They were not days at the beach, pool or beach bars. summer from 2023 to Belen Dominguez. Until then, this 31-year-old young woman from Seville had led a normal life: she lived in Madrid, where she shared a flat, and worked. She also went to the gym, went out with her friends, her boyfriend Emilio… All this accompanied by a strange pain in the back It looked like a simple contracture.
In fact, he decided to go on a trip to London for work. “My neck hurts like hell, my hand goes numb and my arm feels heavy…” he recalls in his book ‘Life is beautiful even now‘ (Ink Cloud). Such was the situation that he had to return hastily and in a wheelchair because he was unable to move.
After several tests, he was diagnosed with a grade 4 intramedullary tumor. «I look into my eyes and see myself as I am: a young woman, with my whole life ahead of me. “My life,” he writes. I steel myself and hold my phone in front of me. It may seem silly, but I take a photo to remind myself who I am, who we are, who we will always be. Even in times that are difficult and disheartening, like this.”
Belén has given voice and visibility to her illness, which she has faced with positivity and with the message that, despite the bad times, there is always a ray of light that helps us move forward. He verbalizes it through instagramwhere 152,000 people follow her, and she teaches everyone who follows her what her process is like.
-Belén, I have been left wanting more. I hope that the point of the last sentence of the book is an already part point, not a final point. Your story must continue in a second book! No?
I’d love to. I never imagined there would have been a first, so a second would make me very happy, especially considering the good reception it is having. I am very happy because I receive very good feedback and it is helping a lot of people. So, yes, I would love a second book and one that also had a happy ending.
-You have a tumor in the marrow. What does it consist of? I think you are the only person in Spain with him.
It is a gStage 4 Carcinogenic Diffuse Midline Lioma. It’s a strange case and I think there is another girl who has been diagnosed with it this year. Suppose be left without mobility. In my case, the legs and sphincters. It’s a tumor dangerous that causes a blockage in the spinal cord and affects the nerves. This also implies that the sense of touch is affected: I barely have any sensitivity from the chest down. Touch is a sense that we often think we wouldn’t mind losing but… it is very painful not to feel like you are touched.
-And what has this translated into? I mean, what can’t you do now?
I can’t eat by myself. I need someone to feed me because I can’t hold the cutlery properly. To this day, I can’t walk either. I hope, wish and ask for a miracle to do it again! I don’t feel the hands of whoever touches me, nor the cold or the heat. I’m bedridden. I can’t do many things.
-What is your room like? How do you manage to make a space on the hospital’s neurosurgery floor your own?
I’ve been here for a long time, so I have it decorated with different things, all of them very personal. For example, since I miss the sea a lot, I have a painting with the water of Menorca that Emilio’s mother, my boyfriend, painted. I also have a ‘collage’ made by one of my best friends with the things I like (the Giralda in Seville, the palm trees…). Pictures of friends, photos, images of the Virgin, I am very religious; a photo of all my friends, another of Alejandro Sanz signed; a Pasapalabra drawing that he made for me Roberto Lealmany flowers, which I love…
Also, I have a small altar on the windowsill with several little cards, the Virgin, I am a fan of the Virgin of Guadalupe although I also have the Virgin of Joy, of Fátima...; a collection of rosaries that everyone gives me and that I pray; the support of medicines, little crosses, little virgins, holy water from Lourdes… I feel at home! I also have the bed rail full of tapes Virgin of the Pilar of colors that they bring me… I’ll be about 50. My room is beautiful, very personal. In addition, I have an almanac in which we write down the dates that matter to us: birthdays, physio, date of someone’s operation, saints… It is essential.
«I ask for a miracle to walk again! I also don’t feel the hands of whoever touches me, the cold or the heat.
-How are your days?
I wake up very early and the first thing I do is take communion, the priest comes to my room. Afterwards, it’s my turn to shower: they clean me in bed because I’m a dependent patient. Then comes Miguel, from occupational therapy, to exercise his hands and be able to have a little mobility again. Then, if I feel well, I have visitors and then I eat. In the hospital we eat very early. Ah! Together with my parents and Emilio, we usually listen to mass at 10:00 every day and, if there is time, adoration.
After eating, I rest for a while because my body asks me to and then it’s Vicente, the physiotherapist, with whom I exercise a lot. Then friends and family come… And I have dinner at 8:00 p.m. Then I stay calm, watching a series, talking to the assistants… And, in between my routine, the doctors come to see me, usually in the morning, as well as the nurses to check on me.
-I think you don’t use WhatsApp. Because?
