Open Space
Interview with Gabriela Fonseca, blogger and promoter of project "Cancer, the Story that unites us".
Speaking with Gabriela was more than a simple interview. It was being present, being moved and learning a lesson in each sentence, from someone with remarkable experiences and who, with immense generosity, wants to pass that message on to others.
The informality of this interview might seem strange to you; with Gabriela everything is simple, informal and relaxed. And there are no taboos or prejudices.
During this interview, we spoke a little bit about who Gabriela is, what led her to create this and other projects and also about this exhibit, which presents 12 women 12 who have cancer and who reveal their wishes for2019.
I would like you to talk a little bit about yourself, your life journey.
Gabriela Fonseca: Let's see, I'm 27 years old, I will be 28 on Saturday and I was born in Guarda. When I was 18, I thought I wanted to be a lawyer. I went to Oporto, but soon realised the Law wasn't for me, so I moved to Aveiro to study communication. Then, I started working in Communication and, long story short, at 25, when I moved in with my boyfriend, I was diagnosed with a Burkitt's lymphoma.
Would you tell us what that is, for those who don't know?
Gabriela Fonseca: It is a lymphoma, cancer in the lymphatic system, one of the most aggressive lymphomas, because it grows very quickly. In my case, it was already affecting the spinal cord. This happened before the Easter of 2016, I arrived in Guarda on a Thursday evening, and I felt a lump under my right jawbone.
It was sudden, then?
Gabriela Fonseca: It was. All of a sudden, I touch it and felt it, but one always thinks it's nothing. My tonsils had given me my share of problems, so I didn't give it much thought. On Easter Sunday, it was huge, but it was a special day. Then I had a biopsy done and it was all very quick. There was no such thing as a response time, you can't even process it. Second of all, you want to know everything, but no one can tell you a thing. No one says to you, I'm going to save you; news only get worse as the days go by. In my case, I put my physical appearance in question, it's normal in cancer, I questioned fertility, I questioned the treatment...
And how was that process?
Gabriela Fonseca: I went to do the biopsy and the doctor tells me it could be either bacterial or oncological, and I never believed it. I was 25 and, seriously, at 25 you don't think about dying, you think you'll die at an old age. When I got the news, I didn't know what lymphoma was, but the Doctor said I had Burkitt's lymphoma. I say this and it may seem very poetic, but my dreams just crumbled. At that moment, I felt the whole world collapse. It wasn't a “Why me", it was "Why now?" At 25, you have your whole life ahead of you. I should be thinking of other things and now I was going to be fighting for my life. Then the doctor – I was at a private hospital – transferred me to the University Hospital of Coimbra. I found out on a Friday, on Monday I was at the hospital, where my haematologist tells me "we have to cut your hair and we have to do a PET scan and we need to conserve fertility. All of this, right away. I usually say that I don't remember half of what she told me, but those points stuck with me. I can't remember, I just can't. And life went on. I cut my hair. It was the first time I did it... Society is so informed on these things that I get to the hairdresser and say: "I want to cut my hair." And the hairdresser says, right away: "Please, your hair is so beautiful why do you want to cut it?". Today, you can say it is in style, a few years ago it wasn't. You have to explain to the hairdresser why you want to cut your hair. I was still a bit out of myself. I was afraid of closing my eyes because I was afraid I wouldn't wake up. The first night I slept at the hospital was rough. I was still out of myself. A lot of information, too fast. What I conclude is that there are people who have time to process and I hadn't had time to process the notion. And people demanded a much more proactive attitude from me. I was 25 years old, don't tell me you have the maturity that requires. You just say: "what do I do now?" I had never been in the hospital, for example. After that, my hospitalisation was really bad, I didn't want to face the disease. I was admitted to haematology. I would leave my room and see sick people, people with masks, and I didn't want that for me. "Those people... Those people are patients. They're sick. I'm not sick." I didn't even want to be treated. You think of so many things... I felt good. I felt a lump. I was feeling better. Then the treatment starts and, on the first day of the first period in hospital, I start seeing someone I didn't recognize, an isolated person that wasn't me. Someone who was really down low. And you start thinking, how do I want people to remember me? I start giving in to the disease. The first hospitalization lasted 7 days and I realized that I was giving in to the disease. I'm lucky enough to have my boyfriend, who was one the strongest people throughout this whole process.
When did you change your attitude?
