It seems I'm a patient now!

I don’t really know how Marie Curie works. I just remember them being there when I visited.

Glad your hubs is feeling a bit better and less sick. 

Missing music has been a huge thing during the pandemic. You need it to soothe the soul.I’m sure the tears were cathartic. 

Sending more hugs xxx

I think the tears were needed too, seaspirit44, we know that music is a part of so many lives and when daughter was so ill I found it difficult to listen or make music, and the same is happening now again, sadly; when it’s healing power is so great I find it hard to allow it to start the tears off. In fact I’m crying while I type this! 

A bit concerned that hubs says his bum is sore, and indeed he was a bit red in the crack this morning, so I’ve suggested he gets up from the chair (he has varying cushions) regularly, gives his bum a firm rub and also has a lie down during the afternoon. I’ve also texted the OT for a pressure relief cushion since he’s not inclined to get up unless prompted. I certainly don’t want him to get pressure sores!

Hugs xxx

But just now hubs came downstairs (stairlift) to take his 5 pm tablets and asked what I was planning for dinner (sausage egg and chips) which is a bonus, considering he wasn’t wanting to think about food a few days back. He sounded appreciative when I replied, too….perhaps we are getting over the poor appetite from the Axitinib? 

Hugs xxx

And although he had no pudding he did eat as much main course as I did. 

Still concerned about his sore bum, skin not broken but rather red. Have asked OT for a pressure relief cushion. He’s sitting far too much of course, which is why I’m suggesting he lies down for an hour or so in the daytime.

Hugs xxx

moomy, you need to get some barrier cream and rub it in twice daily. It will help protect the skin.

Big hugs xxx

Can you get a pressure mattress from district nurse or hospice?

Hospice nurse has spent a couple of hours here, she will liaise with D/N and GP to get pressure area seen, and any need for cream/cushion etc prescribed,  add antidepressant, possible short steroid course to boost appetite a bit, to be discussed with the Oxford team. She went through physical and psychological assessment profile with him and will try her best to see him again if possible so she can reassess each time. 

D/N was supposed to have put Conveen bags on his repeats but so far they aren’t, so hospice nurse will ask about that too. 

I’m using massage anyway, but a barrier cream too is a good idea. 

Hugs xxx

Oh moomy they don't make things easy for you.  Everything seems such an effort that you have to keep chasing.  Even "she will try her best to see him again".  No she should say "I will be back" like Arnie!!

Hugs to you both xx

Ha, GroggShe, personally, will try to see him as she feels continuity of care is needed now…..

hugs xxx

After that talking to, (I had stressed gently that he’s got himself into a vicious circle of not eating and no energy to eat) hubs surprised us both by having a 2 egg omelette (I make good omelettes though I say it myself) and a good few oven chips with some courgette and followed that with a ‘corner’ yoghurt.