• Auxilio, me estoy volviendo antisocial!

    ARTICULO ESCRITO ORIGINALMENTE PARA LA PLATAFORMA HOLANDESA S&S | UNOS DÍAS ANTES DE MI OPERACIÓN, LLAMO A UNAS AMIGAS, QUIEREN VERME ANTES DE LA INTERVENCIÓN. PERFECTO, DE TODAS MANERAS QUERÍA TOMAR UNAS COPAS CON MI ESPOSO EL VIERNES POR LA TARDE, ASÍ QUE PUEDEN UNIRSE. PERO LA HORA NO LE QUEDA A MI AMIGA AMALIA, POR ESO VENDRÁ EN OTRA OCASIÓN. ME SIENTO ALGO FASTIDIADA… PERO TAMBIÉN ALIVIADA. Y RECONOZCO QUE ESTO ME PASA CADA VEZ MÁS A MENUDO EN MIS CONTACTOS SOCIALES DESDE QUE TENGO CÁNCER. ¿POR QUÉ? ¿ME ESTARÉ VOLVIENDO HURAÑA?

    Huraña, ¿o no?

    Son las tres de la tarde del miércoles. Me acaban de llamar del hospital para avisarme que mi operación queda programada para el siguiente lunes por la mañana. ¡Por fin! Ya la estaba esperando. No tengo nervios, lo que sí quiero es reservar una tarde para pasarla con mi esposo, antes de que empiece toda la hilera de tratamientos. Un viernes por la tarde con botanitas y vinito. Mis amigas Sarah y Amalia dicen que también quieren venir. Solo que Amalia tiene una cita con su personal trainer que no puede cambiar. Pregunta si puede llegar más tarde, por la noche. Para mí eso ya sería algo tarde, y se lo digo. Entonces quiere venir el fin de semana, pero esos días quiero reservarlos para mi familia. Siento un asomo de irritación. Así que algo apenada y algo irritada le digo: “No te sientas obligada, ya habrá otra ocasión”. En parte me siento también aliviada, noto que cada vez siento me siento más distanciada de ella. ¿Por qué será?

    Desde que tengo cáncer, reconozco más frecuentemente estos sentimientos en mis interacciones sociales. No solo con amistades, también con contactos casuales. Por ejemplo, una conocida me envió un mensaje una semana después de mi primera quimioterapia, para ir a caminar. Se trata de alguien del pueblo que normalmente solo me saluda con la mano cuando me ve pasar. Ni siquiera sabía que tenía mi número de teléfono, menos como lo consiguió. También en este caso me sentí incómoda y algo apenada, pero la verdad es que para nada me dieron ganas.

    En momentos como estos pienso: “El cáncer me está volviendo huraña”. ¿Por qué?

    Pero no siempre es así. Tomemos este ejemplo: fui al hospital para una tomografía, esto pasó unas semanas después de mi mastectomía. La radióloga me dice: “Quítate el bra”. Sonrío y la miro, y le digo: “No tengo bra”. Nos miramos a los ojos y continúo: “No tengo senos”. Veo el susto en sus ojos al darse cuenta, pero nos sostenemos la mirada y… nos echamos a reír. Luego me hace unas preguntas: quiere saber cómo estoy y qué me parece todo este proceso. La tomografía procede y el contacto no duró más de 10 minutos de principio a fin, pero salí con una sonrisa enorme.

    Entonces, ¿qué pasa? ¿Por qué dejo que alguien se acerque y a otra persona no?

    Siempre hay una buena intención

    Partamos de estos principios: la gente actúa con buenas intenciones. Y sé que es difícil estimar qué es lo correcto para la gente a mi alrededor. Andan caminando de puntillas.

