Last rad day. What happens? Machine breaks. No Joke.
Comments
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Fluimucil =Acetylcysteinemicktissue said:impatient
Hi Kent. That's the problem. Even with the PEG I'm still losing a but of weight, but not as much as I was. Swallowing is almost there, but right now all feeding/drinking is with the PEG. I am depressed and I look for change daily and it just doesn't happen, so it's a bit of a cycle. I don't sleep well at night due to the mucus so I tend to cay nap during the day.
I am so skinny! I am sure I have lost muscle mass. Also with the depression I have thoughts of "do I still have cancer?" This is crazy making. living moment-to-moment is very hard and I feel so isolated from my family and friends. All I an do is spit, gag, hack, eat with the PEG, and sleep.
A good friend stopped by today and all I could do was weep when I saw him. He said, "I promise it wont be like this for very much longer." Man, this is hard.
Mick
H Mick,
Glad your out and also I feel the s#@t you are going through. I found Fliuimucil to help break up the mucus. Also the Anti-depression meds will give you a solid sleep (Remeron, Rivotril Seroquel ++). Your Doctor will know.
This is probably the worst of it you are in now, and it will be a s slow climb out but hang there man, you will get through this and look back from a much better place.
Scam0 -
Hang in Theremicktissue said:impatient
Hi Kent. That's the problem. Even with the PEG I'm still losing a but of weight, but not as much as I was. Swallowing is almost there, but right now all feeding/drinking is with the PEG. I am depressed and I look for change daily and it just doesn't happen, so it's a bit of a cycle. I don't sleep well at night due to the mucus so I tend to cay nap during the day.
I am so skinny! I am sure I have lost muscle mass. Also with the depression I have thoughts of "do I still have cancer?" This is crazy making. living moment-to-moment is very hard and I feel so isolated from my family and friends. All I an do is spit, gag, hack, eat with the PEG, and sleep.
A good friend stopped by today and all I could do was weep when I saw him. He said, "I promise it wont be like this for very much longer." Man, this is hard.
Mick
Just keep hangin Mick, you're through the worst of it. It's just gonna stick with you for a few more weeks, but more than likely not get any worse than you've endured the last few weeks already. The good thing is that you aren't getting zapped any more. So now you are actually healing, your brain just doesn't know it yet. Even though our body is healing, it takes a lot out of you for that healing to progress.
Soon you'll start feeling a little less pain each day. Eventually you'll start feeling a little better, but it's just a slow process. Everyone here that's been where you are now has gone through the same similar pain, anxiety, frustration and impatient feelings. Unfortunately like the rest of the road you have just traveled, only time will resolve it, there are no short cuts.
I can only offer to stay positive, keep focused and realize that you and your body have just went through a battle, time to heal now.
John0 -
I know they are allSkiffin16 said:Hang in There
Just keep hangin Mick, you're through the worst of it. It's just gonna stick with you for a few more weeks, but more than likely not get any worse than you've endured the last few weeks already. The good thing is that you aren't getting zapped any more. So now you are actually healing, your brain just doesn't know it yet. Even though our body is healing, it takes a lot out of you for that healing to progress.
Soon you'll start feeling a little less pain each day. Eventually you'll start feeling a little better, but it's just a slow process. Everyone here that's been where you are now has gone through the same similar pain, anxiety, frustration and impatient feelings. Unfortunately like the rest of the road you have just traveled, only time will resolve it, there are no short cuts.
I can only offer to stay positive, keep focused and realize that you and your body have just went through a battle, time to heal now.
John
I know they are all variations on a theme, but it is true.
I am just a month ahead of you, mucous is much better. Even just "a pinch" a medical term to be sure, of antidepressants may be helpful.
I am not patient either and have not made as much progress as I would have liked.
My throat is still really sore, but taste has improved quite a bit.
Hang in there, get some sleep if you can.
Is it spring like where you live..That could be helpful.
Stacey0 -
Answers Abovestaceya said:I know they are all
I know they are all variations on a theme, but it is true.
I am just a month ahead of you, mucous is much better. Even just "a pinch" a medical term to be sure, of antidepressants may be helpful.
I am not patient either and have not made as much progress as I would have liked.
My throat is still really sore, but taste has improved quite a bit.
