And my body's weak,
I feel my heart giving up on me,
I'm worried it might just be
My body's weak,
feel my lungs giving up on me
I'm worried it might just be
something my soul needs

I cannot begin to explain how much this song speaks to me.

(Not the video in particular, but the music. The words. I get caught up on words.)

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"A love like that was a serious illness, an illness from which you never entirely recover."
- Bukowski

I wish we could be eating chocolate eggs together today.

New blogpost over at my blog.

Tags:   mamiya C33 6x6 medium format film analog

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My grandmother also lost her husband (my mother's father) at age 29.
She knows. She thinks about me. She says 'Keep going. Think about me. I'm tough too.'

People used to say we looked like each other. But it's been a long time since they said it last.
And I'm not sure if it's even true.

I always wondered where she got her strength back then.

And I still do.

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Yesterday I buried the love of my life. My best friend, my fiancé, my soulmate, my future.

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I never imagined I'd be writing this to you today. The past year feels like a dream/ nightmare I want to wake up from and find myself in bed next to Christophe, healthy and well and smiling back at me.

More than a year ago we found out Christophe had Hodgkin's Disease, a sort of cancer (lymphoma). But the doctor told us it was good news. 97% of people with Hodgkin's survive. All the other options of what it could have been, would have been worse.

The first series of chemo was promising. He received BEACOPP therapy and the PET-scan was supposed to test negative for cancer after the fourth cycle of chemo. It was negative after only two cycles. We were happy and sure everything was going to be alright. We just had to keep at it.

In June they told us the cancer was back. He was also diagnosed with Guillain-Barré, which made him loose strenght in his legs at first, later also in his arms and hands. Another chemo (ICE) was started. It was a lot harder than the BEACOPP. And it didn't help.

The next step was to try another chemo. GVD. It's mostly used in the US, not so much in Belgium but what I read about it, sounded hopeful. And it worked. A little bit. Enough. Enough for Christophe to get a stem cell transplant. This was going to fix everything for sure. He was in the hospital for over a month and when he got back he had gotten so thin, so tired, so emotional, so broken. He was so happy to be home again. But he had lost most of his strenght and relied on me to get him in and out of his wheelchair, to move him, to be able to eat, to wash him, to pretty much do anything at all. But we were together and hopeful.

The transplant didn't help. There were a lot of tests to find out whether or not the doctors could try radiotherapy. It was a relief to hear it was possible. Hodgkin's is very sensitive to radiation so Christophe's cancer would quickly get smaller.

It didn't. The second day of radiation Christophe got a fever and had to stay in the hospital. The fever got worse and worse, to the point they couldn't control it anymore. He was shivering from fever a lot, not being able to sleep for weeks. At a certain moment they finally did something radical and the fever went down. A lot. Almost to the point of hypothermia. But Christophe could finally get some sleep and we were happy for that.

Christophe was happy for it at first but that didn't last. He was sleeping so much he didn't know whether it was day or night and he would wait for people to come wash him and get angry when you told him they had already done that today. He started to say he didn't feel like himself anymore. Things were happening to him and he couldn't remember them. He said he was broken.

Meanwhile we were down to our very last option of treatment. A new medicine with good results against Hodgkin's, but it was neurotoxic and never used or tested on anyone with Guillain-Barré. The doctors didn't know what could happen to Christophe. He could get immense pain in his limbs. His Guillain-Barré could get even worse (he was already pretty much paralysed from the neck down) to paralysing his lungs. But Christophe wanted to try everything and I was so grateful for that. He could have called quits much sooner, but he wanted to live and he wanted our future together.

New Year's Eve I got a phone call from the hospital. If I could come over because Christophe wasn't doing so well. As by miracle I found a cab to drive me to the hospital, while the fireworks went off aside the empty high way I was on. I arrived at the hospital a little after midnight, only to hear that Christophe would probably die that night.

He didn't. He was still fighting. A week later, he was actually doing better. A miracle. Something worked.

Now Christophe's body would only have to hold on long enough to get the medicine again. He was getting stronger. He was getting better. He would be fine. Finally.

But the day he was supposed to get the medicine his doctor arrived. He said Christophe's body had gotten so weak, it would be inhuman to put him through another toxic treatment. The only reason to have him go through that, would be us not accepting the situation. My heart dropped.

Christophe decided to call it. Better to spend his last weeks/ months with us feeling better than to suddenly get sicker again and to die without having time with us.

Christophe and I moved to the palliative care unit of the hospital. I got a bed and we pushed our beds together. I was going to be with him every minute. They gave him morphine and extra painkillers when necessary. I cooked for him so he didn't have to eat the hospital food he always had to eat. He was also allowed to eat the things he couldn't eat for over a year (chemo requires a certain diet). We were together and we laughed and talked and watched photos. Christophe was happy. He said he made the right decision. He was doing so well I almost started dreaming of a miracle.

But then suddenly things got worse, he started sleeping most of the time. The last day he couldn't even keep himself awake to drink or say anything. The nurses and doctors were looking at me with a look that told me everything. It wouldn't be long.

That night I was woken up by the night nurse. He told me Christophe was breathing like people breathe at the end of their life. I called his parents and held Christophe close, stroking him, giving him kisses, telling him I loved him and I was going to miss him so much. Saying his parents were on their way, he just had to hold on a little longer.

He held on another hour. Then suddenly his heavy breathing stopped. I thought it was over when he started breathing again. Very quietly, slowly. Then it stopped. For good.

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