Crickey! I Don’t Know Where to Start

What a couple of days.

Firstly, I apologise for the late post. I said I would post Friday but as you will see… events rather over took me.

After spending a night in the MAU Sal was transferred to Brent Ward. This was good news a this is the cancer ward and it is much more relaxed than the MAU. They know Sal from her previous visits too so she knows the staff there… or most of them.

Sally was prescribed a maximum dose of a drug called Dexamethasone… or Dex as it is known. This is a steroid used to reduce inflamation. As it was suspected that Sal might have a spinal cord compression this was given to help prevent permanent injury and possible paralysis. The thing is that Sal is known not to handle this drug at all well. Even 4mg causes her to have moderate symptoms… twitches, no sleep at all, hallucinations etc. Sal was given was 16mg yesterday between 4pm & 6pm.

Here started the nightmare that was the past 24hrs.

Shortly after Sal had taken the Dex she started showing signs of being confused. This developed into full and total confusion, paranoia, hallucinations and all round “out with the fairies” behaviour. I had to stay with her until this subsided. She would not have been safe in the hands of the care team on Brent Ward… they just don’t have the staff for that kind of minute by minute care.

So I stayed with her all through the night trying to keep her safe… not an easy task when someone is out of it like that and ultra-super agitated.

This was made worse because she was still struggling with her breathing and couldn’t lie down on the bed at all so she and I spent the whole night sitting on the side of the bed.

She came out of this stupor at about 7am this morning and although she is still suffering some bad effects at least now she is safe to be left on her own without me being there.

I was exhausted and our very good friends Colin and Lynne Higman came to the hospital to sit with Sal while I went home to grab a couple of hours of sleep and freshen up.

So… no more Dex!

So now down to the results of the scans she had yesterday and to what the doctors said.

She has some more fluid on the lung. One side could be drained off but not until Monday. The other side there isn’t really enough to drain. So this will likely be done Monday and may give her some relief.

She needs a CT scan of her lower spine to assess what radiotherapy might be suitable and that is scheduled for tomorrow I believe although it is sketchy as to when that is booked for.

Her sodium levels are low and she has had further blood taken to follow up on what might be causing that.

She is anaemic and so has had one unit of blood and may need another.

That is pretty much where we are at.

One thing that did come out of the discussion with the doc is that Sal is not likely to be considered well enough to continue her chemotherapy all the wile she if not mobile and at the moment that is a way off. We really need Sal to be able to restart chemo to try to stave off these setbacks. We will speak to the oncology consultant Money – remember… this very much a 5 day a week NHS we have at the moment.

I am off to try to get some sleep. More when I can.

One thought on “Crickey! I Don’t Know Where to Start”

  1. I hope you manage to get a few hours of restful sleep Paul. You must be totally exhausted both physically and mentally. What amazing support you’re giving Sally: the other week she told me she couldn’t manage without you and it’s clear that you are doing everything you can, to help and care for her.
    You are both in my thoughts and I’m hoping to receive some more positive news very soon. Thank you for keeping us all in touch and for taking the time to keep us updated. xx

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