Yesterday afternoon I decided to give the Mac unit (Macmillan Unit) a call while Darren slept, but couldn’t get hold of them, so called the District Nurses (DN) instead. We’ve got a lot of numbers – Mac unit, DNs, OT, ‘hotline’ to his Doctors, it can be confusing to work out who to call. Anyway, the DN visited me while he slept and we discussed what else Darren might need. They have given me a form, which Darren has now signed, to allow them to arrange for carers to come in and help us if/when Darren and I want.
After his sleep he stayed upstairs as he wanted to fix the shelves in place for the 3D printer (or rather, wanted me to do it) and didn’t think it was worth struggling down the stairs only to struggle up them again. We finished that task (thankfully!) which pretty much wiped him out, so he went back to bed to recover. We agreed there was no point in going down the stairs after that either, so I ordered a takeaway which we ate in bed. Darren only wanted a little egg fried rice, so that’s what he had. He fell asleep at about 8pm.
This morning Darren feels like he’s slept really well which is good. We discussed his change in energy levels and drowsiness. We watched Steven Colbert on YouTube, something we now like to do together. After a small bowl of cereal and early morning meds he went back to sleep again. I phoned the Mac unit again and they arranged for Dr Tom to visit. Dr Tom spoke with us about upping Darren’s steroids to give him an energy boost, but they can have the side effect of not letting him sleep, even though he’s really tired. He’s giving it a go anyway. Darren is comfortable which is obviously the main thing, and so his pain medication will stay the same.
Tom and Amber came over to sort out the downstairs lounge and make it ready for the bed delivery tomorrow. I am profoundly grateful for this, because while I could have done it with Eddie, I just don’t have the brain space. I like to give Darren my full attention. Bel is also visiting and she has been very helpful around the house. I know why she’s here … the 3D printer!! Of course she wants to see Darren but he knows how excited she is about the printer.
Darren ate lunch when he resurfaced – half a fried egg, small bit of Red Fox (thanks Maria), a M&S rollito (thanks Amber), a Guylian chocolate (thank you Claudette and Fraser), a spoonful of local honey (thanks Hannah) and a small square of his current favourite posh chocolate (thanks me). I feel it’s more important that he enjoys his food currently than forces down what he thinks is the ‘right’ amount to keep him going. To see the pleasure on his face when he is enjoying the taste of the food is just the best thing for me right now, and I can’t begin to describe the impact good quality food has had on him. It has always been the way I demonstrate my love for him, and it continues to be so.
