Patient testimony – PHILIPPINE DE MEHERENC, mastectomy, axillary dissection, chemotherapy, radiotherapy in 2017/2018

THE DISCOVERY OF THE CANCER DIAGNOSIS

For me, the discovery of the cancer diagnosis came in two stages. I identified a mass in my left breast, a small one, and out of a sense of awareness, because we are told this everywhere, I went to see my gynecologist, I told him: “Well, this is strange”, I preferred not to hang around and see what it was. My gynecologist, who has an ultrasound machine, looked at it and said: “It’s nothing at all, it’s a cyst, don’t worry about it” and I left calmly and happily. And then after a few months, I saw that it was growing and that there was obviously a second one. So I went back to see him and he told me: “No, I don’t think it has really moved, but if you are really stressed, I will prescribe you an ultrasound mammogram”. And so I went for a mammogram, but I had known for over a year that there was something there and it was bothering me. And at the mammogram, and at the ultrasound, I understood from the operator’s face that there was something wrong.

THE CONSULTATION

It’s weird because it’s a very good memory. It wasn’t a consultation to announce a diagnosis, I already knew that there was something, that obviously it wasn’t great, so it wasn’t a consultation to tell me that there was bad news. It was more like a meeting: are we going to be able to be partners in this case, are we going to prepare the championship together, like a sports coach, are we going to get along? It is a consultation that I remember very well because I met Dr. Saghatchian whom I did not know, I saw his smile which is extremely communicative and warm, I discovered someone who is very straight to the point. I don’t know if she does this with everyone, but in any case she understood that I needed and wanted this. So, it was a bit like if we had signed a pact, I remember leaving this consultation saying to myself: “Well, between the two of us, we are going to succeed, we are going to manage to overcome this thing”, and at the same time, it lasted maybe 20 minutes, during which I cried, I laughed, we exchanged jokes and we said to each other: “Yes, this is going to be a hard year, but if everything goes well, in a year we will move on to another story”.

So, I talked about trust very directly at that first visit, saying: I can’t stand being infantilized. There are several ways in which doctors talk to patients, I think they also adapt to the patients, but in any case, I observed several of them with the approach: “we’re not going to tell you too much if it’s serious or if it could even be fatal, we’re especially not going to tell you, because that way you’ll keep your spirits up until the end”, that drives me completely crazy. I feel that it is my life and that I have the right to be considered as an adult to whom one tells things. I also find that we are better armed, that is to say that when someone tells you: “No, don’t worry, it won’t hurt” and then it does hurt, you don’t trust them anymore. I can’t stay in a lasting relationship under these conditions. Therefore, in a direct and probably even a little abrupt way, I put this in the first visit by saying: “Here, I need someone who tells me as we go along where we are, how it will go, if it will be very painful, tell me that it will be very painful but at least we work together, and we move forward.”

It’s not easy, many people can attest, to go from having a normal life one day, you have a life like everyone else and so on, and then you’re sick. In relation to yourself, in relation to your relatives, in relation to your job, in relation to many things, suddenly there is this kind of new situation, and therefore the question of truth is: “Where am I, where do I stand, what is going to happen to me, do I still have any freedom in this and what is it? Because this label of sickness, I did not choose it, it is imposed on me, so what freedom do I keep? At least the freedom to situate myself, to understand what is happening and to choose the relationship. If it hadn’t been for Dr. Saghatchian, I wouldn’t have come back, I would have gone to see someone else.

THE CHOICE OF TREATMENTS

My competence in terms of choice of treatment is very clear from the start, it is exactly zero or a little less. So, right away, from the first visit and as there was already a fairly detailed biological report, Dr. Saghatchian said: “this is what treatment protocol seems appropriate”, and I didn’t argue with anything.

TREATMENTS

As we speak, it’s been a year since the diagnosis. It’s not quite over, and it’s long. First there was the operation, so at the end of August, I had a mastectomy of my left breast; a month later we started a first chemotherapy treatment with four cycles of Heksan, which is tough, and then after that, twelve weeks of another product, Taxol, with other kinds of side effects, and then after a little more than a month of radiotherapy, and then injections of another product, Herceptin, which continues until the end of the year: that’s a long time.

Everyone says it, the paradox of this disease is that we are doing very well, I didn’t feel any more tired when I was told I had cancer than I did ten minutes before, it didn’t change anything. It is in fact the treatments obviously that make daily life more and more difficult. And the relationship with your body, it’s not that it becomes an enemy, it’s a tool that doesn’t work well. I’m going to stay with the sports metaphor, that is to say that my point is always: what inner attitude should we have to get through this wave and then the next and then the next? Depending on the moment of the treatment, we are able to see very far ahead and say to ourselves: “In three months, we will be at this stage”; or we are able to say to ourselves: “Let’s try to get through the next five minutes”, it’s very variable

THERAPEUTIC COACHING

When I say that it is like with a sports coach, there are all the dimensions, there are moments when I frankly hated her, but like you hate your coach, because he tells you that your results are not good, because he makes you do exercises that bore you. You go through all kinds of emotions during those weeks, it’s so long, so-long.

I know that at certain moments, I needed Dr. Saghatchian, with her experience and her words, to continue to tell me: “But you know, we’re going to get there, we’re at such and such a stage, and we’ve come a long way, so it’s going well, we’re in the right place, we’re going in the right direction”, even though the fact that she was telling me this exasperated me. And I wanted to tell her: “But you can see that it’s not going well, I’m a poor thing, you can see that it’s not going well at all. But I needed her to say “but if but if but if!” Because I had chosen to trust her experience and to say to myself: she has seen other patients in the same case as me and if she says that we can get through this wave and that there is something behind it, I will believe her.

