Thursday, October 3rd, 2013
I have been so bad with “chemo-head” that I forgot to post on here. You hear new mothers talking about baby brain, as a mother of two i can tell you baby brain hasn’t a patch on chemo-head!
I can be in in mid conversation and totally blank out – no idea what I was saying, complete blank. Then because I am forgetting things, if there is something I know I have to do, something important, I obsess completely until it’s done. I have so little control over most things at the moment, now I don’t even have control of my own head!
Thank God for the beach. Nothing beats a walk on the beach with the dog watching the sea and clouds which are different every time. Even when I have no energy I can drive and sit in the car and just watch. I love watching the big ships maneuvering in with a wee little tug steering it in. Feels like me with my cancer this little spot ruling my life at moment but that ship gets out of port and engines on and takes on the ocean. That’s me on a good day -engines full steam ahead and off I go.
Today is one of those days, and I want to drive on with what I set out to do a few weeks ago, make a difference for others by telling my story. I have been racking my brain to think of an initiative that could make things a whole lot better for people in my situation. I’m sure I’ve come up with loads of ideas, but chemo head has gotten rid of most of them! Thankfully one of you is thinking in the same way as me and reading back over private messages i was reminded of an idea I had, although she had a much better title than mine so I’ll borrow hers. We desperately need cancer coordinators in this country.
You have all read about my struggle to get basic services and help with other issues. However, I was left to find out on my own about the services and supports available.
The day I was diagnosed the doctor came in and told me I had three tumors and he was setting up a further appointment for me, just like that. He could have been a dentist telling me I needed three fillings. You go into shock, get into your car and drive and half way home you start bawling crying as that’s when his words sink in. I don’t know how more of us haven’t crashed our cars on the way back from these appointments.
Then a follow up x-ray and scan and I was told- oh they are aggressive, oh it’s terminal,, and then wait , 3 weeks for a pet scan to be told – oh you got more, so wait another 3 weeks for treatment and god only knows how many more have developed in those weeks. If it were a dentist who has gone from fillings to root canal to taking your teeth out the waiting and coldness of it all would be fine. But its not, it’s your life your being told your loosing.
There should be a coordinator to ensure a councillor is available to a patient and their family that day, To sit and have a cup of tea and talk. We deserve more than to be let out the door before the enormity of what you’ve been told sinks in. We should be helped to realise what we’ve been told and how best to share it with our loved ones. It is the hardest day ever in ones life, one where we need help more than we ever have before or will after. The coordinator should then follow up and make us aware of the basic services and supports that are available to us.
Nobody should have to go through what I and others who have messaged me did before eventually getting the help we needed with basic living, getting to appointments etc. So what would I like to be part of my legacy? That vulnerable people get the support and direction they need from the start of their difficult journey to the end. I really believe this can be achieved with cancer coordinators.
On a lighter note After digging the garden and getting the windows sparkling I went to Dunnes to get some shopping. This poor child in the queue behind me says to her mom ‘ what’s wrong with her’ pointing at me. I guess I’d forgotten only those close to me are used to seeing my almost bald head. The poor mother was shushing the child while trying to gag her before she said anything else. As I pulled my hat down to try and cover my head more, I couldn’t help but laugh. You gotta love kids and their curious, inquisitive minds and not being afraid to say what they are thinking out loud!
So straight after Dunnes I headed for Penneys, no wigs left there so off I went to another shop and bought myself a wig. The first one I bought home was black and in my daughters opinion ugly – ‘ no way’ she said! So off I go back to the shop and switched it for a long brown Lady Godiva style. First time I went out in it, the hair was in my mouth eyes, everywhere. It looked so fake, but to be fair it only cost a tenner. so I cut 2 foot off, put baby powder on it to get rid of fake shine, stuck a hat over it, and if i can say so myself, I think it looks good.
Okay so sometimes it moves and it’s longer on one side than the other. The heat might be unbearable, but at least wearing it might prevent some poor kid from getting into trouble again for asking out loud what their mom was probably thinking anyway, ‘whats wrong with her’!
By 'Annie' (pseudonym)
To read more posts from 'Annie' click here: http://whatwillbemylegacy.wordpress.com/
To hear 'Annie' speaking to Newstalk's Francis Fitzgibbon on this morning's "The Pat Kenny Show" listen back here:
