“I Became Petrified of Dying” Nikitta's Cancer Journey (Ep 16) Part 3 of 5

I wasn't fully seen as a stage three or four, you know, faced again with that situation. Like I'm not sick enough to get support. So that angered me. I kept on wondering, and I think that was my fear as well while I was going through my experience is if I'm not happy and fighting and, you know, full of life, it's going to take me. How did your view of mortality change? And how do you view death now? I've actually become petrified of dying. This conversation is making me so aware of how there's so much going on in the behind the scenes. And if I say behind the scenes, I'm talking about how you look at yourself, how you view yourself, how you think, how you feel. Honestly, one is just not thinking and acting right. You do need people to, I mean, this is what I think. From what I'm hearing is that you just do need people to someone just shake you and give you like, what are you doing? This is not right. You know, your doctor being the one to be like, look, I hear what you're saying, but you know, wake up. Because you just aren't in the right frame of mind. Not making the right decisions. And I think maybe my takeaway is that if this is your family and you care deeply about this individual, risk making them upset with a wake-up call. Yes. I think it's important. Because they may be upset with you for a week, a two, maybe even a month. But someone needs to do it. And if it's not us doing it, you need to do it. 100%. We are always so cautious in what we say to the next person. And I'm not saying think before you speak. That's a given. I'm not trying to hurt this person. Exactly. This comes from a place of love. But we need to stop trying to sugarcoat things. If we are seeing something that just doesn't look right, mention it. Speak about it. If that person is upset, the person is upset. And as you said, you're doing it out of love. But by us keeping quiet and then that person gets diagnosed with something that we saw, it's not going to make you feel any better. You're going to feel worse because it's that I could have, should have moment. Right. And coming back to these moments of beauty, how did your view of mortality change? And how do you view death now as compared to before? I've actually become petrified of dying. Before, I hardly ever thought about death. It was always, you know, I'm a size 8, size 6 clothing, you know. I look fine type of a thing. I don't have diabetes. I don't have cholesterol and all of those things. So I was never really confronted with having to think about death. I still feel like I don't have enough time just because we don't know when our time is. And there's so much admin that we actually don't realize that we have, especially when you become a parent. There's so much admin that goes into that. We don't necessarily have conversations about with our children. I don't recall ever sitting down with my parents and having that conversation about, you know, once you're out of school, sort of financial ways of, you know, how do you approach buying a car? Yes, I did it in school, but that was just like, you know, you study to pass, not to remember and implement it later on. But even when it comes to a will or once you have children, what are sort of the steps that you need to think about? And I think it comes down to also generations. Their parents probably also didn't sit down with them and have that conversation. And so that is something that I'm trying to actively approach with my girls. It's not easy because you don't know where to start. You don't want to scare them and feel like they are responsible now to do or become an adult to support you. But at the same time, you're trying to teach them to be more mature, in tune, conscientious, and thinking ahead. I had a discussion with the girls not too long ago. We sort of had a disagreement and, you know, as being parents our children can have disagreements with us. It's not always the most fun part. And I actually sat them down and I was like, girls, do you realize I'm doing this for the first time? I didn't receive a book. I didn't write a test to pass to know what I'm doing. I'm literally winging it. That's, well, I mean, my takeaway from this is, you know, once you have children, there are a few fundamentals that you should think about ahead of, you don't know what happens in life. You were 26 years. You know, like you said, it's not a normal time for people to get diagnosed with cancer. You feel like this is something people that are more senior have to deal with. But now, thinking back, I can imagine a lot of anxiety about your children and their future could have been taken away had you at the beginning already thought about having a life insurance policy, even if it wasn't big, but having something, having a will, having some of those fundamental end-of-life thoughts as soon as you have a child. So something I wish I would have done as well was to look at, I think they call it dread cover disease, which I didn't have, and a life policy, but not a dread cover policy. And my medical aid at the time was also very low one. You were 26. Come on. When you're young. You know, what can go wrong? And so I found myself in a situation where it took me three years to pay off my medical expenses from the treatments. And I mean, medical aid covered a portion, but I wasn't covered for everything. So there was always co-payments and this and that. And when I left work, I couldn't claim anything to support me during that time because I didn't have the dread cover disease. Also, I wasn't fully seen as a stage three or four because they said I was sort of in stage two, three. So stage one and two doesn't get any payouts. So then, you know, faced again with that situation, like I'm not sick enough to get support. So that angered me a lot that I was paying towards these policies, thinking that they'll be there for you when you need it. I want to talk now about the experience of the hospital. One thing that you constantly spoke about, which is how cold, impersonal, you know, like this individual who's helping you, they don't see the human behind this. They see you as just this is another number for today. Run me through that experience. Yes, as you alluded to, it's a cold experience. And the reason why I always say that is number one, they use big words. It's like they're back in that lecture room giving the answer that they need to pass a test. But they don't break it down to what we actually, how do we understand it and what does it mean to us? And that's been a constant with the different doctors that I've experienced is nobody has taken the time to really break down these concepts and make it