    Entonces, si sé esto, ¿por qué me resulta difícil tenerlo en cuenta? ¿Así he sido siempre? … Hubo un tiempo de fiestas, reuniones hasta la madrugada, de bailar hasta que duelan los pies. Eso es verdad. Lo que también es cierto es que siempre he preferido tener vínculos profundos, aunque eso signifique menos amistades. Al mismo tiempo, siempre me ha gustado entablar una conversación con un extraño en la calle, eso también es cierto. Pero no con cualquiera.

    Bailando hasta que duelan los pies

    Autenticidad en ‘alto contraste‘

    Esto se debe a que siempre he tenido la necesidad de conectarme con mi entorno. Así soy y espero lo mismo de mis contactos. Desde que tengo cáncer, parece que veo todo a través de un filtro de alto contraste. Concretamente: me he vuelto más sensible a la ausencia de conexión. Al mismo tiempo, necesito aún más esta conexión. La autenticidad se ha vuelto más importante para mí.

    Eso aplica tanto a mis amistades como al contacto con conocidos, pero también con la gente en la calle. Lo más importante es que se sienta auténtico, sincero. No todos los amigos quieren dejar o cambiar sus cosas para acomodarse a mi agenda. Y está bien, siempre y cuando el contacto sea sincero. Personalmente, prefiero un saludo con una amplia sonrisa de alguien que me ve pasar en la calle, en lugar de intentar ‘hacer algo grande y noble’, pero forzado. No queda, se siente incómodo. A pesar de la indudable buena intención. Me parece menos auténtico.

    ¿Qué hacer? Algunos consejos

    Entonces, para mí aplica: menos es más. Me he vuelto aún más selectiva. ¿Es esta la solución perfecta? No, hay un inconveniente: esto me puede llevar al aislamiento, claro. Aún así, es una elección consciente. Siento que esto es lo mejor para mí. ¿Es esto aplicable a todas las personas con cáncer? No, cada quien tiene su propia manera y sus propias necesidades en cuanto a sus contactos sociales. Y lo que funciona para mí, puede que no funcione para otro. Aunque sí hay algunos consejos:

    Para el entorno, los que caminan de puntillas

    1. Pregúntale a la persona (de manera apropiada y en el momento adecuado) qué necesita y como se siente más cómoda. Hazlo sinceramente, eso se siente y es más seguro que te contesten de igual manera y haya menos incomodidad.
    2. Escucha. Escucha de verdad, respeta los deseos y límites. No se trata de satisfacer tu propia necesidad de ‘hacer el bien’, sino de lo que la persona necesite, pueda y quiera recibir de ti.
    3. Sé congruente, si quieres estar cercano a la persona, mantente cercano. Si, por el contrario, honestamente tus prioridades no te permiten mantener el contacto, también está bien, pero no esperes ni fuerces la cercanía.
    4. Ofrece ayuda práctica, como cocinar o hacer las compras. Aquí también vale, lo que sea apropiado y sincero. Por ejemplo, si la persona es una mamá de otro niño de la escuela, ofrécele ir a recoger a los niños a la salida.

    Para los que pasan por algo similar a lo mío

    1. Ten en cuenta que las personas actúan con buena intención. Lo hacen con buena voluntad y es muy difícil para ellos estimar qué es lo correcto para tí.
    2. Sé sincero, sobre todo contigo mismo. Responde sinceramente y sé claro en tus necesidades, deseos y límites.
    3. Sé indulgente. Contigo mismo y con los demás, la perfección no existe.

    Al final se trata de apoyarnos mutuamente de maneras que realmente ayuden. Y eso se puede lograr manteniéndonos en conexión unos con otros. Reconociendo el espacio que hay, sin forzar las cosas. Un gesto pequeño y sincero puede ser la semilla de una gran amistad.

