Today I reflected much upon the impending “Off-Treatment”.
I walked into work euphoric. I even told a few close colleagues and the substitute boss how happy I am (making up a little fot last week's disappointmemt). Leukaemia and its treatment, absence from family etc have become so routine that I could not imagine an end to it ...
I rang Ann, mother of Hayley ... Hayley at the age of 16, was admitted a short time before us ... Hayley went “Off-Treatment” last week. The conversation went ...
Me: So some normality has returned?
Ann: Kind of ... but it's a different kind of normality.
It will be, I realise.
The anxiety of Rob's “When the Other Shoe Drops” rings true ... but at least Kezia will be able to go to school every day.
At least we won't have to suffer Dex trips.
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3 comments:
thinking of you
Life without Dex... cant wait. Leonie has 37 days (who is counting ?) I often think of Robs post. Our hospital doesn't do regular bloods after coming off treatment which seems the opposite of what you have said will happen to Kezia. I have questioned this but seemingly Great Ormond Street did a study which basically said a relapse wont be picked up any quicker by doing an FBC every month or two. I've mixed feelings about this, I think at this stage I'd like the security but I met a parent of a relapsed child recently and I asked her how it was picked up - she said I just looked at her and I knew.. So I suppose there will be a certain level of paranoia about a pale face or big bruise around this house. She will attend a clinic regularly for a chat and I suppose if I'm worried they will do an FBC then.
What will these little girls memories be of all this ? Hopefully alot less stressful than their parents recollections..I dread her as a teenager doing drugs and drink and possibly wrecking the life I fought so hard to keep. I suspect I'll have alot of teeth clenching to do not to be that potentially terrible parent saying if you only knew what we went through and to let her get on with her life. Still its a nice worry to have compared to the ones that have gone before,
Regards and rambling,
Rosie
It's interesting to think of the expected parental anguish over our teenage kids drinking and drugging and whatever as...nice worries compared to what we've already been through.
For what it's worth, we're more than a year into off-treatment now, and it's starting to feel a little less scary out here (though it feels like I'm tempting fate to say these words).
Just today, though, we had the "he looks pale / why does he say he has a sore neck / does he feel feverish to you" conversation. But it feels like we don't have to be quite so vigilant all the time. Hopefully those don't amount to Famous Last Words.
Regardless, life is a thousand times better with out Dex.
Best, Rob
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