When I returned to hospital yesterday, maybe around 7 pm, Nadine was asleep again. The hospital staff brought me a bed of my own which was put aside of hers. I sat there for hours, holding her hand for the rest of the evening and into the night. I switched the lights off about 10 pm but couldn’t find any sleep myself. Instead, I monitored her breathing which was heavy and turned into snoring sometimes.

When I finally manged to doze away, Nadine suddenly adressed me by name – obviously she was well aware that I was around the whole time. From 2 am on we were talking to each other for about an hour. Her talking was very slow and her tongue seemed to be a bit lame, but the things she said were mostly coherent. She was able to answer simple questions and stayed awake.

At some point, she mentioned to have a headache. The night nurse gave her a pain-relieving shot, but she continued to complain. Not about her headache anymore but about some obscure pain in general. She could never get clear which part of her body hurts, it was changing with the minute or couldn’t be spoken out at all. The night nurse and I suspect that she is so confued that she doesn’t feel these things correctly. The nurse, who has got experience with such kind of patients, said that her facial features didn’t suggest any pain. And I know that she has a tendency to react with moaning ‘Auaauaaua’ even to things which aren’t much physical at all. Being asked how she felt just a minute later, she often answered that she’s good…

At 6 am, when the morning shift took over, I was so tired that I had to leave and catch some sleep at home. I left with the confidence that she is arousable again and with the hope, that her MTX-therapy might be continued soon. By the way: her vital functions were never a problem throughout the whole treatment and they are still okay now.

On Monday morning Nadine had another breakdown from which she didn’t recover in the time she normally should. She was lying in bed, breathing heavily and was not adressable. A few hours ago, Annika, Nadine’s father and me had a serious talk with her doctor. He told us that she cannot be treated wit MTX as long as her state doesn’t become any better. They will keep her under watch, try to awake her once and then and make sure that she feels no pain. If she doesn’t wake up, she will be given all the time and care needed to die on D6 as peaceful as possible.

After this bad news the three of us were already somehow expecting, we went back to her room for a while. When Annika and her father had left, I stayed with her alone and talked to her for about half an our. This managed to wake her up: I was able to exchange a few words with her, although it seemed to be quite a task for her. I asked her if she wants me to stay with her in hospital and she said yes. So I went home and packed some things. As soon as I’m ready with this post, I will be on my way to an overnight stay in D6. If my presence is what it is needed and comforts her, it has to be arranged.

Please hope with me that we will get her awake permanently and into a state in which her MTX-therapy can be continued. And please hope that it will have positive effect on her. But be aware that this would be no long-term solution and just buy her an unknown amount of time. If that’s the best we can get, I will fight for this.

Not much has happened since my last post. Nadine was finally relocated to the palliative care on Monday and needs a lot of rest and sleep. Drinking became better but she still got problems with appetite and the taste of food. Nevertheless, she had her first appliance of MTX today.

When I tried to visit her after work, she was sound asleep. That’s why I stayed only for a couple of minutes. If you want to visit her, you can do so, but be aware of her current capacities – too many stimuli seem to wear her out pretty quick. And please avoid to force her into making decisions, she can’t handle this kind of pressure at all. When I left, I met her doctor on the corridor. He let me know that there were no complications with today’s injection.