In today’s @CancerInterviews podcast, Xylan van Eyck of Gqeberha, South Africa tells hostJim Foster how he survived Hodgkin lymphoma. It wasn’t easy. He underwent radiation treatment and chemotherapy. But when they failed to kill the cancer, Xylan needed a second round of chemotherapy, which included a higher dosage, that and a stem cell transplant. After all that, Xylan went into remission, and resumed competitive cycling.
Xylan van Eyck was successful broadcaster and in excellent health, but at age 26, while vacationing in Thailand, he started vomiting blood. Upon his return to South Africa, he broke out in a rash from head to toe. He went to see his doctor who suspected Xylon had an ulcer and ordered a series of scans. They did reveal an ulcer, but they also revealed several of his lymph nodes were enlarged, which indicated Hodgkin lymphoma.
Xylan tried to be optimistic when he got the news, as doctors said the cure rate for Hodgkin lymphoma is very high.
Treatment for Hodgkin lymphoma meant a regimen of chemotherapy and radiation. He experienced hair loss and nausea. The first six months of chemo didn’t work, so his care team proposed a higher dosage.
This meant four times in the hospital for two to three days at a time, which wiped out his immune system, and at the end of that he would have a month in the hospital in isolation, where they did a stem cell transplant. He ended up being in the hospital for another three weeks. Depression crept in as he was told there were still cancer cells around his arms. This time doctors proposed a higher dosage of radiation.
Xylan van Eyck had gone from being told his cancer would be easily curable to two years of treatments that didn’t work to being told he would need more treatments. This latest bit of radiation was okay for Xylon, except a few days when it really affected his throat and swallowing food was extremely painful. But a PET scan showed that the radiation had done the trick. Xylan’s treatment wasn’t complete, as he was told he needed to come in for additional scans every three months. Eventually the intervals between tests went from three months to six months.
Xylan is back at home now. His home backs up to a game reserve and he revels in the sight and sound of animals in his backyard. He has learned to never take a day, any day, for granted.
By way of advice, Xylan van Eyck says when dealing with cancer, the body and mind have to team up. When one is struggling, the other has to step up.
Additional Resources:
Xylon on Twitter: Twitter@XylonVE
Xylon on Instagram: Instagram@xylonvaneyck
Support Group: Cancer Association of South Africa
TRANSCRIPTION
Jim Foster: Hello, and welcome to the Cancer Interviews podcast. I’m your host, Jim Foster, and on today’s program, we have a wonderful guest whose story we hope will provide a great deal of information and inspiration. He is a Hodgkin Lymphoma survivor and joining us from Gqeberha, South Africa. Please join me in welcoming Xylan van Eyck to the show. Xylan, welcome to Cancer Interviews.
Xylan van Eyck: Thank you, and well done with all the pronunciations with my name and where I live.
JF: As you mentioned before we went on, Gqeberha is formerly known as Port Elizabeth. Now, before you get into your cancer journey, why don’t you take a few moments to tell us about yourself and what your life was like prior to your diagnosis.
XVE: I was lucky enough to be born on the southern tip of Africa, along the southern tip of South Africa in Port Elizabeth, a very beautiful part of our continent of Africa. Grew up with a single parent, with mom working hard to look after me as an only child. Had a wonderful childhood. We played outdoors a lot, played sports in the street. As an outgoing kid, I loved that. Completed school in Port Elizabeth. When I was in high school, radio became a big passion of mine. I wanted to be a broadcaster. So I would come home after school, and I would stop playing with kids, I would sit down next to the radio and listen to my favorite presenters, copy things they were saying, try to imitate them and at the age of 16, when I had three years left of school, I got a part time job in one of the local radio stations, and managed to fulfill that passion of mine. I have lived in South Africa all of my life, lived in Port Elizabeth until I was 23, at which time I had worked in radio for seven years. Port Elizabeth was a smaller city and if you wanted to advance, you had to go to the big city. In my case, that was Johannesburg, that was where all the major television and radio stations were, and my career sort of took me there later on in life. I worked at some of the biggest youth stations in South Africa, then transferred to television, worked for the biggest sports station in Africa, SuperSport, and life was good. I was this kid who had grown up in the hood, forged a career for himself in what was absolutely his passion, got to the big city, got to work with some of South Africa’s biggest celebrities. So, like I say, life was good until I was 26 years old, when I got the diagnosis.
