agony
Comments
-
omg1012OMG 1012 said:Hi--
Just to let you know, I am 11 days done with my TX and it does get better--
My Dr also prescribed hydrocodones. I could not sleep because the pain was so bad--Just make sure to ask your Dr about taking stool softeners as these pills will constipate you.
I will tell you, with out the stool softeners i think I would have died! I took 2 at night and 2 in the am they helped tremendously I am still taking them and they keep things moving along well when I do go, which has only been every few days as compared to myu usual 1x a day before TX
Hi omg, thanks for telling me that it gets better. My worst pain is internal; I can deal with the external (so far) but not the internal. I'm not even sure what's going on in there; fissure, ulcer, exposed nerve, who knows. I take magnesium for hypertension and will take extra (it has a laxitive effect) but will also pick up some stool softeners. Was your pain internal or external? Did you take a laxative in addition to the stool softeners? I'm on a three-day break from the radiation due to the holiday today and don't feel any difference in the pain when I "go."
0 -
Pain everywhereLaCh said:omg1012
Hi omg, thanks for telling me that it gets better. My worst pain is internal; I can deal with the external (so far) but not the internal. I'm not even sure what's going on in there; fissure, ulcer, exposed nerve, who knows. I take magnesium for hypertension and will take extra (it has a laxitive effect) but will also pick up some stool softeners. Was your pain internal or external? Did you take a laxative in addition to the stool softeners? I'm on a three-day break from the radiation due to the holiday today and don't feel any difference in the pain when I "go."
I had pain everywhere. there seems to be something about a 1 to 2 week delay with the affects associated with this treatment--that is the amount of time that things seem to peak and then start to receed (at least in my case) I took stool softeneers from the start of treatment to make sure things were not FORCED down there. I did not take any laxatives for fear of diahreah. The softeners seemed to do the trick to keep things soft when it is time to go BUT not create urgency. I was so sore down there (mostly outside ALL the time and inside only for about 1 hr after I went) that I did not want to take a chance on diahreah.
I actually had a week long break between Christmas & New Years when things got so bad down there, (I finished my last chemo on Dec 22 and by Dec 26th the pain---- was HORRIBLE mostly when i tried to urinate, it felt like a branding iron was in my uretha all the way to my bladder) and I did not have a BM for a whole week! I think my body was afraid to go LOL.
Hang in there----your doggie needs you to walk it
0 -
omg1012 quitsOMG 1012 said:Pain everywhere
I had pain everywhere. there seems to be something about a 1 to 2 week delay with the affects associated with this treatment--that is the amount of time that things seem to peak and then start to receed (at least in my case) I took stool softeneers from the start of treatment to make sure things were not FORCED down there. I did not take any laxatives for fear of diahreah. The softeners seemed to do the trick to keep things soft when it is time to go BUT not create urgency. I was so sore down there (mostly outside ALL the time and inside only for about 1 hr after I went) that I did not want to take a chance on diahreah.
I actually had a week long break between Christmas & New Years when things got so bad down there, (I finished my last chemo on Dec 22 and by Dec 26th the pain---- was HORRIBLE mostly when i tried to urinate, it felt like a branding iron was in my uretha all the way to my bladder) and I did not have a BM for a whole week! I think my body was afraid to go LOL.
Hang in there----your doggie needs you to walk it
I'm ready to call it quits. This pain can't be "normal." Going to the bathroom was painful weeks ago, now it's simply unbearable. This just can't be normal even given that I'm being treated. There's something going on inside, no one knows what it is, none of the doctors care to know what it is, they just say treatment=pain, that's normal, let's just keep going. I've done everything I could, I've done everything asked of me but now they've got to put their heads together and figure out what's actually going on inside and do something about it. I've just come off of a three-day break and each time I think that the pain can't possibly be worse, it is. I can't think, can't breathe, can't hear or see when I go to the bathroom, can't even stand up from the toilet when I'm done, the pain is so bad. I took oxycodone and it didn't touch the pain, put me to sleep, made me nauseous, and did nothing for the pain when I go to the bathroom. What's the cause of the pain? No one knows. I don't care about the treatments, I don't care about the tumor, I don't care about normal or abnormal, I only care about the pain. I have a high pain tolerance but this is way beyond me.
