So, I have breastcancer. That sucks.

Treatment Progress: 93%
Chemo counter: 12/12
Radiotherapy counter: 16/16

I wanted to have a place where people can follow my progress if they feel like it, so here we are. These are my personal accounts of dealing with breast cancer. Cancer is different for everyone, but I wanted to share my experience to not only inform people of what’s going on with me, but also to perhaps help others prepare or deal with their own struggles. Writing about it also helps me process everything and is a way for me to let it all out, so to speak. I hope my accounts will prove useful in some way and I thank you for reading.

Most recent blogs are listed first.

The last update has been 5 months ago already, time truly does fly. The fact that it has taken me so long to update is a good sign I’d say. Life kept me busy and it has been the good kind of busy. I figured it’s time to transition to a different style of blogging since there are a lot less doctor appointments and it’s more about dealing with the side effects of the treatment. Before I jump into that let’s get you up to date with where I’m at now.

 I am on a waiting list to get breast reconstruction surgery. This will probably happen around December. The list I’m on isn’t extremely long but since they only do the surgery every 2 weeks a lot of time passes before it’s my turn. For the surgery I have to get a scan of my abdomen to map all my blood vessels, and I have to have met the plastic surgeons. I did all of those things. There are two plastic surgeons that will be helping me. One will be preparing my chest area while the other one will prepare my bellyfat.

 Meeting the first plastic surgeon was quite the experience. When he entered the room my dad and I were waiting in, he wasted no time to pull out his sharpie and asked to see what he was working with. As he was drawing where he would cut and what would be moved I felt like a bag of meat for the first time. He checked the weight of the removed breast and indicated that I probably would not have enough belly fat to fill the same size again. But he could easily take a little bit of my upper legs and fill the breast up on a later date. He wondered if it would be possible for me to get pregnant somewhere in the coming year or two, because that would make the surgery a lot easier as there would be more skin to work with. (That would be a no.) The second plastic surgeon was a bit more social. But even if she wouldn’t have been, I am OK either way. They are not there for their social skills, they are there to perform a good surgery, and I have faith that they will.

In the last few months I also had a new checkup with my original doctor. I initially thought that this was just to check on the status of my wound. But aside from checking the scar, he also checked my other breast. In hindsight that makes perfect sense of course, but at the time it got me thinking. I hadn’t fully considered the possibility that the cancer would come back in my other breast, for me that breast was the healthy one (it still is!). Everything was progressing nicely and I have a new MRI scan scheduled somewhere in November to just have another check.

Hot flashes

Now onto the topic I wanted to blog about, the topic that I will probably complain about most frequently: Hot flashes.

They came back in full force of course, and the recognition that it is something good because of the lack of estrogen is not really making it easier for me to accept it. Every hour, day and night. More intense when it’s warm outside.

I looked everywhere to try and find solutions. Unfortunately most solutions are hormone based. I got pointed towards a treatment that was in its experimental phase, it seemed to sometimes work, and sometimes not do anything at all. And it was only officially tried on women who are in natural menopause. A ganglion stellatum blockade, a treatment done traditionally for people with chronic pain in their arm and shoulder. Since hot flashes are an involuntary reaction of the nerve system (just like pain is) there is a chance that this treatment works to lessen them. The procedure is fairly simple, the right nerve group is found with an ultrasound after which a needle is inserted in the neck (local anestetics). This needle will give off fluid in an attempt to block off the nerve. The effect can be amplified by releasing mini electroshocks to the muscles surrounding the nerve. The treatments are supposed to last longer the more often it is done. I was lucky to have a doctor at my hospital willing to try these treatments on me. I have had three so far and I still have hot flashes every hour.

It is not all bad news though, I feel the treatments aren’t completely useless as it seems as if the mental aspect of the flashes is a little less intrusive than before. That means that it doesn’t take me out of my activities as much as before, at least for some of the hot flashes. Unfortunately it doesn’t make them go away. There was a part of me that was hoping that they would diminish to nothing. I have not yet accepted that I will continue having these hot flashes for the next 5 years (4 and a half by now!). I’ll keep doing this treatment and will keep looking for new ones that might work better.

That’s it for all the medical updates at this time.

Mental state

I wanted to take the time to place an update on my mental state as well. It’s been a weird couple of months for a couple of reasons. Let’s just start with the obvious one: it’s been a year. Especially in May I found myself re-living everything. From big things like the day I got my diagnoses and the day I got my first chemotherapy, to little things like messages received and conversations I had. A year ago I was fully focussed on my health and taking the right steps and didn’t take a lot of time, if any at all, to reflect on the situation. Now I have the time, and it’s been a roller coaster. From being happy I made it through, to feeling sad for having to go through it at all in the first place. Happy I learned a lot about myself and the people around me, sad about at what cost that lesson came.

I had a few weeks where I was feeling very wholesome. I was enjoying and appreciating everything around me. The silver linings had never been so bright. I felt very at peace with the world.

I also had a few weeks where things didn’t feel great all all. Every hot flash a struggle, every minor bad thing felt like a blow in the face, and no silver linings in sight. Ofcourse I tried to rationalize it all, but the chemical composition in my brain just did not allow me to feel good about anything.

It’s the Tamoxifen of course. This hormone therapy is known for bringing mood swings, and I knew they were part of it when I started with it. I think I thought too lightly of them then. I had mood swings before when I was PMSing, but never like this, never this severe, never this long. I was used to mood swings being quick ups and downs, I would be able to look back a few minutes later and know that I was not being rational. But the mood swings now are different, a bad different. Owen has been an absolute rock through these, even though he sometimes has to suffer through the worst of it.

Last year I was focussed on taking the steps needed and I was mostly set to make it through all the major treatments. I didn’t give much thought to the time that would follow after those treatments were done. I have now realised that the biggest battle might just be the mental one. Will the cancer come back? Probably. But when? In 40 years? Or in 4? Or maybe it was never completely gone and it is now slowly growing somewhere. Is that a muscle ache I feel? Or is it something else? Was that joint always this stiff? Is that headache a normal one?

All these questions, and never an answer. I just have to trust my body. But how am I going to trust my body after it developed cancer on its own? I find myself going between trusting my body and accepting that my body will betray me again in the future, the only question being, when. I know this part will become easier as time goes by, but I also know that somewhere in the back of my head I will always be prepared for bad news.

The thing about time is though, that it might make you forget. It might make you so focussed on other things that you don’t think about it anymore. Unfortunately, the hot flashes do not allow time to do its job. Every hot flash I am reminded of it all, every hour. The next 4 and a half years I will not be allowed to forget that I had cancer, unless I find something against the hot flashes that works.

There are three other big reminders of my illness that remain as well, my hair, my waist and my chest. My hair continues to grow, thankfully, it’s a bit curly but those are chemo curls and should be out in a year or less. By the end of this year my hair might fit in a ponytail again. Time will definitely solve that reminder.

My chest and my waist are getting solved too. Both in the same surgery even. The medication has made me gain some weight, which is hard to lose. I do try to keep it to a minimum by jogging and I recently started trying weights as well. I have to take the weights very slowly though as I shouldn’t strain my left arm too much. Ofcourse I didn’t start by taking it easy, not my style, and my scar went all raw from it and is still not fully recovered. These reminders will be fixed though, and time will heal these wounds.

Silver linings

Let’s end on a positive note. Because I might have a lot to complain about, I also have a lot to be happy for. A year ago I was worried that getting cancer was going to be the end of my carreer. It was not. Better yet, I think I might be better at my job now than I was before. I have grown as a person and I feel like that translates into me being a better desk host. In my personal life things are going well as well. I feel closer to my friends and family, and we have some new traditions we are keeping (going out for dinner or yoghurt with friends, going for walks with my family).

And last but definitely not least, I have bought a house together with Owen, and I am super happy to start a new chapter there with him. I couldn’t have asked for a better partner.

I had a regular check-up for the wound on this day. Nothing special, I will continue with the band-aids and the algae fabric. The Lucrin jab is scheduled for two weeks from now and I am taking the Tamoxifen so I know the estrogen can’t do anything in my body. The hot flushes slowly start to return, mostly in the nights for now. I think they won’t be back in full force until after the Lucrin starts working again. At the moment the hot flushes symbolize the lack of estrogen in me, which I now recognize as a good thing. I hope I can continue to do that but I know it will be hard. I just have to think about the numbers. I want the best odds. I don’t want to have a 33% chance the cancer will come back within 5 years, I rather have it be 17%. And even that seems scarily high to me. So bring on the hot flushes and the sleepless nights, the mood swings and the weight gain, and all the little side effects that I know will add up. It will be worth it.

In the morning of this Wednesday I have an appointment at the hairdressers. It is an expensive hair salon and I have explained my situation and have asked for advice which I am about to receive. Two ladies go with me to the back of the salon where I remove my scarf. One specializes in color, and the other in haircuts. They both feel my hair to check the structure and density, and proclaim the verdict: a pixie cut would definitely be doable. They recommend going a bit darker with the hair, a dark blond. Before going in I was super nervous, nervous and somewhat excited. There was a chance they would have asked me to come back in a few weeks when it had grown a bit more. But they didn’t and I could get a haircut. That meant that I could get rid of the scarfs and the wig. I don’t really mind the way I look with a scarf or my wig, but to me they also symbolize me being sick. A lot of the times in the last 10 months or so I have not really felt like myself, but rather like a person with cancer. Being able to remove the scarf and wig is not just about how I look, it is mostly a massive step forward mentally.
The salon has space for me later that afternoon, which fits perfectly as I have to go to the hospital first anyway.
I am meeting an adviser and assistant to the plastic surgeon today. I had already gotten a folder about all the different ways a breast reconstruction can be done, but today I will be informed even further and be told what can and cannot work with my body. The most normal way for a breast reconstruction is with silicon implants. Unfortunately, because I have had radiotherapy that option is not available to me. The skin is too hard and won’t stretch, so skin from somewhere on my body will be needed. They can either use a little bit of skin and put an implant under it, or they can take a big portion and form the whole breast with it. They do that with two places, one is a shoulder muscle and the other is belly tissue. I had already decided what I wanted, as I wanted something that would last for the rest of my life (so no implants as they last about 10 years). I want my breast to be reconstructed with belly tissue. It is called the DIEP method and they basically cut a portion of my belly away (including skin), rotate it 90 degrees and move it through the body, while still attached with blood vessels, to my chest and sow it in as a breast. As a result I would have a breast that is still my own tissue, feels more natural and overall looks good. It is a good thing that I haven’t been able to exercise for a while, otherwise I might not have had enough belly to show for. As it is, I should just have about enough for one breast. The surgery itself will take about eight hours and will be done by two plastic surgeons who do this surgery once every two weeks. My hospital is one of the few that does it in the area which means that more people from other areas come here to get it done. That leads to a waiting list of just under a year. And when you get a date, you go on that date, I will have no say in the scheduling. Recovery in the hospital will take about five days, followed by recovery at home for another week and half or so. This all ties back to feeling like myself and not seeing myself as a sick person. I can’t wait to get this done.

I have to switch hormone therapy. I will now take Tamoxifen daily. This is the most common anti-hormone therapy pill. On top of that we switch back from three monthly jabs of Lucrin to the monthly ones again and we will keep a close watch on my hormone levels. That means back to the side effects. Back to the hot flushes, back to the mood swings, back to lacking energy. To be honest, if I hadn’t had these few weeks with estrogen I don’t think I would have minded the side effects too much anymore. I got used to most of them. But now I know how it could be, how it was, how it should be. It is making me sad. Luckily I am writing this while I still have some estrogen left, so I can look at the bright side. Lucrin combined with Tamoxifen gives the cancer a return rate of 1 in 6 (16,6%) in 5 years. If it was just the Tamoxifen I would be taking that return rate would be 1 in 3 (33,3%). I don’t even want to know what the return rate is without either of those two. So I remind myself of these numbers when I struggle with it all.

I didn’t connect the dots then, but it is all so obvious now. I had my period on this day. And this is not OK. Having my period means that my ovaries are active, and that means they create estrogen. The current hormone therapy that I have is selected on the basis of me being in menopause. If I am not, then this hormone therapy will actually increase the amount of estrogen in my body. My oncologist asks me to keep them informed, does the period persist? Any pains, any other side effects noticed? The period stops after 3 days, if it even was one. It could be a random bleeding, but that wouldn’t explain the high level of estrogen in my blood.

Upon return I have my wound checked again and a fairly simple plan is formed for treatment. For the next two weeks I will need to change the bandage every two days. Fairly simple. There is a small piece of some fabric made from algae that I cut in the right size and push in the hole and I close it with some silicone band-aid over the top. Two days later I remove it all and put new stuff in. The pain is very mild and I only feel it when making the wrong moves. The surrounding area will stay bruised for a bit longer but it is fading.

About two weeks ago I had a blood test done to check my hormone levels. At this point in the treatment I have had Lucrin since May 2017 and there should be no doubt about me being in menopause. The blood test says differently. I have estrogen in my body that should not be there. The lady schedules an appointment with my oncologist for 2 weeks from now. For now I get to enjoy the lack of hot flashes and the fact that my body is actually losing weight again without me trying hard not to eat too many calories. I notice my waistline becoming more pronounced again, I notice myself having more energy, I notice myself being more upbeat. I also sleep better, deeper, and longer. I did not know I was missing these hormones as much as I was.

This day (a Monday) is exactly ten days after my last radiotherapy and one week before flying to China to host an event. Everything was on track, the skin was bright red and itchy but not broken, all as expected. Owen was away for an event and I was home streaming some Dota 2. As you can guess, things are about to go south.
In the afternoon I start feeling more pain spikes than normal in my chest. Not good, but pain spikes are expected as a result of radiotherapy so I suffer through them. They get a bit more intense and I feel some odd pressure. Upon inspection it seems like the wound is swelling a bit, but I could be mistaken. I continue distracting myself with some more Dota but the pain spikes keep hitting me and now there is a definite swelling. I call the radiotherapy department and ask if this is part of the recovery. The lady can tell I’m in distress (though that’s hard to miss as I’m crying from the pain and panic) so she connects me through to a colleague of my radiotherapist. Apparently emergencies aren’t normal with radiotherapy patients so she is very curious what is happening and is able to see me straight away. I live 10 minutes away from the hospital so after abruptly stopping my stream I make my way over, very very slowly because at this point any movement hurts.
Wound fluid, that’s what is building up in the wound. A lot of it. The cause can be anything, a movement that I have done a dozen of times could have caused some friction of tissue in the wound. What ever the cause may be, the result is very clear. My body thinks it needs to fill the entire area with would fluid and goes crazy. It causes the surrounding tissue to be pushed away, making it tight and painful. The radiotherapist suggests I take painkillers and wants to see how it develops over night.
I come back the morning after and am received by my own radiotherapist and her colleague. I didn’t know it could get more painful but it had, and the swelling had increased a bit too. At this rate I would have my left breast back by tomorrow. They know I want to fly to China in a week and want to make sure that I can go, so they don’t want to take measures that can cause complications (like draining). They think the swelling will stop and tell me that the pain will be a part of it till my body is used to the new mass, which might take a week. Just to be sure, they want to see me again in two days. This will be Thursday. I have the mobile phone numbers of both radiotherapists in case something goes wrong in the meantime.
Describing this week is a bit tricky for me as I was also battling a flu and a fever at the same time. It seems like a weird coincidence to have this all happening in one week. The weirdest part about it all was that my hot flashes seemed to be fading a bit. I thought it could be the fever that messed with my body temperature enough, or maybe the painkillers. On the Thursday I went back to the hospital and got told that I was good to go to China. I received some extra heavy painkillers to deal with the pain, but that is the only thing I should have to deal with. Oh, and there was a small chance that my body would try to fix the issue itself and open up on the scar to let the wound fluid out.
I think you can guess what happens next. Thursday evening, four days before I want to fly to China, watching TV. I am still feverish so I’m covered in a scarf and am wearing warm clothes. At some point I notice that my sweatpants feel damp, that’s odd. Realization sets in and I check. I am soaked, and I can see the fluid still seeping out a tiny hole in the scar. Panic. I text my radiotherapist, and bless her, she instantly replies. No need to worry, what is the color of the fluid? Tomorrow is her day off but I can go to the department to ask for some bandages. In the evening the color of the fluid was clear and the hole was tiny. I go to sleep with towels everywhere and a towel over the wound as well as it is still leaking.
Waking up was rough, the pain was still there, the leakage was still going, and the tiny hole was no longer tiny. It was a big gaping hole the shape of an eye, a large eye. The color of the fluid is no longer see-through, but thick and yellow. And did I mention the big gaping hole? Luckily I have gotten a lot of phone numbers for emergencies over this whole process. This time I call the Mammacare department, and they will see me right away. Well not entirely right away as I had a normal doctors appointment in the morning for a prescription of a sleeping aid that is not melatonine based (since I can’t bring CBD oil to foreign countries and I still want to sleep).
The Mammacare of the hospital I go to consists of two ladies who only treat breast surgery patients. They are truly lovely and so helpful. They cleaned out the wound, rinsed it and tried to get rid of all the fluid still in there. The thick and yellow fluid meant that it was infected, not good. They do what they can, knowing I want to go to China in three days. Antibiotics to stop the infection, a little bag hanging from the wound that will catch any more wound fluid my body still makes and a new appointment on Monday morning for a final check before I fly.
Monday morning rolls around, and the fluid in the bag hanging from my chest is no longer murky, it looks like pee. A nice and see-through yellow. I am given multiple of these little bags and some extra absorbing bandages just in case. The bags have a valve at the bottom so that I can drain the fluid without removing the bag. I am to rinse the wound and reapply the bag at last once while in China, but am I good to go. The lady at the airport security that patted me down didn’t seem phased when she questioned my left breast situation.
All this time the hot flushes continued to fade. I still had some in the nights, but I almost didn’t notice them during the day anymore. That meant I was more comfortable in my clothes and felt almost like my old self again. Almost, because the wig is still needed and I am starting to really dislike that thing.
At this point I have been on hormone therapy for over a month. I just take a pill every evening together with my evening dose of medicine that is supposed to help reduce the intensity of the hot flushes. As said I have started using CBD oil around the same time. The first thing I notice is my sleep quality improving due to the CBD oil. I had gotten somewhat used to waking up every 2 hours and having a hard time falling back asleep. Insomnia is generally caused by lack of melatonin production in the body, and guess what hormone helps create melatonin? Exactly, estrogen, the hormone that fed my tumor and that I now try to banish from my body. CBD oil helps create melatonin too in some way, and I went from waking up every 2 hours to waking up every 4 to 5 hours. I felt so much better rested in the mornings.
Another side effect of the hormonetherapy that affected me was painfull joints. Getting up in the morning or walking after sitting made me feel like an elderly lady. It went away after a minute or 2 of moving luckily, but for those 2 minutes the pain made me feel old. This pain got less as time went by, most likely due to the regular use of CBD oil which is said to help against that.
The main reason I started taking CBD oil were of course the hot flushes. I think they got a bit less intense, but they didn’t disappear nor lessen in quantity. A shame for sure but less intense is a small victory in itself.
All in all the hormone therapy itself isn’t too bad at all. The physical side effects I can deal with. As for the mental side effects, they are a bit less obvious and I’ll talk more about them later.
The radiotherapy is split up into two times eight sessions. The first eight are normal ones, while the second eight will be focused more on the skin and the scar tissue with the help of a gel pad that is draped over me. The side effects were not too noticeable in the beginning. I got tired more easily I think, but this could be a leftover from chemotherapy or it could be because of the hormone therapy. I made sure that the cream that was specified by the radiotherapist was applied twice a day. Slowly I saw the radiated area turning red, but not overly so. I noticed a bit more redness during the second set of 8 radiations, but there was no itching and no broken skin.
I finished radiotherapy on the 12th of January but I was told that the side effects will continue to build up for another two weeks before it will get better.
This update has been delayed for quite some time, but I will start where I left off. The 20th of December is the day I start with radiotherapy. Owen goes with me on that first day for some extra support. When my name is called I go to a small dressing room with two doors where I take everything above the waist off. On the other side of the second door I hear the nurse talking to someone else, it seems like they know each other for quite some time now. “See you tomorrow!” and the door to the dressing room next to me closes. My door is then opened and I am walked to the machine. Another nurse is setting everything up. When I did the scan a week earlier they recorded exactly how I was positioned on the table and they will make sure I am laying like that every time again. Once I laid down the positioning took another 5 mins or so before it was time for the radiation.
The nurses left the room and I am told to breathe in deeply and hold my breath. The machine rotates around me as it takes a quick scan. This quick scan takes about 40 seconds after which I am told to breathe again. Two breaths afterwards I am asked to hold my breath again and as soon as I do my the machine begins beeping. I do this 4 times in total, and each time takes about 20 seconds. And just like that it is over. I don’t feel different, I don’t look different, but I’m done. The nurse that picked me up walks me back to my dressing room as she chatters away. I see the red light in the dressing room next to me burning, indicating someone is already inside. “See you tomorrow!” the nurse says as she closes the door behind me and gets ready to open the door to the dressing room next to mine.
The visits take about 15 mins total from the moment of walking into the hospital. Sometimes it is more busy than others, but I never have to wait long. During my visits there is one thing that is very clear to me. The average age of people getting radiation therapy is very high (at least around the times that I am there). The elderly people that come here daily have made this waiting room into a social hotspot. The coffee from the machine tastes good and is free and there are nice tables to sit at. Every time someone enters the waiting room everyone already waiting greets the newcomer, and when someone leaves everyone says goodbye. It seems to be common to just sit back down and have another coffee before leaving after your appointment. Not for me though, I take my coffee to go and walk back home the moment I am done.
Today I meet with my oncologist. I go there together with Owen, and luckily my oncologist has no problem switching to perfect English. The talk was mostly about hormone therapy. He suggests Letrozol which is a hormone therapy that is normally reserved for people that are post menopause, and because I am kept in artificial menopause I can have it. Another massive list of side effects comes with the hormone therapy (which is actually an anti-hormone therapy as it will stop the estrogen production completely). Hot flashes is one of the most common one, which I already have anyway. Others I should expect are sore muscles, mood swings, weight gain (here we go) and hair loss. My hair is already growing back a lot more thin which is a side effect from the artificial menopause, and I hope that won’t get worse with hormone therapy. I guess we will find out in about 4 weeks. I start with hormone therapy this same day. I have decided to try CBD oil against the hot flashes, and with some advice I hope to know in a few weeks if it works or not. My oncologist is OK with it, and is curious if it works, as he has a lot of women under his care with the same problem.
I still do get a hopeless feeling knowing that I will be on hormone therapy for 5 years. It seems like such a long time. I have already started counting calories in the hopes to minimize the weight gain, but I have yet to accept that my hair just won’t be what it once was. For now I will continue wearing the wig to events anyway so it doesn’t matter just yet, and I have some hope that it will start growing properly in the near future. But I try to put all those thoughts away. Worrying about them won’t change anything. Just like looking at all the side effects of the radio therapy and hormone therapy won’t do me any good. Whatever happens, happens, and being sad, upset or angry about it won’t change the outcome.
On the morning of this Wednesday I have an appointment with the breast-care team because of a painful hard lump I have under my arm. Upon coming in I am checked by the breast-care team and their intern. While they are looking and feeling the surgeon pops his head in as well and with him the intern that was following him around. The all round consensus was that the lump was an infection for which there was a fairly easy medicine, a sort of deodorant like jar that I have to put on the lump for 10 days. They all were again very impressed with the way the wound was healing. Something I was very happy to hear.
Later this day I had an appointment with the radiotherapist. I went in with my dad and our main concern was to schedule the radiotherapy in a way that would cause me to miss the least amount of events. The radiotherapist told us that they had dissected the breast even further compared to last week, and basically put everything in a ball. All the infested milk glands and tendons rolled up. This made the tumor itself have a diameter of 18 centimeter. Ouch. She told us that at the moment, the chances that the cancer returns on the same side (in the scar tissue or under the skin) is 25%, but with radiotherapy she could reduce that to 4%. Great to hear what difference the radiation therapy would make, and it makes me even more convinced that missing events would be worth it.
When asked how many sessions will be needed she says that it will be a total of 16! The 20-25 value was an old method they used before 2010, but they have since then switched to 16 (more intense radiation, but less sessions basically). She does say that normally they want to start 4 weeks after surgery though. Which is right after Christmas. Not ideal but already better than in the middle of the Dota season. At this point though, I want to start as fast as possible to get it over with and ask her about the possibilities. It depends on when I can put my arms up properly to allow for the scan and radiotherapy. I promptly show her my progress of putting my arms behind my head, and even though it is not completely the way it should be, she recons it is good enough to start earlier. She would have to pull some strings to get me processed a bit faster but is happy to accommodate me if possible. And so the wheels are set in motion. I could come for a scan the next day, and start the treatment next week. Just like that I had a date that could mark the end of treatments. January 12th.

After talking to the radiotherapist we were sent to her assistant to get more information on how the radiotherapy would happen. We also got a very long list of side effects. Getting tired and having an ultra irritated/burned and darkened skin seem to be some of the standard ones. There’s also a whole bunch that can happen but might not. Only time will tell. It will be a tough period for sure, but it still feels so good that I have an end date in sight that I feel like it’ll be manageable.

The day after I go in for the scan. Nothing special really, though it did cost me some effort to stretch my chest muscle enough to be able to lie down for the scan. Because the radiation happens on my left side they have to use a breathing technique. This means that I have to hold my breath (max. 40 to 50 seconds) after breathing in as deep as I can so that the distance between my heart and my chest is as big as possible. They get a scan of me while holding my breath and while breathing normally. They also place 4 tattoo points so that I can be positioned in exactly the right way every time. Those hurt a bit more than expected but nothing serious. All ready for radiotherapy next week now, just an appointment with my oncologist tomorrow to go.
It has been a week and a day since my surgery and today I will hear the results of the pathological research done on my breast tissue and lymph nodes. Owen and my dad come with me.
First the good news: lymph nodes are clean. What a relief. However, the tumor was bigger than they anticipated. It was basically in every milk gland apart from a few rare exceptions. There was a main “furnace” and every small gland was connected to it. There were tendons that reached quite far towards the chest as well. For that reason I will need radiotherapy. No doubt about it. When I asked if he knew how many sessions it would be he said it would be around 20 to 25 daily sessions. That would mean 4 to 5 weeks of staying at home, and would definitely mean I have to cancel/turn down events. As always it was the bad news overshadowing the good news here. The other news was as expected, I would need to get hormone therapy for the next 5 years due to the hormone receptive tumor. I would get a call from my oncologist for an appointment for that, and a call from the radiotherapy department for an appointment to discuss their treatment.
The last thing that was mentioned was that my wound looked really good. Yes there was wound fluid and it was a lot, but it was not enough to be worried, and as long as I had no extra discomfort with it I could leave it. They would drain it if I thought it was increasing. Luckily that was not the case.
Some days were more painful than others. I sometimes forgot to be careful which caused instant regret. I had a pillow under my arm to relieve the armpit of any friction and that helped. I could shower by myself, but could not dry my back or legs without help. I got a fruit basket, chocolate, brownies, cards and visits. I slept a lot. I did my sisters nails, I did my own nails (new hobby to pass the time). Overall it was OK though. I was told to expect a lot of wound fluid, but if I would get more than a B cup or had extra pain because of it I should ring the doctor. It turned into a B cup, and would slosh about with every move I made. A weird feeling for sure, but not extra discomfort.
I remember when on chemo I would do nothing all day and my brain was fine with that as my mind was a bit fuzzy from the chemo as well. With this though, it was just physical discomfort and pain, but my brain was fine. So once there was no Dota to watch anymore I got a bit bored. I couldn’t sleep in the position I wanted to either which made me even more frustrated. More than with other treatments in the past, I was losing patience. Luckily I could start playing a couple of games a day again, though it still caused pain in my arm if I played too many. For the most part though, Owen made sure to keep me entertained by playing different games with good stories to watch.
I have to be in the hospital at 10AM. Not eating beforehand was easy as my stomach was a knot. Not drinking water since 8AM was a tougher challenge, especially since I get so thirsty with every hot flash. My older sister and Owen will come with me to the hospital in the morning. After reaching the right check in desk we are led into a tiny room to go through all the details of my visit. I have been warned that I will have to state what’s happening to me this visit approximately eight times.
Time to go to my room and wait for surgery. I have my own room, with which I am very happy. It has a bed, a little desk, a couch and a relatively large bathroom. Not too bad at all. I change into a hospital shirt and settle in. The surgery itself is scheduled for about 11, so I shouldn’t need to wait too long. I get some paracetamol and wait for my turn.
It takes a bit longer than expected but eventually two people show up to ride my bed to the surgery prep room. Owen and my sister can come with me till we have to go through some big doors. I was prepared for this whole morning to be emotional, especially the riding away from them part. But I even surprised myself by being fairly calm. Just a little nervous if anything. No teary farewell as I rolled away. Just laying in bed looking around and trying to see what was happening around me.
I used to ride horses, and when saddling up you would normally “park” your horse at a pole. I kind of felt like I was was a horse and was being led to my spot, next to others. Everyone in their own beds, a little curtain next to them so you couldn’t see their faces. Everyone did get asked to explain in their own words why they were there. The person on my left was getting a bypass. The person on my right had to get his appendix removed. I had to get my left breast removed (the nurses had put a big arrow on it to make sure they would remove the correct one). It seemed simple, this was surgery central and everyone was going through something rough.
When I started on chemotherapy I was told that I had some great veins, easy to put an IV in. Unfortunately chemotherapy isn’t nice to your veins, and they had to size down the needle since I now had kids veins. The IV had to be on my right side, which was the tougher side. The first two attempts failed (resulting into bruises that would stay for 3 weeks), but the third time’s a charm.
The anesthesist that would be with me during the surgery came to my bed then and first addressed my worries regarding my vocal cords. She told me that they had two ways of keeping me breathing through my surgery, one was indeed via intubation where the tube passes the vocal cords. There was, however, also a second method with a device that stopped right before the vocal cords, removing the risk of damaging them. They would start using that method but there was still a chance they had to switch to intubation if it didn’t work properly. I was so relieved, even though I knew the chance of permanent damage was small, it was still a weight off my shoulders.
She would also be administering the jab in my back. A quick simple jab I thought. It wasn’t until she produced two massive syringes that I knew I had thought wrong. This turned out to be a three person job. One nurse stood in front of me holding my shoulders as I sat on the side of the bed. The other two stood at my back. Using an ultrasound the right nerve was located after which a hollow needle was put in. One of the nurses kept the needle in the right location, constantly monitoring it with the ultra sound. The other nurse slowly put the fluid through while counting down. I am not sure if I can describe it as pain, it was an odd feeling of intense discomfort. Of course I had to get a hot flash during that moment as well, to make things just a little bit worse. I remember that the nurse who was counting down had the most calm and soothing voice, while the nurse in front of me had a firm hold on my shoulders. And then I was done. Ready for surgery, ready for losing my breast. The surgery before me ran a bit late apparently so I had to wait a bit longer, and I noticed my breast go numb from the anesthetics.
It was time then. Off I went to operating room 2. I got rolled in on my bed and had to go from the bed onto the surgery table myself. I then got covered with a preheated blanket (the room was actually quite chilly). I had met the surgeon before, but he did look different in his scrubs and with the little blue hat on. There were about 5 to 6 people in the room all patiently waiting for me to lay down and be passed out. My arms were spread out beside me on special holders and once again I was asked why I was there. Everyone had to hear that I was having my breast removed by choice. And then it was time, I remember being told that they would put me under and I was looking at the lights, and within seconds they became blurry and I was gone.
I woke up because I was thirsty, so incredibly thirsty. Blurry eyed I managed to get the attention of a nurse and asked for some water. She told me I had to eat a popsicle first. I remember thinking it strange but I ate that as fast as humanly possible and asked for water the moment I finished it. I ended up getting two cups which I drained instantly. In my thirst I had forgotten for a moment that I would be missing a boob at this moment. When I checked it I saw a nice white bandage and it looked really neat. There was no drain in it despite expecting one and I didn’t feel any pain at all. I was feeling pretty good actually.
The nurse told me that I was out of surgery for 18 minutes. I think she expected me to fall asleep again but I was wide awake. After I had been looking around for a while and making it clear that I wasn’t about to fall asleep again I was picked up and wheeled back to my room. At this point the thirst had been replaced by a healthy appetite.
When I got out of surgery my doctor had called my younger sister who was staying at my appartement that day. She was the one to inform my family and friends of how everything went. The surgeon told her the surgery had gone well and I would be sleeping for approximately 2 hours. Because of this they were not expecting me to be in my room as fast as I was, so when I messaged them that I was hungry it was quite a surprise. Luckily they were already on their way and fairly close by and were bringing snacks.
I’ve only had to cry twice during the entire process, once when my mom came in to visit me in the hospital (seeing her tear up made me tear up as well). And the other time was when Owen walked into the hospital room right after surgery. I was so happy and thankful to see him in that moment.
The rest of the afternoon is a bit of a blur. Owen and my sister sat and chatted with me. My older sister came back as well and later in the evening my brother and his girlfriend came by as well, much to the dismay of the nurse since it was all way busy for her liking. The nurses were very friendly though, and they were OK with me having visitors even when visitor hours were over.
During the afternoon we got a visit from an assistant of my surgeon who wanted to check on the wound and give me a report of the surgery. They ended up removing three lymph nodes. Two of them were “hot” as they call them. They were the ones with the most radioactive material and therefore the first in the line of multiple lymph nodes. They took both out as they weren’t sure which one was the sentinel. And another they took out just to be sure.
They didn’t put a drain in because the wound looked good and was dry when they patched me up, which was a good thing. There would be a chance that it would start bleeding again during the night, in which case they might have to remove any dried blood via surgery again. The chance of this happening was higher for me because of my age, but luckily this didn’t happen.
At some point in the evening the nurse came by telling me that I had to go to the toilet before 9PM, just to make sure everything works. She also said that Owen was allowed to stay the night, and the couch could be turned into a bed very easily. Best news ever. After all other visitors had gone and it was just me and Owen the nurse came to help me to the toilet. I had been feeling fairly fine up until that point, but while getting up my body betrayed me. I moved like a 100 year old, shaky and unstable. Sleeping went OK for the first part, but unfortunately the lady next door was having a lot of pain which meant that she was constantly making moaning sounds. Awake and in quite a bit more discomfort than what I was before I asked for an extra painkiller (I had had some paracetamol and naproxen until then). That helped me sleep quite well till the morning came around.
In the morning, before breakfast, I was asked to wash which proved quite the challenge. Luckily Owen could help out here. The disinfectant used during the surgery was bright pink, so a part of my body was still covered in that. I could not use my left arm, and the right had had the IV in still, so it was tricky getting things done. It did help me feel a lot better though. Getting back into my own clothes afterwards also helped a ton.
I’m not quite sure yet when the bandage was taken off, but I do remember thinking that the gash looked more clean than what I was expecting. The cut was also a lot longer than I was anticipating, around 20 centimeters horizontally. The area around that was still feeling numb and the main pain came from under my armpit where the lymph nodes were removed.
In my own clothes and in small steps I was led to a room where I was to get a bra from the hospital that had a pocket for a cloth prosthetic. They made me look in the mirror to make sure I was happy with it. I didn’t really want to look and I didn’t recognize myself when I did, but I understand why they made me look. I had just lost a breast and had to accept that and learn that it was OK.
Afterwards I had a couple more naps before my mom would pick Owen and me up from the hospital to drive us home. I live 10  mins walking from the hospital, but was not able to walk that. We had some food in the hospital restaurant before leaving, I was hungry and ate maybe a little bit too much. All of a sudden my body had a lot to deal with, it just walked to the restaurant, had to process the food, and of course at that moment I got a hot flash as well. Nausea, shaky vision, muscles feeling like lead, it was pretty horrible. My mom and Owen could only watch and wait for it to pass. It did fade though, after 5 minutes or so that seemed to last an eternity.
Once at home the recovery process began. The first day I would be at my own place still, and my dad would pick me up the next day so I could spend a long weekend at my parents house while Owen worked.

Only one more day to go, I have had dinner with friends before the weekend, spent the weekend itself with family and will have dinner with my sisters/sister in law and Owen tonight. Distractions all around, but I have one more appointment before I can actually have surgery. They will take pictures of my breast and inject it with radio active fluid to find out which of the lymph nods is the sentinel. They draw a nice X with waterproof marker on the spot where they see the sentinel node. All ready to go now.

Today I am meeting the anesthesist. He will talk to me about what it is like to be anesthetized and will answer any question I have about it. At least that is what I think the appointment is about. When I get to the hospital I am first to meet someone that goes through all of my data. She wants to know any medical issue I have ever had in my entire life and any medication I have ever been on. Then I am sent on to the next person who draws my blood for various reasons and makes a cardiogram. This guy apparently used to work with my surgeon and was very happy for me that I had him doing my mastectomy as he is the best.
The third person I am meeting today is the actual anesthesist, who turns out to be a massive guy (like 2 meters tall, bald with big beard) with a very soft spoken friendly voice. He was also  happy to tell me that the surgeon I have is the most senior one they have (not senior in age, but senior in terms of quantity of this type of surgery on his name). To reduce the number of painkillers needed after surgery he suggests an anesthetic jab in my back to a big chest nerve. It sounds like a sensible thing to do, less pain post surgery and all that is needed is one jab? Easy decision.
He manages to ease most my worries, but one big one I’ll just have to accept. There is a chance that my vocal cords are permanently damaged due to the intubation. The chance is small, but present.
One final warning was that I had to be prepared to wake up with a drain in my body. I figured I would be more taken aback by the missing breast, but it’s good to know what to expect.
At this point I just want the surgery over with, I think I am ready for it mentally. One more week before it happens though, one more week to wear low cut shirts.
I am starting to get used to the idea of missing a breast I think. There are times when I feel it prickle a bit and at those moments I just want it gone asap. But there are also times when I am just happy with the way I look with 2 boobs, and I wish I could just keep it instead.
I am noticing that my hair is slowly growing back a bit, unfortunately the ‘old man bald spots’ are not going away yet. I think I won’t go out without scarf/ wig until those spots are covered. I know that it can take a while before that happens. I hope to get some professional advice on maybe a different shampoo or something to help with the menopausal (lack of) hair growth. My eyelashes are starting to come through again which I love.
The thought of doing on-camera work while I am self conscious about my hair and my weight is very scary. I try to jog when I can, and am watching my scalp like a hawk hoping that I can force hair growth just by staring. Once hormone therapy starts I am planning on eating a lot more healthy, which will be difficult as I am a massive food lover with a sweet tooth. But I will try my best.
My toes still have no improvement and I see that as a reason to buy another pair of expensive but comfortable sneakers. Turning a negative into a positive, that will be my goal for the coming time.
Short hair? Time to buy a nice pair of earrings to show off. Hot flashes? I’m burning extra calories during one! Losing a breast? Reason to buy new extra soft clothes with zippers (can’t raise my arm for a while). Canceling events? Reason to be pampered by my parents while watching great Dota being played. Long recovery time? More time to play games and watch series. And who doesn’t like sleeping, I love sleeping.
A week ago I had an MRI scan, and earlier still the PET scan. Today I will get the result of those scans and more information on my surgery. I fly back and forth to The Netherlands from Stockholm to make sure I miss the least amount of DreamLeague. The appointment didn’t last long and the results were overall good, but not good enough to not need radiotherapy.
The PET scan shows that the tumor is in remission, meaning that there is no activity noticable, which is really good. The MRI is less conclusive but does show another decrease in density. Unfortunately my type of tumor is very rarely completely gone, and they are expecting to still find pathological active cells in the tumor. Due to this I will have radiotherapy after my mastectomy, and that means that it’s not recommended to have the breast reconstruction in the same operation as the removal. So for about half a year I will only have one breast.
I know the news regarding the tumor was good, but knowing that it could have been better, knowing that there was a chance I would not need radiotherapy and have a reconstructed breast instantly, makes me not as happy as I should be. Half a year is not that long I guess, it’s been just half a year ago that I was diagnosed. Still I have trouble getting used to the idea.
There are special bras for it and I know that people won’t be able to tell the difference with the right clothes, but I will know, and I will notice the difference. It’s a scary thought.
The oncologist indicates that I should get the surgery asap, and makes sure that I get called that same day for appointments and more information. I was able to have a phone meeting with my surgeon the day after and got told I need to make 3 appointments. The first one will be with the anesthesist, this person will be with me for the entire time I am under and will need to know a lot of information about me. This meeting is scheduled on the 21st of November.
The second appointment will take place on the 27th of November and is to check my lymph-nodes one last time before surgery. I think this is done via ultrasound mostly.
The third one is the big one, it’s the actual surgery. The 28th of November. I tried to move it forward but that was not possible, and to postpone it would be unwise according to my doctor. After surgery I am expected to need at least one to two nights in the hospital, and one or two weeks to recover at home before I can even think about work again. This means that for the second time I will miss the DreamLeague finals, this time a major. A necessary sacrifice I guess, but I am massively bummed out by it (understatement).
Another thing discussed with my oncologist is the hormone therapy. In my situation (below 35 years old) it is recommended to have hormone therapy as well as the jab that puts me in artificial menopause. I have the chance to put my foot down and refuse, but the side effects of the hormone therapy will be about the same as that of the jab, so I might as well start by doing both, see how it goes. This means that the next time I have the jab I will be getting one that lasts 3 months. It also means that I will have hot flashes for the next 5 years, and no estrogen at all during that time.
Estrogen influences hair growth, and I already notice my hair growing back a lot thinner than what it was. Estrogen helps process fat cells, meaning that gaining weight will be easier than every before, but losing weight will be very, very difficult. Estrogen helps with stabilizing your mood and making you happy, meaning that I will have more mood swings and at some days will feel depressed. Estrogen helps taking care of your intimate zone, meaning that sex is painful. And then there is the gigantic list of side effects that hormone therapy has. I can only hope that my body will adjust peacefully. Luckily I have the most understanding and loving partner that gives the best hugs and seems to be able to put a smile on my face in even my darkest moments.
The amount of radiotherapy that I need is not yet decided and will be based on the pathological report of the tumor after it has been removed. I just hope that it won’t cause me to cancel any more events planned.
It has now been three weeks since my last chemo, and I have to say that it is not as different as I was imagining it would be. I have come to the realization that aside from the energy difference, the side effect that has the biggest impact on my life are the hot flashes. They are the reason I wake up at night, they are the reason I feel like I’m dying of thirst every hour, they are the reason I get frustrated regularly, they are the reason my brain won’t work properly at times, they are the reason I can’t drink coffee or alcohol in the evening, they are the reason I get reminded about being sick every hour. The medicine I am getting helps a little bit, but doesn’t make them go away. Rather than being there every 45 mins, they are now returning every 70 minutes. I have learned that when I am cold they are a lot shorter, so I don’t dress for the weather and I feel chilly most of the time. The moment I am in a comfortable warmth my body betrays me by making me feel uncomfortable in the heat. Snug and cosy can turn into sweats and discomfort in a matter of seconds.
With regards to the toes there is a little change, I mostly notice one toe in particular that is not improving at all. It feels like I constantly have a stone in my shoe, I cant wear shoes without a lot a toe space because of pain. Part of my leg/feet tries to make up for the fact that my toe does not carry it’s weight, making those parts be painful. I jog to try and keep in shape, but I can’t last as long as I would like to due to my toe. The massages are not yet helping, but perhaps the acupuncture that I am planning to get will.
In the meantime I will keep focusing on the positives. I have more energy and higher stamina. I should not have chemo ever again if all continues to go well. My hair will start growing back in a few weeks, so will my eyelashes and eyebrows. I am looking forward to my first hairdresser appointment, and to the first time I have enough hair to go without wig again. A lot of good things to look forward to.
Time for a chat at the hospital. My blood results are good again, a bit better than last time even which is great. As for my toes, there was no improvement. It changed a bit, getting a bit less in toes that had minimal neuropathy, but it got a bit more intense in the two toes that had the most. This is where it gets tricky, because they don’t know if the damage that is done will go away, and they don’t know how much worse it will get if I would get a new dose of chemo. The assistant advises to stop the treatment because the risk of (more) permanent damage is too high. She goes away to check for a second opinion from an oncologist who confirms that this is the advised path. So that’s it. No more chemo.
I have had 8 out of the 12. It feels weird. Somewhere I want to cry because it feels like a big and nasty chapter is finally over. Somewhere I feel like my toes and my body failed me for not being able to complete it. The happiness is stronger though, and I go to the wing of the hospital where I usually get my treatment to say goodbye to the nurses who were always cheerful and chatty and never made me feel like a patient or a number.
Onward to the next step: surgery. I already had scans scheduled for after the chemo, but now that chemo is done they need to be moved forward. I am able to have a PET scan already the next day, but my MRI is on the 1st of November. The appointment to discuss the scans is a week after that. These scans will be able to tell me if I need radiotherapy or not. Depending on that I will get a mastectomy and reconstruction in one go, or mastectomy first and reconstruction after radiotherapy is completed. A lot of unknowns, but I’m still on the right track so I am very happy with that.

Today was the last day of the Starladder Invitational in Kiev. I was very tired by the end of it, but so was other talent so I am not sure if that was because of the treatment. I had my sister with me this event for extra help, she made sure I had healthy snacks and made it so I only had to worry about my job and nothing else. That, in combination with Starladder also providing healthy food and excellent care, made it so that this event felt great for me. The hot flashes were obviously still there, and I did mess up one throw to a video because of it, but everything felt under control.

I emailed the hospital this morning, informing them on the status of my toes. There has been no improvements, and it’s even a bit worse compared to last week. In the afternoon I get a phone call from one of the assistants that had a chat with the oncologist regarding my toes. She informs me that we will skip this weeks chemo because of the neuropathy in my toes. She insures me that this is a common thing and skipping a chemo at this stage will not have negative consequences. This means that the total rounds for this chemo treatment is now 11 rather than 12. For me the timing is perfect since I have plans to work again coming week (Starladder Invitational, Kiev).

The chemo yesterday went well, it’s a normality now. On this Wednesday I fly to Stockholm for DreamLeague to work for the coming 5 days. It is a bit of a gamble since I don’t know if I can keep my energy up, but my doctor told me I could do everything I wanted as long as my body cooperates. While in Sweden we stay in apartments that have a nice gym in the same building. I try to go when I can and when I feel good enough, and it helps a ton. On the longest broadcast day I don’t feel like I am more tired than my colleagues. It feels good to work, and feels even better to know that all the exercise of the last two months is paying off.

When I got the call today I could tell the doctor that my toes have not been getting worse, and I am even thinking they are getting better a bit. They don’t hurt as much as they did last week at least.
The fact that they didn’t get worse was enough for giving the green light to continue the treatment. Tomorrow I will have my 8th chemo of this batch.

I have had seven out of the twelve chemos now. My energy is still good, and I am hoping for the feeling in my toes to come back over the weekend. Monday I will receive a call and will relay the status of my toes to my doctor. He will decide if I can continue or not. I didn’t think I would say this, but I hope I can get chemo coming Tuesday.

I think my stamina has increased over the last couple of chemos. I feel good, my energy levels are great, but I have these numb toes that are very annoying. Today I have another appointment with the oncologist. He tells me that what is happening to my toes (8 toes now, rather than the one) is normal, but not good. He will decrease the dose for the coming chemo’s to 75% but it might not work. Nerve damage is a weird thing, and not a lot is known about it. The toes might be fine, or they might not recover at all. If the decrease does not fix the issue there is a chance that they either have to postpone the chemo, or maybe even skip the rest of the treatment and go straight to surgery.
That is a shock to me. I thought everything was going fine, even had it all scheduled out with the chemos and work planned around it. Skipping chemo sounds good on one hand, but I don’t want to take any chances with my health. No unnecessary risks.
Reducing the dose of this specific chemo is apparently a common thing, but skipping the rest all together happens in about 20% of the cases only (according to my oncologist). I don’t want to be a part of that 20%, but I have no say in this of course.
In the meantime I have still been getting hot flashes every hour. Sure, they are a little bit less intense than what they used to be, but still very annoying. They also still have a negative influence on my sleep. As of today I get to increase the dose of ‘clonidine’ one last time to see if that works. It will take about 2 to 3 weeks before I might notice a difference. Fingers crossed!
I have now had 5 chemos and this is the first time where I notice that the feeling in one of my toes is gone. It is constantly asleep and goes from tingling to painful. Not good, so I email the oncologist and get told it will be okay, and we will still have the full dose of chemo next time, no change.
I mentioned before that I was planning on working a bit again. This coming weekend is to be a bit of a test for that. On this day, the day after chemo, I have a flight planned to attend a wedding the next day in a different EU country. If I can do that, and be fine, then I can work and be fine. Luckily everything was indeed fine and my energy was good. I had a great weekend.
However, this was the weekend that my hair started to fully fall out. A very emotional experience and something that I don’t think anyone can ever prepare for. I knew it might happen, and I knew that I would have to get the remaining hair removed at the wig salon. I didn’t want a mirror and Owen was standing in front of me while the lady that removed my hair kept me talking while she worked. I walked out with my wig on, and didn’t see my own bald head till that evening when I got home.
It was hard seeing myself like that for the first time. I think I hadn’t really looked sick till that moment. But at the same time there was something liberating about it all. It was such a hassle before, not being able to do my hair properly, only washing it once every 3/4 days. And when I did wash it I had to be careful with the brush, and every time I would lose a bit of hair again.
Now all that hassle is gone. My wig fits me better, I can wear hats and scarves, and showering has never been more efficient.

Getting green light was easy. My blood showed that my kidneys were doing good and I was in good condition to continue. I also took this opportunity to ask my oncologist about my path after the chemos are done. A lot of information is shared but in the end only one thing is clear: nothing is certain. There is a chance that I won’t need radiotherapy and can have the mastectomy and reconstruction at the same time. There is also a chance that I will have the mastectomy and will need a lot of radiotherapy afterwards, making reconstruction at the same time too big of a risk. I find it difficult to have hope for good news. I hoped for good news the day I came in for my diagnosis, and that didn’t do me much good. I know I have no control over what is going to happen, and I have been getting better at accepting that. One thing that I did get (some) control over are the PET and MRI scans that are needed after chemo is done. It felt good planning things post-chemo.

Today is the day before talking to my oncologist again and getting a green light for the next three chemos. I feel good, I am confident that I can work a bit during this treatment and I can see the end of the line of chemos. Three down, nine to go!

The third treatment is done, still going strong. This treatment as well as the previous one I was able to stay somewhat awake during it. I have also taken to retail therapy. I am the proud owner of a fitbit, and since I still have hot flashes I allowed myself to buy a fancy pillow that is supposed to keep my head cool during sleep. I am feeling fairly good all things considered.
On this day I even made a great discovery. I have started growing armpit hair again! I know, TMI and all that. But to me this is a clear sign that says that this treatment is indeed a lot more mild, a lot more friendly to my body than the previous one. I would have never thought that I could get happy over having some short thin blonde hairs growing in my armpits, but here we are.
Here we go again. Chemo time.
I have chosen to no longer wear the cold cap. My hair is thin and some parts of my scalp are near bald as the cold cap did not fully work. To go through the cold cap process 12 more times while it’s not working properly did not seem worth it. On top of that I am fine wearing a wig and wearing it daily during TI7 made me very comfortable with it. This means that the chemo sessions are reduced by at least 2 hours each time! For the new chemo I am given an anti-allergy medicine that gets different reactions from different people. There is a chance I won’t notice it at all, and there is a chance I will pass out during the treatment. For this first treatment I belonged to the latter category, the jetlag helped for that one I think.
New chemo, new side effects. No one can tell you exactly what to expect as seems to be the norm for cancer. Time to wait and see. After the first chemo I was really tired from the medicine and basically slept the whole day save for some food breaks. The next day I felt kinda OK, I even went back to streaming because I felt good enough.
I am writing this bit after having three treatments of this specific chemo. The biggest difference compared to the previous one is no nausea. I seem to be able to function quite well, as long as I don’t get too physically active the first day or so afterwards. I notice that I get fatigued easier on those days. But it seems manageable, even to the point where I think I can work again! My oncologist has told me to be on the lookout for a few side effects such as tingling in fingertips and feet, but sofar I have not really felt that so so far so good. I am even hopeful that I can continue building my stamina throughout my treatments.
I had an amazing time at The International. I was able to commentate games during the groupstages and be part of the content team for the main event. My energy was good and the only things different from normal were wearing a wig every day and dealing with the hot flashes. Luckily the US is the land of airconditioning which helped me quite a lot in getting through the hot flashes. Only at the end of The International did I notice my energy running out a bit. Probably a combination of the active two weeks and the knowledge of new chemo rounds waiting for me back home. Thanks to Valve providing me with business class flights I was able to arrive well rested in The Netherlands, which was needed.
It all started again on Tuesday the 15th, a day after landing, when I had an appointment with an oncologist. (My own was on holliday so I spoke to a collegue of him.) I received the results of the MRI scan I had before I left for TI7. I had noticed the difference in my breast over the course of the previous set of chemo, and I was hoping for some amazing before and after pictures of a tumor that had shrunken in size. No such luck unfortunately, as the tumor did not decrease in size but only decreased in density. According to the oncologist this was the right progress to expect with the type of tumor I have, so it was good news. I couldn’t help feeling a bit disappointed by the lack of decrease in size however, probably because I was really looking forward to seeing the difference that I felt myself, on the scan. The disappointment was quickly eclipsed by the good news that I could try some medicine against the hot flashes. It might not work, but knowing there was a chance to reduce them, or even completely remove them made me extremely happy. Hot flashes have made my nights a constant struggle, waking up on average 6 times a night bathing in sweat is not great to say the least. If the medicine works it should work in about 3 weeks time, fingers crossed!
My blood was all good and healthy and I did not have any other significant complaints or issues with side effects so I got the green light to start the next set of chemotherapy. This set will last for 12 weeks with chemo appointments every week.

I wish I could say that the smoothies helped, but the fact is I don’t know. My blood was not better, the amount of white blood cells was lower than before. I was lucky that it was exactly on the threshold for allowing the chemo to continue. At this point I knew I had the chance to go to Seattle 2 weeks from then. Airports aren’t the most hygienic of places, and neither are esports events. To avoid any risk with my low white bloodcell count I was to have an extra injection the day after chemo to boost my white bloodcell production. This way I would have a healthy immune system by the time I travelled.

TI7 in two weeks time, that was the goal. Get the 4th chemo and get as healthy as possible afterwards. This one definitely took a larger toll on my body than the previous one, maybe because of the extra injection. My brother and mom took turns taking care of me this time. I was more tired than I had been in the past. Walking from bed to couch tired me out a few times, that was weird. At some point I questioned if I was going to be healthy in time. But I kept walking and eating healthy. Eyes on the prize.

And just like the other three times before this I recovered. I got my energy back, and this time was different. Not just because TI7 was just a week or so away, but also because this was the 4th chemo. The last of the first heavy ones. I’m already given some information on the next set, but that doesn’t start until the 16th of August. I’m writing this while in the plane to Seattle, I just had my halftime MRI scan yesterday and the results of that I will hear on the 15th of August.

That means I have two weeks to fully dive into The International. Two weeks to breathe Dota2. Two weeks of bliss.

The lower blood values I had before my third chemo stay on my mind. I don’t want that again, I want to be as healthy as I can be before going into that treatment. So I start drinking smoothies, spinach smoothies to be exact. Lots of iron in there, and combined with banana you don’t taste any spinach at all. I hope it works. The hot flashes are still present, and I continue to drink sage tea and soy milk, in the hopes that it can reduce it. They are now a bit less intense and that is also helping me sleep a bit better. The Saturday before the fourth chemo I go on another hike. This one a bit longer than the first one, 17 kilometer in about 3 hours. I feel like it was easier than the previous one. A couple of days left until the 4th chemo, the last one of the heavy batch, supposedly the biggest hurdle in my chemo treatments. I feel healthy, I feel fit, I feel ready. I hope my body is not deceiving me again.

Third chemo incoming. My older sister comes with me and we watch a movie while I have a frozen scalp and chemicals leaking into into my hand. I have been told that the third one is supposed to be feeling heavier than the two before this. Mentally I am prepared to deal with the worst.
It starts the same as normal, feeling a tingling all over as we walk out of the hospital. Have some food, have a walk. This time I feel tired very early already so I take a nap. Then more food and another walk. I wake up a few times during the night but it was not as bad as the second time. On the day after I walk some more, eat some more, sleep some more. Come afternoon I was wide awake and actually felt like I had some energy. We end up going into town and shop shoes for my sister, and even sit down and eat something. Some more eating and sleeping and walking when home. The days after this chemo end up being the easiest ones yet. Sure I feel bad, and do need a lot of rest and some anti nausea medicine, but that is all part of it. Compared to the second and first chemo this one seemed to be easier to deal with.
The fourth day after chemo is the first day without the steroids that I am given, but I wake up energetic and want to go into town to buy sage. Owen comes with me, we find the sage and head back via tram. At some point while sitting in the tram I feel bad, real bad. Out of the blue with no warning I feel nauseous, dizzy, and downright awful. Luckily we are almost at a stop and get off instantly before it gets worse. Sitting in fresh air helps, and after a bit we walk the rest of the way. Walking is still a miracle worker since I feel fine after a few meters already. It was only a small incident but it reminds me that I still have to be careful.
Before talking about the third chemo I want to talk about an extra treatment I am getting.
Having chemo takes its toll on your body, it affects a lot inside your body. Sometimes it can even cause permanent damage. One of the organs this could happen to are the ovaries. Becoming infertile is very probable when on chemo therapy. However, there is a way to give the ovaries a high chance of remaining intact. A way that I took. For the entire duration of the chemo therapy I am kept in artificial menopause.
The injection that I get every four weeks makes sure that my ovaries are kept dormant, and my hormone levels are near nonexistent. Turns out, estrogen has an important role in the body that it can no longer fulfill in mine. It is the hormone that controls your temperature. And with nothing left to control that, and with my body not having found another way of dealing with that, hot flashes are imminent. During a hot flash your temperature control gets confused, and decides that it is very hot. When your body is hot your veins become widened to increase blood flow, and you sweat. This only lasts for a couple of minutes after which your body decides it needs to cool down, and depending on the temperature around you it will. When you are in a colder place it will first make you too cold, and when you are in a warmer place it will take long to cool down.
I know what you are thinking, it is just a bit of heat, just a different temperature. How bad can it be? Very bad, that’s the answer. One hot flash is fine, but unfortunately for me I had a lot. Later on I would measure how often. One hot flash every 45 mins. Like clockwork. The first one right as I wake up, and every 45 minutes onwards until I go to sleep.
Heatwaves rolling through my body every 45 mins. To call it a discomfort would be an understatement. From the doctor I heard that there is a chance that this will not stop, better yet, there is a chance that I will have this for the coming 6 years due to the (anti) hormone therapy I will receive. Not the news I was hoping for. Most counter medicines out there for hot flashes contain hormones, the very thing that makes my tumor grow.
Google is my friend though, and I search for ways to reduce the flashes. I now regularly drink sage tea and soy milk/ yoghurt. At the moment of writing this (4 days before the fourth chemo) the hot flashes are every 50 minutes to an hour, and most are less intense than what they used to be. I hope that with a bit more time my body will be used to the lack of estrogen and will be able to deal with it properly.
Whether or not the protection of my ovaries is working will remain to be seen. Once the hormone therapy ends they will either remain dormant, or will start being active again. Time will tell.
My third chemo was scheduled on the 29th of June. That means that on the 28th I went to the hospital to get my blood checked out and talk to my doctor, or in this case, one of the assistants of my doctor. My blood values were a bit on the low side. Luckily not low enough to need extra medicine and not low enough to cancel the chemo, so that was good. But even though it seemed like this was fairly normal because of the treatments, I felt a sense of failure because of it. My body didn’t do as well as I thought it did. How did I not notice that, why has it let me down? I get that this is somewhat melodramatic, but I felt betrayed.

The days after chemo treatment I would describe myself as an old dog. I take walks, I eat and I sleep. Not much more than that. After the first chemo I was able to go see an afternoon movie 2 days afterwards. Felt like quite the victory for me. After the second one I was able to see a movie 3 days afterwards.

It took a little bit longer to recover after the second chemo, as it was a bit harsher on my body. But I still recovered, started feeling like the old me again. And although I was still losing hair every day, I felt good. Good enough to go on an over 15 kilometer hike the Saturday before my third chemo. On top of that I was able to commentate 12 games of Dota2 by myself for the TI7 Qualifiers. I thought I was back to my old self.
That wasn’t quite the case.

The second chemo session is scheduled on Thursday the 8th of June. My blood is already approved the day before and the fact that I am on heavy antibiotics for an infection will not delay the chemo.

My younger sister will come with me on this day and we will play more Snipper Clips.

This second time the cold cap is a lot less friendly. The first 15 minutes were hell but I refuse to give up. At this point I have already lost a lot of hair but so far it still looks ok, just a bit thinner. A massive headache comes with the cold cap as well and makes this round of chemo a lot more unpleasant than the previous one. Once again Snipper Clips makes the time go fast and we are outside in the afternoon.

This time I know that walking helps and sitting still will make my body more unhappy with the chemo. So we walk. We walk a lot, short break for food and more walking. At this point I don’t want to sit still, I dread going to sleep, so I walk.

The night was as bad as I expected it to be. Feverish dreams, tingling all over, and drifting between awake and asleep, never really being either. I eat and drink whenever I can during the night hoping that it helps, it probably does a bit but I still feel like shit.

The morning comes around and it’s raining. That combined with the fact that I was still dead tired and my sister was still sleeping makes me delay the walk. Probably a bad idea on hindsight.

I don’t really remember the day that well, but it was my worst day yet. The antibiotics might have something to do with that as my body was still processing those as well.

At this point I have to mention what enormous support I have received since making my situation public.

First of all Owen has been a great support, he is there for me when I need it and is able to help me without making me feel like a cancer patient. He has cancelled events to be able to be with me more and makes sure I am always entertained even when I am super tired and all I can do is be a zombie sitting on the couch.

Then there’s my family who have been so amazing through all of this. They make sure I don’t have to go to appointments alone and that I am taken care off after chemo. I know that they would drop anything and help me out if I would need them to.

My friends keep me distracted by chatting to me, hanging out with me or go on walks with me whenever I want.

And the Dota community, never could I have imagined the amount of support coming from all around the globe.

I knew it would be news of course, but I was not expecting it to be as massive as it turned out to be.

Since that Sunday (14th of May) I have received countless messages with people expressing support and sharing their own experiences with cancer.

The reddit admins made it so there is a pink border around flairs when you put my name in the text. And even now (I write this a couple of days before my 3rd chemo) I see the pink lining and it makes me feel so supported. It is such an amazing feeling that a thank you wouldn’t even begin to cover it.