  • La definición del cuerpo

    MASTECTOMIA: PARA MI UNA FACIL DECISION, AUNQUE DE COMPLEJOS EFECTOS. ES QUE AFECTA EL CUERPO, LA MENTE Y EL ALMA. EN ESTAS SEMANAS, MIENTRAS ME RECUPERO, ESCRIBO LO QUE VOY VIVIENDO, ASI COMO VA SALIENDO. HOY QUIERO HABLAR DE LA TRANSFORMACION DEL CUERPO, PERO DE UNA MANERA DISTINTA, CASI METAFÓRICA. Y TAN INTIMA QUE LAS PALABRAS FLUYEN EN MI LENGUA MATERNA.

    read this post in english

    Origen – la explosión interior

    El cambio comenzó en el interior, con una explosión de mis células inquietas, aceleradas por quién sabe que cruel estrés – y la predisposición heredada -. Se desató un crecimiento caótico en mis entrañas. Veloz. Células en pánico.

    Hablé con ellas para calmarlas. Llegaron los pensamientos de amigos desde todas las esquinas del mundo. Llegaron los medicamentos y las terapias. Los bisturíes precisos. El cáncer se retiró. Los pronósticos contemplan su posible regreso a largo o a corto plazo. Yo lo afrento. Espero que no vuelva. Que mi cuerpo se mantenga alerta, sí, pero fuerte y limpio, siguiendo su ritmo natural, libre de sobresaltos.

    Evolución – la transformación exterior

    Mi cuerpo ha evolucionado: primero desde adentro – fuera mi útero y ovarios – quedando como testigo la línea del tajo desde mi corazón hasta mi vientre. Ahora, las montañas de mis senos se han allanado, dejando trazos del bisturí y un vacío a cada lado de mi pecho. Aún frescos.

    hay que tener agallas para ser testigo de mi propia transformación
    con los ojos bien abiertos.

    La definición del cuerpo

    Mis formas han cambiado. Mi cuerpo es impreciso, aún no se define por completo. Y, lo confieso, hay que tener agallas para ser testigo de mi propia transformación con los ojos bien abiertos. Y cariño por este cuerpo; para seguir encontrando lo bonito y lo bueno, lo fuerte.

    Para que encuentre sus nuevas formas: con los pies bien plantados en la vida. El corazón ligero. Y la cabeza llena del universo.

    Este es el tercer capítulo en una serie sobre el impacto de mi mastectomía, de cuerpo a espíritu. Cada semana publico uno nuevo, en este mes de recuperación postoperatoria.

    Puedes leer el segundo aquí (ENGLISH)

  • Attention: The difference between suffering and thriving

    IN THIS UPDATE, I WANT TO DELVE INTO THE IMPACT OF ATTENTION IN MEDICAL CARE ON MY HOW I EXPERIENCED THE SURGERY | ON 25TH MARCH, I UNDERWENT A PREVENTATIVE MASTECTOMY. BECAUSE THIS PROCEDURE HAS A COMPLEX IMPACT ON BOTH THE MIND AND THE BODY, I WANT TO WRITE ABOUT THE VARIOUS ASPECTS OF IT IN MY BLOG THIS MONTH.

    LEES HIER DE NL VERSIE

    The personal experience

    We often hear that attention and connection in medical care can be invaluable, but it remains abstract. Now, I’ve personally experienced this. And it wasn’t a small matter, as I was going to have my breasts removed.

    Completely my own choice, yes. So off I went to the hospital. With complete conviction… though I still felt a slight tension. Because, well, it’s still your breasts that you’re having removed…

    Hospital or spa?

    Hospital, or not?

    Upon arrival, I didn’t think for a moment about being in a hospital. I swear, I’m not advertising. But honestly, it felt more like a spa or hotel. Everything contributed to the experience: the wooded surroundings, the beautifully decorated interior, soothing. Everywhere there were light and cozy sitting areas, small details specially made by volunteers for fellow patients. On my bed lay a welcome package with lovely items, alongside a warm bathrobe. The interaction with the staff was genuinely friendly. I believe they were consciously trained and selected to provide good attention and pleasant interaction. People took their time. They even took time for a chat and didn’t seem rushed. They truly looked at me.

