I can’t make a bucket list. I do come up with things to do when I am dead; I want to swim across the ocean with the whales, I want to join a flock of migrating birds and fly to Africa. And I want to do a lot of guardian angelling. I wonder if I need to go on a course to do that?
In the summer of 2011 I was diagnosed with cancer, while working in Romania for the Dutch charity organisation Care Foundation. What was supposed to have been a three month exploration was cut short to a mere three weeks. On my return to Holland all hell broke loose. What I believed would be a treatable cancer light version of events turned into a soul searching saga beyond my worst expectations.
Toata Ziua Buna Ziua, all day a good day, is my self-published memoir and the, sometimes brutally, honest account of the depths of my despair and the heights of my hopes. Me sticking around kind of spoils the ending… I know.
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9th September 2011, UMC Utrecht
For a split second I am seriously considering not going through with this. I want to say something but I am not sure how to phrase it. Judging from the swift efficiency of the nurse who is organizing all the pre op prep, my anti clotting shot and stockings, she has no idea how I am feeling. Everything on schedule. But I don’t want to do this.
It is the morning of my second surgery and I am not feeling particularly brave. Where the previous operation for the removal of my lymph nodes seemed a hopeful venture, one step closer to healing and a solid 95-100 per cent survival rate, this now feels like useless destruction. What is the fucking point of any of this? Just let me be. Just let me die. At nature’s pace. Without any added inflicted pain, without false hope, without any empty pretence that any of this is worth it.
Ready? The nurse asks, but it sounds like a rhetoric question. Will I ever be ready to have my uterus removed? When I had just made the leap, being willing to go through a grueling chemo regime in order to safe it? I also even considered the opposite. The no action course of action. Going down the alternative route of hardcore meditation and anti cancer diets.
17 PEComa mets wiped it all off the table. And there was no room for renegotiation. All bets are off now. Professor Bow made the conservative estimation of the odds being around 50/50. Ever since the first diagnosis was made in 1996 half of the patients who get PEComa have died. And then it also depends on what type you have. My benign little bugger is so widespread I dread to think what havoc a malignant one would wreak.
Mets cut your chances by another half. 25 per cent. Online I have not found a single case of a PEComa survivor where the cancer has metastasized. And I found some very different statistics than those the Professor referred to. Most patients are gone within a year, year and a half. The medication used to slow it down, something called an MTor inhibitor that was originally developed to prevent organ transplant rejection, proves effective in just 1 in 4 patients. And then only temporary at that.
The nurse rubs my arm in order to give me the shot. Stop. I whisper. Stop, I add again a little louder now. I am not doing this. Please call ahead and tell them that I have changed my mind.
The nurse sits down next to my bed. Ok. You can do that, you know, if you want. It is your life, your body, your decision. Let’s talk about this. All of a sudden the schedule doesn’t seem to matter as much anymore. She looks at me intently. Why do you feel this surgery is not a good idea?
Because there is no point. What I mean to say is that I am dying either way. Sometimes I wish I had stayed on in Romania and just let it all go. Ride it out until the end. Ella said: you will come back. What doesn’t kill you, will make you stronger. But as opposed to what I said to the nurse the morning after my first surgery, this will kill me.
Ok. If you don’t have the surgery you know for sure that you will die. When you do have the surgery there are no guarantees. But there might be a chance. The professor is an excellent surgeon. His motto is…… I didn’t become a doctor to let people die….
How much of this is up to him? I think about what he emailed me immediately after the diagnosis of PEComa truly hit me. You don’t have to believe in miracles to have faith in the strength of your own body.
I haven’t eaten in weeks, because of the infection, the antibiotic drips, the sleepless nights, the constant pain. I am exhausted. I have run out of faith.
I lie back and the silent tears streaming down my face soak into my pillow. Above me dangles the postcard Jorine sent me from Tarnaveni. The kids and us, we all miss you.
The nurse follows my glance upwards.
If you don’t do it for yourself, she says. Do it for them.
I cry all the way to the operating theatre. The assistan doctor is there too. Tell the professor it doesn’t really matter if he cuts left to right or up down. Whatever is best for the surgery. I close my eyes, breathe and start to count backwards.