I’ve so wanted to put pen to paper about my journey, but never knew quite where to start. I never dreamed that I would write about being a ‘cancer survivor/champion’ and truth be told, I live with fear of it returning every single day. However, I guess …
I am a cancer survivor, I’m here today, and by the grace of God, for many, many more days to come.
Here’s my story
My name is Michelle de Gouveia, I am 42. I am married to my childhood sweetheart, Carlos, who is a wonderful husband and father. I have two children that I idolize with every inch of me, Leah is 11 and Lorenzo is 4. We’re fortunate to have a great, big wonderful family and a bunch of amazing friends, that are an extension of our family.
It’s probably important to tell you a little bit about me, as I will refer to this a little later. I’m an A type personality. I make to-do lists of everything. I plan everything I possibly can. I’m a fixer and a problem solver and it’s so important to me that everyone around me is in a good place. I work in the advertising industry, so deadlines and pressure are part of my make-up, as are very creative people who have very creative personalities and ways.
That night (July 2019), was as a normal night as any other. We had just finished cleaning up after dinner, children were bathed and, in their PJs, school bags were packed and ready, lunches were packed, and I got into the shower while my husband and children were in our bedroom watching TV.
I wasn’t doing a breast examination, but I felt a bit of a lump just under my right nipple and showed my husband when I got out of the shower. We both didn’t think much of it, as I had felt something similar in 2016 that turned out to be a blocked duct. I did, however, make an appointment to do a mammogram
(31 July 2019).
The lady doing my check-up said that she was so sure that it was nothing to worry about, but that she just wanted to check with the surgeon whether we should remove it, in case it became more of an issue later. The surgeon (Prof Carol-Ann Benn) advised her to do a biopsy, which I went back to do a couple of days later. I still wasn’t concerned at that point. A couple of days later I followed up with them as I had not heard anything back, and that was when I was asked to come in. In hindsight, this should have rung alarm bells for me, but I was still so sure that it wasn’t anything because the lady was so convinced that this was nothing to worry about.
(7 August 2019) I was kept waiting in the reception area for about 35 minutes. There wasn’t another patient in the rooms (as they last one had left as I arrived) and there was no one else in the waiting room with me. Eventually I was called through. When she said the words ‘I have some bad news to tell you’, the fear that went through me entire body, was indescribable. ‘You have breast cancer’.
I didn’t understand what she was saying. How could this be? What was she saying? ‘Am I going to die,’ I asked her. She had no more information for me, other than that I had breast cancer. I didn’t know what type of breast cancer I had, what stage it was, if it had spread. My entire body literally shook with fear.
I asked her, ‘How I should tell my husband, what would I say?’ I phoned my husband, brother and sister, who were waiting for my call. And then I got in my car and drove myself home.
I have cancer. Is this how it ends for me. Everyone who has cancer dies. My children! Please don’t take me from them! How will I tell them? Am I going to die? I was in too much shock to cry. I just couldn’t believe that I had cancer.
That night, my husband and I went to Prof Carol Benn’s rooms. She was busy with her last patient and we were the last patients in the Reception area. The anxiety on my face must have been evident and as she walked past us, she looked at me and said, ‘Are you Michelle? I have spoken to a couple of people today about you, and you are going to be fine.’ That’s when I broke and screamed ‘I don’t want to die!’
It was my son’s birthday party on the 11th August, which had already been planned a couple of weeks in advance. I took the opportunity of telling those closest to us at his party, as I didn’t really know how to share the news with them and didn’t feel a WhatsApp message was appropriate as I knew they would have questions.
Looking back on my first appointment with Carol now, which was 9 months ago, I never could have imagined the journey ahead of me. At that appointment, she advised that I had triple-negative breast cancer, which would require chemotherapy, surgery and radiation. I made it clear to her that I would do whatever it took not to die.
Carol booked me in for a lymph node biopsy on the 12th August 2019. Thankfully, these results came back clear. Cancer had not spread to the lymph nodes!