JF: What was your health like in the years prior to cancer?
XVE: I have always been a cyclist. I started cycling when I was 16 years old, so I thought I knew what health was. I was active, so to me it was a surprise, but it didn’t happen overnight. I would say two to three years before my diagnosis, I started getting sick regularly. Every month I would be vomiting, I would get bronchitis, I got shingles a couple of times, but didn’t connect the dots. It was only when my wife and I had been married for about six months at the time and we were traveling through Southeast Asia, and were lying on this beautiful island in Thailand, absolutely idyllic. I just wasn’t well at all. We went back to our hotel, I started vomiting blood and I thought something was seriously wrong here. So, when we got back to South Africa, thought I needed to get this checked out, but upon my return, I felt fine. That changed my mind until I broke out in this rash from head to toe. I had never had anything like that, that and consistent goose bumps that didn’t go away. That was my body’s way of telling me I needed to get to the doctor. I had a fantastic doctor who was very switched-on and loved getting to the bottom of problems. She really wanted to find out what the issue was with regard to the blood I had been vomiting. She suspected I had an ulcer, so she sent me for scans. It was a junior radiologist that did a scan on me, looking for an ulcer, which they did find; but I knew something was wrong when she returned with a senior radiologist, the owner of the practice, because they did find that several of my lymph nodes were enlarged, indicating Hodgkin Lymphoma.
JF: So, when you did the scan, did they take a biopsy of a lymph node, or did they just make a determination from the scan itself?
XVE: Some of the lymph nodes were under my arm, so I was in hospital for one night. The surgeon removed one of them, they sent it in for testing, and it subsequently came back positive for Hodgkin Lymphoma. I remember waking up the next morning in hospital, feeling groggy, and the surgeon showing me on his Iphone the size of the lymph node, how big it was and that it is not supposed to be this big. It was disgusting and I didn’t want to see that disgusting lymph node.
JF: How did you feel the moment the doctor told you that you had Hodgkin Lymphoma?
XVE: I am a very positive person, outgoing, optimistic person, which eventually caught up with me in my cancer journey, but the way it was presented to me was that Hodgkin Lymphoma, if you are going to get a cancer, this is the cancer you want. The cure rate, the response rate is very high, so don’t go writing your will just yet, you have nothing to worry about, you’re young, we can treat this. So, to me, I want to get this treatment sorted, it doesn’t sound so bad.
JF: In full disclosure, that was the same sort of cancer with which I was diagnosed, and I heard similar comments from the doctors at that time. In terms of your emotions, did you feel fear, anger, sadness?
XVE: I wasn’t mature enough to deal with my emotions. I didn’t have the tools at that stage, so I was positive, thinking I was going to push through. I believed you needed to do what you needed to do to get through it, and that’s probably what I needed. I will say I was in a bit of shock being 26 years old, never had a history of that in my family. It was a big disruption in my life, not something I was getting sick, cancer was certainly not what I was expecting. I didn’t do as well with my emotions as I did two years later when I was still getting treatment. That’s when my emotions changed, and they started boiling to a full.
JF: Were you with family or friends when you learned your diagnosis, and if so, how did they deal with that?
XVE: My wife was with me when we got the diagnosis, and I didn’t realize at the time how hard the journey is for the partner because you’re the patient, you are the one going through this physically, emotionally, spiritually. They are not going through it physically, but they are experiencing the uncertainty of the future and what the outcome is going to be. Until I went into remission, we started having these discussions about how hard it is for the people walking along in your journey. She said the prognosis sounds good, let’s take it a day at a time, let’s get through this. We had a good support system around, family and friends that provided meals, helped with transport, they tried to take day-to-day chores off our plate, that sort of thing. We both had flexible hours, ran our own businesses and from that point of view, it was much easier to manage our time between treatments. As I look back, I had to thank my wife several times, as at the time I didn’t realize how hard it was for her.
