Cancer, A Fight on all Sides
Since being home, Mom is still in alot of pain primarily from the radiation treatments. Now, starting the 4th week after chemo, I think most of those side effects are gone. She has 2 radiation hits to go and is on schedule for Tuesday being the last and final nuke.
Up until the last few nights in the hospital, Mom could slip in and out of sleep no matter who or what was going on in the room. But as she started feeling better, sleeping became a problem. She thought that she'd sleep better without someone staying with her. So, Thursday night I left her completely alone for the first time. The next morning, she hadn't slept.
Then, she thought it was maybe the nurses coming in and out of the room at all hours of the night. She jokes that they would come in for a zillion reasons including to wake her up to see if she's sleeping. She was so convinced that just getting home and in her bed would help that she started taking matters into her own hands.
One of the doctors on Thursday said that he'd let her go home if not for the fever. The infectious disease specialist (a really cool doctor from South Africa) looked Mom over and concluded that the persisting fever was just her body trying to recover from the on-going radiation. But the other doctor was not convinced.
So, when the nurses came in at regular intervals to check vitals (blood pressure, pulse, and temperature), Mom would sneak a ice cold drink of water just before the nurse stuck the thermometer in her mouth. Her temperature dropped from 100+ to 95 and below. We all got a good laugh until Mom's friend "from a galaxy far, far away" jerked us back to reality and what's best for Mom.
Friday afternoon, Mom got her walking papers. But after a weekend at home away from the nurses, she's still not sleeping. Now, she thinks it's just the frequent trips to the bathroom. In the past 3 weeks, she's not slept more than 3 hours at a time. Many nights, she was up every 20 to 30 minutes running for the bathroom. How can she recover without uninterrupted, sound sleep?
Also, her anxiety has been through the roof since she's been home. She says she's really overwhelmed. Not only has she stepped down from the shots of pain meds in the hospital to her prescription at home, but she's trying to ween the dosage down, way down.
This morning, Dad called me around 10ish to tell me that she had a bad night and was really upset. I raced over, grabbed her meds, and brought her to my house. I helped her take a shower. I have a hand held shower nozzle similar to what they had in the hospital. Mom said that the shower at the hospital was the best 20 minutes of the day. I got her into my bed, applied all ointments, and then went to check out her medicine log. I had her take needed meds and talked with her about how important staying on top of her meds for pain/anxiety management was. She agreed.
Anxiety is at an all-time high at home. At times, Dad feels like he can't do anything to help her which hurts him really bad. I think he wants desperately to get back to life before cancer but to some degree knows that it's out of reach. Mom is discouraged. When she feels somewhat better, she thinks that it's going to keep getting better and better. So when she hits a dip and goes back to feeling crumby and in lots of pain, she emotionally/mentally takes a huge dive. I'm confident that she's getting better and better, but when I try to encourage her, it doesn't usually help. If you hurt, feel bad, and haven't slept, I guess someone telling you your better isn't believable.
I'm hoping that the physical pain and suffering will draw to a close over the next several weeks and that total healing will follow. It's looking as though the struggle will shift from mainly physical to mental/emotional.
Yesterday, right before company was to arrive, Mom's anxiety skyrocketed. I kept trying to get Mom back to the bed and calmed down with an anxiety pill. Dad said that she had no reason to get all upset. Her fragile mental/emotional state is sometimes hard to understand.
I found a thread on the Colon Club Forum and believe it'll help to grasp how she feels. Again, she still has very intense pain from the radiation and I don't want to discount that in any way, shape, or form. I'm just trying to shed light on reasons for her fears and anxiety and that this information will help us to help her. The following are comments to a post from someone who doesn't feel her family and friends understand her fear and anxiety.
by justsing on Sat Jun 28, 2008 6:19 pm
My problem with people "getting it" is that I want to have it both ways. I want to go on with my life as normally as possible and not have to deal with the constant "so how are you doing, REALLY?" conversations. And at the same time, I want people to understand that in spite of my can-do attitude, I'm going through life with an enormous emotional Albatross around my neck. But if I don't talk about it, I can't expect everyone to "get it." And if I do talk about it, I spend a lot of time in an emotional swamp. It's a quandary!!!!!The most important thing for me is that I have one or two friends with whom I can fall apart -- BRIEFLY -- and then be allowed to immediately return to normal without having to "process" anything. They never press me to "share" but are there when I need them. They are worth their weight in gold.
