Defying the Odds, yet Losing

Here I recount my battle with cancer,
from near-death experiences to moments of triumph.

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From

AlexTestria

28.07.24

11 mins read

Cancer Type »

Rhabdomyosarcoma

Location »

Prostate & Bladder

Survival Odds (General) »

<30% Adults in Stage IIIB

Terminal? »

Yes, again

When? »

2022 - now

Most Recent Update

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AlexTestria

18.08.24

2 mins read

❤️‍🩹 Seems like I'll live a while longer!

Hello, everyone
Like I said in the last post, every day is a roller coaster and has challenges on its own.
Right now it seems like the bleeding is getting a bit better every day and that my body can keep up with the blood loss.

I should now gain some more time, with the new medication I got specifically targeting my tumor.
There aren’t that many side effects, so I’ll just make the best out of the extra days I got!

Thanks for all those kind words I got when I was feeling so bad and it seemed like I was reaching the end of my life.
I’ll let you know if my health is getting worse again or keep on becoming better. ^^

I love my community so much, I love you

Cheers Alex

Outdated Updates

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AlexTestria

15.08.24

3 mins read

Uncertainty in the Face of Death And New Options

Hello, everyone
It was my wish to die at home and now I’m finally there.
Everyday is a fight on its own right now and I’m trying to make the best out of it. To create some beautiful and meaningful moments.

Uncertainty

As the title suggest we are not quite sure how I’ll die or exactly when. Today morning it looked like I had only a few days, because my kidneys were bleeding excessively. Now on the evening they are not bleeding anymore, instead my kidneys are failing and making me pain. So it really is a roller coaster of having days left, to weeks left. So much uncertainty!

New Options

My oncologist has given me a new experimental treatment. One that isn’t a chemotherapy nor immunotherapy.
Its a special very experimental inhibitor drug that blocks a very specific protein, that blocks the tumor from requesting new blood veins and hinders its growth.
This should slow the tumor or even reduce it in size, and if I’m lucky gain me some time.

How do I feel?

Some days are very hard for me and other feel easy and refresh my energy. I’m pretty much as ready to die as someone can be. I’m preparing for my death for a long time now. Yesterday I was in bed the entire day and today I walked around pretty much all day long.
My entire family is now by my side and are giving me strength. I’m as accompanied as well one can be.
I’m even working a bit on my art!

We had a professional photo shooting in the hospital park!

It was the biggest wish of my mother to have some nice pictures with me, because she has so few.
My fiancé was so kind to organize a photographer to make a photo shooting with me and my close ones in the hospital park <3

Outdated Updates

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AlexTestria

05.08.24

4 mins read

Cancer is back again, and I am very likely going to die

This time the tumor has spread to my small intestine, bones, back, etc. Parts that you cannot remove surgically.
Meaning I am Terminal again and there isn’t a real hope, except a real wonder.
I am already on extremely strong painkillers making my mind fogged all the time.

How make use of such little time?

Well, there is no right nor wrong way of how to use your last moments. To me, this means spending time with my new girlfriend, family, and friends and working a bit on Brickcraft. I know it is pointless working on a resource pack that I will never finish, but my work brings me joy and that’s the only reason I ever need to continue doing what I love. The only important thing is letting your family feel loved as much as possible.

My Mini-Life version

I think I played a full life in mini version. I got a wonderful girlfriend, had some great success in work (for my age), seen some other contries, met wonderful people around the globe and had a loving family. The only thing missing for a fullfilling life are own children and a marriage. Its okay that I don’t make it all. Maybe I just played life on Demo version. Whatever! I enjoyed every second of it!

How can we help you?

It would mean a world to me if this discord got a bit more active. Just talk with me, keep me busy and make me feel a little important. There is no nicer feeling of being cared for.
If you are a @YouTuber/Streamer or TikToker please make a video about Brickcraft and my disease.
Brickcraft is my life’s only real artwork and I want as much people to see it around the globe.
This would mean a world to me!

Outdated Updates

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AlexTestria

28.07.24

2 mins read

Cancer-Free: Celebrating a New Chapter in My Life

Hello everyone,

I have some deeply emotional and uplifting news to share with you today. After a series of recent MRI and CT scans, I received the most encouraging news: the tumor is gone—for now. This is a huge victory in my battle, filling my heart with immense gratitude and hope.

However, this journey hasn’t been without its challenges. My body has undergone significant changes, one of the most noticeable being how my stomach has sunken down to fill my empty pelvic floor. It’s a surreal and disconcerting physical change, a daily reminder of the trials I’ve faced. Managing my digestive system has also become a struggle, with significant difficulties in digestion and obstipation due to my stomas. The discomfort and frustration are real, but I choose not to let this darken my days. 🙂

Despite these hurdles, I’ve been diligently working to strengthen my body through regular muscle training. With only 70% of the blood volume of a typical person, every workout feels like a mountain to climb. It’s challenging, but I’m extremely happy to be able to work out again! I have something incredibly exciting to look forward to: my first vacation with my fiancé to the breathtaking Austrian Alps. The thought of this trip fills me with joy and anticipation. The Alps are my comfort place where I can switch off completely. It’s a real treat to afford this, but one I desperately need after these two years.

Thank you for being part of this journey with me. Your support means more than words can express, and it gives me the strength to face each day with hope and a sense of being cared for.

With all my heart,
AlexTestria