MINUSCH AFONSO: FIGHTER, WARRIOR, BREAST CANCER SURVIVOR

**_{Minusch Afonso by © Max Sonnenschein}**

_{Imagine you want to spend a nice day by the lake with a friend, enjoying some quality time, and this day later turns out to be fateful. This is what happened to}_{Minusch Afonso in 2021. Minusch Afonso is a journalist, moderator, and host in Bavaria and originally from Angola. I meet Minusch Afonso in April at my apartment in Munich to talk about that fateful day in her life. Even before the interview, I knew this conversation would be special. Not only because of the topic, but because Minusch is one of those people you find immediately likable. Here is the story of a breast cancer survivor, which aims to provide insight into what many cancer patients go through and inspire people not to give up.} _{Thank you Minusch for your time, courage and openness!}

1. Tell me about this fateful day? What kind of day was it?

_{Minusch: I had some discomfort in my lower abdomen that day, so I went to see a gynecologist. I was examined, prescribed medication, and everything seemed fine. I then went to the Isar River with my friend for some food and later went home. At home, I ordered some food, and when the delivery guy arrived, I opened the door. For no apparent reason, I pointed my index finger towards my breast and touched it. Just like that. It made no sense. The spot was not itchy or anything, but I just touched that spot. And then I felt a small lump and thought, “Huh, what is that?” I googled it, and usually, Google brings up really scary things, but in this case, it did not.}_{Then, I watched a video on YouTube about how to properly examine breasts and recognize signs of breast cancer. None of the symptoms described in the video matched what I was experiencing. Sometimes, it mentioned discharge from the nipple or skin that looks like an orange peel, but I did not have any of that. So, I thought, okay, maybe it is nothing. On the other hand, I was wondering if I should go to the gynecologist again the next day, considering I had already been there. Then, I remembered I had a doctor’s appointment in Saarbrücken in two weeks and decided to bring it up then.}

@abylovesblogging: Minusch went to her see her doctor and told her about her concerns and the lump she had discovered.

_{Minusch: I attended the appointment in Saarbrücken and told the doctor that I had felt something in my breast. She assured me it was probably nothing serious but examined the area. Having worked in a breast cancer center for many years, she was quite confident it was not anything to worry about. However, to put my mind at ease, she decided to investigate further. I had another appointment where they numbed my breast and used a long instrument to take samples from the tumor. Afterwards, I was allowed to go home. I felt conflicted and another week passed before I was supposed to call for the results.}

@abylovesblogging: As if the situation was not difficult enough, Minusch had to wait for the test results. In the interview, she told me that the waiting was the worst part for her. The next day, her life changed from one day to the next.

_{Minusch: So, I called the next day, and they told me the result was in, and the doctor would call me later – that is when I knew something was wrong. I waited for 1.5 hours for her to call back. Those 1.5 hours were terrible because I had no idea what was going on. When the doctor called, she told me that, unfortunately, it was not as she initially thought and that the diagnosis was malignant. At that moment, everything stopped for me – I was in shock, genuinely shocked. I thought I was going to die. That was my first thought because there had never been any cancer cases in my family. Not even in my circle of friends. The only things I knew about cancer were from TV.}

2. What did you do when you realised you had breast cancer?

_{Minusch: I called my mom and talked to friends who tried to calm me down. My mom drove from Freiburg to be with me. I really appreciated how calm she was because she usually is not that calm. Her calmness helped me stay calm, and we got through that time together. That evening, my mom and I prayed. Eventually, I went to see my gynecologist with her, and the journey felt like it took forever. In the clinic, we had to wait about 45 minutes, and the assistants looked at me with such pity because I kept going to the bathroom due to my nerves. Finally, a doctor came and said that the gynecologist had asked him to talk to me. [Minusch never saw this gynecologist again, despite repeatedly trying to reach her.] The doctor only asked me what questions I had for him.}

