So we had our meeting with the macmillian nurse, don't get me wrong, I am sure when the time comes they will be quite helpful. However she introduced herself and asked what we needed. Will I don't know, I thought they would assess David and tell us what they had to offer. Anyway she arranged a physio / ocupational health assessment for David (he was on 2mg of the dex steriods - see below) and I found the OH person quite patronising - I just did not like her manerasism (not a complaint she can't help how she is I surpose). Anyway they were able to offer David a couple of walking frames (the ones with wheels at the front) which will come in useful later on. They have also arranged to come to the house (the assessment was done at the hospice) and see what else they can help with.
The Macmillian nurse also arranged for a wheelchair loan for us, so we can take David out more.
So David was taking 2 1/2 mg of Dex Steriods, and he felt extreamly well, he decided this meant the amount was wrong, I suggested that we should make the most of it. He wanted to reduce has steriods to 1 1/2 mg we settled on reducing to 2mg after 2 days he started to feel sick and floaty again.
On the third day he agreed to increase his steriods back up, however the phisio appointment was in a couple of days so we decided to wait until after that and then increase up to 2 1/2 mg.
But now he doesn't feel as great as he did before, and we has had to increase up to 3mg to feel reasonable. I am now pushing for 4mg, as I still want to try and do some more things with him and the children, and as the macmillian nurse said she sees no reason why he can't go upto 4mg (as long as we have sufficient tablets - which we do) it's all about quality of life now and why shouldn't he feel great?
The only thing she did say was that generally on 8mg plus side effects such as swelling of the face may start to occur.
Today I put the washing machine on a quick wash for the kids swimming kits (this I do every week) and after it had been running a short while water started pouring out the front of the machine from the detergent drawer.
I tried and couldn't get the front flap for the drain pipe and pump filter open, and felt so hopeless - what will I do if something like this happens when David isn't around to help me.
Anyway after a good cry, I got David to come and help, he sprayed WD40 into it, and this helped to free it and open it.
I cleaned out the pump, and the detergent draw and touch wood everthing seems to be running fine now. Which is a relief as I geberally run the machine at least once if not twice a day.
Anyway thats enough from me now, thank you for reading.