digestible as well. Another thing is that I always struggle with the short timeframes of 10, 15 minute visits because you can see the doctor looking at the watch when you're nearing the end of your time and you're rushing through it. And you know I always try to be prepared and have questions written down, noted down and sort of taking answers, but it constantly felt rushed. But when it came to going to the doctors for the cancer, it was often silence. You would lay, they would do the scan and then they would stop and now you're getting worried because they're stopping at the same spot. And I would ask, is there something that you're concerned about? And they would use a big word. I'm like, okay, what does that mean? It's like, no, we'll discuss it now in the room. And going into the room, it wouldn't be a discussion. It would be just like, no, we identified a concerning nodule, whatever the case may be, and you need to go for an extraction. And they will start writing on the paper, here, go downstairs, they will do the extraction. And that is it. It doesn't give you room to really process, understand, have autonomy over your own body. You know, this is your life. People are just dictating it after like you can't even ask a question. Yes, 100%. And also, I had a doctor get annoyed with me because I asked, is this necessary? And I don't know if the doctor felt like I was undermining his experience and all the certificates that are hanging there on the wall. But it was like, is this really necessary? What is it going to help me? Is it going to get me closer? Now that I'm in remission, I had to go for alcohol ablation. They thought that that will help me with killing off the cancer cells. Because now this is after the treatment and after operation done, two treatments done, and I'm still having cancer cells being picked up. They then sent me for alcohol ablations. And before they did, I asked, is this necessary? I've never heard of this alcohol ablation before. I did some Google research about it. It didn't make me feel like I understood really why I was being sent and how it would work. Because in effect, they're just injecting pure alcohol into my growth that I have. I remember him not even answering my question, just giving me the page, phone this doctor, make the appointment, and then I'll see you again in six months. And that was it. I did go, but I did three out of the seven sessions. It was painful. It wasn't a nice experience. And also just the experience with the doctor was very rushed. Like there was no talking. This doctor just didn't want to talk. And I'm not saying this is like a bar where you go after a breakup and you want to talk to the bartender or your hairdresser about your life problems. But if you're going to be interfering with my body, I need to build some sort of relationship with you and feel safe. And I don't know if that's with everyone, but I need to first connect with the person that I'm going to allow in my personal space. And I didn't have that with this doctor. After the third session, I just didn't feel comfortable. I had this feeling in my stomach that every time I walk through the doors, just uncomfortable. I just felt very uncomfortable. And I've promised myself, I'm not coming back. And that's then when my mom had offered that I go to Switzerland to see doctors in Switzerland for a second opinion. This is the most common thing that I hear from people, our community, where they say they feel so dehumanized. It's not like you said, it's not a bar. I don't need a chat. I just want you to explain to me what's going to happen. Why is it happening? And just run me through it as you're doing it so that I just feel informed. And then we left off with you going to Switzerland. What was the care like as compared to here in South Africa where you initially started? It was overwhelming, but in the sense of it was so different. Here you walked into a hospital and first of all, everyone greeted and it felt like VIP treatment because there was a head of the doctor unit that came to say hello to me, introduce me to the two doctors that will be taking care of me because I went through to the MRI, needed to take bloods, spoke then about nutrition. Everything was explained beforehand. And I was a bit confused. Why am I being asked all of this? Because I came with my paperwork. I mean, all the blood tests, everything was there. But they said, no, they want to start from scratch and really get a full picture from their side. It was interesting that they took their time and for somebody so senior to actually come and introduce me to different doctors. And while we were walking to the room, there was never silence. There was always somebody accompanying me from one room to the other one, which never happened. I mean, usually I get a script and say, you know, downstairs, go for the scan or ask them at reception where the room is. So I really appreciated that experience. You know, somebody walking alongside you and then asking questions. The most interesting part, which actually changed the way I plan or how I interact with doctors here is after I did all my tests, we came back and then the doctor sat my mom and myself down and they said they had a round table discussion with different doctors who looked at my case. So he explained that to me and he said, no, what we do is we actually look at different aspects. So we had a dietician there. We had an endocrinologist. There was an oncologist. And there were other doctors, I don't recall. Basically, the different disciplines looking at you holistically. Everyone is a specialist in their own field and working as a team on this as a project and they put a plan together. What I do here when I go to the doctor now, and I wish I would have done this sooner, is I come, first of all, very prepared. So even if I'm going because I need to go for bloods, I first want to know which bloods I'm going for. Also the cost to make sure it's covered by medical aid. And if not, how much am I going to be paying out of pocket? And a set of questions as well. And that has helped me a lot to also redirect the doctor. So when the doctor's coming with certain phrases I write down the word and I sometimes ask how do I spell that. And I think that has sort of helped me to feel like I'm more in control and understand as well. I think that's a great way to gain control of that situation. Because I think control is basically a euphemism for power, is empowering the self. That's what you're doing. You are taking charge. You're saying you're leading the discussion, which means you're in control. You have the power. This is your life. And this specialist is honestly, it's a tool for you to get better.