My Roller coaster….
I named my cancer journey the roller coaster as I felt like I was on a roller coaster from the moment it all started. With a roller coaster you have the 4 parts:
Being strapped in and waiting (15/05/2017)
The climb (26/05/2017) – The longest part of the roller coaster
The free fall (26/06/2018)
The stopping moment
Being strapped in and waiting:
The first part of my roller coaster started in the first week of May 2017. Just before my Dad's 50th birthday. I noticed some small changes and felt a lump in my breast while doing a self-examination. I knew I had a strong family history with cancer. With that in mind I put it in the back burner as my Dad 50th birthday was coming up I just wanted to enjoy this big milestone with my family.
The day after all the celebrations I told my parents what was going on and I made a doctor’s appointments with my GP for the 15/05/2017. My GP sent me to radiology to get a breast sonar (16/05/2017). The radiologist (Dr. Jan) did the sonar and saw something and asked to run more test and a mammogram.
I remember sitting in the small cubical waiting for a nurse to come to take me for the mammogram and counting all the small dots as that was the only thing I could do to try and escape all the what if’s that was running around in my head. There was 53 dots in the cubical……
After the mammogram was done Dr. Jan asked to speak to me and my Dad (Yes my Dad was with me as he is the calm one in the family and I needed all the calmness I could gather).
He told me that there is a mass but that he cannot give me any more information but he would recommend me to go and see Prof. Carol-Ann Benn as soon as possible. (According to him she was the woman for the job and an excellent doctor)
With the help of my GP (Dr. Webber) and Dr. Jan I got an appointment with Prof. Benn for the 18/05/2017. I had 2 days to hope that it was not what I thought it was…..
Very early on the 18/05/2017 we left the Free State on route to Gauteng with a suitcase because we did not know what was about to happen. Prof. Benn did the examination and asked I bunch of questions (Just FYI if she tells you that she has cold hands, believe her). She asked if it would be possible to do a biopsy the next day (19/05/2017) (luckily we did pack for the what if we had to stay over). My needle core biopsy was done in Milpark hospital and I was scared out of my mind and I did not know what to expect or what to do, I felt a like a deer with fast approaching head lights and nowhere to go. I went home with an ice pack and I promise to have the results within a week.
On the 23/05/2017 I received a phone call from the fabulous Pamela (receptions for Prof. Benn) telling me that Prof. Benn would like to see me and I knew that my worst nightmare/fear was about to come true. I asked Pamela if it was bad news and all she said was it will be better to come see Prof. Benn. My appointment was made for the 26/05/2017.
I remember sitting in the waiting area and staring at a photo frame with the most amazing words and trying to figure out why it was hanging at the entrance and not in the middle of the room for everyone to see and appreciate.
The quote was in the photo frame was, ‘You are braver than you believe, Stronger than you seem, Smarter than you think and loved more than you’ll ever know’.
It became my mantra in a way. As Prof. Benn sat down and uttered the words: ‘I am sorry to tell you this but you have cancer’. I was diagnosed with Stage 1 grade 2 Invasive Mammary Carcinoma (Luminal A type, ER+, PR- and HER-). Being the awesome doctor that Prof. Benn was, she asked if I would like to tell my parents (that was sitting in the waiting area) or if I would prefer her to do it. As I could not speak and the only thing that my body was able to do at that point was cry, I asked if she could please do it. I would never forget the faces of my parents as they heard the news. My Dad went right to Super Dad mode and asked ‘What is the next step’. I was so grateful I had them as I could not wrap my brain around the fact that at 26 I had breast cancer let alone ask what the next step was.
Prof. Benn explained that as I was diagnosed early that she would recommend surgery first and then depending what all the test reveals chemo/radiation or chemo and radiation and 5 – 10 years tamoxifen. She said that she has the perfect plastic surgeon for my and introduced me to Dr. Marisa Venter. I had just found out I had cancer and I was already meeting the plastic surgeon to discuss what my options where. Everything felt like a nightmare that was playing at 36 x faster speed.
