Santana Campobasso survived brain cancer | nasal polyps | brain surgery | radiation treatment

DESCRIPTION

There isn’t a great deal Santana Campobasso can tell you about her cancer, except that she has survived.  That’s because she was four years old when diagnosed with nasal polyps that resulted in the discovery of a brain tumor and a diagnosis of brain cancer.  Doctors also found meningitis.  Santana underwent an eight-hour surgical procedure and was told half of her head had to be shaved before the surgery.

After treatment, life was not easy. The surgeon said her chances of survival were low. She was also told it would be difficult to walk and difficult to speak, and on both fronts she had to start from scratch. Initially confined to a wheelchair, in school, she failed to pass first grade and was taunted by her classmates.

In retrospect, Santana says overcoming numerous physical hurdles and her often-mean classmates was a blessing as it has provided her with a level of toughness that went on to serve her well.

These days, in every way, Santana is flourishing.  Not only can she talk, but in addition to English, she has learned how to speak Afrikaans.  Not only can she walk, but in addition to being a successful hairdresser, Santana is a belly dancer!

By way of advice, Santana Campobasso says if you are diagnosed with cancer to keep fighting, that a cancer diagnosis isn’t a death sentence, it is just a new chapter.

Additional Resources:

Support Group:

Cancer Association of South Africa (CANSA)   https//www.cansa.org.za

TRANSCRIPT

Bruce Morton: Greetings, and welcome to the @CancerInterviews podcast.  I’m your host, Bruce Morton, and on Cancer Interviews, we chronicle the journeys of cancer survivors.  On this segment, our guest is on a cancer journey, but hers is a bit different from all other guests we have heard because she was diagnosed at age four.  She is Santana Campobasso from Pretoria, South Africa, and we are going to hear how she survived brain cancer.  So, now let’s get started, and Santana, welcome to Cancer Interviews.

Santana Campobasso: Thank you, Bruce, thank you for having me and warm greetings from South Africa.

BM: Wonderful, and you are our first guest from South Africa and the continent of Africa.  Santana, the first thing we want to do is the first thing we at the beginning of all of our interviews, and that is to get to know you better, exclusive of your cancer journey.  So, if you would, tell us about where you are from, what you do for work, and when time allows for fun, what you do with that time.

SC: I am from Pretoria, South Africa, it’s usually very hot here.  I am a hairdresser, I have had my business since 2014, and for fun, I am a belly dancer, so that’s basically my life in a nutshell.

BM: I have to tell you, and I know you are not hearing this for the first time, you have a first name that is a bit unusual, Santana.  Tell us the story behind your getting that name.  I know you didn’t have much of a say-so in terms of what your name was going to be, none of us do, but how did you get the name, Santana?

SC: My father is Italian, and he has been obsessed with Carlos Santana since Lord knows when.  He was completely flabbergasted by Carlos Santana and his music, and there was an argument between he and my mom as to what I would be named.  She wanted to be named after the vocalist, Sade, and to be quite frank with you, I am glad they went with Santana.  It is an unusual name, but I am honored that there are two people in Pretoria that are named Santana.

BM: The two of you don’t ever get confused with one another, do you?

SC: No, I don’t know who she is.  I just know that she is one of my client’s best friends.

BM: Now I want to move on to your cancer journey, and I want to tell you we had another guest on our program who survived brain cancer, and he was diagnosed at age eleven.  Given his age, he didn’t think much about his diagnosis and his treatment regimen, he just followed along because he knew he was sick.  In your case, you were diagnosed at age four.  I can hardly remember anything that took place in my life at age four, so I can totally understand if you remember anything tied to your diagnosis or its treatment, but do remember anything, what was it?

