Dialogues

Dec 14, 2024, 06:24

Beyond the Cancer Diagnosis: Dialogue with Mila Ogalla Toledo, Hosted by Adrian Pogacian

In the current episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian addresses the emotional impact of cancer diagnosis on relationships and the struggle against social stigma with Mila Ogalla Toledo, young colorectal cancer survivor and AYA (Adolescents and Young Adults) cancer patients advocate.

Mila Ogalla Toledo was diagnosed with colorectal cancer at 26 years old, an experience she described as a devastating shock that upended her life. At a time when she was beginning her career and embracing independence, the diagnosis forced Mila to put her personal goals on hold. Mila now works to challenge the stigma surrounding cancer by fostering open conversations. Her goal is to raise awareness and provide others with the information, support, and resources she found lacking during her own treatment and recovery.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Hello everyone, welcome to a new edition of Beyond the Cancer Diagnosis interview series. Today it’s my pleasure to invite Mila. She’s a cancer survivor.

She is very involved in the cancer community with a lot of work in advocacy and what is the most important, sharing from her own experience to other people. And when the information comes from someone who experienced this oncological disease, it’s more important than reading books. So Mila, thank you for accepting my invitation.

Mila Ogalla Toledo: Thank you for letting me be here and share my knowledge and experience.

Adrian Pogacian: It’s very important because you share the knowledge, let’s say from the field, from the background. And as I mentioned earlier, it is a big difference when we read books or we read statistics. And when someone who already experienced this, it’s talking and share advice and things to do, things not to do.

So for sure it will be an interesting discussion. But to start our interview, I would like to ask you if you can briefly share your story for our audience and what was to be in that period of that position.

Mila Ogalla Toledo: Okay. So I was diagnosed when I was 26. I spent almost two years visiting different doctors and hospitals and they didn’t believe me.
So I got misdiagnosed because I was young. And then through the COVID pandemic period, I got diagnosed with colorectal cancer when I was 26. So it is a very or extremely isolating illness, but because it was during COVID, it was even more isolating because no one could be with me during the IV treatment and no one could be with me or I couldn’t visit my family, my friends.

But it was really important for us to do daily checks and we could do video calls and we would play games even together online. So that was something or it’s something that I’m very grateful about. And to say that I was in shock when I got the diagnosis was like, it is, I don’t know, I’m like, shock is not enough.

Because you do not expect to be that young and having cancer if you did everything right, if you’re healthy, if you are active and if you do all the right things that you’re supposed to do. So, yeah, and because no one in my family had cancer before, I didn’t know anyone from my age gap that had cancer. So I felt quite lonely, honestly.

Adrian Pogacian: There are two issues that I noticed when you talked. First was the isolating, because during COVID, everyone was locked. Yeah, it was like the only place that you wouldn’t want to be was the hospital.
And the second one was the emotional distress that you felt at that moment. And it is known that if you have family support in cancer disease, it’s like almost 50 percent, the chances are increasing to get healthy, to get better. So you, from the start, didn’t have this support.

Mila Ogalla Toledo: I did. I did. Yeah, I will always.
Yeah, in a different way.

Adrian Pogacian: Yeah, in a different way.

Mila Ogalla Toledo: I had a great, how can I say, like support team or group of support. So I’m very lucky. But it was through a screen and that was tough.
And I can you can have the biggest support system, but because of the taboo around the word cancer and you don’t want to worry them even more. So you do like, it’s like you act, you’re doing an acting where you’re better than you really are, where you don’t share that much because you don’t want to worry them. So there are a few thingies that, yeah, it’s different.

Adrian Pogacian: It’s kind of, as I call it, it’s a kind of shame, but not shame in a way that from disease. But as you mentioned that you don’t you have to act, you don’t want to, let’s say, embarrass parents or brother or sister. So you try to pass it not alone, but talking with yourself, being yourself and be stronger for them.
Yes. And because you see them suffering and when you even they don’t show it, but you feel it and it make it worse. It’s not.

Mila Ogalla Toledo: It make it worse. Yeah. It’s because of that, because of that taboo around the world and around having an open and honest conversation about the evenness and the side effects and what you’re truly going through.
So yeah. And because of that.

