Bad Nights
This was me reaching out on the colon club last night and Belle (NW Girl), Monique, and WAMO were there. Thank you God for leading me to the Colon Club and for these caring women who got me through tonight.
(Me) Nights seem worse. Diarrhea seems more frequent, not making it to the toliet more, more pain and anxiety. She's taking oxicodone 2 pills every 4 hours. At night, it's not enough. Right now she has almost an hour before next dose and pain level is rapidly increasing. Do I absolutely have to wait 4 hrs? She's straining due to constipation but there's frequent urgent diarrhea. Both are wreaking havoc on her butt. Tonight there's a little blood when she blots. I assume its hemmoroids from straining. She also complains about her bones hurting. She thought she dodged mouth sores this round of chemo, but tonight there popping up. I'm reading on this forum about those at all stages continuing on w/ life, jobs, hobbies. How in the world is that possible? Is mom's side effects normal? Oh and I went to initial mts with all doc and went to chemo class where the msg was not to suffer through but let them know of all side effects and they will find meds to relieve it. In fact the onc head nurse said the disease is tough, you don't have to be. But in the next breath makes it sound like tough it out, it is what it is.
Re: Bad Nights
by NWgirl on Wed Jun 18, 2008 12:11 am
My side effects from radiation were tough, but nothing like what your mother is experiencing. Of course I have a temporary ileostomy, which is a blessing during chemo/radiation as it all comes out in the bag - pain free, regardless of how bad the diahhrea is. As for bones hurting, she's not getting that nulestra (sp?) shot is she? (Yes, she had it last Friday) That causes a lot of people pain in their bones. How many more radiation treatments does she have? Once those things are over with, you can start to begin the count down to when she will start to feel some relief. For me it was about 2 weeks after radiation stopped, but hopefully hers will be quicker.That seems like a lot of oxicodone - I definitely would not increase it unless her doctor says its okay.When I went through radiation, there would have been no way I could have worked (I'm a stay at home Mom). I LIVED in my Lazy-Boy recliner for weeks. I read about people that continue to work as well and I don't know how they do it.I'm so sorry you and your mother are having to go through this. It breaks my heart every time I read your updates. I will continue to pray for you both.
by Monique on Wed Jun 18, 2008 12:28 am
I did not have to undergo radiation, but I found the side effects of chemo sometimes extremely painful. Thus, I am really, really sorry to hear about your Mum's side effects. When I was undergoing treatment my bowels were ravaged: constipation and ongoing diarrhea (sometimes as many as twenty - thirty trips to the bathroom), which resulted in some brutal fissures. I think that my bowel issues were the worst side effect of my treatment (and not to scare others, because certainly not everyone suffers from these things).Frankly, the only thing that seemed to take the edge off the pain was long, epson salt baths and, after a few chemotherapy treatments, knowing what to expect and preparing myself for the side effects. For instance, while experiencing constipation, I would eat prunes or drink prune juice (however, another poster remarked that prunes gave him the trots, so if your Mum is trying them out, I suggest that she only do so in moderation). When I was experiencing relentless diarrhea, I would take Imodium in the morning to nip things in the bud. I also ate a very bland diet (Google "BRAT"). This seemed to help somewhat. Although these things didn't cure the symptoms, they did seem to help a fair bit. I don't know if this will make your Mum feel any better, but I did not, and could not, continue with my hobbies, never mind my job or school. No way. By the way, I have a nurse friend who insists that no one's pain be more than a four out of ten. So, if your Mum is suffering more than a four out of ten, I would suggest you immediately speak to a doctor regarding pain management (as well as a nurse, as they are often even more helpful than the doctors and, in my experience, fantastic advocates). Also, my learned nurse friend said that the best way to treat pain is to treat it early, before it reaches a 4/10, otherwise it can be difficult subdue.Monique
(Me) Re: Bad Nights
by momsCancer on Wed Jun 18, 2008 12:39 am
Belle, I'm so glad you are there, do you not sleep either. I would have had her admitted to hospital last Monday if they would've agreed. I feel like such a downer and a terrible failure at mind over matter, this really seems impossible at times.Monday they told us no solid foods just clear fluids. She's doing miralax laxitive. She can't try to physicaaly move things b/c radiation burns. She hurts terribly when peeing, thought doing it in the tub of water might be an idea but initial hit if water is equally as bad. She just uncontrollbly shakes from pain. Oh, she's had 4 consecutive days off radiation, go back tomorrow, still 9 left.
