Monday, November 13, 2006

Mirror Mirror

People do talk a lot of nonsense to you when you're the parent of a life-limited child. Great euphemism "life-limited". They mean "odds on terminal" they just don't want to say it. And it's amazing the range of euphemisms that come up time and time again:

What they say: "I do admire what you do for the boy."
What they mean: "I'm glad I don't have to put a piece of plastic tubing in an open wound in his throat."

What they say: "You are marvellous parents."
What they mean: "You do have to put up with a lot of crap don't you."

What they say: "Amazing how you're always cheerful."
What they mean: "Please don't cry in front of me. I wouldn't know what to do."

What they say: "I couldn't do what you do."
What they mean: "Rather you than me."

Parents of children with cancer are no different to the next person. They're just trying to deal the best they can with the hand they've been dealt. They're not supermen and women. After all, what are you supposed to do if your child has cancer? Walk away? So you keep taking it. And when you think there's nothing else to give, the situation demands a little more. And then some more. Logically, there must be an end, either to the situation or what you can take. Who knows which comes first.

4 Comments:

Blogger Unknown said...

*laughs sardonically*

yeah ....uh ... sigh. Well said.

9:03 PM  
Anonymous Anonymous said...

I am stunned by the clarity of this post. As mother of a child with a brain tumor, I couldn't have said it better. I'm sending many good thoughts and hope for a successful outcome from across the pond. I also wanted to point out that while we were in Boston getting Proton beam radiation for our son, there were a few folks from the UK there. This radiation is special, causes the least damage and the people are amazing. You might consider starting to petition to be able to take him there. Massachusetts General Hospital. Dr. Torun Yock.

4:55 AM  
Blogger Ctelblog said...

Jill

Thanks for your info about Proton Beam radiation. Never heard of it before. Can't seem to work out if already having conventional radiotherapy means you can't also have this type.

Ctel

5:34 AM  
Blogger Unknown said...

We were told by Mass General and our home oncs that Proton wasn't a good fit for us. They had to sweep the whole area that had grown the tumor with radiation, and proton is for super-precision laser-beam type stuff, and not, they told us, for sweeps.

Also, they said as Thomas was so young and required IV feeds at the time and his trach, they felt like we'd better stick with our original team. That answer irked, but I'm glad it worked out that way.

9:09 PM  

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