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Flavia Maoli - Hodgkin’s Lymphoma Survivor

Flavia Maoli - Hodgkin’s Lymphoma Survivor

When I was 23 years old, I was diagnosed with Hidgkins Lymphoma. I didnt know anyone who was going through the same thing, so it felt like I was the only one. After the diagnosis, I had treatment and I was fine, but a year and a half later I was sick again. This time, I decided to change things around. I didnt want to be alone, so I started writing a blog. I shared my stories and tips on things like how to choose a wig or how to tie a head scarf. Through this journey I started meeting people and eventually came in touch with two guys from my city.

They wanted to do some social work surrounding this, and we met to organize a meeting with patients who were going through a similar journey.

That first meeting was amazing and there was great energy between the people. We then decided to go further and wanted to do more. That is how we began Instituto Camaleao

Family history and their first reaction

There was no family history of cancer or any comorbidities as such. My mother did get cancer after me, but we took tests that showed that it was not genetic.

When I first came to know about it, I felt really alone. I felt like I was the only one who was going through this in the whole world. My first thought as soon as I came to know I had cancer was that I had done nothing with my life.

That thought really hurt because we as humans want to leave something behind in the world and want to live a life that matters. I felt that I didnt make a difference in the world and that was my first thought and reaction to the news.

My family was really scared because I am the youngest daughter and I was the last person they would think of having cancer. But I was the first person in the family to be diagnosed and it took them by surprise.

Treatments I underwent

Initially in 2011, when I was diagnosed for the first time, I went through chemo and radiotherapy and I was fine, but when the cancer relapsed a year and a half later, I had to undergo chemotherapy, bone marrow transplant and targeted therapy. I took all the treatments that were available for me and this year, it will be nine years since my bone marrow transplant.

Treatment side effects that I experienced

I had some side effects. The biggest ones were that I was nauseous during the treatment and I lost my hair. This was very big for me because , when youre bald, you dont have to tell anyone that you have cancer, it sort of lets the world know that you have cancer and that was very new for me.

I had other side effects too, I lost a lot of weight and stuff, but none of them affected my quality of life.

Alternative treatments that I tried

While I was undergoing treatment for the second time, I practiced yoga and that helped me a lot. I tend to see yoga as a treatment rather than a practice because of the way it changed my life and it is more than just a day-to-day thing that helped me.

Other than that I did not try many alternative treatments because when you are undergoing chemotherapy you have to believe it and place your trust in the doctors and the treatment. So I didnt try too many things but practiced yoga and meditation, which helped me a lot.

My mental and emotional well being through the journey

Writing was always important to me and in a way brought me back home. I wanted to be a writer when I was a child, but when I became an adult, I kind of lost touch with that side of me. And when I was diagnosed with cancer, I think I got a chance to reconnect with that part of me and rediscover myself. Other than that, with the institute, we help many people and the feeling of not having done anything in life has stopped. I see what is happening there and it gives me a lot of courage.

What really helped me to keep going is seeing and understanding that no matter what difficulties you go through in life, you have the right to be happy. It is not easy, especially when you have cancer, since you have very painful and difficult days, but in the end you have to make a plan to find your happiness and make your life better. That is what motivated me through this process.

Lifestyle changes during and after treatment

I tried to meditate more, even after the treatment was over. I realized that our lives can get pretty stressful and we need something to connect us back to ourselves and meditation helped with that. I also tried to sleep and rest more, because for a while after I was cured, I wanted to do a lot of things and that affected my sleep. But, I understood that I have to choose what is important and take care of myself. I also made little modifications in my food habits but nothing major.

My top three learnings in this journey

The first thing that cancer taught me was that I was mortal. Life can come to an end at any time and you need to learn to overcome the fear.

The second thing I learnt was that life should mean something to you. This is something the human race has searched about for a long time, and there is no one way to find the answer, we each have a unique path and we have to find what makes our life complete and gives it purpose.

The third thing is that you should learn to live every day. There are days you cry and there are days you celebrate, life has both of it and you should evolve through those experiences. These are the main things I understood from my journey and that is what I have tried to tell everyone I meet.

My message to Cancer patients and caregivers

One thing I would say is we should not see cancer as a death sentence. Sometimes it can be a life sentence because you can learn to live more after diagnosis. You should see cancer as a notice from the universe telling you to live life to the fullest, because you have a limited time here. Cancer can be a reminder to live and not a disease that is a death sentence. This is the most important thing I can tell anyone. Enjoy the time you have, no matter how long or short.

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