Re: Why does no one Understand ?
by mnw28 on Sat Jun 28, 2008 6:49 pm
I completely understand. I find myself questioning my sanity because one day I'm aggrivated because people keep asking me "how are you feeling" but don't seem to really want to know the answer or they don't ask at all..which irritates me just as much depending on the situation. No win situation. I keep telling myself that people who haven't gone through it don't know what to say and the fact that they care enough to be concerned should be enough. But some days I just want to scream! For some reason I am bothered the most when people say "Well you look GREAT." I don't know why that bothers me so much but it does. I think my closest friends understand that I will talk about it when I want and they will be there to listen. They call and check on me, but if I don't return their call they understand. No one however, except cancer survivors understand the fear that keeps us up at night. I think we all know how quickly those morbid thoughts can enter our minds. Today is one of those days for me. I'm just really very depressed, sad, and discouraged. It seems like during each round of chemo, by Saturday (I start on wednesdays) I'm just really down in the dumps. I usually spend an hour crying to my mom on the phone and then somehow I wake up on Sunday feeling a little better and emotionally stable. Weekends can be so long when you feel so bad. I swear it feels like the minutes are going in reverse. It sucks being young with cancer. I feel so left out and so alone sometimes.
Re: Why does no one Understand ?
by Molly on Sun Jun 29, 2008 8:54 am
Until someone has stood on the edge and almost fallen, they will never truly understand what it's like to have a life threatening illness. Survivorship is a wonderful thing...but can also very scary.
To check out the original post and other comments, here's the link:
Why does no one Understand ?
by Culinarycfo on Fri Jun 27, 2008 11:08 pm
Up until the last few nights in the hospital, Mom could slip in and out of sleep no matter who or what was going on in the room. But as she started feeling better, sleeping became a problem. She thought that she'd sleep better without someone staying with her. So, Thursday night I left her completely alone for the first time. The next morning, she hadn't slept.
Then, she thought it was maybe the nurses coming in and out of the room at all hours of the night. She jokes that they would come in for a zillion reasons including to wake her up to see if she's sleeping. She was so convinced that just getting home and in her bed would help that she started taking matters into her own hands.
One of the doctors on Thursday said that he'd let her go home if not for the fever. The infectious disease specialist (a really cool doctor from South Africa) looked Mom over and concluded that the persisting fever was just her body trying to recover from the on-going radiation. But the other doctor was not convinced.
So, when the nurses came in at regular intervals to check vitals (blood pressure, pulse, and temperature), Mom would sneak a ice cold drink of water just before the nurse stuck the thermometer in her mouth. Her temperature dropped from 100+ to 95 and below. We all got a good laugh until Mom's friend "from a galaxy far, far away" jerked us back to reality and what's best for Mom.
Friday afternoon, Mom got her walking papers. But after a weekend at home away from the nurses, she's still not sleeping. Now, she thinks it's just the frequent trips to the bathroom. In the past 3 weeks, she's not slept more than 3 hours at a time. Many nights, she was up every 20 to 30 minutes running for the bathroom. How can she recover without uninterrupted, sound sleep?
Also, her anxiety has been through the roof since she's been home. She says she's really overwhelmed. Not only has she stepped down from the shots of pain meds in the hospital to her prescription at home, but she's trying to ween the dosage down, way down.
This morning, Dad called me around 10ish to tell me that she had a bad night and was really upset. I raced over, grabbed her meds, and brought her to my house. I helped her take a shower. I have a hand held shower nozzle similar to what they had in the hospital. Mom said that the shower at the hospital was the best 20 minutes of the day. I got her into my bed, applied all ointments, and then went to check out her medicine log. I had her take needed meds and talked with her about how important staying on top of her meds for pain/anxiety management was. She agreed.
Anxiety is at an all-time high at home. At times, Dad feels like he can't do anything to help her which hurts him really bad. I think he wants desperately to get back to life before cancer but to some degree knows that it's out of reach. Mom is discouraged. When she feels somewhat better, she thinks that it's going to keep getting better and better. So when she hits a dip and goes back to feeling crumby and in lots of pain, she emotionally/mentally takes a huge dive. I'm confident that she's getting better and better, but when I try to encourage her, it doesn't usually help. If you hurt, feel bad, and haven't slept, I guess someone telling you your better isn't believable.
I'm hoping that the physical pain and suffering will draw to a close over the next several weeks and that total healing will follow. It's looking as though the struggle will shift from mainly physical to mental/emotional.
Yesterday, right before company was to arrive, Mom's anxiety skyrocketed. I kept trying to get Mom back to the bed and calmed down with an anxiety pill. Dad said that she had no reason to get all upset. Her fragile mental/emotional state is sometimes hard to understand.
I found a thread on the Colon Club Forum and believe it'll help to grasp how she feels. Again, she still has very intense pain from the radiation and I don't want to discount that in any way, shape, or form. I'm just trying to shed light on reasons for her fears and anxiety and that this information will help us to help her. The following are comments to a post from someone who doesn't feel her family and friends understand her fear and anxiety.
by justsing on Sat Jun 28, 2008 6:19 pm
My problem with people "getting it" is that I want to have it both ways. I want to go on with my life as normally as possible and not have to deal with the constant "so how are you doing, REALLY?" conversations. And at the same time, I want people to understand that in spite of my can-do attitude, I'm going through life with an enormous emotional Albatross around my neck. But if I don't talk about it, I can't expect everyone to "get it." And if I do talk about it, I spend a lot of time in an emotional swamp. It's a quandary!!!!!The most important thing for me is that I have one or two friends with whom I can fall apart -- BRIEFLY -- and then be allowed to immediately return to normal without having to "process" anything. They never press me to "share" but are there when I need them. They are worth their weight in gold.
Re: Why does no one Understand ?
by mnw28 on Sat Jun 28, 2008 6:49 pm
I completely understand. I find myself questioning my sanity because one day I'm aggrivated because people keep asking me "how are you feeling" but don't seem to really want to know the answer or they don't ask at all..which irritates me just as much depending on the situation. No win situation. I keep telling myself that people who haven't gone through it don't know what to say and the fact that they care enough to be concerned should be enough. But some days I just want to scream! For some reason I am bothered the most when people say "Well you look GREAT." I don't know why that bothers me so much but it does. I think my closest friends understand that I will talk about it when I want and they will be there to listen. They call and check on me, but if I don't return their call they understand. No one however, except cancer survivors understand the fear that keeps us up at night. I think we all know how quickly those morbid thoughts can enter our minds. Today is one of those days for me. I'm just really very depressed, sad, and discouraged. It seems like during each round of chemo, by Saturday (I start on wednesdays) I'm just really down in the dumps. I usually spend an hour crying to my mom on the phone and then somehow I wake up on Sunday feeling a little better and emotionally stable. Weekends can be so long when you feel so bad. I swear it feels like the minutes are going in reverse. It sucks being young with cancer. I feel so left out and so alone sometimes.
Re: Why does no one Understand ?
by Molly on Sun Jun 29, 2008 8:54 am
Until someone has stood on the edge and almost fallen, they will never truly understand what it's like to have a life threatening illness. Survivorship is a wonderful thing...but can also very scary.
To check out the original post and other comments, here's the link:
Why does no one Understand ?
by Culinarycfo on Fri Jun 27, 2008 11:08 pm
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