Gabriela Fonseca: Before trying, I had one of those clicks and was left with the certainty that my attitude had to change. I realized my attitude had to change when I went home and woke up. I had a very complicated chemo treatment. I didn't get nauseous, but I would wake up in the morning and see strands of hair on the pillow. And that's one of the worst things. You realize: "I'm sick what now?" My boyfriend wanted to shave it, but I didn't think it was fair, so I left the house and went to shave my hair off, alone. I went to a hairdresser, one that was used to these situations, someone had told me, because I wasn't up for explaining it again. The sound of the machine makes you shiver. It was in that moment. "This is depressing enough. Don't make it even more. And from there, I opened the way, and when I saw my hair shaved off I didn't think I was that ugly. But I thought: "When I walked in, nobody noticed, but when I leave, everyone will realize that I have cancer. Because the problem with cancer is that it lives off images. That's why I did this campaign with images. Because that's the problem with cancer. I give motivation lectures and many times I say: "You see a bald woman and a bald man. The man, you can't be sure, but the woman, it can't be style, you know it's cancer." And when I walked into the hairdresser, I understood that I was going to admit I had cancer. Admit in what way? From the way it is looked at, people even call it "the bad disease", and it's called cancer. The way so many are diseases are called. At that moment I was better, I started knowing people, I started opening up. If I told you I cried in every one of those hospitalisations, which were 8 and every time I closed my bag... But, it was my life, my routine. The last treatment was at the end of May and in August, when I did a PET scan, it showed that I was "clear" of stage 4 lymphoma, you understand the fight was worth it. But what happened was that my body was getting weaker and weaker. And you get to that point where you have to be mentally strong. When doctors say 50% is up to the doctors, the other 50% is up to the patient, that is really true. There was a time when I would go to the hospital every day to see if my levels called for more chemo and they didn't. You endure the treatment, now you expected your white blood cells to be strong. In August, halfway through the treatment, I was clear and I had to continue the treatment until February. And after August, my body was already weak, cycles would take me very long and you need strength, because it's frustrating, going to the hospital and coming back home. I had a lot of transfusions done just to get by. It's an exhausting process, it's very demanding. I usually say that I look back and there isn't a bigger test in life than fighting for life itself. I'm lucky, there are people who fight for work. I didn't, I fought for my life and that is not for everyone.
And the blog?
Gabriela Fonseca: The blog emerged later, in October of 2016. I was spending a lot of time at home and I was very weak and emotionally hungry. I became obese because I was mainly hungry. I'm the opposite of almost all cancer patients and what happened was I needed to do something. I had a Degree in Communication and I thought people said my attitude wasn't very normal, that I had too much of a positive attitude, a life as normal as possible, until I thought... If I can do all this, I need to do something, because, I thought, things happen for a reason, otherwise, why did I have cancer and the next person didn't? Maybe they even lead a much less controlled life than I do. So, I wanted to do something and had the idea of creating a blog, out of nowhere. I spoke to my boyfriend and said: "What do you think?" And he said: "If you feel like it, sure, but are you aware of the exposure?", and I said: "If I start a blog I want to show it all, because if cancer didn't take away your hair, people would just be walking around. There are cancer patients that you see, who are bald but have hair, wigs, you see them all happy. There was a point where I didn't recognize them. I created the blog and it has accompanied me on this mission. I usually say that I have a mission and this is it. The blog started from the moment I found out and describes all my phases.
What did you want to show?
Gabriela Fonseca: I wanted to show the word hope. Cancer is a word, like many other diseases. It doesn't have to be linked only to death, pain, suffering. No, cancer is one of the greatest proofs of love from those around you. It is one of the greatest fights you will have in your life. It can bring so many good things. It's like a filter you have around you. People don't see it. It's like a painting, each person interprets it their own way. The problem is we always interpret cancer the same way. I give motivational speeches and when I say, "Let's talk about cancer", the room goes silent. We're starting a moment and that isn't the way. And intends to do just that, to demystify. Cancer patients don't only suffer from the disease, I was also a victim of prejudice.
Can you give us an example?