0 -
PainLaCh said:omg1012 quits
I'm ready to call it quits. This pain can't be "normal." Going to the bathroom was painful weeks ago, now it's simply unbearable. This just can't be normal even given that I'm being treated. There's something going on inside, no one knows what it is, none of the doctors care to know what it is, they just say treatment=pain, that's normal, let's just keep going. I've done everything I could, I've done everything asked of me but now they've got to put their heads together and figure out what's actually going on inside and do something about it. I've just come off of a three-day break and each time I think that the pain can't possibly be worse, it is. I can't think, can't breathe, can't hear or see when I go to the bathroom, can't even stand up from the toilet when I'm done, the pain is so bad. I took oxycodone and it didn't touch the pain, put me to sleep, made me nauseous, and did nothing for the pain when I go to the bathroom. What's the cause of the pain? No one knows. I don't care about the treatments, I don't care about the tumor, I don't care about normal or abnormal, I only care about the pain. I have a high pain tolerance but this is way beyond me.
I am so frustrated for you! I wish we could all be there in person to help each other. Pain is such a difficult thing to evaluate and treat. What is a level 5 for one is off the charts for another. Then a med that works for one doesn't touch it on the next. There is a big difference between oxycontin and oxycodone. I too was not phased by the oxycodone at first. When I started a routine of oxycontin (time release/long lasting) every 12hrs with oxycodone (rapid release) for break through pain, I finally felt like myself. I will admit that I was on a fairly high dose of the oxycontin though (80MG) at the end. Its funny, well not really, but until cancer I barely ever even took a tylenol, I was the one who delivered 5 babies with no drugs, convinced myself that "pain is mental", walk it off......some of that is still me. At some point early on in this journey though I just gave in and thankfully so. My oncology assistant was so persuasive in making me see that in order to heal I had to have a combination of sleep and exercise, and in order to do that I had to have some pain relief. She was helpful throughout treatment and recovery, and then later, in weaning off the pain meds.
I love reading your posts....your words say you are not managing well and you are short tempered, but that is maybe just the fight you need???? Or at least I hope. Its been almost 2yrs since I was diagnosed, and although in my minds eye I can see me withering on my knees in pain over the side of my bed, the physical pain is long gone. I know you will get there too.
As always, all in my prayers....(with some extras tonight)
0 -
eihtakeihtak said:Pain
I am so frustrated for you! I wish we could all be there in person to help each other. Pain is such a difficult thing to evaluate and treat. What is a level 5 for one is off the charts for another. Then a med that works for one doesn't touch it on the next. There is a big difference between oxycontin and oxycodone. I too was not phased by the oxycodone at first. When I started a routine of oxycontin (time release/long lasting) every 12hrs with oxycodone (rapid release) for break through pain, I finally felt like myself. I will admit that I was on a fairly high dose of the oxycontin though (80MG) at the end. Its funny, well not really, but until cancer I barely ever even took a tylenol, I was the one who delivered 5 babies with no drugs, convinced myself that "pain is mental", walk it off......some of that is still me. At some point early on in this journey though I just gave in and thankfully so. My oncology assistant was so persuasive in making me see that in order to heal I had to have a combination of sleep and exercise, and in order to do that I had to have some pain relief. She was helpful throughout treatment and recovery, and then later, in weaning off the pain meds.
I love reading your posts....your words say you are not managing well and you are short tempered, but that is maybe just the fight you need???? Or at least I hope. Its been almost 2yrs since I was diagnosed, and although in my minds eye I can see me withering on my knees in pain over the side of my bed, the physical pain is long gone. I know you will get there too.
As always, all in my prayers....(with some extras tonight)
Thanks Eihtak. I feel like I've been thrown to the sharks. Got pain? Take this. Doesn't help? Oh well. I regret my decision to treat the tumor. My father died of lung cancer and suffered through 18 months of chemo with no quality of life, then he died. My mother died of lung cancer, didn't treat it and had two good quality of life years before she died. I think I made the wrong decision in treating the tumor. Some anal fissures never heal. That said, no one even knows if that's what this is. As for handling it well, I don't even know what that would entail. I don't know how I could handle this better. I have a high tolerance for pain and always have. This pain is different. If the last 5 weeks mean anything, I'll be awake all night with this pain. I've had injuries, surgeries, pain but this is a wholly different thing. And what do the doctors say? Keep going. I don't have an oncology assistant, I have a radio oncologist that doesn't listen, doesn't answer questions and defers to another doctor to figure out what's going on. That doctor (who I actually like quite a lot) prescribes pain meds and says "you have to finish," a medical oncologist who says, "How's the pain? Not good? I'm sorry." I'd label my pain level now at a 10, in between bathroom visits. When I go to the bathroom, there's no number to put to it. I can't take pain meds right now because I'm having sedation tomorrow to have the port removed. Tomorrow I'll have to think of what I want to do, in the light of day.
0 -
LaCh
I hope you can get some sleep tonight. You do need your rest. I am also sorry about your parents passing. The difference for you, is that your cancer does not have to be fatal if you get treatment. I hope all goes well tomorrow. I think you can take Tylenol before the port comes out! No?
I know it sounds silly, but really, have you tried distracting your mind with something? I resorted to computer games when the pain was so bad that I couldn't think straight enough to read. It has been shown to work, really. My dentist uses it in lieu of novacaine. Also, prayer or meditation. I think the doctors really want to get you through this, but there really isn't much they can do, other than to prescribe medication for the pain. The pain from the treatment is nothing compared to the pain from anal cancer with no treatment. Dying from cancer is very painful. Don't even think about that as an option.
You really need to get through this to survive. You really do. I will pray that you are able to do this with minimum pain. Good luck tomorrow.0 -
LaChLaCh said:omg1012 quits
I'm ready to call it quits. This pain can't be "normal." Going to the bathroom was painful weeks ago, now it's simply unbearable. This just can't be normal even given that I'm being treated. There's something going on inside, no one knows what it is, none of the doctors care to know what it is, they just say treatment=pain, that's normal, let's just keep going. I've done everything I could, I've done everything asked of me but now they've got to put their heads together and figure out what's actually going on inside and do something about it. I've just come off of a three-day break and each time I think that the pain can't possibly be worse, it is. I can't think, can't breathe, can't hear or see when I go to the bathroom, can't even stand up from the toilet when I'm done, the pain is so bad. I took oxycodone and it didn't touch the pain, put me to sleep, made me nauseous, and did nothing for the pain when I go to the bathroom. What's the cause of the pain? No one knows. I don't care about the treatments, I don't care about the tumor, I don't care about normal or abnormal, I only care about the pain. I have a high pain tolerance but this is way beyond me.
I had pain such as you describe my entire last week of treatment. It was more horrible than I could ever have imagined. I dreaded each trip to the bathroom, whether it was to have a BM or urinate. I feel for you, I really do. But I hope you will not quit because your cancer CAN be beaten. The last few radiation treatments are critical to complete, as they are most likely aiming all of the radiation at the tumor only at that point. It is called "coning down." Knowing that doesn't make your pain go away, I realize, but it really is a crucial part of successful treatment. I was where you are at when I had three more treatments--ready to give up. My savior was a good friend who placed a well-timed phone call to me. I cried and cried over the phone and told her I could not go on. She was not about to let me quit and threatened to drive 600 miles to come stay with me until I finished treatment. At that point I knew I had to go on, knowing that someone cared enough about me to make such an offer (or threat!). Talking helps and I hope you have a close friend who you can call who will just listen to you unload.
As for the doctors' response, I believe that their use of the word "normal" only applies, of course, to someone going through this treatment and that they've seen many patients go through this exact thing. Other than pain meds, there probably isn't much they can do to alleviate your pain. I once asked my colorectal doctor what would have happened had I chosen not to do treatment. Her candid response to me was "your death will be very painful." She minces no words. With that in mind, it was easy for me to reconcile doing treatment and sticking it out to the very end. I realized my relatively brief but painful treatment was a huge tradeoff for years of a very full life.
I know at this point, the minutes seem like hours and the hours like days. But please hang in there and do not give up. I could not have lived with myself had I done that, even if I had beaten the cancer with a shorter course of treatment. Keep venting here, we are listening to you, even if we don't know how to ease your pain.