JF: Were you able to get the treatments where you lived or did you have to travel/
XVE: I was very lucky that I was able to get treatment in Johannesburg, where I lived at the time and the private medical care is world class. I was very lucky to be on a good medical aid system, so in two years, the bill was in millions, and I hardly had to pay for any of that, which was amazing. I remember being at the hospital being there for chemo, checked some of the other patients. They would fly in from as far as Botswana, Zimbabwe, you know, having to cross a border, and here I was, having to drive the 15 kilometers from my house to go through the treatment. I was also struggling with the smell of the chemo room, because as soon as I would smell it, I would have to run to the toilet. I was a cyclist at the time, and I had an opportunity to go to Italy for visit the Tour of Italy, which is the second-biggest cycling event, behind the Tour De France and it was an opportunity that I couldn’t pass up. I told my doctor I really wanted to go. He was a cyclist and he understood. He said I could go, but that I had to be careful because my immune system is compromised, and that upon my return he wanted to go straight to his office, so he could do a checkup. When I returned, I went to his office and there was no one around. It was late in the afternoon, most of the patients had left. A nurse showed up, administered the chemo, but again, I had to run to the toilet. That was part of my journey.
JF: It amazing how you react to certain scents.
XVE: I will walk in now, somewhere completely random and I will get a whiff of something, and I will think that smells like the chemo room and I have to deal with it and realize I am not in the chemo room.
JF: Were there side effects other than the vomiting and nausea, stuff like hair loss?
XVE: Hair loss was amazing. I am bald, so the hair only grows back on the sides, but it didn’t grow back during treatment. I didn’t have to shave. I was a very hairy person all over my body, but I wasn’t hairy anymore. One of the great things radiation gave me was that the hair never came back under my arms. That was wonderful, I am not complaining. Nausea was probably the biggest thing, but one of the other things I went through in the first six months of chemo was obviously when you come back for chemo two months later, you do a test to see if your white blood cells have recovered enough to get the next round of chemo. Two things I remember. Before that return trip to the hospital, you sort of psych yourself up, only to be disappointed by your blood not being ready and your have to go back home, and you have to do that all again four or five days later; but they would give you an injection to speed up the blood reproduction. I feel this sensation going up my back. There would also be this throbbing as more as blood was being made, I would physically feel it, and that night I wouldn’t be able to sleep well.
JF: During your treatment, what were your goals and dreams?
XVE: I am naturally the kind of person who wants to achieve his potential in life. If I look at where I grew up and the minimal opportunities I was afforded and what I achieved, that sums up my psyche. I believe I come from a world that is very small, but I wanted to get to a big world where the sky’s the limit for me, and nothing is impossible. I have managed to travel the world, I have managed to live in a small, tiny town, but have global clients in Europe and America and get to fly there often. I get to work with some of the best cyclists in the world who have won in the Olympics and the Tour de France, so there was no giving up, although I wondered how I was going to make it through the day. On a macro level, there was no giving up because I wanted to achieve my potential on this Earth because there is more and more and more that I want to experience. To me, cancer became a big part of my story, followed the journey, but it wasn’t the be-all and end-all. This cancer journey is an endless journey.
JF: During your first course of treatments, you were told that you were just about through with it, but you had a setback. How did that occur?
