Firstly thank you to everyone who has left messages of support.
I've just got back from afternoon visiting. Not good. Mike is feeling worse than when I left him yesterday. Over night he started to feel nauseous so they gave him anti-sickness medication. Now I'm no expert and know nothing about such things, but aren't they supposed to stop you being sick? Because if that is what they are meant to do, they aren't working. The doctor who is on over the weekend has decided he needs two units of blood and liquid morphine for the headache. The nurse was just giving him his morphine when I arrived. Needless to say it only stayed down a few minutes. I hate to say it, but everytime he goes into hospital they seem to make him worse.
Saturday, 8 May 2010
The tough cookie crumbles.
The English language is a mysterious thing, full of strange and sometimes contradictory expressions. One example is of course the title of this post. You can be "one tough cookie" a phrase that on occasion could have been applied to me. Generally I have been a tough cookie when it has come to Mike's illness, but this last week has stretched me to the limit, and this cookie crumbled big time on Tuesday.
It was then that the postponement of Velcade was mentioned, originally for a week to give him a break. I felt as though the house of cards we'd been building had fallen on my head. The staff in the day ward were wonderful and tried to reassure me that it would all be fine. (I know, it all got worse, but they weren't to know.) Little Miss Hurricane said that although the haematology support group no longer existed, she knew that one particular lady was still helping people over the phone and suggested I might like a call from her. Now those of you who know a little of my past will realise how big a step it was for me to say yes, but I did.
Now I am well aware that I am far from normal and that my reactions to many things in life do not sit well with other people. But for me the telephone call was a complete write off. The lady I spoke to sounded very nice, and I'm sure that in person she is very pleasant, but as her opening gambit was, "both my husband and I have myeloma", it was clear from the start that it wasn't going to help me. You see what I really needed was to talk to someone who was in exactly the same position as me, someone who was a carer and not a sufferer, someone who I could say my biggest fears to without me thinking I should worry about them being ill. Well I listened to her stories of treatments for them both and answered her questions about the Myeloma UK site and their infoguides, and when she had finished she asked if I had any questions. I obviously said no I couldn't think of any. You see it wasn't information I was looking for, but answers to questions we all fear to ask.
Well that's the way the cookie crumbles. I'm a tougher cookie for it, and when all this is over, I'm going to make damn sure there is better support for those carers who need not information but emotional support around here. Not everyone can do it over the telephone.
It was then that the postponement of Velcade was mentioned, originally for a week to give him a break. I felt as though the house of cards we'd been building had fallen on my head. The staff in the day ward were wonderful and tried to reassure me that it would all be fine. (I know, it all got worse, but they weren't to know.) Little Miss Hurricane said that although the haematology support group no longer existed, she knew that one particular lady was still helping people over the phone and suggested I might like a call from her. Now those of you who know a little of my past will realise how big a step it was for me to say yes, but I did.
Now I am well aware that I am far from normal and that my reactions to many things in life do not sit well with other people. But for me the telephone call was a complete write off. The lady I spoke to sounded very nice, and I'm sure that in person she is very pleasant, but as her opening gambit was, "both my husband and I have myeloma", it was clear from the start that it wasn't going to help me. You see what I really needed was to talk to someone who was in exactly the same position as me, someone who was a carer and not a sufferer, someone who I could say my biggest fears to without me thinking I should worry about them being ill. Well I listened to her stories of treatments for them both and answered her questions about the Myeloma UK site and their infoguides, and when she had finished she asked if I had any questions. I obviously said no I couldn't think of any. You see it wasn't information I was looking for, but answers to questions we all fear to ask.
Well that's the way the cookie crumbles. I'm a tougher cookie for it, and when all this is over, I'm going to make damn sure there is better support for those carers who need not information but emotional support around here. Not everyone can do it over the telephone.
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