0 -
marynbMarynb said:LaCh
I hope you can get some sleep tonight. You do need your rest. I am also sorry about your parents passing. The difference for you, is that your cancer does not have to be fatal if you get treatment. I hope all goes well tomorrow. I think you can take Tylenol before the port comes out! No?
I know it sounds silly, but really, have you tried distracting your mind with something? I resorted to computer games when the pain was so bad that I couldn't think straight enough to read. It has been shown to work, really. My dentist uses it in lieu of novacaine. Also, prayer or meditation. I think the doctors really want to get you through this, but there really isn't much they can do, other than to prescribe medication for the pain. The pain from the treatment is nothing compared to the pain from anal cancer with no treatment. Dying from cancer is very painful. Don't even think about that as an option.
You really need to get through this to survive. You really do. I will pray that you are able to do this with minimum pain. Good luck tomorrow.Thanks marynb,
It’s good to know that someone else has been where I am. What you describe is exactly my situation. I just had the port removed which is a very good thing but I’ve been up all night—literally all night, in the bathroom every 30 or 40 minutes in incapacitating pain, screaming into the towel and hoping that I’d die of a stroke or a heart attack. In lieu of that, since my pain is 85% internal, I decided upon a plan; in order to avoid all bowel movements I was going to ingest nothing but clear Ensure, take stool softeners and oxycodone. Well, turns out that clear Ensure is nothing but high fructose corn syrup, water and sugar. I want to avoid eating anything that’s going to necessitate going to the bathroom (or decrease it since anything that goes in your mouth comes out your butt) but drinking sugar water isn’t the way; I’ll starve. I’ve lost 12 pounds since this all began and 5 of them were in the last week alone. I’m thinking of clear broth maybe but need to find some with low or no sodium. I’m aware of the phased protocol; I had my first tumor-only irradiation last Friday and the 2nd today; I have 5 left. But going to the bathroom must be avoided at all costs; I just don’t know quite how to achieve that. A few questions. Was your pain mostly internal in origin? How long after treatments did it go away? Was the cause ever identified? Fissure? Ulcers? Something else? As I said, it’s good to know that someone else has experienced what I’m experiencing—to a point—because in the end, it doesn’t change my situation or mitigate the pain and I’m at the end of my rope, frustrated, exhausted, depleted, done. Anyway, thanks for your words. They’re very appreciated.
0 -
(((((((HUGS))))))) and moreLaCh said:eihtak
Thanks Eihtak. I feel like I've been thrown to the sharks. Got pain? Take this. Doesn't help? Oh well. I regret my decision to treat the tumor. My father died of lung cancer and suffered through 18 months of chemo with no quality of life, then he died. My mother died of lung cancer, didn't treat it and had two good quality of life years before she died. I think I made the wrong decision in treating the tumor. Some anal fissures never heal. That said, no one even knows if that's what this is. As for handling it well, I don't even know what that would entail. I don't know how I could handle this better. I have a high tolerance for pain and always have. This pain is different. If the last 5 weeks mean anything, I'll be awake all night with this pain. I've had injuries, surgeries, pain but this is a wholly different thing. And what do the doctors say? Keep going. I don't have an oncology assistant, I have a radio oncologist that doesn't listen, doesn't answer questions and defers to another doctor to figure out what's going on. That doctor (who I actually like quite a lot) prescribes pain meds and says "you have to finish," a medical oncologist who says, "How's the pain? Not good? I'm sorry." I'd label my pain level now at a 10, in between bathroom visits. When I go to the bathroom, there's no number to put to it. I can't take pain meds right now because I'm having sedation tomorrow to have the port removed. Tomorrow I'll have to think of what I want to do, in the light of day.
(((((((HUGS))))))) and more (((((((Hugs))))))). It has been a year since since I finished treatment, but I just went back and read my rather cryptic discriptions of my Txs. I wrote:
"I cannot do this anymore. I have never, ever, hurt soooooo badly. It is like pooping razorblades from an anus that is literally on fire and burning as I go".
