It has been a long time since I wrote the last article, and many things have changed since then.
Almost two years ago, Francesco was diagnosed with Stage IV cholangiocarcinoma.
In the last few months/years, I have been feeling as if my experience as a cancer patient was just training, a test to cope with what would happen next…
So many bad experiences and traumas of my illness seemed stupid and insignificant. I felt selfish because of the way I dealt with my own chaos, and the way I dealt with many things.
I had not considered, however, that no matter how small, they were still traumas. I had to face places and situations with PTSD from my path, from which new anxieties, new fears and new traumas built up.
So, out of the blue, what we thought was supposed to be a normal gastritis turned into a monster with a complicated name, and in a stage too advanced to be completely eradicated, but only kept at bay.
In dealing with my illness, I always had a strange feeling of tranquility and peace.
Calmness in knowing that the one who was sick was me, and that it was my body dealing with side effects, pain, therapies and surgeries. For once in my life, I didn’t bother to think about how the people around me might feel. I was focused on my own priorities, needs and desires.
Jumping on the passenger side instead, I realized how destabilizing it is to be a spectator. The body that has to deal with everything is not mine, but nevertheless I felt and still feel as bad as if it were, and powerless, because the only thing I could do was to be there.
Besides all the chaos, examinations, appointments, there is the fact of being the closest person to the patient, the caregiver who, besides taking care of the patient, has to think about the logistics and all the doctor-family communication too. And this overwhelmed me very much, especially during the first months after the diagnosis.
No matter what, there is this side of me that loves to please people, hates to create additional problems and would like to do 100,000 things on my own without ever asking for help. I often tiptoe not to disturb and destabilize others, when at the end of the day, the most destabilized of all, is me.
Sometimes it feels like I take much longer to breathe, sometimes as if breaths are too short and painful, as if the air is struggling to get in, and other times as if I was holding my breath for weeks.
Sometimes I stay with my eyes closed, squeezed shut, shoulders contracted and huddled, like when you see a flash of lightning and wait for the sound of thunder to come; or like when you see something fall and wait for the moment when it will hit the floor and break into a million pieces.
All this waiting/preparing for the noise is exhausting! And then… What’s the point?
All this has led to a lot of anxiety, depression, panic attacks and regaining all the weight lost since the end of my therapies, before Francesco’s diagnosis.
Easy to give advice about how to take things day by day, step by step and live the moment.
Despite “It is what it is” being very true, as you never know how life will turn out, it is not easy to actually live in the “here and now”.
Even if the feeling of nausea became a daily companion in the past months, I have continued to eat attempting to somehow fill that hole in my stomach, sometimes literally binging.
All of this, led to having even stronger nausea, headaches, guilt, and Mango peeing on the floor, to emphasize that something is wrong.
In their madness, however, these two years have been full of life, despite this constant feeling of not having enough air.
We managed to do so many things! Things that I would have considered impossible 2 years ago. We got married, we traveled, we attended important people’s weddings, we celebrated birthdays, we went to concerts, and we had a lot of laughs (well, even tears… but let’s focus on the good things!).
We cannot spend our time worrying and crying about goals and projects that we cannot reach/think/do/disappoint. All in all, what certainties do we have?
I am learning that getting ready for a possible incoming noise is useless, even though that noise is almost certain to come.
I am learning to be loud when I am not feeling ok, when I can’t handle something.
I am learning that my noise, my chaos is very much valuable, and just as important as the other ones’.
Sometimes thinking of the worst is instinctive and inevitable (we call it dark time 😉 ), but it is fundamental to stop to let this take only limited time, regain control soon enough!
It’s not easy to live in the moment, it’s not easy to live from day to day, but it’s nice when despite the chaos, we manage to breathe (no matter how hard it is), and find glimmers (can I call it glammis?) of light by doing things that make us feel good, happy and loved.
