Wednesday, 28 December 2011

The cans and can'ts

I said a while ago that I would write about some of the restrictions that we have to live with in order to avoid infections.

As part of daughter's care team we were given the help of a nutritionist. 

I think we'd assumed that they would try to enforce a really healthy diet and tell us to stay away from rubbish.  This is actually not the case, to a point.

The nutritionists encourage the parents to give them what they want.  Daughter's appetite was shocking when she first became ill, but the steroids she was given as part of her initial treatment (and for 5 days now each time she has vincristine) suddenly sparked a desire for salty food.  This is very common.  The fridge in the cancer unit was filled with very similar delights for all of the kids - babybels, cheese strings, frubes.  Parents buy food to take in for them, and it was interesting to see that they were all craving the same things!

The reason parents are encouraged to feed them what they can is that they need to keep eating.  If they stop eating, or their mouths become too sore from the vincristine (blisters in the mouth are a common side-effect) they can try calorie-heavy milkshakes, or, failing these, a feeding tube. 

Daughter managed to get by without one of these, although at one point she was fed into her line as she was very poorly had to be put on drip food.

Anyway, the list of what to avoid is like being pregnant, but much, much longer.

The biggest problem comes from not being allowed to drink tap water OR bottled water.  The only water she can have has to be cooled, boiled water or ready-made drinks.

She can't have food that has been stood.  This rules out much take-away or 'fast food', although many outlets are good about making things up fresh.  Fast food isn't the thing you jump to feed your child when they have cancer, but if Macdonald's french fries are the only thing that they will eat, then you find yourself willingly going in and asking them to give you some straight from the frier.

It is a minefield and it takes some getting used to.

One thing I found interesting was the automatic belief that many of the bugs they pick up are from other people.  Most of them come from their own bodies, although we are still advised to keep them away from anywhere crowded when they are neutropenic. 

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