Dr. Marisa was great and really tried to calm me just like Prof. Benn but I just asked to get everything done with so that I can go home and try to process what was happening. She gave me the following options to consider:
Skin-sparing mastectomy ( hopefully nipple-sparing to)
Reconstruction options (Implants, tissue flaps etc.)
She went on to inform me that as radiation was on the table that implants can only be done after all treatments was done and healed for 1 year. We both knew that I had a very strong family history with cancer and I knew a lumpectomy was not the way to go. She explained to me the difference between a mastectomy and skin-sparing mastectomy or rather she talked and I just starred at her hoping that she did not pick up that I was not taking anything in. She went on to explain all the reconstruction options (there is a lot of options that I did not even knew existed like the TRAM flap, Lati Dorsi Flap, DIEP Flap, implants, delayed reconstruction or immediate reconstruction).
After all the information she explained, there is a lot, to me I point blanked asked her what her recommendation would be. She recommended the skin-sparing mastectomy and immediate reconstruction with a Lati Dorsi Flap (Latissimus dorsi flap). Her reason being that I was very young and that my body will be able to adapt to the changes but that it was my decision. After the consultation with Dr. Marisa I went back to Prof. Benn and she gave me a whole booklet of information and asked me to read through everything and to phone/WhatsApp any questions I had or gather them all for my next appointment that was scheduled for the 30/05/2017.
The appointment was scheduled for me to be able to have some time to go through everything and to decide what I wanted to do. 4 Days to decide…. On my way out of the waiting room I saw the photo frame again and it hit me why it was hanged at the entrance/ exit. The reason being that even after hearing the worst possible news you could think of, you still needed to remember all those things as those will be the things that will carry you through each step of this journey.
I sat hours researching all the options and procedures and by researching I mean I googled everything (you know that 1 thing that everyone tells you not to do, I did).
I even worked through a list that Dr. Marisa gave me of people I can talk to regarding each reconstruction option. There was a lot of people and each one gave me their own opinion, which helped a lot as the doctors can only give you the scientific facts but the people that already went through it can explain it in a way that no doctor can.
After gathering every possible pro and con on each procedure (yes I am that type of person, I need a list of pro’s and con’s and numbers to decide on anything), I decided to have a skin-sparing mastectomy with immediate reconstruction using the Lati Dorsi Flap. If I am being honest I think my decision was based on, I wanted something of me inside of me and I did not want to wait, I wanted everything to be done with. I also knew the risks of implants etc. and I knew that it was not something I could handle. I marched in the waiting room armed with my decision and once again I sat there staring at my new mantra (aka photo frame)
Surgeries was scheduled for 05/07/2017 and 07/07/2017. Prof. Benn requested a sentinel node biopsy to see if the cancer had spread to my lymph nodes. The node biopsy was scheduled for 20/06/2017. A day after my Mom birthday. Am I the only one that is seeing a trend here…. This would be my first operation ever. I was scared shitless. I had to go for a Breast MRI and then to radiology to get inked and marked.
23/06/2017 was my scheduled follow up to see how the incision was healing and to find out if it had spread. As Prof. Benn came in and I got the same look as I did the previous time, it had spread to my sentinel lymph node. My cancer was bumped up to Stage 2 B, the climb continued…..
The days before my surgery flew by with in a blink of an eye. I remember I could not sleep that night. Every time I would close my eyes I remembered that if I go to sleep now the time will fly by and the time that I have of being me will be gone so I forced myself to stay awake and to remember each moment for as long as I could.
(05/07/2017) I woke up after my first surgery with one breast, I did not know how to react and I knew it was only for 2 days but it felt like a part of me was gone. I remember sitting in the bathroom and just starring at myself until my Mom would ask me to finish up. It is strange but I do not remember being in any pain, it might have been the wonderful morphine doing its job, I do not know. I got the news that I got clear margins and that we good to go for the second surgery.