Adrian Pogacian: In general, in general, every parent is very protective. So it is a principle in psychology when you want to make a good thing, you make it worse. So sometimes it’s better to do nothing than trying to be helpful because for the cancer patients, it’s not good.

And I know many parents that were so involved during the treatment and because they wanted to be next to their children, next to them. And even to bargain this thing.

Mila Ogalla Toledo: To carry a little bit of the weight.

Adrian Pogacian: Yeah, the effect. And sometimes it’s good, but sometimes you just have to let the patient be with his own emotion, in his own, let’s say, attitude, motivations, self-control. And what I want to ask you next is, except this very challenging thing of being in the hospital during COVID, what other challenging challenges did you experience during this period?
Because COVID theoretically ended in 2022. So it passed two years. So what other challenges for your ages?

Mila Ogalla Toledo: The biggest one, and I think every patient or survivor can share is that everything changes. You’re not the same. Nothing is the same.
And they expect you to go back to your life, normal life, when there’s no such things anymore. And I think that’s the biggest one. But at the same time, there’s also, like, you can see it with a different perspective of point of view that it can be also seen as an opportunity, because you learn that nothing is granted.

That everything can change in the blink of an eye. One day you can be living your life and not having to worry about anything. And then the next day you can get diagnosis or something can happen.

And it can change the way you act, the way you feel, the way you talk, the way you express with yourself or with others, the way you see the world, the way you want to approach different topics or subjects. So I think that’s the biggest challenge, because absolutely everything changes. But it’s also a great opportunity to see life through a different lens, even if you had to do that, like you were forced to learn that.

Adrian Pogacian: How hard is this inside battle when thinking on the past and thinking further? How hard is it to manage this battle? Because you go further, but there are moments when you think on the past, what if, what I wish I would.
So do you still face this battle?

Mila Ogalla Toledo: Oh yeah, I think so. I’m not sure if I’m not gonna or if I won’t stop ever having those battles, those internal battles. But yeah, you do remember who you were before.

You also remember how tough and how bad and how extreme in a bad way everything was. And it’s also scary to think that it can happen again. And the, we call it in the community, this kind of anxiety, because every time you have a test and every time, it doesn’t matter if it’s just a blood test or if it’s a scan, it’s scary.

It’s scary even though you feel in deep down, you know, that it shouldn’t happen again. You know, because you had that experience, that it can definitely happen. So that’s tough.
I don’t think I will, I’m not sure yet if I won’t ever stop having those battles between, oh yeah, it’s okay, it won’t happen again. Or maybe it will.

Adrian Pogacian: It is very important that you seem that you manage very well this denial of the disease. This is one of the special coping strategies, to have an equal equilibrium in denial the disease, not to deny everything that you didn’t have because that interfere with the medical treatment and so on. But it is good that you can manage this.

And it is good that you have also what is called a very good hope for the future. Because I saw a lot of patients with so much hope that transformed itself in false hope. Because as you mentioned, the first anxiety, they lose all the hope, you know.
So it is very important to manage this denial, this hope. It is not easy.

Mila Ogalla Toledo: It is not easy and I think it changes. Like I’ve been maybe better in the past and I might get the worst anxiety of my life the next year. I do not think that you can control that or manage that.

But if you can remind or do your best to remember that it’s okay to have those moments and it’s okay that every single time that you’re going to get an appointment or you’re going to do a test, you might feel different about them. I think that’s crucial and I think that’s part of the, how can I say, what I’ve learned or how I feel about it. Yeah, that I have to let myself and be myself and fully accept myself in that moment.

So if I feel different than in the past and I feel more anxiety now than I did in the past, I’m going to tell myself that it’s part of the process, I guess. And I’m not gonna, how can I say, I’m not gonna back down. Talk to myself in a negative way or be like, oh yeah, I shouldn’t feel this way.

I should be in that page already. It’s like, no, I am what I am today and it’s okay to be here and it’s normal to be here and it’s lucid and it’s part of my life.

Adrian Pogacian: Unfortunately, cancer disease is a sinusoidal disease. As you mentioned, in some days you are feeling good, but some days without reason you are not good. So this is one of the, let’s say, psychological secondary effect of cancer disease, this sinusoidal approach of life.