I hurt so bad that I am screaming into my hands and crying until my head aches and I throw up. I barely make the 10 feet from the toilet to the bed where I involuntarily go down on my knees with my head and torso across the bed. Why did I choose treatment? I CAN'T DO THIS!"
That was dated end of September... I finished treatment middle of October..
Did not heed docs suggestions that I not ride the two day trip home.. Complicated things majorly... (this part you DO NOT HAVE TO DO.)Still by middle of November I rarely took anything for pain and was gaining strength. If I had done as suggested and not driven home the day after treatment I believe I would have been well on the way to healing By the end of October.
My doctor explained that the radiation truly did burn the "insides" as well as the outsides. Stool softeners and pain meds help. Only time HEALS.
Please, please keep posting and venting to us, the ones who have walked that road. As Martha said - we can't make the pain better, but we sure can empathize.0 -
lorikatLorikat said:(((((((HUGS))))))) and more
(((((((HUGS))))))) and more (((((((Hugs))))))). It has been a year since since I finished treatment, but I just went back and read my rather cryptic discriptions of my Txs. I wrote:
"I cannot do this anymore. I have never, ever, hurt soooooo badly. It is like pooping razorblades from an anus that is literally on fire and burning as I go".
I hurt so bad that I am screaming into my hands and crying until my head aches and I throw up. I barely make the 10 feet from the toilet to the bed where I involuntarily go down on my knees with my head and torso across the bed. Why did I choose treatment? I CAN'T DO THIS!"
That was dated end of September... I finished treatment middle of October..
Did not heed docs suggestions that I not ride the two day trip home.. Complicated things majorly... (this part you DO NOT HAVE TO DO.)Still by middle of November I rarely took anything for pain and was gaining strength. If I had done as suggested and not driven home the day after treatment I believe I would have been well on the way to healing By the end of October.
My doctor explained that the radiation truly did burn the "insides" as well as the outsides. Stool softeners and pain meds help. Only time HEALS.
Please, please keep posting and venting to us, the ones who have walked that road. As Martha said - we can't make the pain better, but we sure can empathize.hey Lorikat...
Yes, that's the pain... Indescribable, incapacitating, crippling, ubable to rise from the toilet to return to the bed... so how long after the final treatment did the pain subside? how long before it was gone? I'm trying not to eat anything solid, nothing at all while knowing that it's a bad idea but unable to contemplete even one more bowel movement and willing to do anything (almost) to avoid it. Thanks for letting me know that what I have, others have had too.
0 -
To LaCH
I think I am at about the same place in this process as your are LaCH. I have 8 more radiation treatments left, including today. I just spent a horrible couple of days and nights running back and forth to the bathroom. I swear it feels like you're giving birth every time. And I'm having extreme cramping. I can't take a sip of water without my stomach seizing up. I haven't figured out the food thing. It all comes back out no matter what. I was surprised this time that Immodium didn't help at all. I finally broke down Sunday afternoon and took a Loritab. If nothing else, it helped my mood. I was in a dark place. I have lost 10 lbs over the course of this. My appetite was fine until the BM's got painful, other than my time on chemo. Now I am afraid of food. My chemo disconnected from my PICC line Friday so had to make an emergency trip back to Huntsman. The nurse discovered that my PICC line was clotted before she flushed it so thank God she had me come in instead of my husband or a home nurse flushing the clots back in to me. Yes, this has been a journey, and I am so looking forward to doing the things I love again, cancer free. I miss cooking the most and riding my horse. And I swear I am going to be a better person for having had to go thru this. Life is prescious. And I can't help but think about all the people I have loved and lost to this disease, my father this year included. I think about their strength. My girlfriend fought ovarian cancer for 7 damn years. She must have been exhausted. I can do two months, especially with the success rate as high as it is. It will soon be behind us. Hang in there. I don't think I necessarily have a high tolerance for pain, but my husband is amazed at how well I'm taking this. He hears me cry and the awful thing is that he can't do a thing to help. We are on our own. We're stronger than we think...
