Dare life – Nicole accepts the transformation of her body

My name is Nicole, I am 76 years old, I worked as a nurse and I lived in the Lyon region.

In 2005, I was diagnosed with endometrial cancer. The protocol was removal of the uterus with lymph node cleaning and radiotherapy sessions following. Once the treatments have been completed, I resumed my work and seven years later, I have the thigh which doubled in volume. It happened suddenly.

I didn’t understand anything

I get in touch with the attending physician and he speaks to a specialist. So the specialist doctor said to me: ” You have a lymphoedema and that’s it“, Without explanation from him. Finally, telling me that there is no possible care in the Lyon region, but it still gives me the address of a physiotherapist who will teach me to do the bandages of the toes. Honestly, I find myself towards my car with the keys of the car in my hand saying to me: ” I didn’t understand anything she told me. I didn’t understand anything she told me, that’s it.«

So, I make an appointment with the physiotherapist, a few days later, which explains to me how to make the bands of the toes. Honestly, I didn’t understand anything either because my toes are normal. There is no difference between the toes on the left and the right. I said to myself: ” But there is something that is wrong. So, I inquired and went to consult in a skills center. There, it did not go very well because I did not have very clear explanations.

Finally answers to my questions

There was absolutely nothing to offer me as serious care, in fact. So, I went for a treatment for three weeks because we had nothing else. Fortunately, I learned a lot about this pathology, what to do, how I could act. That’s what was interesting. Finally, I had answers to my questions. It was almost magical.

We meet a lot of people who have very personal experiences, but it’s really interesting to listen to them. I learn that in Germany, they are efficient in the management of lymphoedema. And with my attending physician, we make a request that has been refused by Social Security. I dispute the decision, I am summoned by an expert and he gives me the contact details of the Cognac-Jay hospital. This is how I find myself for a consultation in this hospital.

Learning autonomy

The doctor, the head of service, confirms the diagnosis of lymphedema, tells me that care is possible in this hospital. And I am registered for a hospitalization of two weeks. During this hospitalization, I am explained to me that lymphoedema is a chronic pathology. I am explained that lymphedema happens after cancer, lymph node cleaning and radiotherapy. That is to say that the lymph no longer circulates. This is what causes edema throughout the leg.

And there, for two weeks, in fact, I am entitled to multi-layer bandages produced by the physiotherapist, but the physiotherapist too, in turn, tells me how to make bandages. Because in fact, the care of lymphoedema is to reduce the volume, these are multi-layer bandages and to maintain the volume, you must wear suitable compressions that we will have to renew regularly every three, four months. So, it is important to have this information, to master the material used and to know why we do that, in fact.

I come out of this first reassured hospitalization because edema has decreased. He has not completely disappeared, but I still lost a lot of volume on my leg. I tell myself that by continuing home care, I was given tools so that I get in motion, that I find this autonomy a little. This is what allows me today to have a leg which has clearly decreased the volume, which has found a little flexibility and which allows me to have an active social life.

Share my experience

I still ask myself a lot of questions and, ok, I have information, I have tools, but for me, it’s still a little incomplete anyway. In fact, I am told that I would always have this big leg, that it will not disappear. And I, in this, what am I going to become?

It is during the second hospitalization that I listen to the news and I learn that there is a possibility for people who have a chronic pathology to train in universities of patients. Back home, I inform myself. I learn that alongside my home, in Grenoble, there is a university of patients. I contact and I do a first training in the therapeutic education of the patient.

In fact, it is helping people on a daily basis, and giving them tools. It is always informing, training, giving tools so that the person, whatever their pathology, they find a certain autonomy. As a nurse, I worked in psychiatry. I think that in psychiatry, we help people, after their hospitalization, we teach them to resume a daily life … The therapeutic education of the patient, I did without it being called the therapeutic education of the patient.

I also participate as a patient-teaching at the patient pole in Lyon college and I find it very interesting to train future doctors in these chronic pathologies. It seems to me that they have an important role so that people like me, but with other pathologies, are observing in their care. The way we will communicate with them, it will have a significant impact on the relationships they have with patients. It is this experience and this experience of patients who needed information, who did not have it and I hope to transmit to the future health professional.

The training allowed me to put this pathology a little away. Ok, I have a lymphoedema, but I can live next to it, I can have activities, I can resume studies, I could possibly rework, but my age does not allow it anymore.

Let go

In 2014-2015, I joined the association of patients because it seems important to me not to be isolated. I need to confront and hear other people from people. What I find in this association is friendship is benevolence is support. This may be what I missed at first, which I try to transmit to other patients, other people, other members. I help the others, but the others help me too.

At the association level, we have this project: oare not going to talk about lymphedema like: ” My poor lady is very sad what happens to you“. No ! I have a lymphoedema, but I want to show it, I want to live with it. We addressed a photographer who made around twenty photos of members. These people, they dared to show their arms, their legs. The objective of these photos was to show the public that lymphedema exists and that even with this pathology, one could be in motion.

Today, even if I have agreed to have this lymphoedema, I still continue to have active care. Yes, I’m 76, ok, but I’m not going to stop. In fact, I am always looking for and I question for simpler, more suitable things that would make our lives easier for us, patients who have a big leg or a big arm.

I never let go.