I feel my body is failing me, and it doesn't do what I want it to do anymore........
That's Deb's title and first line, as she dictated to me her next blog post, but she then went into mumbled stories, that I can't distinguish, so I'm just going to tell everyone what is happening now, as I know that's what is wanted.
This is Caela writing on behalf of Debs now, so there may be a shift in grammatical and literary preciseness,which I am sure she would be correcting if she could, before this is published.
So I am posting for Deebs because now she is finding it too strenuous to do so herself. Since she last posted on the 18th, which seems a lot longer ago than 13 days, Deb is on oxygon all the time, as she has been suffering with more and more panic attacks and not being able to find her breath. She has been in hospital more than out of it, but that does give her reassurance, and she definately seems less anxious here.
The reason for the lack of breath, more tumours on the brain, the new ones in her neck, the low platelets, and HB levels, and the increase of pain, is the news we were beginning to suspect. The immunotherapy has not been effective for Deb. This was discovered on Tuesday. There had been talk last weekend of Deb being admitted onto a new trial in Amsterdam, with the suspicion that the immuno might not be doing it's job, but now it is decided that won't happen either.
Debs is just too weak after all this treatment, and not strong enough for more. Her body is frail and exhausted, and she wants it to stop (her words). The Drs feel her decline is rapid, and they want to keep her as comfortable and pain free as is possible. The feeling is that there is just a short time left now.
Today the Drs have given her a new medicine to make her less anxious, and her breathing easier, but with that also comes less time awake and alert. This medicine will also be increased to act as a sedative as time goes on. She is scheduled to move to a hospice here in Utrecht on Monday. Ed and I have been there this afternoon, to see it, and it is serene and calm. There are just 8 guests, all rooms on the garden level, with doors that will open for the beds to go outside if desired. We can take in Deebs stuff (photos, bed covers, mementos, etc) to make her feel more at home, and it's a good halfway option. Part home and familiar, but with 24hr care of a hospital. There is also room for an extra bed in her room, and a visitors room upstairs for family.
I will try to update this blog to keep you informed. I'm so proud of my brave, brave little sister, and know she has wonderful friends, colleagues, and her Dutch network and family are amazing. She is occasionally looking at messgaes, and I or Ed read them to her also. For tonight she is sleeping, relatively still and calm.