Tuesday I have chemo again and I’m sitting here thinking about my oncologist visit on Monday. She will once again be asking me about whether I rest more than 50% of the day. She does this to ensure I have quality of life because if I’m resting more than half of the day, I’m not really having much of a life.
So ... right now ... out of the 21 day cycle, I nap during the day maybe 4 of the 21 days and there may be a couple or three nights I will sleep 12 hours. I don’t really rest much per se but I do sit around most of the day. I really enjoy my laptop and spend the majority of the day blogging or surfing the net. Then of course there is the TV. So should that be included in the 50% of resting? That is the tricky part.
I don’t do much cooking or cleaning at all or anything physical. I just have no interest in doing anything that requires me to move my body. It is so bazaar because I used to be one of those hyper people who had difficulty sitting for any length of time.
So what do I think? Mentally, I’m pretty good and don’t tire too easily but physically, I’m pretty weak. I worry about how with each cycle I do less and less. I used to be able to walk the grocery store with one rest and now I need numerous rests or have D take care of it. When I go out and about anywhere, my first thought is ... where are the chairs? I worry my legs will give out from under me if I’m not careful.
So ... right now ... out of the 21 day cycle, I nap during the day maybe 4 of the 21 days and there may be a couple or three nights I will sleep 12 hours. I don’t really rest much per se but I do sit around most of the day. I really enjoy my laptop and spend the majority of the day blogging or surfing the net. Then of course there is the TV. So should that be included in the 50% of resting? That is the tricky part.
I don’t do much cooking or cleaning at all or anything physical. I just have no interest in doing anything that requires me to move my body. It is so bazaar because I used to be one of those hyper people who had difficulty sitting for any length of time.
So what do I think? Mentally, I’m pretty good and don’t tire too easily but physically, I’m pretty weak. I worry about how with each cycle I do less and less. I used to be able to walk the grocery store with one rest and now I need numerous rests or have D take care of it. When I go out and about anywhere, my first thought is ... where are the chairs? I worry my legs will give out from under me if I’m not careful.
Truly, I probably should consider cutting back my chemo but I worry that the tumors will grow.
9 comments:
Daria dear...we all live with that fear...do whatever you need to do...you know what YOUR quality of life is even if 75% is resting...to hell with the doctor (and i say that in the most respectful of tones!!)
I guess hon ..I would suggest that you do just a little walking daily..maybe start with a stroll around the yard and grow from there. I'm not sure that I am much help here!! I sould not want to suggest something your Dr. would not encourage!! I am very glad that you find things that make you happy!! I for one am always thrilled to see your face pop up on my blog!!
Hugs to you, Sarah
I guess it all depends on you, how content you are with doing what you are doing. Noone else can decide that stuff but you. I know with my mum, it frustrates the hell out of her, the fatigue and the weakness, especially in her legs. Those things make her question the quality of her life, so we try to keep the house work and stuff under control, which can be hard as she has always been a perfectionist when it comes to 'clean' and there isn't enough time or energy to go around. It's all relative isn't it really. What is most important to YOU....love to you
xxxx
Quality of life for everyone is different. As a Recreational Therapist, I would ask you "What do you like to do for fun?" "What makes your life meaningful? Purposeful?" Then I would find a way to modify those things so you could still do them. For my husband, one thing cancer tried to rob him of was photography. When he was too weak to go out hiking to take pictures, I drove him on short outings to interesting places. He would stand up next to the car, take photos, then sit down and rest. Later, when he felt up to it, he would upload and edit his photos. They turned out amazingly well. Many of my cancer patients at work just don't have the energy to do anything. And that's okay, too. Some of them find listening to music or watching the birds at the feeder enjoyable.
If you are enjoying what you are doing right now, then I would just accept it. I used to be a hyper person too but I am much happier now having been forced to slow down.
Don't worry too much about the next few days (easier to say). I spent the whole day resting in bed yesterday post chemo!
love & life
Sara xxxx
Daria,
I'm honored you got a good laugh reading about my misery! I'm so glad to shine a little light into your day. (just me with my flashlight and fuzzy slippers!)
From life comes comedy. I wish I could say I was creative enough to make this up, but shit really does happen!
Don't worry about the rest you need. Take what you need and give the rest back. As you gain strength and get back into the groove again, a good laugh is a great place to start.
Warm thoughts your way!
Peace B
The fight against cancer isn't easy and even resting isn't easy.
I'm slowly regaining my strength, but still as looking for places to sit, wherever we go, knowing I may well need them.
Hi Daria, it sounds like you have good quality of life since you enjoy your time blogging and surfing. And we know you like going out for coffee! If you're comfortable, I think you're good. Sometimes when I rest I get that restless leg syndrome or other things that make it hard to sit. If you can sit and rest comfortably, then I think that's great!
Daria,
I feel the exact same way, re: fatigue and resting and laptopping. It's so good to know I'm not the only one.
HM
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