    Surgery and post-surgery

    Sunbeams

    The surgery itself was 100% fine with me. From preparation to waking up, everything went smoothly. I felt safe. After the surgery, I woke up feeling fine. Still a bit groggy from the anesthesia, but happy. I chatted and joked with the nursing staff, who thankfully also laughed with me (hopefully not just at me, haha).

    Once back in my room, I felt I had space, not only to recover but even to enjoy. From the tranquility, the relief, the view, and the sunbeams shining through my window. And boy, was I hungry! But they took care of that too.

    Making a difference

    Nurse took this pic of me in the recovery, so the kids could see how “I was kicking ass” as she said

    This experience is certainly very special. But why? What makes it special? Every hospital wants to heal, care for, or alleviate your suffering. Every hospital has the knowledge and the desire to help the patient. What’s the difference? I even asked if it was a private clinic. It wasn’t, it was “just” a small hospital. So, what is the difference then?

    The answer is abstract: it’s the attention. From environment, to interaction, to care. There was thought put into making it pleasant, comfortable. They took their time. So, what is the value of attention in medical care? FUNDAMENTAL. Though not scientifically measurable, the effect on my body and experience is very concrete, tangible, and visible. It’s not just helpful, but decisive. It makes the difference between suffering and thriving.

    This was the second post in a series on the impact of my mastectomy on me, from body to mind. I write one post every week while recovering from the procedure.

    READ THE FIRST POST HERE

  • Mastectomy: My inheritance, my choices

    FROM MY MATERNAL LINE, I’VE INHERITED MANY POSITIVE TRAITS SUCH AS INTUITION AND STRENGTH, BUT A GENETIC PREDISPOSITION TO CANCER ISN’T ONE OF THE POSITIVES. SINCE LEARNING THIS, I’VE MADE MY DECISION: AFTER THE REMOVAL OF MY OVARIES AND UTERUS LAST YEAR, I OPTED FOR A PREVENTATIVE MASTECTOMY. IT’S DONE NOW: MY BREASTS HAVE BEEN REMOVED.

    LEES hier de NL versie

    Maternal line

    We have a strong maternal lineage in my family, almost akin to a matriarchy. I was raised by formidable women, imbued with strength, sensitivity, intuition, and autonomy. It’s ingrained in my blood, in my DNA, and I carry it with pride. However, I’m also a carrier of the BRCA2 mutation, which elevates my risk for gynaecological cancers. That, too, is part of my genetic inheritance. I lost my mother to the ravages of advanced breast cancer. Her final weeks were a trial, and I bore witness to it.

    From Ovaries to Breasts

    The genetic predisposition first struck my ovaries like a hammer blow last year. But it could also affect my breasts, with an increased risk of 80%. Hence, a plan was formulated: initially focusing on my ovaries, uterus, and abdominal metastases, treated with chemotherapy, debulking, and HIPEC. The second phase targeted my breasts: a preventative mastectomy. It might sound like a straightforward plan, but the experience was naturally different.

    Making choices

    It’s a time of significant decisions, not always straightforward to make. For they are impactful decisions, not just for me but also for my husband, children, and family. From its effect on my self-image to my sex life, potential traumas for my children, employability, and my long-term survival perspective. It affects my quality of life.

    On my way to the hospital for a second consultation with the plastic surgeon | Jan 2024

    So, for me, the initial step was a no-brainer: a double mastectomy. But then came the questions. With each question, there was a sounding board, but it started with myself: did I want reconstruction or not? Then with the doctors (oncologist, surgeon): when was the best time for my body? Then the (plastic) surgeon, but also online, via specialized platforms and organisations: which reconstruction method was suitable? For me, the decision aid website from patient+ was valuable in preparing for discussions with the doctors because it enabled me to obtain more targeted information and ask questions. That made my choice much easier. Ultimately, I opted for lipofilling. A prolonged, impactful journey, but personally the best choice for me. This choice varies for everyone.