But now I would like to come to a very important issue in all this process of cancer, because you mentioned about COVID and maybe the worst thing in COVID for everybody was the lack of communication with one with another. How important is communication during cancer treatment, in cancer care? And here I would like to talk also about the medical stuff, but about parents, about friends, about lover or spouse, if it’s okay.

Mila Ogalla Toledo: And anyone, any kind of relation, yeah.

Adrian Pogacian: Like in general, how important is to communicate?

Mila Ogalla Toledo: I think it’s key. I think it’s one of the most important things that you can do and have and look forward to. Being open and talking or communicating freely without any judgment about it, about how you feel, about how you’re doing and about your thoughts and yeah, like everything.

I think it’s really important to have that communication with everyone involved in your life, not only relationships with your parents or friends or, I don’t know, your partner. I think it’s really important to have that honest conversation and communication with your doctor. And I think it will be very or extremely helpful to have that open and honest communication in every single field in the oncology world.

I’m talking about lawmakers, I’m talking about pharmaceuticals, I’m talking about the caregivers, I’m talking about the professionals that work in the hospital. I think it’s key. I think it’s really important.
And being able to be your truest self with the people around you, I think is really important. I did my best to remind everyone that, hey, I know I’m going through this, but my battle is as important as yours. I do want to still hear about the fight that you might have with your mom.

I do want to hear about the last TV show that you saw and that you enjoyed and that I might enjoy too. I want to know if you have the courage to write a message to your crush. And I also did my best to remind them that the roots of our relationships were strong enough to go through this together with honesty.

Adrian Pogacian: You mentioned this word honest and honest communication. I’m very glad that you mentioned it because one of the issues of the cancer patients is that they don’t want to have these honest conversations. They don’t want to have these hard conversations with medical team, with therapeut, with clinical psychologist.
But it is very important because…

Mila Ogalla Toledo: Yeah, but feeling vulnerable, it’s really tough. And not everyone and not everyone at like all the time is ready or feels ready to feel vulnerable. And you feel extremely vulnerable during those moments.

But at the same time, for me, I think it’s something that helps me heal the different layers of my wound, because I think all wounds have different layers. So even though it’s very vulnerable and I might be super emotional talking about it because it’s something that it’s really close to my heart, I do my best to remember that it’s also powerful to own my story and my experience and to talk about it with honesty.

Adrian Pogacian: And open. This is also an important issue. And you mentioned about vulnerability.
Unfortunately, after pediatric oncology, adolescents and young adults are the most vulnerable category of cancer patients, because as was in your case, it is a period of great transformations, emotional, physical. You are thinking of making a family or you are thinking to having a child. So I would like because you are very honest and you discuss open about this.

I will ask you, let’s say, direct questions. Is this a motive or a reason to end the relationship? Because we are talking about communication.
Yes.

Mila Ogalla Toledo: Yes, it can be. Because I don’t think society as a whole is ready to go through this and be there with someone. There’s no education about it.
There’s no communication about it. There’s nothing about it. And there’s no awareness.

There’s no visibility. There’s no place, especially for. Yes, in society in general, it’s like we are not we do we do not exist.
It’s either you’re too young to be in this um older care kind of, I don’t know, part of the illness or. Yeah. So I think it’s it’s it can be something that can break a relationship with a partner if they are not ready to be there with you because they don’t have to carry anything at all.

They just have to be there with you. But if you feel that they are they are going to be like the center. Even doing that treatment where you just need to be taking care of and be reminded that I’m here with you if you need me in every single aspect.

Adrian Pogacian: Uh, the philosopher Nietzsche said that it is the lack of a friendship, not the lack of love that end a relationship. So, yeah, you have to be friends. You have to be friends more than ever than let’s say lovers, because it is the lack of friendship that end the relations and you don’t have to to be here to feel this.

But you mentioned another interesting issues that make me ask you about this topic. Education, prevention, awareness. Everyone is talking about very, very loudly this nowadays about we have to make preventions starting in Romania, for example, starting from high school because they have to know they have to etc.

We have to make awareness. We have to make education. But it seems to me that are slogans more than actual facts.

Mila Ogalla Toledo: More than actions. Yeah.

Adrian Pogacian: So where is this gap or what is the bridge that can uh close this gap of make it happen?