SC: I just remember being in the hospital at that age, but as a four-year-old, you know you are sick, but you don’t know what exactly is wrong with you.  You see your parents going through some hardship, yet you don’t even understand why.  For me, I just knew I was sick, for my parents it was a very hard time, but as a child you have no recollection is what was going on, so it’s a lot different, but what I can remember is that I was in hospital, I went looking for my dad and I remember going into the elevator.  I remember my parents were downstairs at the time, having lunch, I just remember going into the elevator and pressing random buttons and I wasn’t sure where I was going, I just remember the elevator was going up and down, up and down.  Eventually a nurse came on the elevator and asked me where I was going, and I said I am looking for my dad.  She told me not to worry and that she would take me back to my bedroom, that my dad went off with my mom and that I dad would be in my room shortly.  That’s one of the things I remember.  Also, I had a very prominent scar.  They shaved half my hair off because I had brain surgery.  As a child, I was picked on because of it, and I was itching a lot because of the scarring.  That’s all I can remember.

BM: Obviously the treatment of brain cancer is far more complex than going up and down an elevator.  While you might not remember much, I suspect your parents do.  What did they tell you about your treatment?

SC: My mother told me when I was at an age of understanding that I went for radiation, that I went in for a brain surgery that took approximately eight hours.  That’s all I can tell you.  She also said it was a very difficult time for her and my father.  They didn’t expect me to survive.  I think the survival rate for my type of procedure was very low.

BM: So, that obviously was a very difficult time for all, but for most people on a cancer journey, they are aided by caregivers.  If you would, describe the caregiver role taken on by your parents.

SC: It was tough, especially with the doctor saying that I was unlikely to survive, and with my procedure I was unlikely to walk again and unlikely to speak again, plus my having to start from scratch.  So, at a time in which I had barely learned how to do both, now I had to start all over again.  That was a scary journey for them.

BM: So, was there much in the way of caregiving for them to do, or was the bulk of this handled by health care professionals?

SC: My mom was a first-time parent, my father had four children from a previous marriage, but the severity of what I went through, no one is really prepared for that.  As a result, we had to rely on a health care professional to tell you what to do and what to prepare for.

BM: At some point did you become aware of the magnitude of what you were battling?

SC: The scarring, some kids would see the scarring and also because they knew I had had a brain operation, well, kids are mean, kids can be very horrible, and they are honest.  On a few occasions, I was told that was considered stupid, and then I failed the first grade.  So, I had to pull myself and prepare myself for what I was going to have to go through.  But as I said, children are very honest, they are super honest, but at the same time, they were very mean.  I do recall that there was one exam that I aced with flying colors, and one girl said to me, “How the hell can you pass that (exam) when you just had a brain operation?  You’re supposed to be stupid.”  That hurt my feelings but at the same time, I developed backbone.

BM: In one sense, today, now that you are pretty much removed from your treatment regimen by years, in that sense, can you consider that a blessing, not that you went through brain cancer, but that one of its proceeds was gaining backbone?

SC: I can say definitely 110 percent, I am glad I went through what I went through, because unfortunately life can be very difficult, and you need backbone and substance to get through life.  So, there are no regrets whatsoever.  On one hand I am grateful for what I went through because I now have backbone and I am ready for life and I am ready for any curveball that is thrown at me because at the age of four, how do you know what you are surviving, so, yeah, I definitely feel this has made me stronger in the longterm.

BM: Well, you’re right, kids can be very cruel and emotionally, that obviously can be quite hurtful, but it sounds like you had this lethal one-two punch to deal with, on an emotional level from your peers, but also on a physical, medical level from your treatment.  Looking back, which was tougher?

SC: I would have to say school.  School was tough.  Like I said, as a four-year-old, you have no recollection of what is wrong with you, you just know that you are sick, but when you have these curveballs thrown at you and you somehow have to develop this backbone, I would say definitely, school was far worse.

BM: Santana, at some point did you get to the other side of the hill with the kids, did the razzing and all the unpleasantries, did you reach a point in which you got past that, or was that something that was relentless throughout your grade school and middle school years?

