Every post I write is somewhat personal. Some more than others. But this is 100% personal. You won’t find any useful information, just an account of a very tough ´year in the life´. I’m not writing it to give advice, or to get sympathy. I simply decided to keep a note on my phone where I wrote what I could, from the moment I got diagnosed with breast cancer. I didn’t have it in me to write about travel –my brain just couldn’t cope. Nor did I think I’d have anything to say about cancer that you couldn’t find in a book. So I micro-journaled. And this is nothing more than a compilation of those scribbles and a recount of my memories.
–Published in May 2024
If you’re looking for a good resource on how to cope with a breast cancer diagnosis, I can recommend Reconstruction by Rosamund Dean.
You’ll live ‘til your 120
Over a decade ago one of my closest friends, Erika, was diagnosed with breast cancer. We were in our early 20’s, and the news shook us to our core. Her whole treatment is a blur to me. I’m sure I went with her to chemotherapy sessions and doctor’s appointments, but I think the fear of losing her took over my brain and didn’t allow me to store anything from that time. Even though her cancer came back years later, she’s now doing amazingly.
Since that day I always check my breasts. I mean, what are the chances that it would happen to me, right, but just in case. So the day I found a lump I prayed to the universe that it wasn’t cancer. Not because I would be confronted with a different level of awareness about my mortality, or because I was afraid of the potential treatment. Those were secondary thoughts. My biggest fear was telling those I love. Because I knew that being on the receiving end of such news is very much tough too.
I timidly mentioned the lump to my partner, as casually as I could outer it, in hopes he didn’t panic too. And so the journey of being the one consoling those around me began. Did I mention that this was in the middle of a trip to the Italian Alps, on December 30th? Happy New Year!
I assumed it was nothing. Even Google told me that most likely it would be nothing. But, even though I was healthy and young, I made an appointment. The first available one with a gynecologist back at home in Croatia was on January 2nd. First thing in the morning a confused doctor told me that he couldn’t tell me anything, that I had to see an oncologist. Two days later, in very broken English, while doing an ultrasound, the oncologist told me that the lump looks suspicious. I don’t know if the lack of a fluent common language was the problem, that he never mentioned the “c-word”, or that I just couldn’t deal with what he was saying. So as I left his office I sort of double checked –“but you don’t think it’s cancer, right?”. “Oh, it probably is”, he nonchalantly said, “but it’s the 21st century and people with cancer live to be 120”.
No words were coming out of my mouth. Just tears from my eyes. In the hallway of the clinic. The doctor closed the door behind me, and the receptionist offered me a tissue. That was the first of only four times I’ve cried because of my cancer. My partner was waiting outside, and the redness in my eyes was all he needed to understand what had just happened. We hugged and silently cried for a few minutes until pragmatism kicked in. Let’s get it confirmed first.
Considering the urgency of the situation I’ve gone to a private doctor, but if he was right with his assessment, it was time to start dealing with the bureaucracy of the Croatian Health System. My GP sent me to get a biopsy in the hospital. The procedure was a bit more invasive than I thought, and the results would be ready in two weeks.
The waiting time was equally terrifying and welcomed. I was praying to all the gods that the lump was benign, and I was grateful to have the time to digest it all. If it’s cancer, I’ll deal with it. I’m sure I’ll be stronger than it. The oncologist already told me that I’d live until I’m 120. I made sure to make myself believe that I’d be alright. There was no other alternative.
It’s a small town, so of course the lab expert that got my sample was a friend of a friend. My friends Toni and Ksenija were constantly in touch with her for early news. So I got the diagnosis a few days before the official report was issued. Ksenija had to call me to tell me that I had cancer. I told her I knew how difficult calling me had to be for her, so she didn’t need to say the words. “I’m ok, I’ll get through it”, I told her, and myself. I kept repeating those words out loud until I gathered the courage to break the awful news to my partner.
It was the day of Toni’s father’s funeral. After years struggling with cancer, he was finally resting. I was putting on a black dress when my phone rang. I don’t know how she had it in her to make that call on a day like that. When we got to the cemetery, before I was able to give my condolences, Toni told me that he couldn’t imagine how tough the day had been for me. I almost laughed at the ironic cruelty of the universe. I considered them both close friends for years, but that day they became family.