0 -
pamela_preibpamela_preib said:To LaCH
I think I am at about the same place in this process as your are LaCH. I have 8 more radiation treatments left, including today. I just spent a horrible couple of days and nights running back and forth to the bathroom. I swear it feels like you're giving birth every time. And I'm having extreme cramping. I can't take a sip of water without my stomach seizing up. I haven't figured out the food thing. It all comes back out no matter what. I was surprised this time that Immodium didn't help at all. I finally broke down Sunday afternoon and took a Loritab. If nothing else, it helped my mood. I was in a dark place. I have lost 10 lbs over the course of this. My appetite was fine until the BM's got painful, other than my time on chemo. Now I am afraid of food. My chemo disconnected from my PICC line Friday so had to make an emergency trip back to Huntsman. The nurse discovered that my PICC line was clotted before she flushed it so thank God she had me come in instead of my husband or a home nurse flushing the clots back in to me. Yes, this has been a journey, and I am so looking forward to doing the things I love again, cancer free. I miss cooking the most and riding my horse. And I swear I am going to be a better person for having had to go thru this. Life is prescious. And I can't help but think about all the people I have loved and lost to this disease, my father this year included. I think about their strength. My girlfriend fought ovarian cancer for 7 damn years. She must have been exhausted. I can do two months, especially with the success rate as high as it is. It will soon be behind us. Hang in there. I don't think I necessarily have a high tolerance for pain, but my husband is amazed at how well I'm taking this. He hears me cry and the awful thing is that he can't do a thing to help. We are on our own. We're stronger than we think...
Hey Pamela,
Yes, for sure, it sounds like we're pretty much in the same place. Funny, although I don't fear food, I fear what's bound to happen when the food exits my body and so I'm eating nothing, literally nothing until I figure out what to eat, but I'm like the proverbial sailor lost at sea, ready to eat anything that crosses my path (or at least fantasizing about it, foods I don't eat; pizza, cheeseburgers, lasagna--I think about them a lot although I'm mostly vegetarian. I've had and still have the same experience that you have with urgency; even a small sip of water triggers peristalsis and a minute after or less and I'm in the bathroom. I've also thought about people who fight this disease for months and years and while I respect their strength and resolve, and even marvel at it, I see this situation as separate and different. Comparisons (for me) are useful to only a limited degree. I've also had people admire my strength and I'm always at a loss as to how to respond. There were always only two choices, to treat it ir not to treat it and if you decide to treat it, you just..treat it. Strength is simply doing what you need to do but that decision was already made. Anyway, that's my take. On a more personal and personally important issue for me, I resolved at the outset of this whole thing to be a better person, to be more patient, less short tempered, kinder, more considerate and what will stick with me more that the fact that I survived cancer (as I assume that I will) is how badly I failed to do what I tried to do. That's my biggest take-away from this and it's hit me pretty hard. Am I a better person? No, I'm not, I'm the same person and the changes I wanted to make and resolved to make are just as elusive as ever they were. That's my biggest take-away from all this. Not good. Not good. As it hapens, it seems to me that challenges bring outwhatever qualities you already have the good and the bad rather than imparting new ones, ones that maybe you wish that you had. So I'm not in a real good mood either, which is a wholly separate issue from my physical challenges. What you said it true and something that I've often reflected upon; this is a solitary path; everyone else, no matter how much they might want to lighten the burden, can't, and are relegated to simple bystanders. You, me, we're all in this alone. Sharing experiences, advice, suggestions and the like are very helpful, but in the middle of the night, when the world is sleeping and you're screaming into your towel as you sit on the toilet, you're quite alone. Is life precious? Yes, I believe that it is. But I'm still not sure that I made the right choice in treating the cancer, and I may never be, partly due to my belief in the cycle of reincarnation, partly due to the fact that I've lived 59 years and am approaching an age when, if I were to die, it's becoming less likely that people would say, "Wow, so young..." and other things. Anyway, In thak tyou for letting me know that you're yet another person who' experiencing this crippling pain and also is having an aversion to eating, simply because what goes in, must come out. What's the solution to THAT? I wish I knew. I'm very hungry, but simply can NOT have another night like I had last night. Or the night before. Or the night before that. Anyway...thanks for your words.
