This is my story
My name is Romy. I am 38 years old with 3 amazing little kids and 1 x awesome husband and an amazing family mom, dad and in-laws. Plus one amazing best friend who did what she could from overseas and one who lives here but couldn’t see me due to Covid. These people all played a part in my story and helped me on this journey.
I honestly have been very blessed. This is my story. Please note, I have a creative mind and by no means a good writer, so please bare with me and how I tell my story. Forgive the errors, grammar and plain silliness. Writing is not my strong point.
I had just celebrated my 37th birthday and whilst having a shower one evening I discovered lumps in the right side of my right breast. It’s weird, but it was as if I knew these were not “normal lumps”. I spoke to my husband and sister in law and they both said I should book a radiologist ASAP. Of course, being me, a Mom of three, I did not have time to do this. I mean when do I ever have time? I will get to it, maybe next week. Or so I thought (delaying tactics) not a chance in hell. So my sister in law booked an appointment for me that morning and forced me to go. So off I went, nerves shattered, tears welling up and facing what I thought I already knew.
If it were not for her, I probably would still not have gone. I had all the tests from a sonar, to a mammogram and so on. The doctor said she wouldn’t let me go until she has biopsied me (that in itself is another story and a pain we don’t want to talk about).
And so, 2 days later on the 12th November 2019, I was diagnosed with Stage 2/3 (due to 3 tumor’s) TNBC (triple negative breast cancer).
It was as if my whole world had fallen apart again. It had just passed the three mark since the tragic loss of my brother Nicolas. Now I had to call my husband and break the news and then to call my parents and tell them that their daughter had cancer.
This was one of the hardest things I ever had to do. We as a family had just had my brothers 3-year anniversary of his passing. We had lost our 30-year-old son/brother to a rare epilepsy formed in his 20’s and his passing was sudden, unexpected, horrific and traumatic to say the least and just possibly the worse thing in my life. I had lost my best friend of 30 years. The person I spent the first 20 years of my life with, day and night. His death was caused by Sudep (sudden unexplained death by epilepsy). We were barely dealing with his loss and bam a punch straight to the gut and maybe even a left hook to the teeth with the "C" word.
We had battled with his illness for the past few years and it had already taken a toll on our family, physically, mentally and emotionally. How was I supposed to break this news to my parents? This was not going to be an easy call. My dad screamed, shouted, swore and then cried. How could this be? How can his child have cancer? This was a day we would never forget (yet another day we would never forget).
And so, the journey of breast cancer began.
TNBC–is a rare and aggressive form of cancer that tests negative for oestrogen receptors, progesterone receptors, and excess HER2 protein (common Cancer). These results mean the growth of the cancer is not fueled by the hormones oestrogen and progesterone, or by the HER2 protein. So, triple-negative breast cancer does not respond to hormonal therapy medicines or medicines that target HER2 protein receptors.
So, my first thoughts double mastectomy - remove this cancer from my body. I want it all gone. Unfortunately, it’s not how it works with TNBC – you have to treat it with Chemotherapy, then operate, then radiate. It’s called the "Bully Cancer" because it’s so aggressive. But the good news was that it responds well to Chemo.
So now we need to tell this to my three little ones and try explaining to them Mommy is going to have good weeks and bad weeks. Mommy is going to be very ill and Mommy is going to lose all her hair. This is not easy and not something you ever imagine having to do. How do you explain this to a 4,6 and 9-year-old?
From here it's the journey of the MRI and CT scan. This is another story in itself. From an initial cost of R25,000.00, which my medical aid said they don’t cover, to a stunning admin lady at Park Lane who first managed to get price down to R14,000.00 (amazing how the price can drop by more then R10,000.00 all of a sudden) and her sitting on the phone for hours with my medical aid and getting them to “up” my policy cover and back date it to the 1st of November. The MRI and CT scan are not for the faint hearted or anyone suffering from claustrophobia.
Then it's off to a cardiologist – to check if your heart and lungs are strong enough to handle chemo.
So Instead of celebrating my 10th wedding anniversary with my husband on the 29th November, I was already sitting at the oncology centre having my first round of chemo.
RED devil and 8 other bags that I can’t even tell you what they were. Please also note that most of these doctors and nurses deal with this daily and so their sensitivity to this being your first rodeo is limited and getting info on how it all works basically is “you learn as you go.”
I had some amazing doctors in Ronwyn Van Eerden my oncologist and Carol Anne Benn my specialist, but the nurses were desensitized to how nervous and scared patients are. This does not help you in any way or calm your already shattered nerves. If you didn’t have anxiety before, you sure have it now. It’s as if they don’t realize that this is “your” first time.