(15 August 2019) I hadn’t gone back to work yet and was working from a friend’s house up the road from me. Since the lymph node biopsy, I’d had quite a bad headache, but put it down to stress and the anesthetic. However, while I made a cup of tea, on that morning, I felt a pulling in my right arm. I went to lie down and phoned Carol-Ann as I wasn’t sure if it was something related to the cancer. She asked me to get to Milpark and have a brain scan. I thought it was a little excessive but did what I was told.
By the time they pulled me out of the MRI machine, I couldn’t move my right arm and leg. The MRI revealed a clot on the brain. (Are you kidding me?!) The combination of the contraceptive pill and the cancer had caused a clot on the brain. After a lumber puncture and 2 days in surgical ICU, I was discharged and treated by Prof. Jacobsen who is a Hematologist. Treatment was to remain on Xeralto during chemo and checking back once chemo was complete.
I hadn't told Leah and Lorenzo that I had breast cancer as yet, but every time we went to see a doctor, we did tell them that we were trying to see what the lump was on my breast so they weren't completely in the dark. I also needed to know as much as I could before I said anything to them. Lorenzo had literally just turned 4. He was aware that there was something wrong with mom's boob but explaining cancer to him, we felt, was too big at his age. I could write a chapter on how Leah and Lorenzo handled the different stages and how we handled it with them. Telling Leah was important though, she was 10 and this wasn't something that I wanted to be hidden or kept a secret. I needed her to be able to ask questions and feel comfortable enough to speak about her feelings to anyone, knowing that there was no secrecy or shame attached.
A week prior, we were out for lunch where she was waiting in line to get into a VR game. She left the line and came to sit down. I asked her why she wasn’t waiting in the line anymore and she said that there was a little boy with sores all over his body that was sitting in the machine, and that she didn’t want to get in after him in case he was sick. I told her that it was probably just a skin problem he had and that I doubted that she could ‘catch’ anything. She said ‘Mommy, what if he has cancer? Everyone who has cancer dies.’
(20 August 2019) I went to see Prof. Rapoport (Oncologist), who confirmed that I would require 6 x red devil chemo sessions, every 3 weeks. It still all just seemed so surreal and unimaginable. Signing the indemnity forms with all the possible risks was terrifying, but what choice did I have? Anything to live! I was due to start chemo in 2 days.
The next day I took Leah to Eastgate so we could go shopping to spend her birthday money and so that I could tell her. It was important to me that I was honest with her, and that she knew what was to come, without making her too scared. We went for lunch, where I told her that I had breast cancer, what that meant, that they would be giving me strong medicine that would make my hair fall out. Immediately she looked at me and said ‘Will you be bold? ‘Probably’, I said. ‘Well, who will take me to school?’ she said, and we both started laughing! I assured her that I wouldn’t drop her off with my bold (bald) head!
(29 August 2019) My first chemo session. Everything was still so surreal, like this wasn’t my life and it couldn’t be real?! Chemo?? All I pictured on the days leading up to this, was what I saw on TV. Bald, vomiting, lying in a bed unable to do anything … death. As I walked into the room, I saw a room full of lazy boy chairs with women (very few men) with drips in their arms or chests. I couldn’t believe that I was here.
My eyes locked with a girl I used to work with many years ago, she was sitting next to a woman in a chair and as she looked at me, she held me and cried. I did too. I sat in a chair next to her and her sister (Amanda), which is what I would do for every chemo session going forward (bar the last two where our dates didn’t correspond). As the nurse wheeled the drip holder towards me, I had to ask her to give me a minute before she just put the needle in me and started to run chemotherapy through my body. I cried, cried because I couldn’t believe I was doing this, that I had cancer, because I didn’t know how sick I was going to be and didn’t know how my children would respond to me being so ill, whether I would be able to ever have the life I knew back, or if this right here was the start of me being sick until I died. Carlos held my hand. I pulled myself together and started my first chemo session.
Shit, Evy asked me to write an article, not a thesis, so I’ll try give less detail from here!
