I couldn't sleep at all last night, ended up sitting in the lounge at 4.30am, all those things going round and round in your head that even during daylight you can't sort them.
So after getting the kids off to schools, I thought I would try and get some kip. It is not be - the phone goes, the first time it is a friend asking how things are. So I end the calll and try again - my spine was so painful I could not get comfortable and this issus with my are is making me want to vomit ,it is so intense the pain. I close my eyes and bang bang on the door, can never understand why they do not use our bell. I open the door in my robe and for the sixth time in a week I have a guy asking for cold water samples - they will not tell us why - so I politely explained our circustances and he will not be callling again.
So I try again, five minutes can feel my eyes going heavy but the phone rings again - we have had no support from our Mac nurse since 2007 and after speaking to flok on here it gave me the courage to aks why about three weeks ago - its Mac head office and they tell me they are so very upset that we have been let down and have had no support but it will all change this week. She is going to speak to our local team and get something done. OK I say and the try again to go asleep.
The phone rings again and it is the Local team leader who also apologises and it will be sorted. The phone goes again after that and it is London Head Office just telling me that come Friday if we are not happy she will do more.
At this stage I feel Ill with sleep deprevation, lie down and it rings again, the TL at the local team as looked into it further and felt she should apologise again, and a new nurse will be coming to see you tomorrow. Great i say again, then she explains that hubby has not seen his Palliative Care Cons because they haven't employed one as yet - a year I say in surprise.
Put the phone down again and off it goes again, another part ff the team to make appt with the stand in consultant. I am exstatic but soo tired.
Then Mac Head Office press department ask if something I had written could be used on their new campaign, yes was my answer. Whatever we have to do so that not just us but all that goes though the pitfalls of cancer may just may get treated fairly
So its a busy one tomorrow so sign off .
Lv to you all
Ray xx