After chemo you feel awful. It's like a horrific hangover on steroids. You are slurring and extremely tired. No one understands. You can’t explain it, and no one really gives you advice on what helps - the do’s and don’ts.
GOOGLE is a really BAD IDEA.
You think you are “dying” – please don’t google anything medically related!!! You simply go round and round in circles. Don't go there.
Every day after chemo, I had to have an injection in my stomach, a booster for my white blood cells. My hubby would have to sit and inject me with a product that attaches to your bone marrow to help boost the cells, but the pain this caused was honestly horrendous (at R7000 an injection you cannot afford to mess up). Maybe even worse than the chemo. The nausea, the joint pain, back pain, sores in your mouth and all your food tastes awful. 7 days of hell.
I lived on STILPAIN and nausea pills for approx. 7 days after each chemo. I did 6 sessions in total. My hair basically all fell out before my second treatment and so my husband shaved it for me (this was one of the hardest parts for me) Cancer you can’t see or really feel – but being bald, shouts cancer big time, and you feel so ugly and awkward.
Cancer technically doesn’t hurt – but the chemo - injections and then looking in the mirror at your bald head and the gaunt grey face is a constant reminder that you are ill (all the things no one else really understands or feels).
After 5 months of chemo I would then need to have surgery. This was another challenge, as I had two very different opinions. One doctor said due to the size of the 3 tumor’s and because it was TNBC she wanted to do a mastectomy of right breast with Diep flap reconstruction – which is a rebuild of the breast using stomach tissue (hey bonus, a tummy tuck at the same time- I am in let’s do it ).
This is a hugely long surgery with a high risk of infection (Covid 19 has now hit the world). My other doctor told me I was mad and that I was a perfect candidate for a lumpectomy. This was due to my amazing response to chemo and that my recovery time from this op would be safer and less of a risk of infection.
And so, on the 6th April 2020 (Level 5 – Covid) my family had to drop me off at the front door of the hospital, say goodbye and leave me to do my operation alone. My only form of contact was a WhatsApp video call (and if you don’t have data, don’t count on hospital WIFI - its none existent). Another horrific experience. You act tough, so your kids think that you're ok, that your family don’t worry too much, but deep down you are dying inside. Your nerves are finished, you are petrified and to be honest, no one really gives you an indication of what, how and when. Not a doctor visit, nothing. You sit in an isolated room with a mask on for 24 hours (you might not have covid, but you can barely breathe with the damn thing on) and you are all alone waiting to go under the knife.
I am pretty strong, but this is not something you want to do alone. I was scared that I would wake up in pain, with not a soul around. 3 days in a ward with only 2 other ladies, in absolute agony and no one to hold your hand, console you and make you feel better. It’s terrifying.
It’s almost like a jail sentence – isolated room with limited contact with the outside world, revolting food. The nurses were very “chilled”. Let’s put it that way, as the ward was quiet (they were not on HIGH alert ) and would barely check on you unless you rang the bell for 10 minutes. Getting a cup of cheap ass coffee was like pulling blood from a stone.
The whole Covid thing just put a new perspective on everything. Not even the hospital shop was open for a coke, coffee or a snack. After the operation and while lying in High care and basically being ignored – I asked the nurse about 5 times in my drugged-up state, if she could please get my cell phone from the safety box, which I could see about 5 meters away. There was no response. I could not bare to beg any longer, as I needed to let my family know I was out of the operation and I was ok. So, I pulled all my wires and gorgeous accessories out – put my clothes on and walked over to get my cell phone. The nurse still came in and said “oh a tough one you are” - ah yes, I am. I needed my phone. If you won’t help me I will do it myself.
Finally, I go home, and my family take care of me as best they can under Covid regulations. But we are still in hard lockdown, and not even a visit from family (Mom or Dad - because they cannot visit or enter our complex) and no one to help my hubby or kids out or to check on me. This is really tough, and you really do feel very alone. It’s as if the whole world has gone crazy and the people you love are banned from seeing you.
When you ill all you want is your mommy or daddy as big as you may be – I wanted my childhood comfort. This is not to say my husband and kids weren’t amazing – but I wanted my mommy every now and then. My sweet little girl would massage my head every day and try her best to make me feel better. My hubby became a chef tried to make me all these amazing meals and did his best to look after me alone.
Finally, I start healing up and off we go to start radiation – another “learn as you go” journey. My radiologist – met me over skype every second week, not one bit of a personal relationship built at all. Just you, the team (they were amazing) and a computer (my doctor) to talk to. I remember her saying on my last Skype call that she will miss me. I nearly laughed – really???? Have you ever tried to show 2 degrees burns to a doctor over a skype call?