I have good news and bad news…
A few days later I got a call from the hospital: the results of my biopsy were ready. Through a window I got an envelope with a report that said in bold capital letters: CARCINOMA INVASIVUM MAMMAE. No doctors or nurses were involved. I stood in a crowded hospital hallway thinking that this was the moment I should have learnt I had cancer. That was the second time I cried. I already knew what the report was screaming. But I felt so incredibly sad for all the people that are not as lucky as to be told by a friend. I couldn’t stop thinking about how many people would find out that their lives are changing forever in a lonely, sterile hospital hallway. All those that were living one of the hardest moments of their lives with no one to offer a shoulder, or tissue, or an answer. After more than a year of constant visits to the hospital I know everyone is overworked, but I still believe there should be a little room where a human gives you the results, answers basic questions, and walks you through what’s to come. How could the system fail people this much in what is one of the worst days of their lives?
I managed to leave the hospital, but I couldn’t control the tears. Not even one was about my cancer. I just couldn’t grasp how others were handling a terrifying diagnosis without the amazing support system I had. I felt overwhelmingly lucky and grateful, and guilt started creeping in. See, for me the news came from the sweet voice of my friend, who reassured me that her and her partner would be there for me through the whole process. That she was already calling everyone she knew that could help. I got the name of the oncologist I should ask for. I was told that my future surgeon was very optimistic after seeing the biopsy results. And that a radiotherapist was anticipating a full recovery. I could not even wrap my head around the words “I have cancer”, and my friends already had the whole medical community answering questions I didn’t even have yet!
Once I got the confirmation, I had to step into the void that is the public health system. I was sent from one window to the next, until I was told that “in about a week” I’d get an appointment to see an oncologist. After politely insisting that I wouldn’t see anyone but Dr. Strikić, I went home to panic. A whole week! All I had was a piece of paper with a bunch of unintelligible data. The wait made me very aware of how ignorant I was about medical gobbledygook. Can the tumor metastasize in a week? Can I sleep on my belly, or will the pressure make the tumor burst? Is It ok to run, or to even walk? In hindsight these questions are insane, but then I had no idea. Just fears. With no guidance, the hamsters in my mind outran their wheel.
I called my brother. He’s a diabetologist, but I figured he’d know more than me. I called Erika, my friend who had cancer. And although it was great to get some answers, it overwhelmed me to think that I needed to tell more people. My biggest fear was materializing. How could I possibly put those I love through something as grueling as a cancer diagnosis? How do I even start breaking the news, especially to the ones living on the other side of the world? How do I tell my mom without giving her a heart attack?
I figured I’d wait until I had more info. In a week I’d get an appointment with an oncologist, and I’d have –hopefully– good news to give, together with the horrible ones.
The rockstars of my life
It all seems like a blur looking back. From the moment I felt the lump until I was sitting getting my first round of chemotherapy, less than a month had passed. It all happened so fast that during those hours it crossed my mind for the first time that I hadn’t even thought whether I wanted to go through chemo. Is there any other option? Any alternative medicine? I’m the kind of person that would rather have a headache than taking a painkiller, yet there I was, pumping my body with scary chemicals. The fact that the liquid is fluorescent orange doesn’t help. I made a mental note to look for a book or two, and to research if there’s any paper with any proven alternative to chemo.
Little did I know that all of that would have to wait. I went home feeling great. We went grocery shopping, I cooked lunch, and sat to watch TV after the meal. “It was just a couple of hours with an IV, there’s nothing scary about chemo”, I reminded myself every time the word ‘cancer’ filled my thoughts. Until I got nauseous. I had a pill to avoid vomiting, so I was gagging but -frustratingly- nothing would come out. My body started to ache, then it got numb, and then cramps took over. My legs, my arms, my stomach, my brain… I was covered by a blanket, so I didn’t notice that my fingers were bent because of the cramps, Stranger Things style. “Call the doctor”, that’s all I managed to say to my partner in my panicked state. As he questioned what to tell him exactly, I just repeated “look at my hands, look at my hands”. The side effects of my first round of chemotherapy did what the cancer diagnosis couldn’t: for the first time I actually considered that I could die.
Although I set my mind for “about a week”, just 4 days later I got a call from the hospital –I had an appointment with Dr. Strikić the following Monday. I walked into his office with a list of questions and a racing mind. But from the first words he told me, he made me feel at ease. He spoke perfect English, and even Spanish! He took the time to patiently answer every single one of my queries. He explained how the treatment would look like. He reassured me with clarity and honesty: my cancer is aggressive, but we caught it on time, so he expects a full recovery. He said he’d label it ‘stage 1’. We agreed to start chemotherapy immediately, that Friday. And he gave me his personal phone number in case of an emergency. What a rockstar!
So there was no surprise when he picked up the phone and calmly told us that everything would be ok, but to go to the hospital anyways. It was Friday night, we were calling him on his personal number, and he was apologizing because he was not in town to check on me himself. Is this doctor for real? When my friend told me that she was recommended to ask for Dr. Strikić, I told her that I expect any oncologist to be able to prescribe the correct treatment, so my main concern was getting a good human being, someone kind and empathic. I’d say the universe truly delivered. I have no words to thank him for everything he has done for me.
And while I’m on shout outs, Sina, my partner, deserves a huge one too. I’m sure he was panicking, from the diagnosis until I pulled a Christie, but he was always a rock, standing strong, supporting both of us. I don’t think is humanly possible to love him more.
Most people don’t get side effects as harsh as mine, but they were within the normal range. A few hours later I was sleeping in my own bed. And that’s all I did for three days straight. I couldn’t eat, I could barely drink. I lost about 5 kilos. By Tuesday I managed to stand up and excruciatingly slowly go downstairs. Pausing a few times on the way. I slowly started getting hungry. I was able to stomach one boiled potato. Then I craved scrambled eggs (I figured I’d allow myself to cheat on my veganism because I really needed food). Then I managed to eat some of the lentils my mother-in-law sent. I didn’t get my full strength back at any point during all 15 chemo rounds, but I thought that being alive was a good enough trade-off.
After all the reassurance from my oncologist that the side effects of the next rounds would not be as bad, a week or so after the first chemo, I felt recovered enough to face telling people. It was psychologically harder to console my family and closest friends than to face chemo. All the well-meant words of encouragement, battle references, treatment and co-treatment recommendations, hair fashion statements, and compliments on my strength were hard to handle. I know hearing “I have some news” must have been tough. I always made sure to immediately add a “it won’t sound great, but there are tons of positives with the negatives”, nevertheless I imagine how hard it was to digest. Still, I was put in the horrible position of having to lend a shoulder when I could barely stand myself. I somehow managed to stay positive, and I bet that helped them cope.
Goodbye hair
Long ago I decided I’d embrace natural beauty, which meant to stop wearing makeup and accepting the incoming gray hairs. I truly believe that there’s beauty in every age, that actually aging is a beautiful thing. And nothing puts perspective on how much privilege there is in aging as a life-threating diagnosis. So when I was told that I’d lose my hair, I thought I’d just accept it and find something positive in my new look.
I expected that my acceptance would make life easier. There would be no worries about fake lashes, tattooed eyebrows, wigs, headscarves, or makeup. I didn’t even ask if a cold cap to try to preserve my hair was a possibility in Croatia. In one conversation my oncologist mentioned that the public health system covers a wig if I wanted one. But I didn’t. Before I started losing my hair I got a very short bob, and donated my long, beautiful hair to an NGO that makes wigs for little girls with cancer. When it started to fall, I got it shaved. And then watched more and more of the little remaining bits every morning on my pillow. Until I was completely bald.
It was my partner who shaved my head. As he went on, I laughed at the absurdity of the situation, I loved him more than ever for being so strong for me, and I cried grieving all that was being taken from me. No matter how much I truly believe in finding beauty in whatever life throws at me, losing my hair hurt. I never realized before how much of my self-perceived identity laid on my hair, nor how much confidence it gave me. So it was a process, a much longer one than I thought it’d be, to accept what I saw every time I was confronted by a mirror.
Although a few months later my hair started to grow again into a cute messy mop, if I’m being honest, I yearn for my long hair more often than I’d like to admit. Definitely there’s beauty in every stage in life, but it sucks not having control.
My treatment is making me sick
I was the healthiest I’ve ever been, and then chemo happened. It’s such a contradiction. One day I’m a healthy person, even knowing I have a tumor, and the next day I’m feeling like crap because the treatment is making me sick.
Before the diagnosis I was running 4 times a week. With every run I was a bit faster. I felt a bit more at ease. I was seeing how my leg muscles were growing. I was feeling stronger and fitter. I enrolled on my first 5k and slowly I made my way to a half-marathon. Even though I didn’t know I was developing cancer, the tumor growth didn’t slow me down. But once I found it and started treating it, my life was turned upside down.
Life is full of contractions, but going from active to couch potato was not something I expected. Yet there I was, struggling to go for a short walk. What’s more, I felt like I was playing side effect bingo. After every chemo session something new would manifest. Nausea, fatigue, headaches, muscle and join pain, mouth sores, heartburn, nose bleeds, bloating, hot flashes, acne… if there was an actual bingo card, I’m sure I would have won the biggest prize.
It’s quite hard to wrap your brain around how miserable treatment can make you feel, even if you know it’s making you healthier in the longer term. I only managed to accept the paradox after I finished chemotherapy and got an MRI. The tumor had vanished. I was bald and anemic, but almost certainly cancer-free. I’d still had to go through surgery, so the moment of understanding was brief, but it gave me enough strength to keep enduring.
All the emotions
For most people, once the cancer is gone, they feel like they’ve been given a second chance in life. An opportunity to start living life to the fullest, to focus on the positives, to seek happiness, to treasure each limited moment. They grieve the person they were, and welcome their new self. They see life through an improved lens after their “wake up call”. I never saw it that way. I was the happiest, healthiest and most positive I have ever been in my life before my diagnosis. I was squeezing every second, treasuring every experience. So I felt like through the duration of treatment my life would be put on hold. There would be a pause for a while, and I would just press play the second the nightmare was over.
The first few months are just foggy. Between the shock, the chemo brain, and the constant fatigue, I was in survival mode, not truly living. One day I woke up with my morale as down as it could be. I felt all the feelings. From rage to sorrow, from feeling lonely to wanting to run away from everyone. I cried my eyes out, for the fourth and last time, until an overpowering feeling of gratefulness took over. There’s no reason to be angry –it’s a random disease, and it could have happened to anyone. Luckily it happened to me and not to my mom, my mother-in-law, or any of my sisters or friends. I’m young, healthy and toddler-free –an ideal combination to be the one going through this.
There’s no reason to be sad –I have an amazing medical team, I live in a country where I don’t have to sell a kidney to cover my medical expenses, and I live in an era when developments on the field are commonplace. There’s no reason to feel lonely –even though most of my friends and family can’t really relate and completely understand what I’m going through, they are doing their best to be there for me. They’re sending their love, texting to check up on me, bringing me food, sending me flowers, driving me to the hospital, keeping me company. I have an amazing support system. There’s no reason to want to run away –as much as I wanted to be in India, my planned trip for early 2023, I get to enjoy our house, to bond with the community, to see the little ones close to me grow up, to put down some roots.
It’s not great to have cancer, don’t get me wrong, but I knew I’d be ok. There was still plenty of fog in my brain, but I tried to be more conscious of the present. Life is today, not only while cancer-free.
What my illness have me, though, was the ability to verbalize when I don’t give a f*ck about something. I have no time nor energy to deal with anyone’s sh*t. So if people would not bring positivity to my life, I would not keep them around out of politeness. If I didn’t feel like doing something or talking to someone, I would just not. I let go of the guilt of having unanswered messages, unwritten posts, unfinished chores. The “cancer card”, as it was known by the people closest to me, was a sort of ‘get out of jail’ free card. And it gave me a sense of empowerment. It made me feel a tad in control, in a time where I had relinquished all the control.
Adjusting to a new body
After my last chemo, in preparation for surgery, I had an MRI. It showed that there was no tumor anymore –the scary chemicals did their job wonderfully. That allowed me to safely have a partial mastectomy instead of a full one. Which means I would get a piece of my breast taken –the area where the tumor used to be– and I would not need reconstruction. See, I didn’t even want to wear a wig, so I was hellbent on not getting an implant. This was beautiful news. Well, on top of not having cancer anymore!
The surgery went smoothly. I only spent a few days in the hospital, and the pain was quite tolerable. I was so happy that everything felt fairly effortless that I didn’t even think about how my new body would looked like. When I finally managed to take my shirt off and see what had been done to my chest, I was overwhelmed. I was equally grateful to the surgical team for saving my breast and making my cleavage look normal, and devastated for the difference I could easily see while naked. Thank the universe for the human ability of feeling more than one emotion at a time!
All I wanted was not to feel like a patient for the rest of my life, for people not to be able to tell that I was sick. And most will never know by looking at me. But my partner and I will see it forever. Thoughts of never being able to feel sexy again rushed to every corner of my mind. Would I be self-conscious every time I took my top off from now on?
Honestly, I’m still struggling. Between the big scars, the smaller boob, and the short hair, there are days I can’t find a way to feel like myself. Other days I feel empowered by how strong I am after everything I’ve been through, and that gives me tons of confidence. It’s a process, so eventually I’m sure I’ll get to fully embrace how I look.
Are we done yet?
You would think that after a clear MRI, and a mastectomy to make sure there’s not a single cancerous cell left behind, this whole ordeal would be over, right? Yep, that’s what I thought too. But I still had 13 more rounds of immunotherapy to go, a month of radiotherapy every day, and another surgery to remove my ovaries. Dr. Strikić gently broke the news, assuring me that I don’t have cancer anymore, and all that’s to come is prevention, to make sure I will never have cancer again.
As I already decided not to have children, and because my cancer was hormonal, a good measure was to remove my ovaries. There was a big chance of getting ovarian cancer in the future, and I needed to stop producing estrogen, so getting rid of them was an easy decision. Although the surgery was supposed to be much simpler than the mastectomy, it broke my spirits. See, I spent the whole time from the diagnosis until recovery from the first surgery –roughly 8 months– being a couch potato. I just didn’t have it in me to do more than short walks. So when I felt recovered enough, I pushed myself to start running again. Little by little, in short 1-minute intervals, walking in between to catch my breath. But I managed to be somewhat ready to run/walk 5K when the “Run for the Cure” race happened. And I felt the improvements from then. In my mind I was healthy and my body was rushing to catch up. Until the “simple” laparoscopic surgery grounded me for a month and made me start again from scratch. Sigh.
Radiotherapy was quite uneventful. For 20 consecutive working days I was put in a CT machine for around 10 minutes. There were no complicated side effects. My energy levels were low, and I got a dark tan on my breast, and a burnt spot on my armpit. Nothing that some antibiotic ointment and extra sleep couldn’t solve.
Immunotherapy, on the other hand, was not as easy. It was scheduled every 3 weeks, so it extended the treatment for many more months than I anticipated. And it took place in the chemo ward, so it triggered all the feelings I had during chemotherapy. There was always the same song playing in the background, which is constantly interrupted by the relentless beeping of the IV machines. It was always full, which led me to wonder about each person’s story. Most of them are elderly people, and it hurts to see how much they struggle. There was the physical pain in my veins that have been poked a thousand times. And an overall bittersweet taste in my mouth when I tried to take it all in… I owe my life to chemo, but every time I stepped into the ward I got anxiety, borderline to a panic attack. The nurses are the loveliest, and still I just wanted to run away.
I’m stubborn, and a very positive person, so before crossing the door I put on my best smile, and I reply with ‘excellent’ to everyone that asked me how I’m doing. I kept reminding myself that I’ll be there only for a little while, but the minutes went by excruciatingly slowly, while I tried to allow my anxiety to give way to gratefulness.
The last immunotherapy felt different. It was kind of anticlimactic. I had waited forever for this moment, yet it was just another uneventful visit to the hospital. So I mindfully took the opportunity to remind myself of how grateful I feel for my medical team. For the amazing nurses that always had a smile on their faces and an encouraging word. And for having the most amazing doctor in the entire galaxy: smart, witty, kind, funny… Dr. Ante Strikić is just perfect, a model of what every doctor should strive to be.
—Doc, if you’re reading this, I hope it helps you grasp the huge impact you had in my life. Meeting you was a true highlight in this whole journey. I’m delighted to be able to think of you as a friend that happens to be my oncologist : )
Dina, the same lovely nurse that started my first chemo, gave me my last immuno. “Full circle”, she said, feeling the same goosebumps I was feeling. She made me promise that next time we’d see each other would be for coffee, and that I never again would step a foot in the ward. I wholeheartedly agreed.
Stockholm syndrome
“I felt as though my body was a toxic waste dump”, sorrowfully states Rosamund Dean in her book Reconstruction, my companion through every stage of my breast cancer journey. Most of her words are way too relatable, but these ones particularly resonated with me. It’s been over a year of chemicals and surgeries, and I’m looking at probably over a decade of taking hormone-blocking pills daily.
My oncologist told me about many of his patients shortly coming back after their treatment is over, with placebo-lumps. He believes is a kind of Stockholm syndrome, with their brains not being able to cope with everything being fine. I think it’s “survivor’s guilt”. Now that I’m done, I can’t shake off the idea that I had it so easy and I was so lucky, in comparison. So many others didn’t make it. So many others will struggle for many years to come with the hospital’s bills. So many others were left with permanent side effects of their treatment. I shouldn’t really have anything to complain about. Yet I’m often conflicted between gratefulness and sorrow.
During the early stages of this journey I wondered “why me?”. I researched answers, questioned my life choices, pondered what I could have done differently. Until one day I posed the opposite question: “why not me?” Every time I feel down, fed up, or overwhelmed, I think that if this had to happen to someone I love, I would have volunteered to go through it in their place. It happened to me because I could handle it. And I’m extremely lucky to be in that position. Now, even with that being said, it’s normal to grieve, as Rosamund stated, “for your pre-surgery body, your pre-cancer identity, and comparatively carefree life”.
Life is full of contradictions, but my cancer journey taught me that you can feel the highest of the high and the lowest of the low at the same time. Feeling means that we’re alive, and that’s all that matters.
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