XVE: The initial diagnosis that I got was it was easily curable. That became very frustrating for me because the first round of chemo that I had was six months. I then had scans, gave the body time to recover, scans to see if the treatment had worked, but it didn’t work. My case was never cut and dried. Even two years after I went into remission, doctors would say it “seems” like the cancer is gone, but we are just going to check some more. The first six months of chemo didn’t work and that was disheartening, obviously; then they proposed a higher dose of chemotherapy, which would mean four times in the hospital for two to three days at a time, higher dose of chemo, killing the immune system, and at the end of that I would have a month in hospital in isolation, where they would do a stem cell transplant with my own stem cells. I ended up being in hospital for 22 or 23 days in total, and the hardest thing for me was the positive attitude came to an end because the hardest thing I dealt with my was freedom being taken away from me. For me, my freedom means the world to me. It is why I run my own business, I can manage my own time. It’s why I love cycling because if I go out for 200km bike ride and I am out in the world, I am free, I can go where ever I want if a bicycle can take me there. My time is my own. So, with this isolation, I lost my freedom and that mentally caught up with me. Some depression started creeping in. Then after that, I had a scan and was told there are still cancer cells around my arms. So, they proposed a higher dose of radiation, thinking it would do the trick. This went from being an easily curable form of cancer to two years of treatments that didn’t work a being told I would need more treatments. It was a tough two years, I am not going to lie. It wasn’t easy.
JF: As for your radiation treatment, can you describe that process?
XVE: I think had to go into hospital on a daily basis and I think it was about two weeks and I had a break in the middle. It was amazing. They radiated from the chest up to my neck and I felt nothing. I would go in, in the morning, got the radiation and went through my day like normal. One morning we had a big launch of our cycling team that going to go to the Tour de France. It became the first African team to win stages at the Tour de France. We had a big launch, I was standing in front of all these people that flown in from all over the world, hosting this event on the microphone, and I had had radiation. So, the radiation didn’t affect me that much, except two days when it really affected my throat and swallowing food was absolutely painful. I did not want to eat anything. Every swallow was excruciating. They were focused on my neck, and I got a heavier dose then, but that was the only pain I experienced. Most of the time, I felt nothing.
JF: Did chemotherapy and radiation affect your sense of taste?
XVE: I maintained a healthy appetite throughout, and taste wasn’t something was taken away from me. The psychological nausea did play into it. If I was approaching hospital that day, then I didn’t feel like eating because I knew it was going to come up later again, but my tastebuds were not affected.
JF: After the radiation, how you learn your cancer was in remission?
XVE: I had a scan, I think it was a PET scan. My doctor told me radiation finally did the trick, but then he said I needed to come in every three months, just to make sure. So, I could live my life for three months until the next checkup, but as the doctors became more comfortable, the intervals went from three months to every six months.
JF: You finally reached remission, and do you do anything to celebrate?
XVE: I don’t celebrate a particular day or date, but I can truly say I have never taken a day for granted since my cancer diagnosis, and while I was having the transplant in isolation for 22-23 days, it was a promise I made to myself. I had these big windows in my hospital room overlooking the skyline of Johannesburg and I said to myself when I go out there again, the moment I can feel and taste the outside, I made a promise to myself that I would never take a day for granted. I am on this health journey where I have completely educated myself in terms of nutrition, what you should be eating, what you shouldn’t be eating, to give my body the best fighting chance. Beyond that, I can’t do much, it is up to destiny, but I can say I love life to the fullest. I have really focused on building my dream business, a business where I get to manage my time and it affords me the time to chase my dream and passions whatever they might be at the time, but instead of pinpointing a date of remembrance, we lead these holistic lives. We have this house, where we have this ‘I can’t believe we get to live there” feeling, you know. We live next to a game reserve. People think because we live in Africa, we have lions in our backyard, and actually, we do have lions in our backyard because we share a fence with the game reserve. So, sometimes we have lions roaring at 5:00 or 6:00 a.m., we have rhinos sleeping outside our bedrooms some nights, sometimes 50 buffalo sleeping outside our bedroom, but to me that’s what it’s about. That’s our life. It’s a celebration of life and this I believe is what cancer gave us. The doctor who did the radiation said usually when you get to 40, you start wondering what you want your life to look like. I realize I am not going to live forever, so what do I want out of life, but a trauma like cancer moves that forward.