    On my way to another hospital for the mastectomy – 25 Maart 2024

    Impact

    As I write these lines, I sit on the couch, recovering from the operation. My breasts are no more. Thus far, no sorrow or pain. I’ve inspected the wounds and hollows, it was a bit shocking, I won’t lie. Yes, my breasts are gone, but so is the risk of cancer developing there. I can focus on the “ovarian front.” That provides relief, literally and figuratively.

    Though the decision for a mastectomy was straightforward for me, the impact of the mastectomy and its reconstruction journey is complex. Especially with recovery and reconstruction ahead. What does it do to the mind, energy, body, and surroundings? Therefore, this month, I’ll write about the impact of my mastectomy, from body to mind.

  • Work and Purpose II: A New Mindset

    Written in early 2024, as I found myself confronted with sick leave.

    klik hier voor de NL versie

    IT’S A RAINY RUSH HOUR EVENING IN OCTOBER 2023. I’M DRIVING BACK FROM THE OFFICE IN EINDHOVEN, FACING A TWO-HOUR COMMUTE HOME. THE TREATMENTS ARE BEHIND ME, ONCOLOGISTS HAVE DECLARED ME ‘CLEAN’. FOR NOW. EVERY DAY, I SWALLOW MEDICATION TO INCREASE MY CHANCES OF SURVIVAL. I GLANCE AT MY FELLOW COMMUTERS AND THINK, “TODAY, I MANAGED A FULL DAY OF WORK, I’M BACK IN THE GAME,” AND THEN I REALIZE I HAD CLOSED MY EYES FOR A FEW SECONDS. BEHIND THE WHEEL.

    on my way to work | Amsterdam 2023

    Update 2024 – Employability now

    Meanwhile, I am no longer working. The impact of treatment and side effects on my immunity, capacity, and body is even greater now than during treatment. Difficult, but I accept it. Although having a disease like cancer is never easy and working during illness is not always possible, working can be very valuable. For both employee and employer. It can help focus on what really matters in life. In the Netherlands, about a third of people with cancer work during their treatment. Research by TNO and the Arbo Unie shows the challenges and benefits of working during treatment:

    Employee

    • Faster recovery during and after treatment.
    • Prevention against negative mental effects during and after treatment, such as reduced risk of depression and social isolation.

    Employer

    • Reduced risk of absenteeism.
    • Increased productivity.
    • Faster reintegration process of the employee.

    Second stop on my journey: a new mindset

    The experience of working during my illness has brought me a lot. I have experienced that, when possible, meaningful work actively contributes to my well-being. Meaningful work, for me, is about connection and making a contribution to society. That’s why I now volunteer for the Olijf Foundation. Also through this blog. I want to offer fellow sufferers and their loved ones a helping hand, a place to shelter.

    There is still much to do and much we don’t know yet. This can cause unrest. But this mindset gives me confidence. It allows me to think in terms of possibilities, rather than being knocked down. And this is possible within my new reality.

    This is the second of two pieces about my experience of working during cancer treatment in the period of my first diagnose.

    READ THE FIRST ONE HERE

  • The Self-esteem batteries – nurturing self-worth

    HEALTHY SELF-ESTEEM IS NURTURED IN CHILDHOOD THROUGH CONSISTENT POSITIVE REINFORCEMENT, ENCOURAGEMENT, AND VALIDATION. WE GET THAT MOSTLY FROM OUR PARENTS, FAMILY AND FRIENDS. BUT WHAT HAPPENS WHEN WE DON”T?

    When this foundation is lacking due to life’s adversities, people may develop a dependency on others for validation and self-worth. This reliance on external validation can lead to a perpetual cycle of seeking approval from others to bolster their sense of self-esteem, rather than cultivating it from within.

    The Self-esteem battery

    Think about it as a battery. A self-esteem battery that originally wasn’t properly loaded; and now goes easily empty. Consequently, you need to recharge the battery more often than usual. There are two recharging strategies.

