Got a hommage from my hair

So this week happened what you're 'waiting' for when you get chemo, the hair loss.

The unavoidable

The hair loss, I think it's one of the most confronting moments in this disease. You just can't avoid it. And from this point forward your disease is visible for the outside. They say it starts from day 17 after your first chemo, but day 14 was my day and it was going a little bit harder than expected. My hair was falling in large numbers and with long hair you're leaving a trail behind you. It was annoying, confronting and emotional. That morning I smashed my hairstyling tool in two pieces (best money spend ever) and took matters in own hands. I already ordered wigs (two, just for fun) so I took the phone to move the pick up forward, got the wigs and that evening we shaved it off. I was ready...it was an intense moment for me and my husband, seeing my bald head for the first time. What's under that hair? Is it bumpy, weird shaped, full of birthmarks? We tried to make some fun and luckly a normal head revealed itself. Looking in the mirror is really heavy, but after shedding a tear I know I had to move forward.

I was already prepared with the wigs, but I also looked into head wrap fashion. Not the flat chemo headscarves, but fashionable outfits of muslim woman. They now their head wraps, how to get volume and the turban styles. I don't have the same exotic middle eastern look, but ready to experience.

Got a homage

One little thing more I want to share. Weeks before the hair loss, even before chemo, my hair was amazing. Styling was not necessary. It was shining, lot of volume, zero hair loss (you always have some).

Thinking this might my own imagination, but then I got a lot of remarks from people. Like my hair was giving me a special performance, a final dance...

Doctors are humans, right?

Doctors are humans and humans make mistakes, right? But how much /in what extend can you accept it that mistakes are made when it concerns a case of life and death?

The first mistake made is that there was a lack of aftercare after removal of the tumor in my breast. Local hospitals shouldn't treat rare cancer diseases, even if there is consultation with a specialized hospital.

And even in the specialized hospital I have to be alert. The difficulty when having a disease that is so rare, is that doctors are in as much uncertainty as you are. Which makes everything more complicated and that is understandable. What I don't understand is the unwillingness to think out of the box and to be open for suggestions. And the "I know it all" attitude based on experiences with other diseases. I think my sister (my BFF head of research), spoke with more Phyllodes patients over the last 3 months than any oncologist in the world. Because, in their entire career, they don't see so much Phyllodes patients stepping in their office.

So we gather that information world wide, but we don't have a medical background so we're depending on the collaboration with my oncologist. My oncologist is intelligent and has a lot of experience with cancer, but it's the conservative patient-doctor relationship. The 'they tell, you do' kind of relationship. I'm looking more for a collaboration but I don't want to be framed as the troublemaker with all those questions/info with the risk of turning back on me.

So why not finding another oncologist? Well she is intelligent and working in one of the best hospital, so my gateway to a lot of treatments. Maybe I'm still able to change things, so not giving up (not yet) :-)

"Experience is as to intensity, and not as to duration"

In 'normal' life everyone recognizes moments of the daily rut and the search for an escape, whatever helps you to get out if your routine. From vacation to parachute jumping for the daredevils, wanting that boost of adrenaline.

Well, unwillingly, I found the way to really live in every moment. I have never felt more alive and kicking. It's like having an adrenaline rush with every breath, laughter and tear. It may seem contradictory to say that this is somehow beautiful to experience. It's intensity is also a bit exhausting, so this is not a recommendation ;-)