And then the Manila Masters, the first event I had to cancel due to chemo. I was watching the tournament from home with Owen and a guy that does the battle of the rages gives me a shoutout (thanks Puppey Jr) on stage, and a couple of guys have taken it upon themselves to provide pens and paper for people who wish to send me a message. I have not received them yet but I know there are about 400 letters on their way to me.

The first couple of times I streamed after telling people I had cancer my stream was full of random people showing support and helping me in the way of donations and subscriptions and support messages. People that don’t normally watch my stream, people that don’t normally even watch Dota2 at all, all just stopping by to let me know they care.

It has all been so incredibly heart warming. I am eternally grateful for all the support.

I was scared. Not gonna lie.

My brother was coming with me that day.

Up until that point I had of course had several emotional moments, but every time there was something else I could focus my mind on. The wig appointment, the dentist, hairdresser, dinner with friends, all were forms of distraction for me. When those fell away I had nothing to look forward to, and in my mind I was basically a different person. I was changing from healthy me, to cancer patient me.

Every time I spoke to a doctor or looked online about what would happen to me during chemo I was met with vagueness. I could feel ok, but I could also be bedridden for weeks while throwing up every 10 minutes. It could be horror, or it could be minor inconvenience. No one knows, no one could know. Everyone’s body reacts differently.

The moment my brother walked through the door I broke down. When I was able to collect myself we walked to the hospital. A 10 minute walk that I was already very familiar with by that point.

We were early, but at exactly 10 in the morning, the actual time of the appointment, we were taken from the waiting room to a room with 1 hospital bed in it and a few chairs. I was told to be on the bed as the cold cap would be heavy and I would want my head to be supported.

When the cold cap was minus 3 degrees Celsius I got it strapped to my head. This process consisted of heavy tugging and pulling as the cap needs to be on super tight to be able to freeze the first layer of my scalp that holds the roots of my hair. After it was on the temperature was lowered to minus 6.

I was told that in the first 15 minutes of the cold cap a lot of women change their mind and want it off. Too cold, too painful, not worth the discomfort. I think I was lucky that first time, as the discomfort I experienced was not half as bad as I expected it to be after hearing the bad stories.

I got an IV drip in my hand that first gave me a bag of anti nausea and steroid fluid. After that it was chemo time. Bright orange fluid was the first bag of it, I was told that I should press a panic button the moment I felt any kind of burning on my hand. If the chemical would be in my veins it would be fine, but if it touched any other tissue it would burn through it.

That warning made me really realize that it was actually happening, poisoning my body for the greater good. I watched the orange fluid enter my bloodstream. Weird how my body wasn’t aware yet it was being poisoned.

The day itself passed rather quickly. Me and my brother played Snipper Clips on my Nintendo Switch. After a couple of interruptions to our game play when nurses changed the bags of fluid we got told that it’s done. All that we need to do now is 90 minutes of extra cooling with the cold cap before we can go.

Snipper Clips is such a good game to take your mind of things if you are with multiple people. It really did make time fly.

With chemicals coursing through my veins my brother and I left the hospital at around 3 PM. What to do next?

It felt weird, my body was tingling. But I didn’t feel bad, I actually felt quite energetic (the steroids probably helped with that).

We ended up grabbing a late lunch and bought some soup and bread for dinner later. When we got back to my apartment it started to hit a bit. I felt tired, and ended up watching my brother play Horizon Zero Dawn for a while.

That evening I found out that the nausea pills were amazing and that walking really helped. Two lessons that would prove to be invaluable.

My brother left at about 9 pm and I ended up going to bed quite fast after that.

This PET scan was scheduled on Monday the 8th of May. The Tuesday morning after I would instantly have the results and meet my oncologist for the first time.

My dad went with me on that morning. First things first: it hadn’t spread! That was a relief.

We got a ton of information about everything regarding my treatment and the reasoning behind every part of the treatment. We had a lot of questions and got a lot of answers.

After talking to my oncologist we talked to his assistant who gave us even more information and gave me a “keppie”. This is a head cover that I can use at night if I end up bald from chemo. It was all very real now.

We were in the hospital for 4 hours total. Measuring cold cap, having blood taken and getting a ton of medicine that would support me through chemo.

The next day there was another short hospital visit for some final talks, and I got the green light. All set for chemotherapy.

Here are some of the facts of those hospital visits:


With my oncologist I decided to go for two separate chemo treatments. The first consists of 4 sessions, each 3 weeks apart. The second is 12 sessions which will happen weekly. This second treatment should be easier to endure than the first.

Cold cap

I will be trying the coldcap. This is a method that freezes the scalp during the chemo treatment. It gives a chance (33%) to keep my hair. It will make each treatment take 3 hours longer, but I want to try.


The treatment plan I have chosen is well considered. I know why I do what I do. I know why each step is taken and have discussed this with my oncologist. Every question I have gets answered to my satisfaction. I trust in my oncologist and in the treatment plan laid out.


My first chemo session was scheduled on Thursday 18th of May, meaning I had a week time before starting. I was able to work a couple more days of DreamLeague before flying back to the Netherlands to prepare.

Preparations started with a dentist visit (infections in the mouth are very common during chemo, and it is best to start the treatment with clean teeth). Next was a visit to a place that made wigs. I tried out multiple wigs and told the expert what I liked and disliked about them. Our next appointment I would try on more, based on my feedback and on my natural hair.

The day before chemo I got my hair cut short as that would be more practical. On the evening before I had dinner with a couple of my closest friends.

On Wednesday May 3rd I went to the doctor with my mom. Definitely cancer, the doctor said.

He told us the type, showed us the picture. Lots of tears. What is the plan, what is the next step. Can I still work DreamLeague? Can I keep my hair? Has it spread? Is it treatable? Survival chances?

A lot of questions.

At this time I was scheduled to fly to Sweden the next morning to work DreamLeague. Owen booked a ticket for that afternoon to get me to Sweden (and to him) faster as he already flew the day before. I was able to work a couple of days and pretend nothing was wrong.

Of course I instantly informed my employers so they were aware of the situation. They all responded super supportive, something that I am very grateful for.

Here are some of the facts:

Type: Lobular, grade 1. Adenocarcinoma estrogen receptor positive, progesterone receptor positive, HER2-neu negative.

Tumor size: 6x6x2 cm

Treatmentplan: I will have to discuss my exact treatment with my oncologist, but this doctor said I would first have about 6 months of chemo, followed by a mastectomy. Afterwards I will have radiotherapy, followed by a breast reconstruction surgery.

Estimated full recovery time: 1 year

So that was bad news.

Next step was a PET scan to see if it had spread.

First I will take you back to the beginning, to where I first noticed there was something wrong with my breast.

I had noticed that the breast started to angle a little bit more to the side than the other. Figured I was getting old, that it was leaning to the side I always sleep on because of that. About a month and a half after that it got a bit worse and that’s when I noticed something hard in it. Uh oh, not good! In my family there is no history of breastcancer what so ever, so that did not come to mind straight away. So I started googling, figured a doctor visit would be in order (I had a very annoying deep cough for 2 months at that time that I wanted to have checked out anyway as well, two birds with one stone.

I went to the doctor on Friday the 14th of April, he checked out the cough, said it would pass with time (it hasn’t yet fully btw), and he checked out the breast. At this point it was very clear there was something hard in there that was quite big. He couldn’t tell what it was and told me he was going to refer me to a Mammapoliclinic. This clinic would do all basic investigations in a few hours. So into the healthcare mill I go.

I was able to get an appointment on Friday the 21st of April. I started with a mammogram, followed by an echo. I had massive Grey’s Anatomy vibes during the echo. The doctor that started the echo was probably halfway through her twenties and was having issues with the echo. There was a very obvious large hard thing in my breast and she could feel it very clearly, but on the echo is was a lot less clear. It was a strange thing that she had not encountered before, so she called in help from a senior doctor. I would estimate that this doctor was still younger than me. She came and looked at what the other doctor was doing, and decided to take over the echo. She ran into the same problem as the previous doctor, but there was consensus between the two doctors and both their assistants that a biopsy was needed.

They give me a local anesthetic and first dig into a lymph node to take a sample. The digging lasted quite a while as she wanted a particular node that she noticed during the echo. Taking a bit of tissue from the hard bit was next. I was told there would be a very loud “click” sound when the hollow needle cuts. Turns out, this click was louder than anything I could imagine, this giving me a scare that made me jump (not great when there is a needle sticking in you). Unfortunately the anesthetics weren’t done deep enough so after the jump-scare I was in excruciating pain. The tissue taken turned out not suitable for analyzing, but luckily the following two samples taken didn’t hurt as much and were good enough.

After the biopsy we had to wait an hour for a preliminary result of the sample and discussion of the mammogram.

Unfortunately the sample was too bloody to be conclusive at this time, and we would have to schedule a new appointment to get the full results. The mammogram didn’t give any information as there were too many glands messing up the image. The doctor wanted me to come in for an MRI to get a clear picture of what was going on in my breast. By some miraculous luck I was able to get the MRI scheduled that same afternoon, a couple of hours before my flight to the Kiev Major. The results would come in the week after, but I postponed the appointment to the Wednesday after the Kiev Major was complete so I could still work at the event.