A long time ago, in a life far, far away... EPISODE I: The Phantom Menace

There was a time I didn´t know what lymphnodes are for. Or T-cells. I believe to remember that there was an episode of "Es war einmal das Leben" about blood where they were depicted. But that was it. (Who else is now humming along? "Spürst du es in diiiir, das schöne Leben, das Hoffnung bringt....?" :))
I was blissfully uneducated about all this stuff and getting ready to spent the time of my life on a cruise ship in the Caribbean, listening to metal. This was in January 2016, just around my 31 birthday. Here the story begins, a story I feel like telling now, just for completeness. Cause diagnosing PTCL is in itself a journey through hell.

So it was in the middle of winter and the high time for colds. Of course I also was down for a few days with a light fever, sneezing and coughing. But I was feeling good enough to go working so it wasn´t that bad (it never really is for us workaholics, is it? ;)). The cold went away, feeling bad though didn´t.

Night sweat? What night sweat?

I was often asked how I noticed that I had cancer or that I needed to go to hospital. Well the truth is...I didn´t. I was putting all symptoms I had away and telling myself they were leftovers from the cold. I had an explanation for everything. Short of breath? Well, I´m not exactly Sporty Spice so whatever. Sweating like a Snowman in summer? That´s surely from the damned radiators! This pain in the left shoulder? Ach, I just slept on the wrong side. Dry, persistent cough? That´s from the cold! So I used Voltaren and eucalyptus pills and nose spray and all the other home remedies I could think of. Jeez, I needed to get better again for the cruise! (In retrospective it´s kinda funny that I tried to beat cancer with eucalyptus pills and Voltaren. Take this PTCL! The almighty power of EUCALYPTUS! Have you ever seen a Koala with cancer? Noooooo, see! They all die of chlamydia.)

When the pain got worse and I sometimes barely could breathe I was kindly forced by my hubbie to see a doc. So we did an ECG and a lung-function test, both came out clean. My doc also said that it all was surely from the cold. So there was absolutely noooo reason why I shouldn´t be going on the Metal Cruise. :)

So I was off to Miami, feeling like shit but determined to desinfect my body with lots and lots of alcohol. Unfortunately it got worse. I was tired and exhausted a lot. I fell asleep during concerts (during both Insomnium shows! Insomnium my ass, I slept like a baby!) but I just said "Of course you fall asleep suddenly. You´re barely sleeping and mostly use liquids as nutrition!" Because I didn´t really want to eat. I had lost my appetite shortly before the cruise (and with it also about 20 pounds so I was all like "Yeaah!" ;)) and also there was this strange feeling on my left side, just beside the stomach...

I returned from Miami feeling even worse. I fell asleep at work (I thought it was jetlag!), I woke up completely wet from sweat, the cough got worse ("unproductive" it´s called. Hihi, like me.) and I wasn´t able to eat properly. I started googeling and thinking about possibilities. I was- again very gently- convinced that I should see an internist. He drew blood, did another ECG and sent me to do a X-ray from my lungs. He also noticed for the first time that I had fever- 39.5°C ("Did you know that?" Ermm... Noooo...). ECG and lung X-ray came back clean so I felt better inside. No lung cancer. Thank heaven. So it was back to work, feeling bad.

Some days later my Mom got me to finally call in sick at work and recover (don´t ask how long it took her to get me to stay at home!). I had just put the phone down when it was ringing again. The internist. "Your blood works are back. Could you please come in? Immediatly?" Gulp. That doesn´t sound too good. Phone back in my hand, calling my Mom.

I was sitting in front of this very nice man and he was talking about low hemoglobin and high LDH and CRP and I don´t know what else. From the moment I put the phone down at home the rest of this day is blurred. I remember him saying that he could just give me some antibiotics and send me home, waiting for things to get better. But he didn´t believe that it would work. So he handed me a red paper. Emergency referral to the next hospital. I stared at this thing in my hand, close to tears. What exactly was happening here? Where is my cold?? He said goodbye to me "Let´s hope it´s nothing serious." Oh, how he already knew what I was facing, I´m sure of it.

We packed a few things in a hurry ("Nahh, I´m sure two underpants are enough! I´m not gone long!") and went straight to hospital. My hubbie joined us in waiting in the ER. Anamnesis, another blood samples, urine test (good news of the day: IT`S NO CYSTITIS!!!!! Thank heavens! THAT would have been horrible!) and another X-ray of the lung (Guess what- still clean!). Hours and hours went by ("Take an example of your husband, he´s quite calm!" HE`S ASLEEP, GNAAARF!) and finally they found a bed for me. On geriatrics.

OH MY GOD what is this? I want to go home!

This is how it started. Oh, that innocent and ignorant me, lying in that hospital bed, trying to ignore the stenches, surrounded by sounds like from the Walking Dead (somewhere in the middle of the night someone started screaming from the top of his lungs "Help! Let me out! They´re killing me!" Ermm.... Gulp.), listening to Alestorm to cut it all out, imagening being on a ship again, somewhere on the Caribbean sea...

I was scared. But also calm. Cause to be honest... I knew all along.