GroverEatsGrapes5 karma2012-03-24 17:01:07 UTC
My wife also had leukemia. AML, to be more exact. The first time around she declined the transplant (she wanted to preserve some chance of having children - of which we have one, so success!) but relapsed 3 years later. The second time around she did have the transplant (unrelated) - that was more than 12 years ago. Things have no doubt changed over that period - as they tend to do in the medical world as understanding evolves.
That's not a question. I don't really have one.
I have a couple of tips from the transplant world though... surprisingly the hospital was not very helpful in these kinds of matters.
If you find your treatments are making it tough to drink water because it tastes tinny - sprinkle a pinch of Chrystal Lite power in the water and problem solved. My wife found that the lime flavour worked particularly well.
Buy baby wipes. Use them instead of toilet paper. Chemo and radiation will have an impact (as you likely already know) in this area. The wipes are much gentler, and may help you avoid abrasion (especially caused by the sandpaper they use in hospitals) infection or other ass problems.
Buy your own kleenex. Hospital tissues are also made of sandpaper.
Keep a supply of hard candy at your bedside. Dry mouth is a symptom you will have to deal with - if you already are not. It's not just annoying, but can have serious implications. A sweet something can really help.
You must advocate for yourself. At one point in my wife's treatment the hospital was giving her an anti-emetic (to keep her from being sick to her stomach) orally. The drug as available through the IV, but the pill was about 1/2 the price. Of course, having to swallow something when you're as sick as she was can be quite a trick. We insisted on a change to the IV delivery method, and the results were quite positive. We live in Canada - so the cost was not incurred by us directly.
Have someone with you at the hospital as much as possible. My wife was drugged to the gills for much of her treatment. If the doctor visited her while she was in this state, she would have remembered none of it. I was there to be her memory - to double check everything the staff were doing, to run little errands and to take care of the bed-sheet changing and bathing. Nurses are (here at least) chronically understaffed - so they really appreciate the help - and it's just nicer to have someone who loves you taking good care of you.
Write everything down. We did not do this, but if we could go back we would.
Those are the ones that come to mind right now. If you ever want to talk to my wife directly - just PM me and I'll get her to answer any questions you might have.
Best of luck!
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