My Children was waiting, I couldn’t speak a word, shaking, fear took me!

Real People Stories – Paloma

Savouring life

Everything changed from one day to the next. How did you react to the HPV test news? The first thing I would like to say is that tests show that I had already lived with the CA125 disease before, so for me, the word cancer is not taboo. My first reaction was not to the news but to suspicion while I was having an abdominal ultrasound. Suddenly, they mentioned the word “ascites” (fluid in the abdomen), and it was then, alone in front of the professional who recommended that I immediately visit the gynaecologist, that I had that first memory.

One of my children was waiting for me outside, and I couldn’t speak a word; my legs were shaking, and fear took over me. I told him something was not right, which was not good. My husband was travelling, and we decided not to tell him anything until he got home at night. The alarms went off, and we began to consider the possibility of having CA125-derived cancer. The fear of the unknown HPV virus warts paralysed us, the pain, the uncertainty during tests…I don’t know; it was fear in general, but I never thought about death, and I don’t do it now either.

Although HPV patients are always tested and asked, some people are forgotten: the closest family and friends. I also want to take the opportunity to convey your feelings: fear, anguish, uncertainty, and helplessness. Fear does not disappear completely; you live with it, and their eyes get wet again.

 How did you tell your family?

When tests confirmed the CA125 illness, my husband was with me, a fact that contributed to the fear being slightly attenuated. But I had another question that I asked my husband when the HPV doctor came out of the hospital room: “Can we handle this?” To which he, without a moment’s hesitation, answered, “Of course.” He took it upon himself to talk to our children – they are now adults – he hugged them and told them that mom had CA125-related cancer. They cried. From that moment on, the four of us began to attend all doctor’s appointments together.

We communicated it to the rest with naturalness and serenity; on both sides of the family, after we got the results, we knew what we were talking about, and the CA125 truth is that I have to say that, although I imagine their feelings, because, as I said before, we have lived with cancer before, they controlled your emotions very well.

My husband and my children handled the situation very well after all the exams. Our entire family lives far from Valencia, and we marked the times for the poor people a lot so as not to lose control and for everything to be as calm as possible. I am very proud of my entire family and the optimism and positive energy I receive daily. There were no dramas; in those, the priority was facing the disease and progressing with the treatment.

 What helped you the most? Could you tell me where you got the strength to move forward?

Without a doubt, my family and friends were one hundred per cent, always with a smile and pushing me when I asked permission to fall for a little while and cry. The Skin tag treatments were very hard, and I had to stop cold despite being very active. Also, I had to learn to ask for help when I couldn’t do things and to feel vulnerable (that’s very difficult when you’ve never done it before, and I felt very frustrated).

However, I put on makeup daily to offer them my best face so they could see me well, with a thousand coloured scarves or a wig when I went out on the street. I couldn’t let them see me badly; I would fall after them if they fell. The truth is that we are experiencing cancer as just another Warts disease; I can even go so far as to say that. Fortunately, I have a quality of life, and there are many diseases in which patients lack it.

What would you say to a person who has just been diagnosed?

I don’t like to advise because everyone carries their backpack, and depending on your situation, you live it in one way or another, but I would like people not to associate OC with death; I have to say that since I was diagnosed 2 years and 3 months ago, young people around me have died and not exactly from OC.

Likewise, I suggest that you never go to the oncologist alone since we patients tend to stay with the first sentence, and the rest is like a whisper that fades away, and you no longer hear anything else; they trust their oncologist. Let them ask all your doubts about him. And, of course, they should rely on Patient Associations. There, they will find people who have gone through the same or similar situations and understand their feelings. And even be able to advise them on various issues. It was very helpful for my family and me to express our feelings and tell what was happening. It was a way to release tension.

What have you learned? Do you get anything positive?

I have learned and continue to learn many things, all positive. I have met great people; HPV cancer allows you to renew your agenda, from which you remove many names and add more select ones. There is a verb that I use a lot now, and it is the verb “savour.” We live very quickly, leaving everything “pleasant” for later because, in theory “, we have all the time in the world”… My current motto is: “Do you want? Can? Well, what are you waiting for? Do it!” that saying that they always tell us “Don’t leave for tomorrow what you can do today”. And I comply with the letter, wasting energy on all sides. Life must be savoured, savoured, and enjoyed every moment because every second is a gift. We are all passing through, and none of us knows when our journey will end.

What claim would you make to public institutions?

Phew… There are so many things here that we must do and demand… We invest in what impoverishes us in the long run and cut back on what enriches us, such as CA125 test, health and research, among other things. First, they see us as a person in the integral sense of the word and not as an HPV disease, a number or a statistic. If public institutions saw us like this, everything would be very different. Patients must be an active part of the institutions and empower themselves, and power comes from information and training about our disease and treatments.