Re: Bad Nights
by wamo on Wed Jun 18, 2008 2:20 am
I can hear your worry and pain in your message.... take a deep breath and know you are doing all you can to help your mom...My husband had rectal cancer and 6 weeks of radiation everyday M-F.... he tolerated it well until about 3/4 of the way through. He had the excruciating pain, uncontrollable shaking / shuddering from the pain when he tried to go to the bathroom. He also was on oxycodone... and as long as he wasn't driving he could have 2 every two hours... but sometimes that just isn't the right pain med for the pain receptors that are experiencing the pain. I would first ask onc if there was another thing to try... at one point they had him taking Motrin and Oxycodone and that helped a lot when he had a rectal abscess.Now this is really KEY..... SITZ BATH SITZ BATH SITZ BATHSSSSSSSSSSS. No one ever told us this would help despite our reporting in of his horrible pain from treatment. I got on the computer one night and saw a couple of references to do sitz baths to relieve the pain. My husband could have kissed my feet.... he said that was the ONLY thing that helped him. It was still tough and painful but frequent sitz baths helped over all with all of it. Basically, warm water in the tub, no soap... and you only need enough for the water to go just under your bum area... not a full on bath, I'd say 4 inches max water height. He couldn't believe none of the doctors ever mentioned something like this might help and boy did it! So at least try... It sucks, no doubt. And being a caregiver myself, it is the hardest thing in the world to watch someone you love in that much pain. I used to worry about how much pain meds and would he get addicted, etc. One time my pharmacist told me (we have become good friends since I see him so much) that when someone has cancer those concerns become secondary... your priority is to help them through their pain. So don't worry too much ok.Hang in there I know it feels like how can I do this another day sometimes, but you can and you will get through this time.Wamo
(Me) by momsCancer on Wed Jun 18, 2008 3:20 am
Did your husband lose it and say to leave him alone at points. It's 3am, 1 hr before next dose of oxycodone and her pain level is bad and climbing and anxiety through the roof. She wanted me to leave her alone, she was going to lay on towels on kitchen floor. I convinced her to get backin bed but that I'd stay in living rm to give her space. She's out of her head, I can't reach her. She thinks she is blocked and can't get relief. She hasn't had food for 2.5 days. she had enough liquids the past 2 days. Can I give her Lorazapam anxiety pill 2 hrs early.
Re: Bad Nights
by wamo on Wed Jun 18, 2008 4:46 am
Yes he did ask me to give him space in a sense... he couldn't talk for a while after bathroom attempts.... it would come on suddenly too be watery yet took all he had in him just to get it out... infact it was like his body was forcing him to push even though he didn't want to (he also has hemorrhoids). All I can do is relate what happened with us, I am no doctor and certainly don't want to act like I am one. So I have no idea if you should give that anxiety pill early or if that is a really bad thing to do.With our insurance we have a phone number to an advice nurse and if you have that too, I would call the heck out of that thing and let her know your mom's pain meds level and the pain scale rating she is at 1 being no pain and 10 being worst pain you could ever imagine. Let them guide you on all your worries. If you don't have that, perhaps you have a 24 hr number for oncology... there is probably an on-call oncologist always available. You would just call your cancer center and they would either give you a number to an advice nurse or page the oncologist or however they work it. You should not feel that you are alone in this. Make those calls describe everything and they will let you know if yes that is normal or is this happening also or get her to ER now or see oncologist first thing in the am or whatever is appropriate. But bottom line is take the pressures off of you. Your mom knows you are available to her, be close but give her space if that is what she needs to deal with this. We all have our ways of dealing with pain and feelings of desperation. This is cancer.... it is ugly at times. Stay on it enough so you are comfortable in knowing that you have asked all of the right questions and so on...I wish I could do more to help you and your mom. I am sorry for all that you both are going through.WAMO
Re: Bad Nights
(Me) by momsCancer on Wed Jun 18, 2008 4:50 am
Okay, at 4:00 when I brought her the Oxycodon she apologized. I told her it's okay, she has a right to lose it and be upset and angry. I felt her, she was burning up. Took her temp and it was 101.28. Called the nurse on call, gave 2 tylenol and started antibotic that she has if temp goes above 100. She's had pain pills, anxiety pill (20 minutes early). I'm wondering if there's no constipation only the feeling of it b/c she's so messed up inside from the radiation. Burnt, inflammed, swolen and that's what's making her think she's constipated. She hasn't eaten in 2.5 days. She had plenty of fluids the past 2 days. Yesterday with IV and today drank over 2 pints. She hasn't passed hard stool today only diarrhea. She had 2 mirclax ( stool softener) and a couple of suppositories. Anxiety back down (I told her temp was 100), pain pills in effect, back in control Thank you
Re: Bad Nights
(Me) by momsCancer on Wed Jun 18, 2008 4:58 am
Thank you so much for being there. I think we are okay and back in control. I might sound totally losing it when posting but I really try to put game face on for her; calm and never tears. Whle I think I pull it off pretty good, I don't know. It's really hard to know what to do when her anxiety and pain are thru the roof. I try to give her space but at the same time worry that getting in and out of bed on pain med and total exhaustion, she's going to collaspe or something. I just try to be where she can't see me but close enough to know what's going on. I wish I was a nurse and had more exp with all this. I just don't know when it's really serious or not. This thing is really a rollercoaster ride. It helps so much with ya'll there. Thank you, thank you, thank you.