Hang in there, get some sleep if you can.
Is it spring like where you live..That could be helpful.
Stacey
Stacey, I responded to your questions a few entries above.
Speaking of Spring, all of this Oak pollen is playing havoc on my sinus and head. Headaches, hoarsenss, stuffy...can't wait until my black truck doesn't have a yellow crust of pollen on it every morning.
Mick, I had Percocets that I'd crush up in a little water. They seemed to knock the edge off of any pain that I had. I also usually would crush one up before bed and it helped me to get at least a few solid hours of sleep.
Even before this ordeal I was lucky to sleep more than 5 - 6 hours uninterrupted. Sometime during treatment and even now, I'm lucky to sleep 2 hours straight. I'm usually up if nothing else to take a sip of water and go to the rest room from the water that I drink during the day/night.
I need a lot less water as for sips throughout the day than previously, but I still drink a lot of water flushing my system and staying hydrated.
Anyways, like I said, when I was having so much pain during the period you are in right now Mick, the Percocets helped me knock the edge off of the pain for a few hours usually.
John0 -
FluimucilSkiffin16 said:Answers Above
Stacey, I responded to your questions a few entries above.
Speaking of Spring, all of this Oak pollen is playing havoc on my sinus and head. Headaches, hoarsenss, stuffy...can't wait until my black truck doesn't have a yellow crust of pollen on it every morning.
Mick, I had Percocets that I'd crush up in a little water. They seemed to knock the edge off of any pain that I had. I also usually would crush one up before bed and it helped me to get at least a few solid hours of sleep.
Even before this ordeal I was lucky to sleep more than 5 - 6 hours uninterrupted. Sometime during treatment and even now, I'm lucky to sleep 2 hours straight. I'm usually up if nothing else to take a sip of water and go to the rest room from the water that I drink during the day/night.
I need a lot less water as for sips throughout the day than previously, but I still drink a lot of water flushing my system and staying hydrated.
Anyways, like I said, when I was having so much pain during the period you are in right now Mick, the Percocets helped me knock the edge off of the pain for a few hours usually.
John
Hi John. Thanks for the advice. Ativan work for me for sleep, but I don't take it every night, maybe I should.
Best,
Mick0 -
Sleepmicktissue said:Fluimucil
Hi John. Thanks for the advice. Ativan work for me for sleep, but I don't take it every night, maybe I should.
Best,
Mick
Hi Mick, I think sleep is a big ingredient. I've been sleeping well because I've worked with my doc to take what I need to get me there. My schedule is a mess, stay up late, but I get about 8 hours before I'm through. I take a time-release Ambien, and two ativan when I go to bed, again, this is with the doctor's understanding, may not be the correct combo for you. If I wake up five or six hours later, I take one more ambien and go back to sleep. I think getting enough sleep helps with the depression also . . . at least I don't get depressed when I'm asleep. Too, you're throat is going to start feeling better, less and less paper cuts, and that too was a big help for me in terms of feeling less bummed and sleeping easier.
best, Hal0 -
It's on you nowHal61 said:Sleep
Hi Mick, I think sleep is a big ingredient. I've been sleeping well because I've worked with my doc to take what I need to get me there. My schedule is a mess, stay up late, but I get about 8 hours before I'm through. I take a time-release Ambien, and two ativan when I go to bed, again, this is with the doctor's understanding, may not be the correct combo for you. If I wake up five or six hours later, I take one more ambien and go back to sleep. I think getting enough sleep helps with the depression also . . . at least I don't get depressed when I'm asleep. Too, you're throat is going to start feeling better, less and less paper cuts, and that too was a big help for me in terms of feeling less bummed and sleeping easier.
best, Hal
Just read an article yesterday on how there is virtually no platform in place for care of cancer survivors written by a clinical Doctor who found this to her horror upon completing treatment for breast cancer. I think it was in the Livestrong newsletter yesterday. If you have a hip replacement there is tons of rehab, not for us. The cancer mantra is seek and you shall find. Be silent and you will suffer.