The night before the second surgery I once again could not sleep and just lay in my hospital bed thinking about how I might look, will I have a nipple, and will I not have a nipple, will I be able to do all the things I used to do after the surgery, how am I going to explain all my scars, will I cope will all the emotional scars and physical scars? The morning of my second surgery was really emotional for me. There was a lot going on in my head. Dr Marisa and Prof. Benn came into the theatre and I will remember this till I die, they said that I will be just fine and I believed them for the first time. I kept saying my mantra….. ‘You are braver than you believe, Stronger than you seem, Smarter than you think and loved more than you’ll ever know’
I woke up so sore and stiff with so many drains attached to me that I was scared to move but I had to see what I looked like. Yes I know that it may seem selfish but it was my way of holding onto something of me that was normal. I was so shocked to see 2 very cute boobies, I was sure that if I touched them they would fall off (It was the morphine doing its job) or rather that is how it felt with every movement as everything hurt.
10 Days in hospital and my parents going mad as my brother was scheduled for his hernia surgery the day after I was supposed to be released. Yes I know I have great parents, they really are amazing.
I was released 17/07/2017 and the ride home was the worst as I felt each pothole (there is a lot of potholes in the Free State, each pull away and each stop. My bother joined the recovery house (my parent’s house, as I called it) on the 20/07/2017. For the next 10 – 12 weeks I had doctor’s appointment every Friday to check on my progress and if the drains where working correct etc. Each time they would take off all the plasters and bandages and it would hurt so bad that I would talk very badly (but only in my head as I could not tell the nurses all the bad things as they were only doing their job). Each week you would go in with the hope that a drain would be removed but I was not that lucky. Dr. Marisa would look at my disappointed face and tell me that next week will maybe be the lucky week.
At around week 3 the first drain was removed and oh my word I promise you that it felt like the drain was attached to everything inside of me. It was not the best experience I ever had. I also began to have a allergic reaction to the plasters they were using and they had to get creative.
Week 6 the last drain was removed and I was very glad as I was very close to pulling it out myself. Unfortunately I was still building up fluid and the only way it could be removed was to insert a needle and syringe and pulling out the fluid that was building up without moving a muscle. Just typing this makes me nauseas. Finally the last check-up came and I was cleared. On recommendation of Prof. Benn I went to see an oncologist to discuss further treatment.
He wanted to do an oncotype Dx test to see if chemo would be needed and my case was also taken to the board to have an M&M. The results came and the cut off number to not have chemo was 24, mine came back 25. Just when I thought that the climb was over…
The oncologist informed me that with the chemo I would be receiving my chances of getting pregnant was about 0 as chemo has a very big impact on your fertility…. I never thought I would be making this big decisions at 26. I was not married, not engaged nor a boyfriend, I did not have kids and I did not even know what I wanted for the next few years let alone if I wanted kids.
I made the decision to postpone chemo to do fertility treatment to store my eggs for if and when I needed them. Man was I impressed when they told me that they got 12 smashingly good looking eggs. I was relieved to know that I would still have a choice to have children one day.
I started chemo the 19/01/2018 and let me tell you I have saw people go through chemo and it wrecked them. I was scared out of my mind. I had only heard the worst things about AC (aka Red Devil) so I was dreading each step the doctor to towards me with that bag of drugs. I did not have a port as my doctor believed that my veins would hold up.
My regimen was 4 – AC every 3 weeks and 12 paclitaxel every week. The first treatment went off without a problem. I felt very tired and weak but that was that. My oncologist advised me that at around 10 days after my first chemo I would start losing my hair.
Now as I heard that I thought it is fine it is just hair right. Wrong…..
Nothing can quite prepare you for this. Pulling your hand through your hair, something you do 1000 times a day without thinking about it, seems normal but it became something I dreaded as each time I did it, I’d catch myself looking for that sign that the time has come to lose another thing of myself to this disease. Two Days after my parent’s 28th anniversary (29/01/2018) the moment came. I remember sitting in the shower and just starring at the hair in my hand, knowing that this will not be as easy as I thought. I shaved all my hair the 30/01/2018 and to show support my Dad and brother did the same. It was very emotional for everyone but I had one heck of a support system.
