Sunday, 7 April 2013

Her face lights up

when she sees me - although how she can smile at all is beyond me. She has just had her oesophagus and larynx removed because the cancer has spread. The prognosis is not good but she keeps hoping.
I can also see hope and despair in her husband's eyes.
In hospital she was writing everything she wanted to say down on paper. There was not much to say there. The nursing staff anticipated some of her needs. Some of them were quite good at asking questions which just required "yes" or "no" as an answer. Now she is home - at least for a while - and the situation has changed. 
She needs to be able to communicate more quickly with her family and writing everything down is not always going to be convenient.
It is still natural for her to try to speak. Everyone is trying to be patient but I can see from her eyes that she feels isolated and excluded from the chatter around her. I can sense the impatience her family feels at her not being able to immediately answer them.
Even if I give her additional ways to communicate - and I can - she will still feel like this and they will still feel impatient. But, she keeps hoping...hoping the cancer can be controlled and give her time with her family...hoping she will still see her family grow up...that she will find a quick way to communicate which will be just as easy as speaking. 
I know there is no such way. Even the most modern speech device is not the same. If they invest in a speech device she will sound more like a female version of Stephen Hawking. She "laughs" at mention of that and I can just lipread "Me - brilliant mathematician!" 
      "Well at least you get the right change when we go shopping," her husband tells her. He also knows there are no easy answers. She has been through so much that he wants to make it as easy as he can for her but he does not want to take away her dignity either. It's a hard thing to balance.
So we discuss the options. I am careful to include her all the time, to wait for her to answer, to write things down. 
As I am about to leave I tell her, "If you need me 'phone me." She looks shocked and disappointed. I know what she is thinking, "How can I make a 'phone call. Cat does not do text messages." I smile at her and say, "I thought about it. Just phone me and give two good thumps into the phone. I'll know it's you. I'll come round."
She smiles and hugs. I can feel her shaking slightly and there are tears in her eyes when she lets go. 
It's going to be tough but I hope I have given her a little reasonable hope...hope that she will be understood.

1 comment:

Anonymous said...

Sometimes the simpler the better ... and hopefully I will remember, and spread around, the idea of phoning a friend and using a very basic morse code to communicate. In the case of your friend she can listen to you so you can tell her how soon you could be there.