So we have finished our first week of radiation therapy... four days down... 5 weeks to go.
I am soooooo not going to make it through this journey with my sanity intact!
At the end of week 1 I have had less than 10 hours sleep in total, Nicola's anxiety has escalated out of control. She seems to be trying desperately to cling to any semblance of routine that she can get, so she has determined that nurses doing her obs have to do it in the correct order. O2 Sats first, then blood pressure on the left leg, then temperature, in both ears, first left then right. If they try to deviate from that routine, heaven help them, as we all discovered today!
Thankfully a quick consultation with the consultant has seen an increase in her anti-anxiety medications and I am hoping against hope that she starts to relax a little.
It's hard for her though. She is so routine driven, so attached to 'her' life and 'her' ways of doing things that she doesn't cope well when any part of that is changed, and here we haven't just changed a little part of it, we've just shattered her entire world dynamic.
We have taken away her home, her bed, her belongings, her routine, her Squeaky, her sisters and her Daddy... and she is so very aware of everything that is gone!
Last night she cried in her sleep until close to 1am. It wasn't a loud, sobbing kind of cry, but the quiet little whimpers. About 1.45am she woke up and decided she wanted her Squeaky sister, and then it started. 5 hours of tantrums, melt downs and screaming fits because she wanted everything that was hers and Mummy just couldn't produce it.
I just hope that we get new accommodation soon, for her sake. At least giving her back her Daddy and her sisters will give her back some sense of normalcy!
So, anyway, we're back to the end of her first week of radiation.
I think so far, physically she seems to be handling it pretty well. There has been a marked increase in her saliva production which is caused by the repeated GA's and her stridor has gotten a little worse, when she actually sleeps... but all in all, she seems to be doing ok, or at least so I thought.
The Anesthetist that had her today was concerned because he doesn't think her airways are going to hold up to the pressure of the repeat anesthetics, and he wants an action plan put in place before she starts treatment next week as to what will happen 'when' her airways fail during a procedure.
But, other than that, we have the weekend to ourselves. Well, at least, Nicola has the weekend to herself, I just have to fit in with her plans... but I'm hoping tomorrow morning will bring some time away from the hospital grounds, maybe a trip into the city because it's easy to get to from here, and a spot of shopping. Anything that is semi normal and not revolving around the chaos that we have had here for the last 5 days.
I would really really like a little sleep, but I'm not too sure that will happen!
But I guess it doesn't hurt to hope, right??