Mick If I remember right you are some sort of a therapist. So now is the time to heal thy self. The doctors have done what they do. Now you must advocate for whatever addtional care you need. If' its depression then ask for medication and please make an appointment with an oncology pyychologist. If its lymphedema then seek out a massage therapist. If it's a nutrition issue then get hooked up with a nutritionist. Swallowing, hearing, dental, whatever it is, you must now take the lead. Now is the time to be vocal about any isuue that comes up. There is a whole line of cancer patients behind you. Soon you will be just one more who went through treatment.
Lastly, our bodies get better in increments of months and years not days and weeks. It is very frustrating and can cause much depression. Every thing you are experiencing is perfectly normal. The phrase you will learn to hate and later appreciate is, "The new Normal"
I want you just to make it to your next follow-up appointment because after that things will get better. Moving forward with extreme uncertainty will be the hardest thing you have ever done, one foot in front of the other, one bump in the road at a time my friend. As the new "Spring" rises out of the grips of winter because the winter must let go, you will rise out of the grips of "Cancer" because it too must let go! Standing still for a time is "OK" but no backward progress and eventually only Forward is permitted!0 -
Article followsratface said:It's on you now
Just read an article yesterday on how there is virtually no platform in place for care of cancer survivors written by a clinical Doctor who found this to her horror upon completing treatment for breast cancer. I think it was in the Livestrong newsletter yesterday. If you have a hip replacement there is tons of rehab, not for us. The cancer mantra is seek and you shall find. Be silent and you will suffer.
Mick If I remember right you are some sort of a therapist. So now is the time to heal thy self. The doctors have done what they do. Now you must advocate for whatever addtional care you need. If' its depression then ask for medication and please make an appointment with an oncology pyychologist. If its lymphedema then seek out a massage therapist. If it's a nutrition issue then get hooked up with a nutritionist. Swallowing, hearing, dental, whatever it is, you must now take the lead. Now is the time to be vocal about any isuue that comes up. There is a whole line of cancer patients behind you. Soon you will be just one more who went through treatment.
Lastly, our bodies get better in increments of months and years not days and weeks. It is very frustrating and can cause much depression. Every thing you are experiencing is perfectly normal. The phrase you will learn to hate and later appreciate is, "The new Normal"
I want you just to make it to your next follow-up appointment because after that things will get better. Moving forward with extreme uncertainty will be the hardest thing you have ever done, one foot in front of the other, one bump in the road at a time my friend. As the new "Spring" rises out of the grips of winter because the winter must let go, you will rise out of the grips of "Cancer" because it too must let go! Standing still for a time is "OK" but no backward progress and eventually only Forward is permitted!
Wish we could post links here, but in the interim:
Julie Silver shares her story, about how she survived cancer and then survived treatment.
My then 3-year old daughter told me, "Mommy, you don't look pretty anymore." She was right. I was 38 years old and in the middle of chemotherapy for breast cancer. I didn't have any hair, including eyebrows and eyelashes. My skin had lost its usual coloring. I was in pain much of the time, and it showed on my face and in the way that I carried myself.
My daughter's six words were more than about beauty, though. They told the story of a child whose mother was gravely ill—fighting for her life and becoming sicker and sicker by the treatments designed to help her live.
"I'm a physician, and I knew I had to heal myself before I could heal others."
When I was finished with the acute cancer treatment, my wonderful oncologist encouraged me to go back to work. I'm a physician, and I knew I had to heal myself before I could heal others. It wasn't yet time for me to return to work. As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest.
It wasn't until I was the patient that I realized that oncology rehab barely existed at all. At the time, I was too sick to do anything about it, but I made a pledge that when I was well enough, I would help other cancer survivors heal as well as possible. I would take the words that are so often told to cancer survivors "you need to accept a new normal" and encourage them to not accept a new normal too soon. Instead I would encourage them to insist on receiving well-coordinated oncology rehabilitation care, and to heal as well as possible—whether their cancer was cured, in remission or they are living with cancer as a chronic condition.
"As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest."
I began by looking at the research in cancer rehabilitation, and wrote a book for survivors called After Cancer Treatment: Heal Faster, Better, Stronger(Johns Hopkins Press). Next, I began to educate my healthcare colleagues about the need for oncology rehabilitation to become the new "standard of care." I gave medical talks at Grand Rounds in hospitals all over the United States, wrote articles in medical journals and took every opportunity to share the many stories of cancer survivors who were suffering far more than they needed to.