(Me) Nights seem worse. Diarrhea seems more frequent, not making it to the toliet more, more pain and anxiety. She's taking oxicodone 2 pills every 4 hours. At night, it's not enough. Right now she has almost an hour before next dose and pain level is rapidly increasing. Do I absolutely have to wait 4 hrs? She's straining due to constipation but there's frequent urgent diarrhea. Both are wreaking havoc on her butt. Tonight there's a little blood when she blots. I assume its hemmoroids from straining. She also complains about her bones hurting. She thought she dodged mouth sores this round of chemo, but tonight there popping up. I'm reading on this forum about those at all stages continuing on w/ life, jobs, hobbies. How in the world is that possible? Is mom's side effects normal? Oh and I went to initial mts with all doc and went to chemo class where the msg was not to suffer through but let them know of all side effects and they will find meds to relieve it. In fact the onc head nurse said the disease is tough, you don't have to be. But in the next breath makes it sound like tough it out, it is what it is.
Re: Bad Nights
by NWgirl on Wed Jun 18, 2008 12:11 am
My side effects from radiation were tough, but nothing like what your mother is experiencing. Of course I have a temporary ileostomy, which is a blessing during chemo/radiation as it all comes out in the bag - pain free, regardless of how bad the diahhrea is. As for bones hurting, she's not getting that nulestra (sp?) shot is she? (Yes, she had it last Friday) That causes a lot of people pain in their bones. How many more radiation treatments does she have? Once those things are over with, you can start to begin the count down to when she will start to feel some relief. For me it was about 2 weeks after radiation stopped, but hopefully hers will be quicker.That seems like a lot of oxicodone - I definitely would not increase it unless her doctor says its okay.When I went through radiation, there would have been no way I could have worked (I'm a stay at home Mom). I LIVED in my Lazy-Boy recliner for weeks. I read about people that continue to work as well and I don't know how they do it.I'm so sorry you and your mother are having to go through this. It breaks my heart every time I read your updates. I will continue to pray for you both.
by Monique on Wed Jun 18, 2008 12:28 am
I did not have to undergo radiation, but I found the side effects of chemo sometimes extremely painful. Thus, I am really, really sorry to hear about your Mum's side effects. When I was undergoing treatment my bowels were ravaged: constipation and ongoing diarrhea (sometimes as many as twenty - thirty trips to the bathroom), which resulted in some brutal fissures. I think that my bowel issues were the worst side effect of my treatment (and not to scare others, because certainly not everyone suffers from these things).Frankly, the only thing that seemed to take the edge off the pain was long, epson salt baths and, after a few chemotherapy treatments, knowing what to expect and preparing myself for the side effects. For instance, while experiencing constipation, I would eat prunes or drink prune juice (however, another poster remarked that prunes gave him the trots, so if your Mum is trying them out, I suggest that she only do so in moderation). When I was experiencing relentless diarrhea, I would take Imodium in the morning to nip things in the bud. I also ate a very bland diet (Google "BRAT"). This seemed to help somewhat. Although these things didn't cure the symptoms, they did seem to help a fair bit. I don't know if this will make your Mum feel any better, but I did not, and could not, continue with my hobbies, never mind my job or school. No way. By the way, I have a nurse friend who insists that no one's pain be more than a four out of ten. So, if your Mum is suffering more than a four out of ten, I would suggest you immediately speak to a doctor regarding pain management (as well as a nurse, as they are often even more helpful than the doctors and, in my experience, fantastic advocates). Also, my learned nurse friend said that the best way to treat pain is to treat it early, before it reaches a 4/10, otherwise it can be difficult subdue.Monique
(Me) Re: Bad Nights
by momsCancer on Wed Jun 18, 2008 12:39 am
Belle, I'm so glad you are there, do you not sleep either. I would have had her admitted to hospital last Monday if they would've agreed. I feel like such a downer and a terrible failure at mind over matter, this really seems impossible at times.Monday they told us no solid foods just clear fluids. She's doing miralax laxitive. She can't try to physicaaly move things b/c radiation burns. She hurts terribly when peeing, thought doing it in the tub of water might be an idea but initial hit if water is equally as bad. She just uncontrollbly shakes from pain. Oh, she's had 4 consecutive days off radiation, go back tomorrow, still 9 left.
