Radium 223 - the highs and the lows

Yesterday (Sunday) when I visited, David had what looked like a pressure sore on his back. He's had small red sores on the tops of his ears for some days caused by elastic holding the oxygen mask in place. They'd dealt with the ears by taping small foam tubes round the elastic at appropriate places, but this rather Heath Robinson affair was starting to come apart. You'd think they'd have a better solution wouldn't you?

A mixed visit today. When I arrived David was sitting in his chair, but said he’d had a bad morning with some pain, which was now largely under control. He was on a saline drip, which they said was because the bloods showed an electrolyte imbalance. But when I managed to get hold of a doctor, he said that the infection markers had been dropping over the last couple of days and they'd also given him a dose of steroids (prednisolone I think). David says he doesn't feel any better, especially after the bad morning, but the sats were at 99 – 100 % - much higher than previously, so they are starting to turn the oxygen flow rate down to see if this can be maintained at lower levels of oxygen flow.

They have put a dressing on the sore on his back and he says they're checking other areas to make sure there are no others. I also got them to give me the materials to make a better job of the foam protection on the oxygen mask elastic. The elastic was escaping from the foam tube and rubbing again.

We didn’t get to see the Enhanced Palliative Care person this afternoon. So I’m going to call them tomorrow to try and arrange a more specific time for them to visit David so I can be there.

So, although he's far from out of the woods, there are some small positive changes. If this carries on he may start to feel better. Fingers (and everything else) crossed!

After yesterday's small positives, today was quite upsetting. David was asleep when I arrived at 2.30 and seemed reluctant to wake so I just read for a while. He stirred after about 20 minutes but was very confused. And he stayed confused for most of my visit. He kept removing the oxygen mask, which probably added to his confusion. He’s never been that bad before. The nurse from the EPCT (Enhanced Palliative Care Team) arrived and we had a long chat in the relatives room. She has managed to clarify things a bit. The infection markers are down but his breathing is not much better so I think they are a bit puzzled about what is actually causing the problem. The pain seems under control and the plan is to continue with the current antibiotics for two more days and review the situation then. In the meantime she has arranged that I can visit at any time and won’t be charged for parking. So I’ll be able to avoid peak times and both the travelling and the parking will be easier – one less source of stress as parking at RD&E is a nightmare most of the time..

Just before I left David was in his chair and seemed to be confused by my presence. 5 or 6 times he tried to get up and said ‘let’s do it’ or ‘let’s go then’. When I asked what he wanted to do he said he didn’t know. It’s terrible to see him like this.

I am so sorry Linda. Did the nurse have any explanation for the confusion? I suppose it could be as a result of infection and / or because the breathing difficulty means he has less oxygen getting to his brain, or could be nature's way of preparing him - I was told (in a similar situation) that the confusion dulls the mind as a natural painkiller kicks in, usually after the person has stopped eating or drinking. Sometimes, the confusion clears quite suddenly and we get our loved one back, even if only for a short time. I am praying that you have your David back tomorrow x