33 sessions of radiation. A long repetitive journey and all alone again. Every single day. This part for me, I found worse than chemo. Not the pain but having to do it over and over again, all alone. Emotionally I was now drained and mentally exhausted. Please note that in between radiation I was doing online school with three kids (another story for another time) .
Eventually I had got an amazing call saying I had a 200% pathological response to lumpectomy surgery and my margins were clear of cancer. This is a great response to chemo and for my doctor she said this is the best news you get. So yes, this was amazing news – but it came at a small cost. (You are now cancer free, fine and back to normal) For me not really, but to most people yes.
So technically I am cancer free and things are looking good. But due to Covid and not seeing people, life will just go back to normal and it felt like most people almost forget I was ill – and because they didn’t see me for so long, it wasn’t real. So, life just carried on. I was still doing the radiation, suffering all the side effects, feeling awful and everyone around me carried on as if it never really even happened. I guess it’s like a weight is lifted and they are content you are cancer free, but it doesn’t mean you aren’t part and parcel to all the effects of chemo, radiation and so on.
I felt very alone, and I felt like I was doing most of the journey alone – with the exception of a few people. But people were so ingulfed in COVID and their own issues – no work no money etc. (totally understandable of course) but I felt extremely lonely and I felt I was doing it alone. Mentally and emotionally I felt lost.
It was a very hard time for me and having to act strong and pretend I was fine was killing me inside. And it’s true no matter what - if you haven’t had it, no matter how supportive you are - you will never understand.
People kept saying you’ve done it, you’ve got this, your cancer free, keep your chin up, don’t think about reoccurrence, be grateful you alive. Don’t think bad stuff. Focus on the future.
But nobody really knows how you feel inside. Your body aches, you are emotionally, mentally and physically exhausted and yet you got to keep going and get up every day and do the normal things. Things that are no longer normal to you, because they have become tasks that take up most of your energy. It’s not just sweeping the floor or washing - this is now a task. Yet you are expected to be grateful, happy, smile and look forward.
Easier said than done, when your body aches, your bald head and scars all over your body are a constant reminder of cancer. You feel old - achy – joint pain - tired, tearful. Sometimes negative and scared of reoccurrence (all parts of the healing process I guess) – but it doesn’t make it easy.
Someone once said to me I am so tired of “fake smiling”. I never really got it until I had cancer. Now I get it and there are many times now I’ve used it. It’s hard and only someone who has walked this path will really understand.
Some of the hardest parts of the journey, apart from chemo, the pain, and the unknown, are the questions that live deep-seeded inside you, for however long it is.
Will I be there for my kids’ weddings, will I be there for 18th’s, 21st’s will I get to hold my grandchildren. But in the same breath, these are the reasons you fight even harder. But it doesn’t mean these questions don’t sit in the back of your mind day in and day out every day of your life.
Reoccurrences. What ifs. These things sadly will be with you for life – every ache or pain - Cancerlitus as my doctor calls it. The fear of cancer forever.
The long healing journey – the short awkward hair and the scars on your body are a forever reminder of the Cancer, that once was in your body. Those scars will never go and so forever your body has changed. Pains, aches, scars and constant reminders. Use this to remind yourself of how strong you are and that you are a survivor. Guaranteed, there will always be good days and bad days. You have to live with it.
To top it off and add to your bad days. Financials. If you lucky enough to have a decent medical aid or some pay-out ,you will be covered for most things under the oncology benefit. So, while you have cancer in your body – you are “ok”.
No one tells you about the 500 million tests, scans, scopes and constant checks ups you will need after treatment, which all of a sudden no longer get covered because now you are now “clear” of the Big C.
So now the bills start adding up – shortfalls – exclusions – co payments. All of a sudden, I have bills I know nothing about. This was short paid; that was not covered. I have not had an income since I was diagnosed. So, these shortfalls don’t make life any easier and then to top it off COVID didn’t help either.
This honestly has been one of the hardest years of my life.
I know my journey is not over – there will be many bills and many tests. But having faith, love and support and knowing I have three beautiful children and a wonderful husband who need me, makes the hard days seem less important. It’s not easy it’s a battle. Every specialist costs R1500 just for a consult. Your benefits are depleted and no income due to Covid.
But I survived, I am a warrior, I am a Mom of three and clearly cancer had not met Romy – I kicked your butt big guy and you won’t get me down.
I will take the good the bad and the ugly. I will come out on top and I will be here for a long time. I have way too many things to do in my life still .
To all the cancer survivors, well freaking done. This is not a journey you would wish upon your worst enemy. It’s not a journey I wish to relive.
But I am here and I am alive. I am forever grateful.