One patient with glioblastoma still alive nine years later
by Randy1958 on Wed Oct 03, 2012 02:31 AM
I'm curious as to what the membership here does with their "down" time (I can't think of any other way to describe it, and I'm rarely at a loss for words). I've been off work for 8 months, with at least two more to go . . . ugh! Fortunately I enjoy reading, so that helps pass the time.
by HubbyhasGBM on Wed Oct 03, 2012 02:49 AM
Hi Randy. Haha! I know EXACTLY what you mean by "down time." First, I spent the bulk of my time educating myself on everything that applied to GBM's. Literally, I spent every waking minute reading science journals, articles, blog sites, etc. As I grew more familiar with that end of things, I needed some lighter fare, so I grabbed up some jigsaw puzzles. I love to do them during the Christmas holiday, but don't let myself do them any other time of year. I justified brain-tumor-land as an emergency puzzle accommodator. Then, tiring of the puzzles, I learned to knit Latvian mittens. Figured I could knit people mittens and give them as gifts to those who have given a helping hand. I must have knit 7,000 pairs of mittens (gross exaggeration, but could be accurate considering I had to tear out many a mitten because I had made mistakes.) Then, I learned to make dandelion wine in the spring. Oh boy! That's ripe now and lovely! Very sweet, and scarily strong, but somehow appropriate with special company. Lately, I've built my own food dehydrator and am making great headway drying tomatoes like mad. I still have some Adirondack chairs to stain/build, but they require a garage bay, and are too involved. The problem with this gig is that you need stuff that can be easily interrupted, and is unimportant if it gets destroyed by accident, or disrupted by visitors.
Hope that helps. Can't wait to read other people's ideas!
by karynk on Wed Oct 03, 2012 02:56 AM
HubbyhasGBM - I love you! That's all I really wanted to say - but your post....I can so relate!
I become an ADHD child who took a 5 hr energy (or 10) when it comes to down time. Project starter here, project holder when the man's brain acts up. I knit/crochet for a project that makes blankets for wounded military members. I figure I can find enough time to sit and make at least one of these little 6X9 rectangles in between BT stuff. I read a lot. I garden a ton...that is my stress relief. I am a crafty type of girl so I am always finding something to take up time.
by HubbyhasGBM on Wed Oct 03, 2012 03:12 AM
Haha Karyn! I love your attitude, too! Big win!
Several years ago, I made a list of stuff I really enjoyed doing, but could not remotely justify because I had teenage kids at the time who were running me ragged. So, I took this list, wrote down all this indoor stuff that I was missing doing and made a pact with myself: If anyone landed in the hospital - and I had to care for them, I was "allowed" to do stuff on that list.
As life unfolded, I had several opportunities to use it. My mother nearly tore off a leg in a farm accident (that allowed me to embroider nearly an entire tablecloth), my dad broke a hip (learned Sodoku and how to make killer thumbprint cookies), and suddenly I began looking at wordly misfortunes with an entirely new mindset! Not that I was looking forward to them - but I suddenly wasn't dreading them in the usual way. I suppose it doesn't matter what your "thing" is - just that it is something that you would find fun, and that you set aside to do when the right opportunity arises. I will say, this brain tumor allowed me to jet through several of the items on my list, as the "down time" is generous! I still have a set of "Learn French" tapes waiting.... I intend to get through this awful experience and then go on a trip there and eat their cheese and drink their wine. (Oops, gotta add to my list - "Learn about French wine.") : )
Seize the day, warriors! And Karyn, you're one of the best warriors around. If I were a brain tumor - I wouldn't want to run into YOU!!! : )
by jpearson472 on Wed Oct 03, 2012 03:18 AM
Randy it sounds like you will be one of the lucky ones able to go back to work. Ive been out of work now for 17 months with GBM. Ive remodled about half the house, relandscaped yard, I volunteer at my cancer center, I help others in need, I bring people dinners, restoring my old truck, go the gym, I do the laundry, I clean the house, and I cook. I hate laying around and not being active, so I find stuff to do. Heck, I have knocked out about 40 honey do lists
by HubbyhasGBM on Wed Oct 03, 2012 03:21 AM
P. S. If you should ever want to exact revenge on your brain tumor patient...learn harmonica...just sayin'.....
by karynk on Wed Oct 03, 2012 03:36 AM
Hmmm, Harmonica! He had all he could take with the squeaky recliner that is in his room today. And the fact that it requires about 4 good hands to remove the dining tray from his chair.
by suzanne55 on Wed Oct 03, 2012 05:09 AM
Oh my, you all crack me up. I was just sitting here feeling down and read your posts about what you do in your "down time". I'm in the club, too! I had to quit my job to take care of my husband, and since then have painted, planted, remodeled, cooked, cleaned, and even started selling the jewelry I make (it started as a harmless hobby, but got out of hand once I stopped sleeping)! Thanks for a chuckle - I needed that!
by niallsmum on Wed Oct 03, 2012 09:30 AM
by Cando on Wed Oct 03, 2012 03:00 PM
LOL Project woman here. I knit, crochet, make mosaics, do puzzles, read like a fiend. We have an enormous garden that I now have to maintain myself, as well, I own an 8 year old thoroughbred whom I trained. I have had to cut back on my "barn time" unfortunately, because a barn is where I am happiest, but my husband is too ill for me to be away that much. I have several lovely young women who ride him for me, and I still mnge to get there 2 times a week.I also am going back to work for 3 days a week. I will give it a try, it may not be possible. he is fairly dependent and slightly confused, but I will give it a shot. I have a little over 8 months until I can retire without taking a big hit in my pension. I am really hoping I can keep working for at least part of this time so I will have at least a living from my pension.
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Destination: HOPE. Cancer care that is worth the trip.
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