One story I like to tell is about the woman who approached me at a community cancer event in the Ozarks. She handed me a picture of herself that was taken after her final chemotherapy treatment. In the photo, she is bald and wearing a pink graduation cap and gown that she made to celebrate the end of her cancer therapy. This woman said to me, "I graduated more than one year ago, and I still don't feel well. I don't know what to do. How can I heal?"
I had trouble finding anyone in healthcare, or in the cancer survivorship community, that encouraged cancer survivors to find ways heal on their own. But when I compared groups, such as the six million stroke survivors in the United States, most of whom will receive some rehabilitation if they have impairments, to the more than 12 million cancer survivors who are generally left to their own devices to heal, people instantaneously understood that we need to address this major deficit in the cancer care continuum.
But understanding the need and addressing it are two different things. There are many barriers to overcome when it comes to insuring that cancer survivors receive the kind of comprehensive and well-integrated rehabilitation services that so many others who are ill or injured receive. There are few healthcare providers who have had sufficient training and experience in oncology rehabilitation medicine, and while insurance companies generally reimburse for this care, rehabilitation professionals typically don't have much experience with how to code and bill for office or therapy visits.
So, the next step was finding a fast and effective way to train healthcare providers in how to provide oncology rehabilitation services. To do this, I founded a company called Oncology Rehab Partners. The goal of this company is to advance survivorship care by training healthcare providers in how to deliver comprehensive oncology rehabilitation services. Hospitals can utilize existing resources (including clinical personnel) and quickly and expertly develop a STAR (survivorship training and rehabilitation) program. With online training that complements their extensive clinical care experience, physicians/physician assistants, oncology nurses/nurse practitioners and physical/occupational/speech therapists can all become STAR Clinician Certified once they've taken a comprehensive course and demonstrated competence by passing a series of tests.
My daughter is now 10 years old. Her memories of my cancer have faded. If she sees an old photograph of me during treatment, she sometimes will ask, "Mom, who is that?" My response, "That is a woman who refused to accept a new normal before healing as well as possible."
Julie Silver, MD is an assistant professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation. She is the author of many award-winning books including What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope (American Cancer Society). Dr. Silver is the founder of Oncology Rehab Partners, a healthcare company dedicated to advancing survivorship care with oncology rehabilitation.
Tags:0 -
Glad Its Overratface said:Article follows
Wish we could post links here, but in the interim:
Julie Silver shares her story, about how she survived cancer and then survived treatment.
My then 3-year old daughter told me, "Mommy, you don't look pretty anymore." She was right. I was 38 years old and in the middle of chemotherapy for breast cancer. I didn't have any hair, including eyebrows and eyelashes. My skin had lost its usual coloring. I was in pain much of the time, and it showed on my face and in the way that I carried myself.
My daughter's six words were more than about beauty, though. They told the story of a child whose mother was gravely ill—fighting for her life and becoming sicker and sicker by the treatments designed to help her live.
"I'm a physician, and I knew I had to heal myself before I could heal others."
When I was finished with the acute cancer treatment, my wonderful oncologist encouraged me to go back to work. I'm a physician, and I knew I had to heal myself before I could heal others. It wasn't yet time for me to return to work. As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest.
It wasn't until I was the patient that I realized that oncology rehab barely existed at all. At the time, I was too sick to do anything about it, but I made a pledge that when I was well enough, I would help other cancer survivors heal as well as possible. I would take the words that are so often told to cancer survivors "you need to accept a new normal" and encourage them to not accept a new normal too soon. Instead I would encourage them to insist on receiving well-coordinated oncology rehabilitation care, and to heal as well as possible—whether their cancer was cured, in remission or they are living with cancer as a chronic condition.
"As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest."
I began by looking at the research in cancer rehabilitation, and wrote a book for survivors called After Cancer Treatment: Heal Faster, Better, Stronger(Johns Hopkins Press). Next, I began to educate my healthcare colleagues about the need for oncology rehabilitation to become the new "standard of care." I gave medical talks at Grand Rounds in hospitals all over the United States, wrote articles in medical journals and took every opportunity to share the many stories of cancer survivors who were suffering far more than they needed to.
