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UKLady's picture
Posts: 85
Joined: Jan 2011

Hi everyone,

Just checking in with a catch up on our hospice at home situation. Steve had major seizures late afternoon and evening yesterday, he was unconscious for twenty minutes or so and had a rattle. I thought it was *the rattle*- you know the one-so that was a bad bad time. Irony is -we have been having some great quality time these last couple of weeks and he has been walking short distances and getting stronger each day.

He had just chided me over making him use the wheelchair for looking at work that is being done on the house. Odd the things we think- I thought after -did I push the wheelchair too hard over the door threshold to start the seizures off? Yes I know its not logical or I really didn't but somehow the question keeps popping into my head! I should know better really- first rule of cancer support therapy is don't do the woulda coulda shoulda thinking...somehow though...it still pops through.

Hospice seem to have him in some sort of holding pattern til Monday when usual doctor and nurse team on duty, as Steve managed to start this on a Friday -tranquilizers broken out of the *comfort pack* is all they have come up with so far. Is it me- or is this usual? I would have thought a change of meds could be achieved over a weekend?
For those just joined Steve is stage IV NSCLC with 7 brain mets.

Kind thoughts to you all and Happy Mothers Day- as a Brit -I celebrated Mothering Sunday a month before Easter and is a little different than here in the USA.

mswijiknyc's picture
Posts: 421
Joined: Oct 2010

Sometimes you have to break into the comfort pack when there is a breakthrough issue like pain or severe anxiety or breathing troubles. The on-call nurse told me a couple times to get into it when there was no other option or Patrick's meds were unavailable (between deliveries, on a weekend, etc.)

Patrick also had the wonderful ability to have major issues on a weekend or at night. It's not just you. From what was explained to me, night time can be scary. At night the alone feeling is magnified, whether there is a room full of people or not. Something about the dark I guess.

Because Patrick had an inoperable tumor at the base of his skull I imagine he had mets to the brain too. He had a few seizures, some of them scared the daylights out of me. Nothing was the same way twice when they happened so I didn't look too deeply for rhyme or reason. I just knew they happened. Blackouts also happened with regularity, so be careful of that too.

Take each day as it comes. You'll know when the time comes. Don't ask me how, but you will.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Sorry to hear that you had to experience the fear and anxiety with the seizures and his breathing! I am glad that hospice is there for you. Hopefully, the new meds may prevent or ease Steve's symptoms.

How wonderful that you both have had some beautiful times together, lately. Take care, dear one.

I so feel what April said, " You'll know when the time comes". I did, and can't tell you how I knew, just did.



karenbeth's picture
Posts: 194
Joined: Sep 2010

Sorry to hear about the seizures--are you giving him Ativan from the comfort pack? That helped prevent Frank's seizures after he could no longer swallow his regular seizure meds.
Hospice came through for us in a major way one weekend when Frank had changes going on. But things do move much more slowly.
Here's hoping you have more good quality time ahead...my thoughts will be with you.


Posts: 1849
Joined: Aug 2010

I have no words of wisdom for you but know that you are and Steve are my prayers.


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