My last entry was on December 17, 2023 and that day, I left WhatsApp. I don’t use it. I leave my phone in a drawer and I only pick it up to make a video and upload it to Instagram because I have such good followers that I have to keep talking to them, upload videos and tell them how I am, etc. They remember me a lot, they write to me, they ask me…
I’m lucky that my parents and Emilio talk to friends and family to organize visits, so I don’t need it either. And I believe that without WhatsApp people live better. I prefer to take advantage of my time with my family, Emilio’s and friends. It is very important for me to have direct contact with them. I listen to the radio a lot from the radio itself, not from my cell phone. I live better without WhatsApp, I think it stresses people out a lot. We live in a world in which we move very fast and we do not stop to think about the most important thing we have: life. I have learned to appreciate it now that I am sick. So Here’s a little piece of advice although no one has asked me: make the most of the time we live ‘face too face’, in person, with our people… we forget.
WhatsApp makes us live fast, respond quickly, be there always… I only use it for very important things. I look around me and people are usually looking at the screen while I am enjoying, thinking, imagining, doing many things that we don’t do with the phone.
My phone is in a drawer. I don’t use WhatsApp, TikTok or Instagram. I only occasionally use this last social network to stay in touch with my community. In fact, I only have the bank application because I have no other choice.
«Without WhatsApp you live better. “I prefer to take advantage of my time with my family, Emilio’s and friends.”
-They operated on you, gave you chemotherapy and now you are in a trial at the Ramón y Cajal, the hospital where they took you from the beginning. What does it consist of?
This trial consists of attacking cancer cells, unlike chemo, which I was taking after the operation, which attacks good and bad cells. My trial consists of taking five pills a week that I combine with immunotherapy. And it is indefinite because depending on how my body tolerates it and the tumor evolves in my body.
-The rehearsal option arose suddenly, you didn’t expect it at all. In fact, you had to choose a palliative center to which you were going to be referred. How do you choose something like that at 30 years old?
It’s complicated. You are supposed to choose a center to spend your last days… but I am a believer, therefore I believe that God has the last word and is the one who decides when you leave. I, along with my family, gathered them together and told them to choose a place where we would all be comfortable. You choose with faith, in my case, thinking that God will continue to accompany you and thinking that there is always hope. In that sense, it is difficult. You have to do some internal reflection and talk to yourself and to God, in my case, because I am a believer. And say: ‘Forward because it is one more stage, even if it is called palliative. I know that God is with me and he is not going to abandon me, whether I am in palliative care or in the hospital.’
-You speak in the book of C and M. You have a lot of faith. You pray. I don’t know if you’re still talking about C and M, if you name the whole words…
Yes, they are a bit strong words and I think that there are people who, by naming them in full, can be affected. I do: cancer and death. I have faith. I pray. I know that death can come at any timeincluding me. I am sick, they have spoken to me about it very harshly. But God is the only one who decides when we leave this world and welcomes us into his glory. I am not afraid of death because I think there is beyond. I am very calm. Yes, I say cancer, death and I keep praying.
-Frustration, anger, joy, sadness, faith and hope, pain… I imagine that all these feelings have accompanied you and continue to do so, but how do you manage them? How does one accept a reality like that?
Acceptance is something that involves having hope, faith and that is complicated, I suppose, but I have no other choice. I always say that whatever depends on you, you have to do everything. In my case, physiotherapy, having a good attitude towards life, being friendly, putting a smile on all the professionals who are helping me…. And what does not depend on me, leave it in the hands of God. It is accepted and that’s it. I have to fight, tolerate the medication as best I can, endure the pain… and what does not depend on me, leave it in the hands of God or luck (may the medication go well, may it have an effect…). The key is to make a list of what depends on you and what doesn’t.
«A palliative care center is chosen with faith, in my case, thinking that God will continue to accompany you and that there is always hope»
-By the way, Alejandro Sanz has gone to visit you, right?
Yes, a couple of times. The first was a very strong surprise for me that my friend organized. Martha Barroso along with his brother Pepe, but the second time was no longer a surprise because I talked to him, he is interested in me, my illness, my family… I consider him my friend. But the first time he came to see me it was a tremendous shock. I would never have expected it! He is my favorite artist. We share confidences, laughs… We get along very well! He tells me his things and I tell mine.
-What do you value most today?
To my family, to Emilio, to his family, to my friends and my faith. I put God first in everything because thanks to him I have everything I have, I am who I am, I have a wonderful medical team, wonderful chaplains…. I don’t have a psychologist. For me, my psychologists are my chaplains.
-And what do you miss most?
Making plans with my friends all together, sharing confidences… because they come to see me but one by one or two by two. Also traveling and the sea.
-What are your family and Emilio to you?
My pillar They have been here since day one. My parents lived in Seville and have moved here. Emilio is with me every day. They are everything. Without them I don’t know if I would have dealt with the disease this way… I guess it’s not even a joke. They support me, help me, sacrifice for me and make me very happy. They are the best thing I have in my life, along with my faith.
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