One story I like to tell is about the woman who approached me at a community cancer event in the Ozarks. She handed me a picture of herself that was taken after her final chemotherapy treatment. In the photo, she is bald and wearing a pink graduation cap and gown that she made to celebrate the end of her cancer therapy. This woman said to me, "I graduated more than one year ago, and I still don't feel well. I don't know what to do. How can I heal?"
I had trouble finding anyone in healthcare, or in the cancer survivorship community, that encouraged cancer survivors to find ways heal on their own. But when I compared groups, such as the six million stroke survivors in the United States, most of whom will receive some rehabilitation if they have impairments, to the more than 12 million cancer survivors who are generally left to their own devices to heal, people instantaneously understood that we need to address this major deficit in the cancer care continuum.
But understanding the need and addressing it are two different things. There are many barriers to overcome when it comes to insuring that cancer survivors receive the kind of comprehensive and well-integrated rehabilitation services that so many others who are ill or injured receive. There are few healthcare providers who have had sufficient training and experience in oncology rehabilitation medicine, and while insurance companies generally reimburse for this care, rehabilitation professionals typically don't have much experience with how to code and bill for office or therapy visits.
So, the next step was finding a fast and effective way to train healthcare providers in how to provide oncology rehabilitation services. To do this, I founded a company called Oncology Rehab Partners. The goal of this company is to advance survivorship care by training healthcare providers in how to deliver comprehensive oncology rehabilitation services. Hospitals can utilize existing resources (including clinical personnel) and quickly and expertly develop a STAR (survivorship training and rehabilitation) program. With online training that complements their extensive clinical care experience, physicians/physician assistants, oncology nurses/nurse practitioners and physical/occupational/speech therapists can all become STAR Clinician Certified once they've taken a comprehensive course and demonstrated competence by passing a series of tests.
My daughter is now 10 years old. Her memories of my cancer have faded. If she sees an old photograph of me during treatment, she sometimes will ask, "Mom, who is that?" My response, "That is a woman who refused to accept a new normal before healing as well as possible."
Julie Silver, MD is an assistant professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation. She is the author of many award-winning books including What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope (American Cancer Society). Dr. Silver is the founder of Oncology Rehab Partners, a healthcare company dedicated to advancing survivorship care with oncology rehabilitation.
Tags:
Mick
I was also glad mine was over. I was about like you for at least the first month. sleepless nights, the ambien helped a little. The worst for me was the dry mouth/mucous. I used the salt/baking soda combo which helped. I had my body clock mixed up for that first month if not longer and napped during the day like you. I also lost a lot of muscle mass and have worked my rear off to try and get some back. I do not know if the weight I lost(30 lbs) I want to gain it all back. Hang in there as others have said, it will get better. Best Wishes
Dave0 -
Going forwardFire34 said:Glad Its Over
Mick
I was also glad mine was over. I was about like you for at least the first month. sleepless nights, the ambien helped a little. The worst for me was the dry mouth/mucous. I used the salt/baking soda combo which helped. I had my body clock mixed up for that first month if not longer and napped during the day like you. I also lost a lot of muscle mass and have worked my rear off to try and get some back. I do not know if the weight I lost(30 lbs) I want to gain it all back. Hang in there as others have said, it will get better. Best Wishes
Dave
We all know how frustrating it can be, Mick. My recovery was quick, in comparison to most, but even with me it did take some time. The Vicodin did help in more ways than just the pain, Mick. I consider myself lucky in regards to my recovery. Took me several months to start gaining my weight back, which was fulfilled some 8-months after the last rad. You gotta keep the calorie intake happening: you got the PEG, so use it. I even supplemented with a 4.0 Jevity when I had graduated to an Ensure diet, post-treatment. Find what you need to keep the nutritional input going. My first food was pancakes w/Log Cabin, and lots of cold butter. Just cause the major part of the battle is over- does not mean the battle is over. Your body is still dealing with it all, and that's gonna continue for awhile. The best you can do is the good-calorie thing.