SC: It’s definitely something that I got past, because just like dealing with a brain tumor at such a young age, you basically become a fighter, so that anything that is thrown at you, you fight.  You have to be made of some sort of substance to be able to live.

BM: Just because dealing with the other kids was difficult doesn’t mean the cancer treatment wasn’t difficult, what was the most difficult aspect of the treatment?

SC: If I had to ask my parents, it would be the recovery directly after the surgery.  Wondering if I would be able to walk again, if I would be able to talk again, if I would be considered normal again.  I think that was the hardest thing that I had to go through and what my parents had to go through.

BM: As one listens to you today, in terms of how you speak, you sound like anybody else.  How difficult was it to get to that stage?  Did you have to work with a speech pathologist, and if so, to what degree?

SC: As far as I am concerned, yes, I did.  The miraculous thing was, prior to the brain surgery, because my father is from Italy, he was teaching me Italian, I was learning to speak English and being in South Africa, my mom wanted me to learn Afrikaans.  Today I can only speak English and Afrikaans.  Italian, unfortunately, is one of the languages I had to neglect.

BM: But you did reach this point, and I can only imagine it took a lot of work to get you to get to this point.  Is that fair to say?

SC: Yes, it did.  I do recall that I was in a wheelchair.  It was very traumatizing for anyone to see what I had to go through, especially as a little girl, being that innocent.  It was a scary period for all of us.

BM: We have talked about your early years with this, but even without cancer, teen years can be very difficult because you want to fit in and that sort of thing.  What were your teen years like in terms of your treatment, and what were your teens like from a social standpoint, now that you had a bit of a harder shell?

SC: My teen years were far easier.  I have a very outspoken personality, and I really don’t care what anyone thinks of me.  I just basically think that life is short, and I am here for a good time and not a long time.  In terms of school, in high school, I developed this whole “I don’t give a damn, I don’t care what you think of me” attitude.  I went through a very hard time, so at that point, maybe it was fair to say, I felt invincible, maybe arrogant.  Maybe it is human nature to feel that way.  You know you have survived.

BM: We talked about teen years from a social standpoint, but what about treatment?  I am guessing the scope of your treatment tailed off, it decreased a bit with the passage of time, at least I hope it did, but in your teen years, what did treatment consist of?

SC: I just have to go for a CT scan every five years.  At nine years of age, they found another tumor which was basically benign, they gave me chemo pools for treatment and other than that through high school and beyond, I have been very healthy, that there are no repercussions of what happened in the past.

BM: You were diagnosed with brain cancer, and there is more than one type of brain cancer.  With which type were you diagnosed?

SC: But it was a nasal, sinusitis sort of brain cancer.  My entire childhood I basically had polyps and the polyps grew into a tumor, and when they discovered the tumor, the doctor just thought it was a normal polyp and he took me for a normal CT scan, and he discovered that the tumor had grown on the front part of my head and that’s when I was sent into surgery for about eight hours.  I have been diagnosed with multiple polyps, and I also had meningitis.  They determined it was a nasal polyp that led to the brain tumor and that’s how they discovered the cancer.

BM: As for the here and now, Santana, to look at you and to listen to you, you look and sound like the picture of health.  Do you feel 100 percent healthy, or if not 100 percent, how close?

SC: I feel very healthy.  I am 32 years of age.  I am 110 percent, I am very active.  There is nothing really wrong with me.  For example, if I get a cold or flu, I manage to fight it off, so, I know that I have got a fighting spirit.

BM: Anybody who goes on a cancer journey needs some measure of support and where you are in South Africa, there is an organization that you have gone to, the Cancer Association of South Africa, or, CANSA.  To what degree has CANSA been of help to you?