JF: We’re getting now to the point in which we want to wrap things up, Xylon, and we want to conclude the way we always do, with the following question. If you had a chance to speak one-on-one with someone who had just been diagnosed with Hodgkin Lymphoma, if there were one overarching point you would want to make, what would it be?
XVE: It is such a personal journey for everyone. I am very cautious with this question because I didn’t handle it well, I don’t think I had the tools to handle it in the healthiest way mentally in the beginning. At some point, you are going to ask, “Why me?” I think I would like to have been more mindful of the hard questions and feeling what my body wants to feel. Years later, depression started to set in, so what I would have would be more like observations than advice because it is such a personal thing. I would say if you feel like you have to cry today, then cry; if you feel like you have to laugh, then laugh. The body is such a powerful thing, and the mind is such a powerful thing. A cyclist friend who was in a horrific accident said the body always follows the mind. Just as we exercise the body, we have to exercise the mind as well; so, make sure on those days when we are struggling, when we are suffering, then it is time for the mind to pull the body along.
JF: That’s tremendous advice. I am sure people would like to learn about your ironman story. Is there somewhere they can go to learn more about your story?
XVE: Social media is probably the best and I try to be as transparent as possible, sharing some of my journey there. I recently achieved seven years remission and made a post of about the seventh ‘half ironman’ that I had completed, which was a happy coincidence. I was happy to share that with people. I am active on Instagram, Twitter and Facebook. I just try to help people along through this trauma we have faced.
JF: Thanks, Xylan. It has been a wonderful story you have shared. Thanks so much for joining us here. You have been an amazing guest, and we wish you the very best in the future.
XVE: Thanks so much, Jim. Thanks for having me. It is always a privilege to share this story and I hope someone gets hope from it. Thanks for having me.
JF: You’re welcome, and we hope everybody listening can take away something of value from this interview. I know I can. It was just tremendous hearing your story. As you listen, remember, you are not alone. We are all in this together, and we wish you the best possible outcome with cancer journey. So, until next time, we’ll see you down the road.
Additional Resources:
Twitter@XylonVE
Instagram@xylonvaneyck
Support Group:
Cancer Association of South Africa
SHOW NOTES
TITLE: Xylon van Eyck, Hodgkin Lymphoma Survivor – Gqeberha, South Africa
Xylon van Eyck endured a difficult journey, but he survived Hodgkin Lymphoma. In addition to a successful career as a broadcaster, he was in excellent health as a competitive cyclist.
However, while vacationing in Thailand, he began vomiting blood. Upon returning to his native South Africa, first an ulcer was detected, then a biopsy revealed Hodgkin Lymphoma.
Xylon underwent radiation treatment and chemotherapy, but they failed to kill all the cancer cells. He then needed a second round of chemotherapy, which included a higher dosage, that plus a stem cell transplant.
After all that, Xylan went into remission. He is extremely appreciative of his life and his health. Xylan cycles, runs his own successful business and lives next to a game preserve, which sometimes results in wild animals sleeping in his back yard.
Additional Resources:
Twitter@XylonVE
Instagram@xylonvaneyck
Support Group:
Cancer Association of South Africa
Time Stamps:
06:00 Xylan began vomiting blood.
07:02 An ulcer was detected.
08:00 A subsequent biopsy revealed Hodgkin Lymphoma
09:54 Reaction to diagnosis.
16:36 Xylan describes the side effects of chemotherapy.
20:30 When the first round of chemo didn’t kill all the cancer, a second round took place, along with a stem cell transplant.
24:45 Radiation treatment briefly affected Xylon’s throat, causing extreme pain.
26:21 A PET scan revealed he had gone into remission.
31:00 Xylan’s advice for those diagnosed with cancer.
KEYWORDS (Tags):
hodgkin lymphoma
lymph nodes
cancer interviews
chemotherapy
stem cell transplant
radiation treatment
pet scan
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