to move forward and build their life.

This perspective also invites us, as healthcare professionals, to rethink our role. Rather than assigning a status, our responsibility is to support patients in navigating this in-between space — where uncertainty, resilience, and identity continuously interact.

Dr Charlotte Demoor-Goldschmidt. Survivorship Medical Doctor expert – Radiotherapy oncologist. CHU Angers, CHU Caen, Inserm U 1018, France; and Louise Hinckel. Psychologist in the survivorship unit, CHU Angers, France

Read more articles from the Healing in Two Voices series