In the new post José Prieto, our CTO, shares a wonderful interview with his uncle Juan Garay – cancer survivor, and his aunt Valeria Ulrich who previously volunteered in a pediatric oncology hospital. To learn some beautiful lessons about the power of love and support, read more here
Now that I am visiting Buenos Aires I had the chance to interview a great couple that have been together 29 years: my uncle Juan Garay and his wife Valeria Ulrich. Juan was diagnosed with cancer in 2016 and healed after treatment, and Valeria was his biggest support during this process. Some years ago Valeria also served as a volunteer in the Boldrini Center – a pediatric hematology and oncology hospital in Campinas, Brazil.
It is amazing to feel the strong bond that this couple shares, and how they went through different challenges in their lives together. They were very open to share their experiences, emotions, challenges and lessons learned. Juan, at what age were you diagnosed with cancer and what type of cancer did you have? I was diagnosed with colon cancer by the age of 56…57, right at the beginning of 2016.
How did you feel when you first received the news? Juan: I received the news after doctors performed a colonoscopy on me. This is a treatment where they go through your intestines and colon with a camera with general anesthesia, so you are fully asleep. When I woke up, the doctor told me I had cancer. It was a horrible feeling to receive these kind of news, especially since I was still half asleep and dumb because of the anesthesia. In addition, I felt kind of dizzy and out of space because of the medicine I received before the procedure. Also the doctor was quite straightforward while communicating this, so it felt kind of harsh.
Valeria: I remember that Juan’s mind went blank – he could not remember anything at all what the doctor said after the news. It was very shocking!
So, how did you communicate with your wife & kids about this? Juan: My wife was with me when I received the news from the doctor. The same day during the night, we gathered around the table and I told the rest of the family.
How long was your treatment and what kind did you do? Juan: Immediately after I received the news I had a talk with my brother-in-law who is a surgeon and explained what the doctor told me. He pointed out that, luckily, since the cancer was in quite early stages, it should not be very difficult to extract that part of the colon and he performed some analyses to determine if I would need to have a full treatment or not . Once that part of the colon was removed, it was sent to the oncologist – the doctor that specialises in the treatment of cancer – for analyses. It turned out that it was so young that I did not need to perform either radiation, or chemotherapy.
What was the hardest part of during the treatment? Juan: This kind of sickness makes you realise that death is so close and at the same time makes you appreciate more those parts of life you have – the challenge is to stick to those things that give the light and meaning to life and not on the dark part.
Valeria: Also by the time that Juan received this news, we had this paradox of not understanding what was happening to him and, finally, found a name for it. Once found, it felt like a beginning of a new phase: a treatment to follow. Here you realise the importance of knowing and understanding what kind of resources you have. Luckily for Juan, he did not need to do chemotherapy or rays, so it made things very different.
What was the most important thing you needed to do during this process? Juan: Through all this period I felt that each day was like a match or battle where I needed to put my strength only on keeping my mood up, focusing on the cancer and forgetting everything else.
Valeria: I could see that he was very focused on getting better and healing himself, this is how he expressed it to me – spending time alone in silence and finding himself. It was not a silence of being depressed, but more of connecting with himself.
Where and how did you find emotional and practical support during this process? Juan: As a religious person, I saw the presence of God and also the Virgin Mary supporting me during these moments when I was so close to death. I received a lot of support from friends, but especially from my wife Valeria, who supported me through all the surgery and internment process. It was altogether a period of around 2 months due to some complications. Many friends visited me and stayed with me, which gave me strength, but at the same time I was so weak that it was hard to keep it up.
Valeria: We had a strange and providential free trip offer to Calafate which we decided to take a couple of days before the surgery. Over there, we reached Chalten and climbed a mountain to reach the Laguna de Los Tres – walking together for 20 hours! A very big challenge for us. It was a wish that he had, so we decided to train ourselves for it in order to succeed . At the beginning I felt that in no way I could do it. It was a very strong and symbolic moment within this process for us and we made it. In this kind of moments you realise how capable you are of doing hard things. What happened after the treatments? Juan: I needed to do the same colonoscopy test and some blood samples in order to monitor the existence of cancer and everything went well.
What would you share with kids that are going through cancer treatment? Valeria: The topic of hair loss is a central thing for them, they need to know that this is something that is going to happen to them. There was a book we used to read them in the Boldrini Center called O leão sem juba (A maneless lion) by Nely Guernelli Nucci. Kids loved it because it was a great example of finding a way to express what children were going through with an emphatic touch but without being explicit.
In some cases I felt it was harder for the parents, suffering more than kids, since kids have an amazing power of adaptation.
What would you advise parents? Juan: Since I did not go through all the treatment, I could only advise on the initial part that I went through: surgery and internment process.
Valeria: Something that surprised me from Boldrini Center was that kids with less resources were more open to talk about what was happening to them and how they were feeling, which was very good for them and their families. Kids that had more resources were more reserved and uncomfortable – you could feel and see that they were struggling more on this. So it is very important to understand each case.
It is also crucial the relationship children have with doctors – this is a key thing in understanding and accepting the situation. I also remember about Clown Care volunteers, who were amazing and had a very strong impact on the happiness of kids.
Kids should be free as much as possible on this cases. In this center, kids had leukemia and they were immuno depressed, so they could not have a lot of visits. But they could have some visitors when they and the visitors wore a sanitary mask. So you need to find the way for these encounters. Visitors were always very welcome and they loved that we read them books, sang them songs and that we listened to them.
What do you think about gamifying the treatment? Valeria: So when it comes to my mind about gamifying the treatment – I think that it is something very motivational that a kid could do during the internment. I feel that through video games and the usage of visuals, there is a lot of space to boost up their mood.
My only concern is that you need to be very careful on which paths of development kids move forward to obtain certain benefits and achievements, since not every kid will be able to do it in the same way due to different kinds of limitations. I would not like the fact that the game reflects this kind of unfair development. It should be somehow more symbolic, not that explicit – similar to the case of the book I mentioned before. I have the feeling if this unfairness of development exists then it could turn out counterproductive.
We thank Juan and Valeria for sharing their experiences and thoughts – I has been a beautiful experience and big learning to interview them.
Have a nice day!