As for the other thing- we all have to deal with it. Hits every one of us. For me, knowing what I been thru, and what the others I come into contact have not had to go thru= kinda gives me an attitude of, shall we say, greater strength. Everyone you come into contact with has had life easier than you over the past year, Mick. They're living on fat easy-street. You, like we all have been, are a soldier returning from front-line battle with an enemy more ominous than just some punk kid with a gun that's hoping to get lucky with a shot. That punk kid did get lucky, and you took a major hit, but you were still able to fight back and send the kid and his buddies running for the hills. You're a war hero, Mick, as are we all. Of course, that punk kid is really the Spectre in disguise, and far from a punk kid. We all know that, and that's what makes the battle all the more important to win. I'm 17-months, but the dark clouds are still within view out on the periphery. Takes awhile for the dust of battle to settle, Mick, and I'm not sure it ever will. But, for you- know that at your stage the C is reeling from taking a major hit from you and your med team. The C is on the canvas, and might be down for a count that lasts for years. It ain't gotta hope of getting back up to resume the fight until the count of- what? That's the question we all face, Mick. Hawvet and Hondo, and Janymac, Jim and Joe, and ratface- they are proof that the ref's gonna be heard to say the number "7," and be thinking in terms of years. The C's taken a major hit, Mick. At best, it's an insignificant couple of cells still within you. Too soon for the C to be anything but that. The task at hand is not the C- it's the treatment recovery, which is all up to you. It's entirely your game, now. The Drs. take backstage to you, now. You've survived what they, and the C, did to you. It's time to heal. Will take time, but it will happen if you let it, as you will.
Your experience has been good for all of us.
Believe
kcass0 -
thanksKent Cass said:Going forward
We all know how frustrating it can be, Mick. My recovery was quick, in comparison to most, but even with me it did take some time. The Vicodin did help in more ways than just the pain, Mick. I consider myself lucky in regards to my recovery. Took me several months to start gaining my weight back, which was fulfilled some 8-months after the last rad. You gotta keep the calorie intake happening: you got the PEG, so use it. I even supplemented with a 4.0 Jevity when I had graduated to an Ensure diet, post-treatment. Find what you need to keep the nutritional input going. My first food was pancakes w/Log Cabin, and lots of cold butter. Just cause the major part of the battle is over- does not mean the battle is over. Your body is still dealing with it all, and that's gonna continue for awhile. The best you can do is the good-calorie thing.
As for the other thing- we all have to deal with it. Hits every one of us. For me, knowing what I been thru, and what the others I come into contact have not had to go thru= kinda gives me an attitude of, shall we say, greater strength. Everyone you come into contact with has had life easier than you over the past year, Mick. They're living on fat easy-street. You, like we all have been, are a soldier returning from front-line battle with an enemy more ominous than just some punk kid with a gun that's hoping to get lucky with a shot. That punk kid did get lucky, and you took a major hit, but you were still able to fight back and send the kid and his buddies running for the hills. You're a war hero, Mick, as are we all. Of course, that punk kid is really the Spectre in disguise, and far from a punk kid. We all know that, and that's what makes the battle all the more important to win. I'm 17-months, but the dark clouds are still within view out on the periphery. Takes awhile for the dust of battle to settle, Mick, and I'm not sure it ever will. But, for you- know that at your stage the C is reeling from taking a major hit from you and your med team. The C is on the canvas, and might be down for a count that lasts for years. It ain't gotta hope of getting back up to resume the fight until the count of- what? That's the question we all face, Mick. Hawvet and Hondo, and Janymac, Jim and Joe, and ratface- they are proof that the ref's gonna be heard to say the number "7," and be thinking in terms of years. The C's taken a major hit, Mick. At best, it's an insignificant couple of cells still within you. Too soon for the C to be anything but that. The task at hand is not the C- it's the treatment recovery, which is all up to you. It's entirely your game, now. The Drs. take backstage to you, now. You've survived what they, and the C, did to you. It's time to heal. Will take time, but it will happen if you let it, as you will.
Your experience has been good for all of us.
Believe
kcass
I dont think I have read anything in a long time, regarding the "C" or the experience,
that portrayed it as vividly accurate for you all as you just did Kent. Even those of us who havent been drafted in this war of wars could get a significant understanding of your analogy and be encouraged for you.
thank you.........0 -
thanks for the postratface said:Article follows
Wish we could post links here, but in the interim:
Julie Silver shares her story, about how she survived cancer and then survived treatment.