0 -
LaCh
Great that you got thay port out and you made it through another night! The pain for me was all over and it would be hard to localize it. Just lots of pain. I remember I had about 5 flower arrangements deleivered and I put them all in the bathroom, because that is where I spent all my time. It made it a tad more pleasant. I took my ipad into the bathroom and focused on my angry birds game.....lol. I became some sort of a master..... It really distracted me. Trust me, I had never played before and I have not played after about 2 weeks from completion of treatment. Also, I am Catholic, so I meditated on the rosary quite a bit. It all helped me.
About 2 weeks qfter treatment my skin was totally healed and I felt pretty well. About 10 weeks after treatment, I was well enough to undergo major surgery for another cancer. So, the healing is pretty quick if you get the right nutrition. For now, have you tried broth or chicken soup.
Also, it might be good for you now to let someone help you out for the next couple of weeks. I know you value your privacy, but if you would allow someone to at least make you some healthy soups and smoothies?
Hang in there. You are going to beat this!
Praying for you to finish this treatment!0 -
LaCh
Great that you got thay port out and you made it through another night! The pain for me was all over and it would be hard to localize it. Just lots of pain. I remember I had about 5 flower arrangements deleivered and I put them all in the bathroom, because that is where I spent all my time. It made it a tad more pleasant. I took my ipad into the bathroom and focused on my angry birds game.....lol. I became some sort of a master..... It really distracted me. Trust me, I had never played before and I have not played after about 2 weeks from completion of treatment. Also, I am Catholic, so I meditated on the rosary quite a bit. It all helped me.
About 2 weeks after treatment my skin was totally healed and I felt pretty well. About 10 weeks after treatment, I was well enough to undergo major surgery for another cancer. So, the healing is pretty quick if you get the right nutrition. For now, have you tried broth or chicken soup.
Also, it might be good for you now to let someone help you out for the next couple of weeks. I know you value your privacy, but if you would allow someone to at least make you some healthy soups and smoothies?
Hang in there. You are going to beat this!
Praying for you to finish this treatment!0 -
marynbMarynb said:LaCh
Great that you got thay port out and you made it through another night! The pain for me was all over and it would be hard to localize it. Just lots of pain. I remember I had about 5 flower arrangements deleivered and I put them all in the bathroom, because that is where I spent all my time. It made it a tad more pleasant. I took my ipad into the bathroom and focused on my angry birds game.....lol. I became some sort of a master..... It really distracted me. Trust me, I had never played before and I have not played after about 2 weeks from completion of treatment. Also, I am Catholic, so I meditated on the rosary quite a bit. It all helped me.
About 2 weeks qfter treatment my skin was totally healed and I felt pretty well. About 10 weeks after treatment, I was well enough to undergo major surgery for another cancer. So, the healing is pretty quick if you get the right nutrition. For now, have you tried broth or chicken soup.
Also, it might be good for you now to let someone help you out for the next couple of weeks. I know you value your privacy, but if you would allow someone to at least make you some healthy soups and smoothies?
Hang in there. You are going to beat this!
Praying for you to finish this treatment!Thanks Marynb,
When you say that after2 weeks your skin was healed, do you mean inside and outside or just outside? I kind of assume that the outside will heal pretty quickly; I'm more concerned about whatever's going on inside. And yeah, I'm going to try to get some broth. Thanks.
0 -
internal pain
LaCh,
I had so much internal pain in addition to the pain of the external burns/blisters. It was explained to me that my insides were blistered as well. I took both long-acting oxycontin and fast-release oxycodone. I started the oxycontin about 5 weeks in (still 2 weeks of radiation to go) at 10mg twice a day and then went up to 20mg twice a day starting in the last week. I well remember the sobbing and groaning that I did on the toilet and was so glad that I was alone with my pain. I am now 3 months out of treatment and have just talked to my rad onc and my surgeon about tapering off the oxycontin. I may always have some momentary pain with a BM. I have scar tissue and it just isn't going to be as elastic as other rectal/anal tissue. What I notice now is that it hurts some but I don't sob and groan and the pain is over soon after the BM. Stool softeners and magnesium and metamucil seem to be doing the trick with helping me find a normal-ish pattern and stool. I don't know what it's going to be like when I'm off the meds. They were essential for getting me through to this point and I'll be glad to be off them but I do worry about what comes next.