    1. Dependent Child. Connecting the charging cables to an external limited source. This is about seeking validation from another person. For example a partner or a boss. Usually people go automatically for this one. The disadvantage is that we maintain dependency on a limited resource.

    2. Autonomous Adult. Recharging from its own power bank. This is about creating a self-esteem buffer. This strategy entails three simple steps:

    • Identify the down in self-esteem and your need to seek validation, it’s a pattern. What triggers it?
    • Calm yourself down. Do nothing, call no one. Breathe. Realize, eventually you will feel better and be able to find solace by yourself. All you need is take time to calm down.
    • Be mild and confident. Take small steps, having setbacks is normal. Practice grants succes. 

    While this approach demands practice and patience, it creates a self-owned and always available source.

    The Self-esteem Batteries card is created in collaboration with psychologist Theo Verhoeven. It is one of my compilation of Life Force Tools, practical strategies to build resilience in adversity.

  • Work and purpose I: “I have cancer and just started a new job”

    Written in early 2023, shortly after receiving my diagnosis

    klik hier voor de NL versie

    SUDDENLY IN A NEW REALITY. THAT WAS ME ON THE MORNING I FOUND OUT I HAD CANCER. EVERYTHING TOOK ON A DIFFERENT DIMENSION, A DIFFERENT PACE: MOTHERHOOD, PARTNERSHIP, LEISURE TIME, FINANCES, WORK… I WAS DETERMINED TO MAKE MY TIME AS MEANINGFUL AS POSSIBLE, AND MEANINGFUL WORK WAS PART OF THAT. BUT I HAD JUST SIGNED MY CONTRACT… HOW DO YOU TELL SOMETHING LIKE THIS? “COMPLETE TRANSPARENCY, WHAT ELSE CAN I DO?” I THOUGHT… SO, I PICKED UP THE PHONE TO CALL MY MANAGER.

    First stop on my journey: a new reality

    In early March, I signed my contract to start as a communication advisor at an organization. I had searched for people-centered work and was excited to begin. Then, that morning, I found out I had cancer. Big boom, mind-blowing. Eventually, I got an idea of how I wanted to approach this new reality. It was clear that work was an important part of it, meaningful work. It was of added value to the otherwise cancer-dominated scenery.

    Working: wanting and being able to

    It was clear to me what I wanted, but what was actually possible within my condition: What can I expect? What can I do and what am I allowed to do? What is realistic?Creating a clear and realistic picture of my medical situation was very important. It turned out that there was enough space for me to be valuable at work. It also became clear that a bit of unpredictability was part of this process, so flexibility would be key to be able to work in this new reality. Both from me and from my new work environment.

    Sharing the news

    It was one of the hardest phone calls I’ve ever had to make. I was new and definitely felt like I was letting my work down. I also didn’t yet know what to expect, but I did know that the only way forward was to engage in dialogue.

    So, I called my direct supervisor. A bombshell for her as well, of course. Just like me when I heard the news, it was now her turn to let this new reality sink in. And that couldn’t happen in just one phone call. What did happen almost immediately was crucial: it was clear that the mutual willing to collaborate was there. And that we needed transparency and flexibility to achieve meaningful work within this new situation. How? By looking at what’s possible, what could be, and always working based on a medically realistic scenario.

    at work with colleagues | Heerlen, October 2023

    Meaningful work and connection with colleagues

    All in all, I was pleasantly surprised by the reactions. My supervisor was very understanding. This made it easier for me in the effort of integrating my treatment and work. I continue to engage in dialogue with all my colleagues. This is how we build connection, which we need to achieve meaningful work together. It’s in the little things, like flexible working hours. On my turn, I am open to working at alternative times outside the regular hours, of working from the hospital when necessary. Which I have done more than once. This gives the confidence to move forward.

    – NB for the nerdish among us: TNO has research about the importance of dialogue for working during treatment or chronic disease.-

    At the end of 2023, my work perspective looks different. I’ll write about that in the sequel: Work and Purpose II: A New Mindset.