My name is Ursula Zoutendijk and I have 2 stories to tell.

This story is about supporting those we love, preparing yourself for when your loved one is losing the battle against cancer, and fighting breast cancer myself.

My cancer road started when my sister Celeste, who then lived in Durban phoned me to tell me she woke up the morning with a lump under her arm and it was painful.

I told her to go to her GP so he can see what was wrong.  She phoned me later that day and told me her GP removed the lump and he said that it looked like an infected sweat gland however he will send it away for tests.

On the 4^th of December 2013, my phone rang.  I saw it was my sister and I loved talking to her.  I still remember it as clear as yesterday.  I answered my phone, usually, I get laughter but not this time.  This time it was quiet.  I said again “Hello you there?”.  All I could hear was crying now.  I asked her “what’s wrong? Are you ok? Why are you crying?”  Then I heard her voice and it still breaks my heart.  She said “Ou-sus, the test results are back. She then told me the test results from the lump under her arm.  I asked her what did the test results say?  “It’s cancer” was her reply.  I stood still and could feel the tears welling up.  I took a deep breath.  I work in Pathology and I know cancer is not always a death sentence.  I encouraged her as best I could, she said she would fight this.  It was stage 3 lymph gland cancer”.  I couldn’t breathe, my mind went blank and my heart hit the floor.  I wanted to run away but where?  I stayed calm and asked her what now?  She was referred to a surgeon as they suspected cancer originated in her breasts.   They were going to do more tests.  Her husband was supportive, I broke the news to our parents and brother, and she said she would fight this. I asked her to be honest and not hide anything from me.

After 2 weeks and a long road of scanning and blood tests, it was confirmed.  My beautiful baby sister at the age of 34 years old has breast cancer and not just breast cancer.  Genetic breast cancer.  We know also that cancer has spread to her lymph nodes. The surgeons decided that they must do chemo first and her chemo started in January 2014. In February 2014 2 days after her 35^th birthday, she was told it is now stage 4 breast cancer.  My heart was broken.  She is fighting so hard but it is just getting worse.  In May 2014 I flew from Cape Town to Durban to be with her in hospice.  After a week I had to come back to Cape Town and say my good-bye to her.  Oh, that was the hardest good-bye.  How do you say good-bye to your sister knowing that she can slip away from you any minute?  Knowing you might never see her alive again?  We kissed and she said to me “I love you forever and a day”.  I told her “I love you like jelly tots

I was tested for genetic breast cancer and I was negative.  My mom was devastated.  She cried every time I spoke to her.  My mom even said if she knew she had the gene she would never have had any children.  I just told mom “Hey mom guess what you didn’t choose us, we chose you”.  Celeste was still fighting cancer and going through the chemo.  Even after losing her hair and being ill.  She fought with everything inside of her.  She fought for her kids.  She had a 14-year-old boy Calvin John and a 3-year-old daughter Isabella Calista.

On the 1^st of September, Steven phoned us to tell us that Celeste took a turn for the worst. The one night mom phoned and said that they are stopping chemo because Celeste’s white cell count it was too low.  She knew she is dying.  I spoke to my sister, I said, “Celeste, you know that if you were going to be healed you would have been healed now.  It’s your time but I can tell you today.  Your children will become the center point of my universe.  I will be there for them.  They will need nothing.  That my little sister I promise you.”  The tears stopped.  She said thank you.  Mom took the phone and said thank you.  I stood in a mall full of people walking around me. My soul was ripped out.  My heart was lying on the floor.  I never felt so alone in my life.  The next morning Celeste could not talk anymore.  She was rushed into surgery as she had pressure on her brain.  I prayed so hard for God to take her but she came through the surgery.

It’s 05H20 on the 16^th of September 2014 and I wake up with my phone ringing.  I see it’s dad calling.  Do I answer?  I am scared, I don’t want to know.  I took a deep breath and answered.  I heard our dad’s broken voice saying “Ou-sus, she is gone, she passed away a few minutes ago”.  All I could say to dad is how sorry I am that they lost their daughter.  Mom was broken.  When I said good-bye to them and switched the phone off, I stuck my head in the pillow and wept.  I no longer had a super brat for a little sister.  I no longer had a confidant.  I no longer had a best friend.  My little sister was no longer.  I looked up to my dark ceiling and said good-bye to her.  She died at the age of 35 years, 6 months, and 28 days.  She fought a battle that made me proud to be her sister.  She never gave up.  She is my hero.