I had the feeling as if my soul is leaving my body.
Minusch Afonso

_{@abylovesblogging: Once it was certain that Minusch had breast cancer, they went to the doctor and underwent examinations. She was referred to the breast centre and had to undergo various examinations such as ultrasounds, blood tests and mammograms.}

3. What could have gone better on the way to your chemotherapy?

_{Minusch: Communication during this phase was not always clear. The thing which was so unfortunate about the doctors was that they never spoke plainly. I did not just have to deal with one doctor but with different ones and each of them said different things. That was a bit difficult.}

_{@abylovesblogging: Although the doctors almost always assured Minusch that she did not need chemotherapy, after the surgery, it was recommended by various experts that she undergo chemotherapy.}

_{Minusch: I took all my documents to this doctor and asked him for help. He took his time—two hours, to be exact. He explained everything to me, step by step. He also told me that I had a good chance of recovery because the tumor had not spread to the lymph nodes. Given that I got cancer at such a young age, he advised me to have a genetic test to understand the origin of the cancer. Additionally, he explained the step of mastectomy and recommended that I undergo chemotherapy anyway because I am so young. I could write to this doctor on WhatsApp if I had any questions, and that is still the case. Even though it took some time for me to trust him, I must say he did a good job.}

@abylovesblogging: With her thoughts focussed on the forthcoming chemotherapy, Minusch was unfortunately given more bad news…

_Minusch:_{One day before the chemo, I received the news that I do suffer from a rare genetic defect. My first chemo started on December 20, 2021. Normally, the chemo should last about four months, but since I did not tolerate the chemo well (poor blood values, feeling of fullness, fatigue, nausea, fatigue, and vomiting), it ended up being eight months.}

I did not expect that at all
Minusch Afonso

4. Who were you able to count on in particular during this time?

_{Minusch: My family was there for me and helped me as much as they could. My friends too, of course. Some of them called me via Facetime, spoke to me on the phone and tried to build me up. That was really nice to see.}

5. Were you also able to draw positive things from your illness?

_{Minusch: Yes, very many… I had a lot of time to reflect on myself. I would say that I used to be a people pleaser and was always concerned about how others were feeling. But the illness showed me that there is only one Minusch, and there is no second, so I need to take care of myself. That is why I also learned to set boundaries, say no, and stand up for myself. If I notice something is not good for me, I now take immediate action. I was not like that before. I used to beat around the bush, procrastinate, and make excuses for people. I do not do that anymore. I do not have time to get upset because life is short. My friendships have also become closer, and I have cut some people out of my life because some friendships were toxic. Not that you would define these friendships as toxic at first glance. They were the kind of friendships that drain your energy or involve people who constantly complain. I was not aware before that such things or people were dragging me down. Cutting these people out of my life has given me so much balance. I can hardly believe it, but I have never felt so balanced in my life. Those unconscious stress factors are no longer there.}

6. How has the illness changed your relationship with God?

_{Minusch: I have come much closer to God. I remember when I had trouble sleeping at the beginning, I called the crisis hotline, and the staff there prayed with me over the phone, which I found very comforting. They also sent me a small book about the church and Jesus. During that time, I read a lot from the Bible, even passages I did not know before… For example, I was already familiar with Psalm 120, but during that period, I read it very often because it fit my situation. I also frequently spoke with the pastoral counselor…The day I found out that I would need chemotherapy, I was angry. But I wanted to wait and see what would happen…I realized that God is always there and looking out for me. Even if it was a terrible situation, He is there the entire time. He has not left me alone. I thought about other situations in my life. Situations that were incredibly bad, where I was always supported. I was sad and angry, but the solution was always just around the corner.}

7. If you had 3 wishes, what would you wish for?

_Minusch_:_{I would wish for better we}_{ather, good health and to have a beautiful and fulfilling life.}