With each week I would see more things disappearing, the little spiky hairs left on my head my eyebrows, my lashes. I even missed shaving my under arms and legs. Yes I did not even have hair there. I looked like an alien but even more I felt like an alien.
My taste buds was nowhere in sight and everything tasted like metal. I did not have any urge to eat anything except Simba’s salt & vinegar chips. My body was in such turmoil. It did know what was front or backwards. I was nauseas all the time. I had no energy but I forced myself to go to work each day. I only took off the Friday’s I had treatment. Somedays were better than others. With the cortisone I looked like a balloon as everything swelled and I could not understand why as I was not even eating much.
One weekend I decided that I had to get out of the house as I was so self- conscious about how I looked and felt that all I wanted was to hide away at home. I gathered all the strength and all my head gear as I was not brave enough to walk around bald, I faced my fears and went to take a walk through the mall. Minding my own business I went into a store that had all these cigars, it intrigued me as the smell did not make me nauseas. Standing and admiring all the different types of cigars (there is a lot), I bent to see what was on the lower display and my ‘bolla’ head gear fell forward and I woman marched right up to me and started yelling at me without asking me what my reasons were for my ‘bolla’ / no hair/eyebrows and lashes situation .
Asking me what I was trying to portray, telling me how insensitive I was and that I had no respect for woman that was actually sick. I was so shell shocked that I just starred at her. When her rant was over the last thing she said and I will never forget it was that she hopes that one day I will get sick and that I will feel the actual pain and that I will remember this day as the day I made fun of woman going through cancer. I cried the whole weekend, it took so much of me to just go for a walk and face my fears of being in public and 1 person took all my progress and through it in the trash. I made myself a promise that weekend that I will not ever break any one down as she did me.
With paclitaxel my body tolerated it much better. My hair started growing back in batches and I was glad to have a bit of hair as my brother wedding was in a couple of months and I had the honour of being one of the bridesmaids (yes it freaked my out big time as I was still recovering from what the woman accused me of and what everyone would think).
The Free Fall:
I received my last chemo on the 26/06/2018. I cried so much, I was relieved, happy it was over but I also cried because of the uncertainty that I felt. For the past year I went from doctor to doctor and surgeon to surgeon following all the rules and guidelines etc. and now I should just check in every 2 – 3 months and that was that. Everyone around me could not understand why I was moping around. I did not know what to do, how to feel and if one more person told me that it is over now so why not go on with your life, I would have lost my marbles….. Yes I went through surgery and chemo etc. but even going through that I never had the chance to sit and work through everything that has happened to me emotionally.
The Stopping Moment:
I was on autopilot through my whole roller coaster so far and now that the treatments were done everything came down on me at once. I saw my fears in everything I did. I completely shut down from everyone and everything. It was easier for me to close myself off than to actually deal with everything. I was a whole new person. It is difficult to describe it but I could not see the old me starring back at me in the mirror. My way of thinking changed. My personality changed. I not only lost my breasts but I also lost the fun loving, free spirit and romantic side of myself. I was always angry and serious and I had out bursts for the smallest things.
The day of my brother wedding was really hard for me but I had my happy face on (has always) and I even gathered enough courage to toast my wonderful parents with people watching me, with my awkward hair and I survived. That night I danced till 5 the next morning and for the first time from my diagnoses I enjoyed myself or rather I enjoyed the new me.
I have learned a lot from this roller coaster so far and the 3 things that stands out the most:
Always believe in yourself
Do not doubt yourself in any circumstance
Only you know what you are capable of and willing to do.
I decided to do a photoshoot each year to celebrate every year extra I received from the moment I was finished with all treatments (my way of looking back and seeing the progress I have made physically and emotionally). It has been a wild roller coaster from being strapped in to that moment the roller coaster took that first dive and never stops until that abrupt stopping moment when you have to deal with what just happened.
Yes I do believe that I am stronger, Yes I cannot believe that I survived this far and yes I am slowly but surely getting to know the new me with each day that passes. Focus on where you want to go, not on what you fear as fear has a way of clouding everything.