Gabriela Fonseca: Yes. I never wore anything. No scarf, which is immediately associated with the disease, wigs not a chance. The only thing I used was a cap on the street when the sun was out and a beanie when it was cold. But I would take them off when I went inside a building. Just normal, let's say you go into a restaurant, you take it off. It wasn't about making a statement or taking a stand, I just acted normally. Okay, I was bald, I always had that attitude, but the only person I cared about was my boyfriend, who continued to sleep with me. If he was comfortable with it, maybe I would have used it. But I don't think sacrificing yourself for society is fair. I think many people don't admit it because they're afraid of prejudice. I walked into a restaurant, and that happened to me a lot, and I would take off my beanie and you should see the look on people's faces, the pity, the: "did you see, did you see?" And some people even said to my boyfriend: "a sick girlfriend is a girlfriend forever". My parents live in a tiny town, in the countryside, and some people actually thought I had passed away. But that doubles our life. Several people distanced themselves because I had cancer.
Why you think that is?
Gabriela Fonseca: I think people turn to clichés, such as: "don't think about it and you won't suffer" or they don't know how to deal with it, or they believe it's like measles or chickenpox. Some ridiculously go as far as thinking it is contagious. People don't understand that someone who is healthy can be a hazard to someone who is sick and not the other way around. And because you represent death, negativity, you represent what people are afraid of. And so people would rather stay away. It happened to me. People made their decision.
Did you also have good examples?
Gabriela Fonseca: There was a point, where all my friends were crying and I was the one supporting them: "Calm down, let's stay calm, it's a lymphoma, but let's stay calm.", it's hard for everyone... It's the age. I usually say there isn't a right age to have cancer, but we had just finished college. It's weird. That's the thing. Some people come into your life after cancer and that is also very good. You have examples, you realize that, little by little, they did it, and you will too, and I believe that. I had one life and now I'm on my second life. Because I changed a lot. I'm more aware, today I live, whereas, in my past life... You worry we don't pay attention to emotions; my boyfriend says I became annoying. It's important to tell people you like them because you never know what can happen. You lost time. Little things, dinner with a friend you haven't seen in a while, wasting two or three hours with someone on the phone, committing yourself to causes with no financial benefit. I believe that the little things – It's a cliché but I believe it – are what makes the difference. I give more privilege to emotions, to the projects in which I am involved and that I believe will make a difference. I usually say that, in this exhibit, for example, you go into a hospital to visit someone, to get news, for whatever reason and you look around and you start reading the captions and you see that every one of us has had a difficult story, that we are there without the typical cancer picture, which black and white, bald and with a sad look. We shatter taboos, prejudice and dogmas, which deeply irritate me. I also lost my patience, cancer took away some of my patience.
Where did the idea of an exhibit come from? - Did you know the people already?
Gabriela Fonseca: I have the blog and, every year, I work with an institution around Christmas time. It's been a little slow now because I don't have time for everything. And I have a show on the radio called Hora de Mudança (Time for Change), where I interview several people. And I interview one of people responsible for the Fund. And I started thinking about what I wanted for 2020. And what I wanted is what wanted before the cancer fight, love and happiness. What you truly wish for is what any cancer patient wishes for. And what I want to launch again. So I hired someone, then someone else, who brought another person. And the 12 of us got together12 months of the year. The Campaign started on the digital channels and I thought that wasn't enough, so, together with the Fund, we decided to go from the north to the south of the country.
What was it like speaking to these women?
Gabriela Fonseca: Some of them already knew about the blog and knew about these projects. The good thing about cancer is that it brings you some great people and everyone says: "yes, yes, of course, let's do it". We all talked about this exhibit and took it as far as possible. The union, the story that unites us, there is a true union. Once a cancer patient, always a cancer patient, and you have to be grateful. Gratitude is paid when you're alive and we have to be thankful for being alive, and this is my way of showing gratitude. By creating something that is going to change the life of the next person, who is most certainly going to suffer a little less. If there is one thing that makes me happy is receiving messages from people reading my blog while undergoing chemo. The message is reaching those it should. A year ago, I did a project at Acreditar, and I wanted a girl. The parents thanked me, she didn't have cancer and the parents thanked me. She was 7 years old and it was a way of telling her about cancer. And that's been my life.
Will the exhibit travel all over the country?
Gabriela Fonseca: It started at the Faculty Hospital of Coimbra where I was treated, and now it's here. It will then go to the Hospital of Guarda and to the Porto subway. It's already in a few places that I didn't expect, in big hospitals. My big goal is to take it to the IPOs.
What is your message and that of the women that participated??
Gabriela Fonseca: I usually say a picture is worth more than a thousand words. So imagine what 12 will say. All of them have a different story. And we did a presentation where the 12 of us tell our life stories.