Fast forward to the 26^th of April 2017 I woke up.  So grateful I am a day off work and eventually, I decided ok now I have to get out of my PJs.  I started changing and as I started putting my bra on I looked down and saw a dent in my right breast.  I started panicking.  I calmed myself down and told myself that I might have slept wrong and it caused a dent.  That night in the shower I looked down and still saw the dent.  I took a decision right there and decided I will not stick my head in the ground and ignore it. I couldn’t get an appointment with my GP so I decided to just go for a mammogram.  I booked my appointment and on the 2^nd of May 2017.  I did my mammogram.  I watched the radiologist like a hawk and after the 1^st scan, I saw it in her face.  She finished the mammogram and then did the scan.  I asked her to be open and honest with me and she told me it didn’t look good.  I need to immediately get to my doctor, and she was going to phone him.  I told her it’s ok I will send him the results but she insisted because she said woman has the tendency to stick their heads in the sand.  I told her I wouldn’t because I have walked this road with my sister.  She still phoned my doctor and he called me in tears.  He knew everything I went through with my sister and he had no words for me.  I told him it’s going to be ok.  We will get through this.  He booked my appointment with my surgeon.

I saw the surgeon on the 5^th of May 2017.  Dr.  Sonday was so gentle and I told her that I am also in the medical world and I have walked this road with my sister.  She couldn’t believe it when she examined me that I noticed the dent as the lump could not be felt.  She told me 80% of women would have ignored that slight dent.  She sent me for a biopsy and on the 9^th of May 2017.  I was officially diagnosed with breast cancer.  Now the surgeon and I had decisions to make and after discussing my options I told her I would rather have a bilateral mastectomy.  I didn’t want to do this twice and I didn’t want to go through life with a sword over my head.  Take my boobs because my boobs don’t define me as a woman.  I wanted an immediate reconstruction, but the cost was ridiculous.  So, I opted to have a reconstruction done later.

I decided to tell my manager and I gave her permission to tell our department.  Why would I do this?  Well, I knew that I was going for an operation and when I came back everyone was going to see a difference and I was going to do chemo and hey a bald chick in a department was going to raise questions and maybe through this someone will decide to look at their breasts and ensure if there is anything different that they seek medical advice immediately.  The men will learn how to treat a woman that is losing her breasts and how to support a woman going through cancer because God forbid this happens to a woman close to them, then at least they will know what to do and how to support her.

I was booked into the hospital on the 30^th of May 2017 and my operation was scheduled for the 31^st of May 2017.  There was no fear.  There were no tears.  I knew my sister died and all I kept asking God is “please let it be in time because dad can’t handle losing another daughter”.  My operation started at 14H00 on the 31^st of May 2017 and I came out of the theater at 19H00 that evening. Very groggy but alive and apparently talking about pink elephants.  The next morning, I got up to shower and made a decision.  This would not get me down and with the support of my family, friends, and colleagues this would pass.  My surgeon helped me all the way in the hospital and is still supporting me.  If I have to be honest the friends become less and they wander off.  Colleagues forget you are doing chemo and trying to be normal at the same time, so adding to the stress does not help but I knew I was strong enough to absorb everything.

I met my beautiful friend Karen Anderson through Wings of Hope Facebook page.  We realized that we were going to start chemo together and we decided we were going to be chemo buddies.  Shame the poor chemo room was never ever the same again.  We had the same Oncologist and I think our poor Oncologist fled to East London when our Chemotherapy ended because of us.  You know in the Chemo room they tried to separate Karen and me but then we just talked through the barriers.  They told us that we must quieten down.  Then we would be quiet for about 2 – 3 minutes and then start talking to each other through the barriers again.  They gave up on us and just kept us together.  They realized the noise level was lower if we sat together than if they kept us apart.  Hey, we are buddies you can’t keep buddies apart.

I joined Wings of Hope when they launched 1^st time in Cape Town.  I was at their 1^st meeting and enjoyed every minute.  I felt at home with everyone and thought here I can be who I am and where I can learn.  I never thought then I will get involved.

I got involved with this beautiful support group Wings of Hope because I needed to be around people that knew what I was going through. The ups and downs we have.  I need a group that could help me cope with all aspects of cancer survival, and also give me a safe environment to share my experience.  I wanted to learn so much more about cancer and not just through doctors but from others who were facing similar obstacles.

Wings of Hope became my family.  I don’t feel judged when I have a bad day.  I can call a friend and tell them about my day and I will always have a comforting word on the other side of the line.  I have learned that by being a supporter first for my sister then becoming a warrior for me and now a survivor I am back in the supporter role that I can now also teach others that they are not alone. They have a place where they can talk openly and honestly about your feelings without judgment.

I might no longer have a blood sister on earth but in Wings of Hope, I have many sisters that I love dearly.