SC: It is not even about CANSA helping me.  Because I survived brain cancer, I decided to give back to my community.  From the age of 16 and knowing what I have gone through and having a family that battles cancer constantly.  I have a family that has been wiped out by cancer.  My surviving is my only way of giving back, so since the age of 16, I have tried to be a part of the CANSA organization.  I was named its Global Hero of Hope for the year 2019.  I try and raise awareness for cancer patients and for research by doing Shavathons and Cancer Relay for Life, for example, and I also started my own little venture, which is called Courageous Me that was a thing I felt I needed to do in connection with being a Global Hero of Hope.  I never wanted it to be about me.  I just wanted to give it back and give to the true survivors that had gone through something worse than what I had gone through.  Like I said, I was four years old when this happened to me, but I am seeing so many people, knowing they are going through, and it’s a different ballgame when you see the effects of cancer.

BM: I would like to hear a little bit about an event you organized, and if I have the name of it wrong, please correct me, but I think it is the Shavathon.  If you would, talk to us about its genesis, how it started and what you are still doing with it now.

SC: Shavathon basically started with CANSA.  What we try and do is get hair donated, we get volunteers to shave off their hair or cut off about 30 centimeters and that gets donated to CANSA and gets used to make wigs for patients undergoing chemotherapy.  If you cannot donate your hair, that’s fine, spray your hair for cancer and make some sort of contribution toward CANSA. 

BM: Does this go on at a specific time of the year?

SC: If people want to cut their hair, they are welcome to cut it and donate any time of the year, but Shavathon is usually held in March.

BM: Okay, Santana, we’re going to start to wrap it up, and even though your cancer journey has its unique aspects, we want to end the interview the way we always do.  Specifically, if you had a private audience with someone who has just been diagnosed with brain cancer or they have learned they could be a candidate for brain cancer, and you had a message for that person, what is the most important part of that message?

SC: To keep on fighting.  Just basically, keep on fighting, and the second thing is, cancer doesn’t mean it is the end of your story, sometimes it is a new chapter.

BM: I would think sometime along the way when you drive home that message, you would just point to your own story and look at the life you’re living.  You have overcome this and again, you appear to be the picture of health and if you can do it, I suspect they can, too, yes?

SC: Correct.  They can.

BM: Wonderful.  Santana, thank you very much for sharing your story.  As we have mentioned a couple of times, it is unique in nature, in that you were diagnosed at a time in your life different from so many others.  So, again, Santana thanks so much for sharing your story with us and thanks for appearing with us on Cancer Interviews.

SC:  Thank you so much for having me.

BM: That will do it for this segment of Cancer Interviews.  We hope that what you heard can be of help on your cancer journey, and/or that of a loved one.  So, until next time, we’ll see you on down the road.

Support Groups…

Cancer Association of South Africa (CANSA)…

www.cansa.org.za

SHOW NOTES

TITLE: Santana Campobasso, Brain Cancer Survivor – Pretoria, South Africa

Santana Campobasso of Pretoria, South Africa, was diagnosed with Stage One Piloytic Asterocytoma brain cancer at age four. After an eight-hour surgical procedure and twenty doses of radiation, she had to re-learn the ability to walk and talk, all while dealing with the taunting of classmates. She overcame those challenges, helps those diagnosed with brain cancer, is now a successful hairdresser and when time allows, she is a belly dancer.

#braincancer #piloyticasterocytomabraincancer #braincancersurvivor

Additional Resources:

Cancer Association of South Africa (CANSA)

www.cansa.org.za

Time Stamps:

04:20 Recalls being diagnosed with piloytic asterocytoma brain cancer at age four.

06:46 Parents recollection of Santana’s treatment.

09:24 Says post-treatment, classmates were cruel.

13:21 Eventually Santana got past the cruelty from other kids.

16:20 Emotionally, her teen years were easier.

18:47 Santana describes her brain cancer.

24:11 In an effort to give back, she organized a support event, Shavathon.

KEYWORDS (tags):

brain cancer

cancer

piloytic asterocytoma brain cancer

brain surgery

cancer interviews

multiple polyps

cancerinterviews.com

meningitis

bruce morton

chemotherapy

santana campobasso

chemo

shavathon

radiation treatment