8. What tips do you have for people who are in the same or a similar situation as you were back then?

_{Minusch: I would also advise against googling or following certain Instagram profiles, as everyone has their own individual diagnosis. Secondly, request a consultation with doctors. And lastly, accept help. Admitting that you are ill. People often associate cancer patients with the verb ‘strong’ and I have the feeling that patients try to fulfil this. But you are ill and have cancer – that is not a cough. You can be ill and do so with a clear conscience. For example, I felt guilty about my work colleagues because I thought to myself: ‘Shit, now I cannot go to work’, but when you are ill, that is the way it is. You are allowed to be sick and recover and take the time you need and get fit. I stressed myself out to get fit again and put myself under pressure.}

_{Find Minusch Afonso on Instagram: https://www.instagram.com/minusch_afonso/}

_{Give abylovesblogging a Like and a Follow on Instrgram: https://www.instagram.com/abylovesblogging/}

_{Support DKMS Germany and become a stem cell donor (Germany): https://www.dkms.de/}

_{Support DKMS USA and become a stem cell donor (US):}_{https://www.dkms.or}g/

_{Study on Breast cancer in Germany: https://pubmed.ncbi.nlm.nih.gov/38702333/}

Schmetterlingclara – “Life has so much to offer if you let yourself get involved”

You are very active on Instagram and take your followers into your everyday life, how did you come to this?
- Clara: As a teenager, I actually only consumed Instagram myself and I came across a few accounts where people affected by the disease talked about their illnesses. So I thought I could do the same and founded my account @schmetterlingclara in 2018. At first, I did not dare to speak directly to the camera or really say anything private about myself. It was not until spring 2021 that I jumped over my own shadow and posted a personal story. And then the whole thing started rolling. I was allowed to introduce myself and my story on various other Instagram accounts and as a result, more and more people became aware of me. Then one day, when I posted (in my eyes totally embarrassing) dance reel which went viral, the number of my subscribers skyrocketed. Since then, new followers have been coming in all the time. I post what I think is important so that more people learn about my condition and so that they can better understand those who are affected by my condition, but also those affected by other conditions/disabilities, and see life from a different perspective. But I also like to respond to the wishes of my followers and answer questions, because as an outsider you often do not know all things.
You also do educational work on Instagram about your disease (Epidermolysis Bullosa), how important is that to you?
- Clara: This has become very important to me. People often stare at me on the street just because I “look different”. People whisper behind my back and make wild assumptions about what I might have. Many also keep their distance and pull their children away because they think I am contagious. And still others approach me and want to sell me their “healing water” or invite me to their sect because they believe that God and/or Jesus could heal me. But I also have to explain myself and my illness to doctors and carers again and again, because even in the medical field, most people do not know much about my illness. And that is exactly what I want to change. I would like to educate people about EB (Epidermolysis Bullosa), so that we sufferers are no longer constantly stared at and we do not have to explain ourselves over and over again. But I also want to campaign for issues such as disability in general, because there is still so much need for education and action there too. Because we can only achieve something if we are loud together. And I am already very well known within our “EB community” and I am now often recognised on the street.
What positive or negative experiences have you had on social media?
- Clara: I have to say that I am very lucky in this area. I get 98% positive and kind comments and messages. But of course there are always the odd stupid comments. Partly out of ignorance, because many people come across a reel or a photo of me while browsing and have no idea what I have because they (like most people) have never heard of EB. But of course there are always stupid comments from people who do not want to or cannot accept my opinion and my point of view. It is not about “being right” or anything like that. One of the most popular topics is the word “disability”. Many other influencers and I hate it when people try to use the word “disabled” to describe us […]. I was born with this disease, I do not know any other way, but for most people it is hard to imagine. I am really grateful to have such a great community that supports me, that rejoices with me when nice things happen and also listens to me and understands when I am not feeling well. Many people are always worried when I do not post for a day. I could not have a better community because they are the ones who motivate me to keep going every day.
What is your support on days when you are not feeling good?
- Clara: My family, my friends and the prospect of upcoming wonderful events. My family and friends are always there for me and support me as much as they can. Especially with my friend, who also has EB, I can have a good moan to her at any time and about anything because she understands me, as she often goes through the same things as I do. But my “healthy” friends are also always there for me. What helps me varies and also depends on the situation. Sometimes it helps me to go out, do something and distract myself. On other days, I do not want to see or hear anyone and then I just want to be alone and have some peace and quiet time. And sometimes it also helps me to talk about it. With my parents and/or with my friends. I often visualise my thoughts and feelings about on Instagram. Just as it comes into my head and then I get a lot of love messages that build me up again.
How would you like society to treat people with your or similar illnesses?
- Clara: Firstly, I would like people to approach me with genuine interest and ask me directly if they have any questions. […] I wish to be treated as a fully-fledged person, because unfortunately many people still believe that you are also mentally limited if you are in a wheelchair and travelling with a companion. Of course, there are situations in which you have to be considerate of people with disabilities and/or chronic illnesses, but otherwise we want to be treated as normal as everyone else […].
How do you (always) manage to deal positively with your to deal with your illness in a positive way and draw strength from it?
- Clara: Even though it may seem like it, but I am not always positive. There are a lot of days when I just think everything is rubbish. But it is true that I have a positive attitude to life from the ground up because I simply love life. I have lovely people around me who give me strength and I always try to do lots of things. So, that I always have something to look forward to. I have already achieved and experienced so much in my life, both positive and negative, and I just want to experience so much more, because life has so much to offer if you let yourself get involved.
In your opinion, what are the disadvantages of social media?
- Clara: That the inhibition threshold is so low. You can simply create a profile with a false name and no picture and then post lots of nasty comments. Or that many people do not really think about how their message might be received by the other person, but simply type away quickly. Most of such people would not dare to say such mean things in person. I think, at least they would probably more carefully before saying or writing something.
On Instagram you do every now and then Q&A sessions. What is the strangest question you have been asked?
Clara: To be honest, I do not even know anymore, but many people always ask whether it is even possible for me to go to the toilet normally or whether I can have a relationship with my illness. These questions somehow seem to have a magical attraction. But I now simply ignore these and other private questions.
What advice would you give to people who suffer from this or similar illness? How do you manage stay positive and notb to desperate?
- Clara: I know it is hard, but you have to learn to accept it, live with it and accept yourself as ‘you are’. Because you cannot change it. You should just try to make the best of it. Make the most of every good day and do as much as you can, have fun but also just do everyday things like any other “normal” person. School, work, studies, household chores etc. give you a regular, relatively normal daily routine. Because this also gives you a meaningful task. Otherwise, just LIVE life and enjoy it.
Unfortunately, there is still no cure for EB. Do you (still) hope that this will change at some point? And how frustrating is it to live with this fact?
- Clara: I do not know any different. I have had the disease since my birth and I have accepted that there will be no cure, at least for me. I do believe that there will be cure at some point, but I think for newborns where the disease is not yet so advanced. However, research is still progressing and there are more and more ways to alleviate the symptoms and comorbidity such as skin cancer. As a result, life expectancy continues to increase and that is something that gives me hope.
You are not just a blogger on social media, you are also creative. How did you start painting or drawing?
Clara: I used to love drawing as a child, but then I did not really get round to it when I was a teenager due to stress at school and other hobbies. During the first lockdown I started drawing again and somehow it became more and more and some of my followers said that I could also sell my stuff. Somehow it turned out that today I mainly create handmade and digitally designed cards for every occasion (Christmas, birthday, Easter etc.) and sometimes sell them too.
What is your personal and most fervent wish?
Clara: I wish to get an assistance dog. Unfortunately, that is not possible at the moment for a number of (private) reasons.
If you had 3 wishes, what would you wish for?
- Clara: 1. Healing, of course 2. An assistance dog and the opportunity to travel more easily and frequently.

Dear Clara,

Thank you so much for being so honest and open in our interview. It was a pleasure to get to know you and to speak with you about a very important topic. I hope you enjoyed the interview as much as I did. Thank you for your time and your awareness work on social media. Personally, I wish you all the best and that you stay as positive as you are! Best, Aby

@For all visitors of my blog, you can find Clara on Instagram by clicking the link below!

https://www.instagram.com/schmetterlingclara /

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