AND THEN?

Today for me, it’s difficult to say what life is like after cancer, because I’m still in it. In any case, in my head I am still in it, I am still undergoing treatment, all that is not completely finished, I can’t say that the page has been turned, so… What it has changed in my life, maybe I will say it better in one or two years, I don’t know, today what has changed is this relationship with time, it is a form of benevolence with regard to oneself, to know how to listen to oneself better and to say: “well, today was a nice day, but we won’t feel obliged to do four times more because it won’t work”. It’s also having had this time at home, a relationship with the children that was very interesting, because we had hours of discussion that we didn’t necessarily have in the ordinary week before, and my daughters are at ages, 13 and 18, where conversation counts, and so there is a real human richness in this experience, which I wouldn’t wish on anyone, but in fact there is a real human richness in it. What it transforms in life, I can’t say yet, I’m not out of it yet, and I don’t know if we’re out of it completely.

FAITH

In the first months of treatment, it was very confusing, not in terms of great spiritual questions but in terms of a total inability to pray. I have a great friend who is a holy woman, who is prioress of a Carmelite convent and therefore lives cloistered, who is 76 or 77 years old, and who asked about me and to whom I had written a little note to say that: “I have been unable to pray for weeks. I don’t know how to do anything but continue the next minute. And she wrote back, “But that’s what prayer is all about,” so I probably learned a lot.

You are not less sick when you have faith, it doesn’t protect you from anything, you are not less tired, you don’t have less troubles, it doesn’t help you at all, except for this little thing that changes your life, which is to tell you, in my religion, in my faith, that the Lord is with you, and that you are not alone in the face of the total absurdity of human suffering, which doesn’t make any sense and will never make any sense, but you are not alone in this.

WORK

I didn’t stop completely, I stopped three weeks after the surgery. From September to March, I had leaves of absence at each chemo of a few days, but I really tried to stay as much as possible in the normal life, I needed it at that time. Paradoxically, it made me very tired, and so in the spring, I had a sort of backlash, with a real need to step back and regain my strength because I was exhausted.

At the beginning, I had this idea, maybe it’s a flaw in my character, but that I had to choose: do we work, or do we not work? I tell myself today, or at least I have learned during this year, that you have to adapt, that’s it. And when things are going well, it’s nice to be able to work, and when things are not going well, it’s nice to be able to work too because you don’t have to focus on your problems or on your stories, or on the fact that you are sick. But when things are not going well, you also have to say to yourself: I need to lie down.

The relationship to time has changed, so of course the relationship to work has changed too. And I had to learn to discover how to do it when in terms of energy, we changed our internal battery model. Today, after 4 hours of intense activity, I’m pretty much exhausted, so I have to deal with that, and that’s new.

TALKING ABOUT IT OR NOT ?

I don’t think that many people are happy to hear this kind of news, so it’s true that telling your spouse, your children, your relatives, your extended family, is not nice in fact, because you think you’re going to ruin their day… Moreover, at this point in the process, we don’t know what to say to them, apart from telling them that it’s serious and at the same time that it’s being treated well, and that we’re being well looked after and taken care of, that we’re going to do what we need to do… But then we’re a bit short, so it’s not very pleasant to be the bearer of bad news.

ADVICE TO A WOMAN WHO GET A BREAST CANCER DIAGNOSIS

When a woman gets the diagnosis of this disease, the first thing I want to tell her is to find the right doctor.

I believe a lot in this partnership, I am sure that the doctor who has X dozens, hundreds of patients to see, adapts to each one and so on, but obviously holds an incredible place in our lives. And if things don’t work out, if we don’t feel confident, even though there will be difficult moments, I think we are less well prepared. So, I would like to say: the first thing is that if the human contact is difficult, I would find it smart to go and see if it would not go better with another doctor, which is a determining factor.

And then afterwards, it is not to be afraid to ask questions. The risk is not to want to bother them with our little problems. The problem with cancer is that the side effects of chemo, individually, are a sum of small problems. Each one of them doesn’t seem very serious, but when you add them all up, it makes life pretty difficult. And if you don’t dare to tell your doctor: “my stomach hurts terribly” or “I have migraines that have come back”, OK, it’s not very serious, I’m not going to die from it, but if it’s added to this other thing, this other thing… If you don’t dare to tell him, you don’t give him the means to be this partner and to have this global vision so that we can move forward and say: This is how we will try to do better until the next time.

ADVICE TO A YOUNG ONCOLOGIST

The danger for doctors is precisely to only see the essential, to only see the result. But I was lucky enough to meet doctors who were attentive to this, vigilance means not neglecting what seems to you to be secondary. What may seem accessory to you is that if the tumors have been operated, if the treatment seems to work, if your patient loses her nails or her hair, it’s not serious… In fact, I think that each of us is extremely different when faced with this, there may be things that are more or less anecdotal, which at the time take on a crazy importance… Perhaps the point of attention would be not to treat them as secondary things, if at a given moment in the inner struggle that the patient is going through, they become central, even if it’s not completely true and objective; it’s just in the way of listening to her and welcoming her, that we can help her, once again, to go to the next step.