Chemo was not as bad as I thought it would be. I felt perfect the night of, perfect the next day, and crap on the 2nd, 3rd and 4th day. Crap as in very lethargic, no energy and very drained. As I got closer to the last 3 chemo’s, the recovery period was a little harder and longer, but nothing like what I expected. I lost my sense of taste - everything tasted like nothing. I got sores in my mouth and tongue and got thrush in my throat and on my tongue. Not great, but manageable.
The wonderful Alex Grubnick did my surgery for me. I did a lumpectomy, and they matched the left breast to the right. Surgery was absolutely fine. Very little pain after. You aren’t supposed to do very much after surgery for a 6-week period, no driving, lifting anything, carrying anything. My precious sister flew out from the UK to help me for 3 weeks after surgery and wouldn’t allow me to do very much. Having her there was just what I needed, her just being there! A pathologist is present during surgery, to test the area around the cancer location to see if any cells are present in the surrounding areas. As Carol-Ann Benn put it …. I ran the race and won Gold! I received a PCR from the pathologist which stands for Pathological Complete Response, which is defined as the absence of invasive cancer in the breast and lymph nodes after treatment. Thank you God with all my heart!
My radiation was done under the awesome Dr Yasmin Bera at the Busamed Hospital in Modderfontein. Going to the hospital every day for 25 days was a bit of a pain in the arse, BUT the staff were so amazing, and I’ve made a lifelong friend in Mary-Ann. Radiation was a breeze compared to chemo. Got a few burns on my collar bone and under my armpit, but again, completely manageable.
9 months later, chemo, surgery and radiation are complete. And how I wish with all my heart and soul that if you had cancer once it could never return and that the end of treatment marked the end of worrying, forever. However, I think the worry will is something I will live with every day, with every ache and pain, the worry will be there. (Carol-Ann Benn refers to this as Cancerlitis).
I recently went for my 3-month post treatment checkup which consisted of bloods (which were 12.2 YIPPEEE), mammogram, bone density test, chest x-rays and abdomen ultrasound and all were clear. The relief and gratitude are beyond anything anyone could ever imagine. I will continue to go for check-ups every 3 months for the foreseeable future.
Gosh, I have so much more to say! But I will hopefully be able to share more with those that need it, when the time presents itself.
I would like to end by saying – I am no expert in cancer or how to do it or not do it, what to eat, what to supplements to take, how to make it stay away, whether to be vegan, whether cannabis works – I found it all very overwhelming!
What I can say, is that I want to live more than anything else in the world, for all the reasons a mom does
I have listened and read, and taken the points that I felt were relevant to me, and tried to stick to those as much as possible. What I need to work on mostly is my train of thoughts (that can be incredibly dark, mostly out of fear) and self-love. My good friend Helen’s words to me, when I told her about the breast cancer were, ‘The perfect cancer for our Michy! The breast area represents nurturing – and you my Michy, completely over nurture those around you, and under nurture yourself.’
For me, this is a big one and I need to take the lessons from this experience as I do believe that what we manifest internally, manifests itself externally. *(This is why I described myself in the beginning).
I am one of the f*&#@% luckiest people I know to have had the love and support I had during this period! From family, friends, the amazing doctors (Prof. Carol-Ann Benn, Prof. B Rapoport, Dr Seider, Dr Alex Grubnick and Dr Ramdas) who treated me, my work colleagues, the amazing teachers at Saheti, as well as the special parents who helped and supported and sent such special gifts. Each and every person who loved me, helped me (in so many ways), cared for my husband, children and I – have my heart forever. What they did, they will never know. I would like to call each one of you out personally, but I’m sure Evy’s already wondering if this article will ever end!
This is the last paragraph Evy – I promise!
I would like to end off by thanking Christina Mallotas for putting me in touch with Evy and Evy, for providing me with a platform and a beautiful cause, where I will be able to give back, support however I can, and hopefully make a difference to someone else that may be going through this.
I am Michelle de Gouveia, 42 years old, Wife, Mom, Sister, Friend, Colleague and …. A Cancer Survivor.