"Cancer – the story that unites us" Exhibit
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Ana Bee [CURE]
Gabriela Fonseca: Ana had breast cancer, she still doesn't have one of her breasts and she has no problems admitting it. She didn't have it reconstructed and she appeared in a campaign where she is naked without one of her breasts. Ana got really into reiki and therapies and that's why she chose “Cura” (Cure).
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Inês Ribeiro [JOY]
Gabriela Fonseca: Inês has a different story. She didn't lose her hair, she did a different type of chemo, and she didn't go through the "Am I going to die or not" phase" She is also the youngest, she's 23 or 24years old. Different energies. She's a girl, she's still the smallest. And there's something worth mentioning: besides myself, Inês and Marta, all were left by their husbands.
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Isabel Arcanjo [SHARING]
Gabriela Fonseca: Isabel is a lawyer and a very confident person. She had breast cancer. She doesn't like a lot of exposure, though. She shows her face, but she stays in her corner and doesn't like the limelight.
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Isadora Lum [LIFE]
Gabriela Fonseca: Isadora was supposed to be here today. She has a contagious energy, although she had quite an aggressive cancer. She almost had her two breasts removed, she lost her hair and she still has one surgery to do. She is a photographer. She has this energy, the best energy I have ever felt. She lived with her boyfriend for 8 years. He left her at IPO for her treatment and has been missing since then. But she's doing very well.
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Margarida Santos [SMILE]
Gabriela Fonseca: Margarida is that person that has a certain way of being in life. She had two cancers. She got rid of one and another one appeared right after. She had one lymphoma, all right. She has two daughters. One of them is an infant. She responded very well to the first, but after finishing one fight knowing you have another... Her husband left her with her two daughters. And with nothing else.
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Gabriela Fonseca [LOVE]
Gabriela Fonseca: This is me. Because love was very important. Love cures. Everyone looked afraid of me dying. My boyfriend didn't. He was that one person that said: "This is something to beat". Love was very important, and besides self-love, I never stopped feeling beautiful. I was at an interview this morning and that was the secret, I was able to see beauty in someone bald and fat. I never ate so much in my life. I fought for what I believe in and I hope this helps. Not just those who go through the disease, but everyone, after a day at work, thinking "God, how boring", but they think: "But maybe I have it all" or not, and they get out of there and be happy.
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Margarida Vale [TRUST]
Gabriela Fonseca: Margarida is connected to writing, she expresses a lot by writing what she feels. It's a different age, a different maturity. She looks at it in a different way. She is someone connected to the words she conveys.
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Marília Pereira [FULLNESS]
Gabriela Fonseca: Marília is a pharmacist. She started doing voluntary work. She works at the Liga but can't go into the Hospital. She stays at the Liga.
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Marta Machado [PEACE]
Gabriela Fonseca: Marta is one of the most special people in my life. I had just been diagnosed, I was doing fertility preservation and I was crying. And Marta heard my story and said: "I'm here, 5 ago I had lymphoma and I was treated by your doctor", so I could see the light at the end of the tunnel. I want to be Marta in other people's lives. If Marta hadn't been there, I wouldn't have had a hopeful voice. And here you have 12.
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Paula Patuxa [HAPPINESS]
Gabriela Fonseca: Patuxa is someone already involved in causes. Every year, she makes a calendar that involves a cause. Improvement of Oncology Hospitals, for example. This year she did the Amélie project.
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Sandra Lucas [CREATIVITY]
Gabriela Fonseca: Sandra. She is part of the iMM Laço Fund. She has an untreatable form of cancer. But she is doing just fine.
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Sónia Leivião [LIVE]
Gabriela Fonseca: Sónia is a psychologist at an outpatient hospital. One day, it was her turn. She is still a psychologist there. And now she understands.
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They are all strong women.
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Women that found strength that didn't know existed?
Gabriela Fonseca: Exactly. They discovered strength they didn't know they had. You find inner strength. In this exhibit, we want people to walk, read and interpret. When you go to an art exhibit, you have your opinion, each person takes home the message they want. That's why we each choose different words, but they all make sense, and if you look at one of them maybe it could be something that makes sense in your day. All of them have a different message, each person reads it as they wish, or they see all of them the same way.
Is there any message you would like to leave? For cancer patients or who have friends or family in that situation, or those who know that they will one day go through something similar.
Gabriela Fonseca: Whether you have cancer or not, the main thing is to hang on to life, living, not surviving, that's the big message.
Thank you.
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Sónia Teixeira
Editorial Team