Sleeping and stuff

Aug 21, 2009 10:42

 I'm gradually getting my sleeping under control. I've been having terrible trouble with it, no problem falling asleep, but waking 4 hours later and not going back to sleep.

I've downloaded some meditations onto my iphone, and listen to them when I wake. It's working a treat - giving me something to focus on other than my swirling random thoughts. Oddly, if I wake up a second time, I don't need to listen to it, I merely replay it in my head a little. I'm also ensuring that I'm only in bed for sleep, no reading there or eating or laptop or anything. In the past that hasn't ever been a problem for me, but right now I need to do the full "sleep hygiene" thing to get myself back on track.

Two nights ago I got a full 6.5 hours, with a 20 min meditation halfway. I woke feeling far less fatigued, and managed to do quite a bit more with my day. So clearly, the not sleeping thing has been a major factor in my fatigue, which is excellent, because it can be controlled and managed. I will still have fatigue, from the actual cancer, but nowhere near as much.

My mood was way better as well. Sleep: good.

In the morning we headed over to the hospital for a followup with the radiologist, Dr P. She asked about my bone and back pain, and I reported that it was so much better that I realised I must have had symptoms for years. I can stand easily, I can turn over in bed easily, I get on and off the massage table without thinking about it, which i haven't for a few years now. I still have muscular pains in the ribcage and lower back, but way less.

Any new pains? she asked.
No, just headaches. Which are probably from tension. 
J asked her if the skull tumours I have can go into my brain, and she said that almost never happens. Something about bone cancer from breast cancer makes it like bone, and it doesn't tend to go that way. You can get brain cancer mets, but not simply because it's in the skull.

I also asked her to look up how many liver mets I have. Dr D didn't know, and he said it didn't matter to him because it makes no difference to my treatment. I thought that was a bit odd. It does make a difference to my prognosis. More than 5 gives you a lot less time, less than five is better.

Julian explained to Dr P that we were trying to gauge how much healthy time I'm going to have, eg should we go to Egypt in November.

Her answer to the liver mets question is "probably" 4. Probably, because the best count is done if they're going to operate and they do a detailed scan of the liver, which I haven't had. All I had was the CT and PET scans, which may have missed some. There are three really small ones and one that's 4cm.  She said that if I'm feeling well in August and September, then I'm likely to feel well in October November, and I should plan to be going to Egypt.

That's good news, I guess.. less than 5 mets gives you a longer prognosis. But probably there are more than 4.. the detailed scan would be bound to find a little more. It seems I am right on the average for things. I haven't responded to the Femara treatment, but neither have I progressed. ("Respond" means the tumours shrink; "progressed" means they grow. "No progression" is still good though).

She finished by saying: you should definitely go to the pyramids.  However, I will wait to book anything until October, because cancellation fees are horrifically expensive.

Dr D gave me a report for the insurance company. It says "Never will be fit to return to work".

"Patient has advanced metastatic cancer which will be the cause of her death in the not too distant future. She has extensive liver involvement, life expectancy most likely less than 12 months."

Ow. Having this on the form is good because it means I can get access to my full Total and Permanent Disablement benefit now, which will make a big difference to the ease of travel and so forth. But it was freaky to see that written down.

After that, I went off to meet an old work friend for lunch. We sat at a cafe outdoors and nattered, while J went to do a few errands. Normally I would be feeling shattered by then but to my surprise I felt okay, so I picked up J and we went clothes shopping.

And still, I wasn't feeling too shattered. Sleep! Yay!

Tonight, the three of us are going together to see our counsellor Phil. Sue has never gone to counselling ever in her life, so it should be interesting for her. I'm impressed that she's willing to go, but then I guess she's seen how much progress we're making through this minefield of emotion we're stalking through, and that Phil has been a big part of that progress. It's harder for her than Julian and me, because she doesn't live with us, and so some of the processing that he and I can do is done without her there.

Phil has suggested an answer to my problem of existential angst.. as in, "what do I do with myself all day". He thinks that my supporters should come up with delights for me to enjoy, rather than having the burden of thinking of things on me. I'm usually the person who comes up with stuff and organises it, and he said I should resign that role. Julian immediately put that into practice, by rounding up a bunch of friends and inviting them to think of one thing a month for me.

They've already begun coming up with ideas. This Sunday one friend is going to bring over a playstation so we can play shootem up games. Another friend is going to organise a picnic in the park, catered, with musicians!

All very cool. He also advised me to think of each week as finite, to avoid worrying about the future too much. "If you were able to go to the Office of Departures on Sunday night and just check out, no fuss no drama.. what would you do with THIS week?"

It's a great question, and it focuses my mind more on the now. 

sleep, cancer

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