Today has been better. Darren feels better and has managed to walk to school with me this afternoon.
I re read what I wrote yesterday and noticed it could have been read very wrong. When I say Darren can lend a hand, I mean with dishwasher and wiping down sides. Little tasks the macmillian nurses said he is fine to do.
Today I recieve my hospital appointments for my heart tests, which i had forgotten about with all this going on!
I have been thinking today about where we go from here if Darren doesnt respond to new medication. His consultant explained that about 80% respond to the drug long term, but some gain a resistance to it later. Im really worried that Darren wont respond to it, especially as we are all pinning our hopes on it. There is one further drug if this one doesnt work for Darren but its not as good result. If that doesnt work our last chance would be bone marrow. Darren doesnt have a full sibling and also has thallasemia miner (not sure i spelt that right) and I dont know how that will effect the bone marrow matches. Its terrible to think 3 strikes is all we have! I try not to think like this too often, I cant, I have to stay strong for Darren and the girls.
Im going to work on Friday, Im looking forward to being normal for a few hours.
Thanks to all that read this, i know most of it as rambling, but it helps. xx
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hi lisa,
ReplyDeleteJust to reassure you...
my mum and boyfriend would get quite firm at times about me getting up and doing stuff. I'm sure I was pretty cross about it at the time but it definitely did me a lot of good - especially mentally - as it helped keep me from wallowing and becoming totally consumed by the "I am ill" mentality.
And if I was unreasonable and snappy, they would definitely raise it, because yes I was having a hard time but if I was being a rotter then I did need reminding that they were going through it all too.
So basically - it didn't read wrong, I totally understand where you're coming from and from a "sick partner's" perspective I think a bit of nudging is a good thing :)
xx