Awake

United dropped off my bag today, so I finally got to brush my teeth. But of course I’d forgotten about the power diff, and unlike anything worth anything these days, my electric toothbrush charger can’t step down the current, so I need to get a new toothbrush tomorrow. Oh well.

Today was a very mixed bag. Mum was better than yesterday, continuing a positive trend, and we had a lovely time sitting in the Costa Coffee franchise on the ground floor of St. James’ Gledhow Wing (it doesn’t smell like a hospital, earning it a huge thumbs up from me). I showed her photos from Rachel’s flickr, we talked about things that had been going on when the pictures had been taken.

She even remembered that she’d been for her follow-up full body CT scan in the morning. What she didn’t remember though, and what I found out from the head nurse person shortly before I left for the afternoon, was that the consultant doctor had been round earlier and talked to her in some detail about her disease, and about what she might do after she’s discharged.

So it seems that the positive progress we’ve been seeing is due to the effects of the high dose of steroids she’s currently taking. What this reveals (and I am unclear about why, but we will find out more) is that her symptoms are being caused by the cancer and not the bleed as we had hoped. This is bad news also because the steroid dosage is not sustainable indefinitely. When and how it is reduced is a medical decision which won’t be taken until a more complete picture of her prognosis is available.

The scan results will be in probably tonight, and the consultant will see them tomorrow. After that, all the medical reports and data will go to the oncology department, where it will be reviewed and a recommendation will be made. Tomorrow we may know more about the primary cancer, but Thursday is when we expect to start working on a plan for treatment and/or post-discharge care.

It looks like she won’t be going home again, since her returning cogence is something of a mirage. She won’t be capable of looking after herself, and will likely need 24/7 supervision for the rest of her life. It’s hard to resist speculating about how long she has, and how that will go, but we’re trying to avoid it anyway, until at least Thursday when the recommendations and analyses will be in front of us.

I’ve been around someone who died of brain cancer before. It was very intense and difficult. I was much younger then, and hadn’t seen as much, but it had enough of an effect that when I heard this news I immediately started harboring a secret hope that the primary cancer gets her first. I realize how blank and brutal that probably seems, but numb is where I’m living right now. Her generally good spirits are a surreal backdrop to all of this, and a gift from medical science to all of us. But it does make it easy to avoid the harshness of what lies beneath.

I’ve been distracting myself a bit this evening with a little work email, and by skimming local bike shop websites and posting on the Leeds Fixed Gear FB group, looking for a ride I can pick up for the duration. I need to get out on two wheels, not having a bike here is making me feel fat and stuck. I know there’s a big box store hybrid in the basement I can use, but that isn’t what I need. I fear I might be about to throw my credit card a bone.

So strange. Talking to Liz this evening, we compared notes on how we’re talking ourselves distant from this, turning the words over and over, practicing them on our friends and mum’s friends, so that they’re an abstraction layer shielding us from what they represent. Is that good or bad? We don’t know, but it seems wrong somehow, but thoroughly British.