Mila Ogalla Toledo: Make it happen. I think that if we teach the kids from a young age about it, like we do with other illnesses, we do with other things and other aspects important in our lives. Why don’t we do that?

It’s because of the taboo around the word cancer and the power that we give to the illness. And why do we do that? Because we like we can change so many things if we just bring awareness and talk about it and get an education or knowledge about it.
It will be okay. It’s part of it’s part of our society because it truly is. Why do we hide it?
Why do we keep it closed? Like, hey, no, it’s better to not talk about it. That only gives power to the illness and the word.
So we’re not doing anything good. We’re not breaking that pattern. We are not breaking the around the word and talking about it.

So I think that’s key. I think that we should talk about it and have a background, an educational background about it too since a young age. If we talk about other illnesses and we talk about other like you learn about the body and you learn about the reproductive systems, why do not we talk about cancer?

When the number of patients is only getting bigger and it’s only rising.

Adrian Pogacian: Since we are approaching to the end of our interview, I would like for the final to send a message from AYA category, but with a require to relate it to cancer information. Because it is nowadays and maybe you face it also misinformation about cancer on social media platforms. So taking this into account, what message could you say for AYA as a vulnerable group in this battle with oncological disease to keep fighting?

Mila Ogalla Toledo: Okay, not only keep fighting. I don’t think we should use the word fight because we’re not in a battle. So we’re not in a field with anything.

So I don’t think fighting or battle, I think we should take those out of our vocabulary. If we’re talking about cancer and survivors and patients. I think those words, they don’t do good.
To how can I say, you know your body better than anyone. If you don’t feel comfortable with or you don’t, you’re not sure about what they’re telling you, you should go and find a different opinion. If you’re talking with a professional in the medical field, it’s really important to have a support system.

If you don’t have it offline, you can also have it online. There’s a community in Europe, thanks to Youth Cancer Europe, that it’s the work that they do and it’s amazing. It’s beyond any word that I can or feeling that I can ever express.

And having that sense of community, it’s the most important thing for me or for I think for any survivor because you don’t have to explain anything. You don’t have to tell anything about yourself to have that shared feeling that only a survivor or a patient can really feel or know. Those nuances that we feel can only be felt because you went through something like that.
I think sharing your experience if you feel comfortable enough is also really good and healing. But being part of a community and finding maybe a local organization is also really helpful. And be careful also with what you find online because not everything is true.

Adrian Pogacian: Mila, thank you very much for being with us today and thank you very much for the courage to talk about, for the openness and for the sincerity of your words and thoughts. I know it was not easy. This is why I’m thanking you once again because you shared your own experience, your own feelings and your own awareness for other IANA community members that faced or might face this oncological disease.
Thank you very much and good luck on your future projects and further activities.

Previous editions of “Beyond The Cancer Diagnosis”

Edition 1: Beyond The Cancer Diagnosis: Psycho-Oncological Aspects Of Kate Middleton’s Diagnosis

Edition 2: Beyond The Cancer Diagnosis with Sonia Amin Thomas – Survivorship

Edition 3: Beyond The Cancer Diagnosis: Dialogue with Wendy Lam, Hosted By Adrian Pogacian

Edition 4: Beyond The Cancer Diagnosis: Dialogue with Camille Moses, Hosted By Adrian Pogacian

Edition 5: Beyond The Cancer Diagnosis: Dialogue with Tihana Gašpert, Hosted By Adrian Pogacian

Edition 6: Beyond The Cancer Diagnosis: Dialogue with Amanda Balakirsky, Hosted By Adrian Pogacian

Edition 7: Beyond The Cancer Diagnosis: Dialogue with Dr. William Breitbart, Hosted By Adrian Pogacian

Edition 8: Beyond The Cancer Diagnosis: Dialogue with Dr. Alberto Costa, Hosted by Adrian Pogacian

Edition 9: Beyond the Cancer Diagnosis: Dialogue with Prof. Sophie Lebel, Hosted by Adrian Pogacian

Edition 10: Beyond the Cancer Diagnosis: Dialogue with Darren Haywood, hosted by Adrian Pogacian

Edition 11: Beyond the Cancer Diagnosis: Dialogue with Sarah, Hosted by Adrian Pogacian