0 -
LachLaCh said:marynb
Thanks Marynb,
When you say that after2 weeks your skin was healed, do you mean inside and outside or just outside? I kind of assume that the outside will heal pretty quickly; I'm more concerned about whatever's going on inside. And yeah, I'm going to try to get some broth. Thanks.
I'm 6 weeks post treatment. For me, I think it was day 11 post treatment that I didn't feel the sting of peeing. The genital skin started healing day 8-10 and was pretty much clear by day 20. The anus pain was equivalent to a hemmie for the first 4 weeks. I kept my stool soft but not runny (cause runny stool is more acidic) during that time. I'm almost back to normal on the pee and poo side of things. I still carry a bag with me for accidents should I have them and I know where every restroom in every place I go to. I'm back to work, in slacks and dresses. No jeans yet and definitely no stockings..lol.
You can do this..I know it's tough but God made us stronger.
Much love - Gigi
0 -
LaChLaCh said:pamela_preib
Hey Pamela,
Yes, for sure, it sounds like we're pretty much in the same place. Funny, although I don't fear food, I fear what's bound to happen when the food exits my body and so I'm eating nothing, literally nothing until I figure out what to eat, but I'm like the proverbial sailor lost at sea, ready to eat anything that crosses my path (or at least fantasizing about it, foods I don't eat; pizza, cheeseburgers, lasagna--I think about them a lot although I'm mostly vegetarian. I've had and still have the same experience that you have with urgency; even a small sip of water triggers peristalsis and a minute after or less and I'm in the bathroom. I've also thought about people who fight this disease for months and years and while I respect their strength and resolve, and even marvel at it, I see this situation as separate and different. Comparisons (for me) are useful to only a limited degree. I've also had people admire my strength and I'm always at a loss as to how to respond. There were always only two choices, to treat it ir not to treat it and if you decide to treat it, you just..treat it. Strength is simply doing what you need to do but that decision was already made. Anyway, that's my take. On a more personal and personally important issue for me, I resolved at the outset of this whole thing to be a better person, to be more patient, less short tempered, kinder, more considerate and what will stick with me more that the fact that I survived cancer (as I assume that I will) is how badly I failed to do what I tried to do. That's my biggest take-away from this and it's hit me pretty hard. Am I a better person? No, I'm not, I'm the same person and the changes I wanted to make and resolved to make are just as elusive as ever they were. That's my biggest take-away from all this. Not good. Not good. As it hapens, it seems to me that challenges bring outwhatever qualities you already have the good and the bad rather than imparting new ones, ones that maybe you wish that you had. So I'm not in a real good mood either, which is a wholly separate issue from my physical challenges. What you said it true and something that I've often reflected upon; this is a solitary path; everyone else, no matter how much they might want to lighten the burden, can't, and are relegated to simple bystanders. You, me, we're all in this alone. Sharing experiences, advice, suggestions and the like are very helpful, but in the middle of the night, when the world is sleeping and you're screaming into your towel as you sit on the toilet, you're quite alone. Is life precious? Yes, I believe that it is. But I'm still not sure that I made the right choice in treating the cancer, and I may never be, partly due to my belief in the cycle of reincarnation, partly due to the fact that I've lived 59 years and am approaching an age when, if I were to die, it's becoming less likely that people would say, "Wow, so young..." and other things. Anyway, In thak tyou for letting me know that you're yet another person who' experiencing this crippling pain and also is having an aversion to eating, simply because what goes in, must come out. What's the solution to THAT? I wish I knew. I'm very hungry, but simply can NOT have another night like I had last night. Or the night before. Or the night before that. Anyway...thanks for your words.
Once again I love reading your posts. I truely hope you keep in touch many years from now, whether that be here as we are now (only better), or in some state of reincarnation????? I think again though you do not give yourself enough credit. The being more kind, patient, and considerate will come to you in time. These are qualities not aquired overnight and would have no real meaning until you have suffered sufficiently to truely value them. Yes, you have suffered sufficiently, so maybe you just have to start believing that you are becoming a better person. I didn't know you before, but get the feeling you were all ready pretty good!
Hang on.........
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards