Julie

Julie
Age at interview
35

Julie used to work in her family’s company but had to stop working when she was diagnosed with metastasized breast cancer. She is single and lives with her 8 year old daughter.

 Julie received her diagnosis in 2010 when she was 30 years old. She noticed a lump in November while she was putting her 2 year old daughter to bed. In December, she consulted a doctor in a local clinic for her daughter’s bad cough and at that time she also informed this doctor about the lump she had felt. He referred her for further testing but when Julie contacted him again she heard that he had lost the results. Julie lost confidence and was feeling worried so she decided to follow a friend’s advice to visit another clinic that specialized in breast cancer. There she underwent an ultrasound and biopsy immediately and was informed on the same day that it was indeed breast cancer. Julie, who was alone when she heard the news, felt confused and in disbelief. Julie’s treatment consisted of of chemotherapy and radiation. After her treatments were finished, she started hormone therapy and took injections to remain in menopause. She was unable to return to her more normal routine while living with the side-effects of the menopause. This is why she decided, together with the medical team, to stop the injections and continued to be followed by her oncologist. During one of her routine visits, her doctor noticed something and asked her to let her know immediately if she started to feel pain. One weekend, Julie found that she couldn’t get out of bed because of pain in her back. That following Monday, more tests indicated that the cancer had spread to her bones, back and hip. Julie has since changed her hormone therapy and started menopause for a second time after surgery to remove her ovaries. Julie has received excellent support from the medical team and she has great confidence in their help. Julie describes living with cancer as a process that started from the moment she was first diagnosed. Being diagnosed with advanced breast cancer means she had to take a different road, and this time she made a conscious and personal choice to work harder on the psychosocial aspects of living with her illness. She is learning to live with the tiredness, pain, fears and anxiety, and she has found a new force and different ways to appreciate her life. She has had to find ways to give a new meaning to her own life, her social life and the way she raises her daughter. At the moment she finds this new place inspiring and motivating. She would like that the perception and fear towards cancer changes. She hopes to demystify cancer so that people have less fear of it and realize that it is possible to live with advanced breast cancer.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

Videoclips

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Recently, I began to do more research on this and also to consult by reference because I don’t want to see just anybody. I started seeing an osteopath since last fall. So the fall… I would say November 2014 and I am transparent about it with my oncologist. I believe that even if we are looking for additional services, our medical treating team must be aware of it. I must be careful about what I do and what I take because I am currently undergoing treatment. I cannot start taking all kinds of natural supplements because I am taking medications. There could be all kinds of counter-indications or things that we are not sure of, thus I am being careful. But I met an osteopath that understands my situation and who maybe helps me to control the pain or, you know sometimes, we have pain but it is not related to cancer. When we suffer from cancer the first thing that comes to our mind is “Ah, it is the cancer”. But after undergoing some tests and all that, then we see that’s not it. But we still have pain. You can consult another specialist and see what can be done, and for me, it’s helping right now.

 

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When I was informed that my cancer had spread to my bones, I was scared. I was really scared. I thought about death. During many months, I had to get use to the idea that death could come sooner for me than for others. That was haunting me a lot at the same time, because the pain was there, it was always there. So this… It intensifies the thoughts when you are in pain. So… It was difficult but I had… And since then, during the past 2 years, I was followed closely by my medical team. They were really able to give me good psychological, psychosocial and medical support to help me go through this. One day you feel anxious and another day you feel angry. Another day, well you don’t think about it. Another day you are tired. You know it is changing. It is changing.

In 2012, I decided to tackle it differently. So I learned that what had happened in 2010, the way I had tackled the sickness, especially the psychological aspect, I decided to change it. This was done very deliberately. Because I realized that for me, psychologically, the work that I had done was not enough. So there, with other sorts of fear, other kinds of anxiety, I tackled it differently. But there is a continuity in all that. It is not clearly divided.

Interviewer: How did you do it differently?

I decided… First, I decided that I was going to take the psychological help more seriously. Secondly, I was going to try to find places to help me, physically or psychologically, some wellness centres. So I found a wellness centre… Afterwards, I was informed about the group for women with metastatic cancer. So, I thought: “I will go see what is there.” I had to find ways that would inspire me and that was showing me how to look at it from another… Not to be defeatist. Because I have a child and it is important for me to see her grow up. So even if I have an advanced breast cancer, I am telling myself that I will see her grow up. So, I have to find ways to feel good despite all this.

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I was putting my daughter to bed and was laying on my side when I realized that there was something strange with my breast. I felt a lump, which was sensitive. Then I asked my partner at the time to have a look at it. I showed it to him. We thought it was a little strange and it stayed on my mind. It was around the month of November. At the beginning of December I went to the doctor with my daughter who had a bad cough. At the same time, I discussed my case with the doctor and said: “I have a lump. Should we check it?” I was 30 years old at the time. And he told me: “Usually when it is a cancer you don’t feel anything, but we will do an ultrasound anyway. But don’t worry.”

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Yes, the fertility subject was a little difficult for me. I didn’t have much time to decide if I wanted to freeze egg cells. I think I had two days. I just had… it was a short time after my surgery; I was recovering from my operation. I had an infection and I think I didn’t even tell my spouse at the time. I didn’t really have time. And he had already told me that we had one child and he was fine with it. But for me, in my mind I always wanted to have 2 or 3 kids. I would have liked my daughter to have brothers and sisters. And finally, very quickly I decided that I wouldn’t freeze my eggs because I didn’t want to go through another kind of process and then… The… When I was reading about the success rate of in vitro fertilization and all that after, it was not reassuring. So I told myself: “Why would I go through this now? I am going through a lot and if I become infertile because of the chemo, well that will be it.”

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Interviewer: Did the healthcare professionals discuss with you the possibility that you would become infertile?

It is a subject that was touched on briefly. It was not discussed at length because I was young and because of the rates of… Statistically they could not guarantee that I would remain fertile, but my odds were good! It was… To remember the discussions that I had, there wasn’t that much. And the people are not addressing this subject very much.

Interviewer: Do you think it is important?

Oh yes, it is important! Because… Having kids, being fertile touch many aspects of your life. And to be fertile touches your sexuality, it touches in… Birth is part of our life, like it or not. We have friends that have kids. You see a pregnant woman! You meet a new partner; will he want kids? Yourself, you cannot have any; will that influence you as a couple? You know there are many factors that need to be addressed regarding fertility. And no, it is not discussed enough.

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Because when the cancer returned in my bones, then I kind of understood that it had become something else. I had not fully understood that 30% of the women diagnosed with breast cancer will eventually have a metastatic breast cancer. I was sure that I was not part of those statistics. So when… and 30% is still huge, and maybe it is even more than 30%. So when you look at all that to understand the sickness. And all that, yes, it is important but… The metastatic breast cancer is something else than stage 1 or stage 2 breast cancer.

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When I was informed that my cancer had spread to my bones, I was scared. I was really scared. I thought about death. During many months, I had to get use to the idea that death could come sooner for me than for others. That was haunting me a lot at the same time, because the pain was there, it was always there. So this… It intensifies the thoughts when you are in pain. So… It was difficult but I had… And since then, during the past two years, I was followed closely by my medical team. They were really able to give me good psychological, psychosocial and medical support to help me go through this. One day you feel anxious and another day you feel angry. Another day, well you don’t think about it. Another day you are tired. You know it is changing. It is changing.

When I am tired, I rest. I do not try to overdo it. There is no pleasant feeling of fatigue for me, but I am still trying to keep busy, but when I am too tired, I rest. And after that I go to bed for half an hour, an hour, and after I am able to continue. When I am in pain, I can also rest or take medication to numb the pain. Yeah, this is the way that I… And of course I talk about it with my doctors, with my medical team. When I have my appointments because “Is it all the time? Or sometimes?” The level and the frequency of the symptoms are also important. So yes, of course I do…

We are now in 2015 and it has been 5 years since my first diagnosis. I know that I will… There is no cure for metastatic breast cancer. I hope that one day there will be one, but I learned to live with it. It was often… It is often difficult. It is also difficult for the people around me because there is uncertainty. I am presently undergoing a treatment, it has been a year and a half, and combined with the hormonotherapy, the fact that I am menopaused, with the type of cancer that I have, which was oestrogen positive, but it helps me. And it has more or less stabilized the lesions, the bone cancerous tumours. Having a child also. My daughter is now 7 ½ years old. It forces me to still have a more or less daily routine, to do things for my family, my child and my home. But all this requires energy. So it is living with this today, it is taming a new daily living.

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I am lucky to have a medical team that listens. My surgeon was the first to give me my diagnosis and I always had a nice relationship with him. He is available to answer my questions and this from the start. So first, I consider myself very lucky for this. And secondly, I feel confident. And to trust your healthcare team is one of the first things I can suggest to someone. If you are not confident, do some research to find people you can trust. By recommendations. I had my oncologist through my surgeon, as well as my radio oncologist. So a team that was sharing was created around me. I knew that if there was some questioning concerning what was happening with me, they would talk together. Because they were telling me: “Ah! I will talk to your doctor.” Or “I will talk to him.” Or “I think he should look at this.” So to know that there is a team working around you, that you are the focus and that they listen to you, it was essential for me. I was lucky to have that, and to still have that, yes. Also the nursing teams in the hospitals are much available and really listen. The psychologist that is following me also. All these aspects bring confidence towards your medical team.

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My daughter was 2 ½ years old when I had my first surgery and I was very honest with her. I used the words that you must use with a two and a half years old, and in her two and a half years old mind she understood what she wanted to understand. Also, I involved her a lot in my care. I had… I didn’t hide my dressings, I didn’t hide my medications. I was explaining to her; she was asking questions and I was explaining to her the best way that I could. I didn’t want my daughter to be afraid of the sickness. So to me, it is important to demystify for the kids that we still can live with cancer. When I was young, cancer for me meant death, but now for me it doesn’t mean that. It is a sickness that I have; I don’t know when I will die. But nobody knows when they will die. Yes, I have medications, I have treatments, I am tired, I have side effects and all that. I have symptoms… And my daughter understands that her mommy lives with that, it is part of our daily life. Mommy is tired and must rest, she respects that. I brought my daughter to radiotherapy treatments to see what it was like. Because I had some in 2010 and also in 2012, and in 2013, so she progressed in all that.  She also learned that her mother could also live with that. It doesn’t prevent me from doing things with her, she understands that. She also understands that her mommy cannot work and that… it may be… it is because of the sickness, so… But I am saying to myself that I am there at least when she comes back from school. I am at home and I am present. I am lucky to have a child that is very autonomous, she is very curious, very lively. I know that it is not the same for everybody. I believe that my daughter also helped me a lot in all that. If I didn’t have a kid to take care of, maybe I would have had a bigger depression. To have to get up in the morning for a child, make breakfast; the child is depending on you. So somewhere the choice is: “I am going through the day with my child or I have to call someone.” And that someone is not available or… So I decided that first I was going to take care of my daughter. I take care of myself too. She understands that it is important that her mother takes care of herself. So we set out our priorities.

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I also understand that breast cancer is very complex because it reacts differently in every woman. Therefore, this has an influence on the understanding of the sickness. It is difficult to understand when you are being told that: “Well, there is this type that is positive, negative, the hormones…”. It comes to a point that, for me, it is too much! Thus I decided to only try to understand what was happening to me and to see how I can help myself. But when I hear people talking about prevention, that we should eat more turmeric, and to do more of this and that, it doesn’t ring a bell. I always had a healthy lifestyle so when I am told: “We can prevent, we can do this, we can do that”, I agree that prevention is important. However we can still be sick, but how come? Throughout the years, I have put this aside. I only learn to do things… to understand how I can help myself with my sickness.