My then 3-year old daughter told me, "Mommy, you don't look pretty anymore." She was right. I was 38 years old and in the middle of chemotherapy for breast cancer. I didn't have any hair, including eyebrows and eyelashes. My skin had lost its usual coloring. I was in pain much of the time, and it showed on my face and in the way that I carried myself.
My daughter's six words were more than about beauty, though. They told the story of a child whose mother was gravely ill—fighting for her life and becoming sicker and sicker by the treatments designed to help her live.
"I'm a physician, and I knew I had to heal myself before I could heal others."
When I was finished with the acute cancer treatment, my wonderful oncologist encouraged me to go back to work. I'm a physician, and I knew I had to heal myself before I could heal others. It wasn't yet time for me to return to work. As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest.
It wasn't until I was the patient that I realized that oncology rehab barely existed at all. At the time, I was too sick to do anything about it, but I made a pledge that when I was well enough, I would help other cancer survivors heal as well as possible. I would take the words that are so often told to cancer survivors "you need to accept a new normal" and encourage them to not accept a new normal too soon. Instead I would encourage them to insist on receiving well-coordinated oncology rehabilitation care, and to heal as well as possible—whether their cancer was cured, in remission or they are living with cancer as a chronic condition.
"As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest."
I began by looking at the research in cancer rehabilitation, and wrote a book for survivors called After Cancer Treatment: Heal Faster, Better, Stronger(Johns Hopkins Press). Next, I began to educate my healthcare colleagues about the need for oncology rehabilitation to become the new "standard of care." I gave medical talks at Grand Rounds in hospitals all over the United States, wrote articles in medical journals and took every opportunity to share the many stories of cancer survivors who were suffering far more than they needed to.
One story I like to tell is about the woman who approached me at a community cancer event in the Ozarks. She handed me a picture of herself that was taken after her final chemotherapy treatment. In the photo, she is bald and wearing a pink graduation cap and gown that she made to celebrate the end of her cancer therapy. This woman said to me, "I graduated more than one year ago, and I still don't feel well. I don't know what to do. How can I heal?"
I had trouble finding anyone in healthcare, or in the cancer survivorship community, that encouraged cancer survivors to find ways heal on their own. But when I compared groups, such as the six million stroke survivors in the United States, most of whom will receive some rehabilitation if they have impairments, to the more than 12 million cancer survivors who are generally left to their own devices to heal, people instantaneously understood that we need to address this major deficit in the cancer care continuum.
But understanding the need and addressing it are two different things. There are many barriers to overcome when it comes to insuring that cancer survivors receive the kind of comprehensive and well-integrated rehabilitation services that so many others who are ill or injured receive. There are few healthcare providers who have had sufficient training and experience in oncology rehabilitation medicine, and while insurance companies generally reimburse for this care, rehabilitation professionals typically don't have much experience with how to code and bill for office or therapy visits.
So, the next step was finding a fast and effective way to train healthcare providers in how to provide oncology rehabilitation services. To do this, I founded a company called Oncology Rehab Partners. The goal of this company is to advance survivorship care by training healthcare providers in how to deliver comprehensive oncology rehabilitation services. Hospitals can utilize existing resources (including clinical personnel) and quickly and expertly develop a STAR (survivorship training and rehabilitation) program. With online training that complements their extensive clinical care experience, physicians/physician assistants, oncology nurses/nurse practitioners and physical/occupational/speech therapists can all become STAR Clinician Certified once they've taken a comprehensive course and demonstrated competence by passing a series of tests.
My daughter is now 10 years old. Her memories of my cancer have faded. If she sees an old photograph of me during treatment, she sometimes will ask, "Mom, who is that?" My response, "That is a woman who refused to accept a new normal before healing as well as possible."
Julie Silver, MD is an assistant professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation. She is the author of many award-winning books including What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope (American Cancer Society). Dr. Silver is the founder of Oncology Rehab Partners, a healthcare company dedicated to advancing survivorship care with oncology rehabilitation.
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I just read about this Dr. and ordered her book
Super Healing. Im interested in what she has to
say. Im so glad that someone has started the ball
rolling on a specific protocol for the after effects
or rehab of the cancer patient.
thanks for posting!!0
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