Re: Bad Nights
by wamo on Wed Jun 18, 2008 2:20 am
I can hear your worry and pain in your message.... take a deep breath and know you are doing all you can to help your mom...My husband had rectal cancer and 6 weeks of radiation everyday M-F.... he tolerated it well until about 3/4 of the way through. He had the excruciating pain, uncontrollable shaking / shuddering from the pain when he tried to go to the bathroom. He also was on oxycodone... and as long as he wasn't driving he could have 2 every two hours... but sometimes that just isn't the right pain med for the pain receptors that are experiencing the pain. I would first ask onc if there was another thing to try... at one point they had him taking Motrin and Oxycodone and that helped a lot when he had a rectal abscess.Now this is really KEY..... SITZ BATH SITZ BATH SITZ BATHSSSSSSSSSSS. No one ever told us this would help despite our reporting in of his horrible pain from treatment. I got on the computer one night and saw a couple of references to do sitz baths to relieve the pain. My husband could have kissed my feet.... he said that was the ONLY thing that helped him. It was still tough and painful but frequent sitz baths helped over all with all of it. Basically, warm water in the tub, no soap... and you only need enough for the water to go just under your bum area... not a full on bath, I'd say 4 inches max water height. He couldn't believe none of the doctors ever mentioned something like this might help and boy did it! So at least try... It sucks, no doubt. And being a caregiver myself, it is the hardest thing in the world to watch someone you love in that much pain. I used to worry about how much pain meds and would he get addicted, etc. One time my pharmacist told me (we have become good friends since I see him so much) that when someone has cancer those concerns become secondary... your priority is to help them through their pain. So don't worry too much ok.Hang in there I know it feels like how can I do this another day sometimes, but you can and you will get through this time.Wamo
(Me) by momsCancer on Wed Jun 18, 2008 3:20 am
Did your husband lose it and say to leave him alone at points. It's 3am, 1 hr before next dose of oxycodone and her pain level is bad and climbing and anxiety through the roof. She wanted me to leave her alone, she was going to lay on towels on kitchen floor. I convinced her to get backin bed but that I'd stay in living rm to give her space. She's out of her head, I can't reach her. She thinks she is blocked and can't get relief. She hasn't had food for 2.5 days. she had enough liquids the past 2 days. Can I give her Lorazapam anxiety pill 2 hrs early.
Re: Bad Nights
by wamo on Wed Jun 18, 2008 4:46 am
Yes he did ask me to give him space in a sense... he couldn't talk for a while after bathroom attempts.... it would come on suddenly too be watery yet took all he had in him just to get it out... infact it was like his body was forcing him to push even though he didn't want to (he also has hemorrhoids). All I can do is relate what happened with us, I am no doctor and certainly don't want to act like I am one. So I have no idea if you should give that anxiety pill early or if that is a really bad thing to do.With our insurance we have a phone number to an advice nurse and if you have that too, I would call the heck out of that thing and let her know your mom's pain meds level and the pain scale rating she is at 1 being no pain and 10 being worst pain you could ever imagine. Let them guide you on all your worries. If you don't have that, perhaps you have a 24 hr number for oncology... there is probably an on-call oncologist always available. You would just call your cancer center and they would either give you a number to an advice nurse or page the oncologist or however they work it. You should not feel that you are alone in this. Make those calls describe everything and they will let you know if yes that is normal or is this happening also or get her to ER now or see oncologist first thing in the am or whatever is appropriate. But bottom line is take the pressures off of you. Your mom knows you are available to her, be close but give her space if that is what she needs to deal with this. We all have our ways of dealing with pain and feelings of desperation. This is cancer.... it is ugly at times. Stay on it enough so you are comfortable in knowing that you have asked all of the right questions and so on...I wish I could do more to help you and your mom. I am sorry for all that you both are going through.WAMO
Re: Bad Nights
(Me) by momsCancer on Wed Jun 18, 2008 4:50 am
Okay, at 4:00 when I brought her the Oxycodon she apologized. I told her it's okay, she has a right to lose it and be upset and angry. I felt her, she was burning up. Took her temp and it was 101.28. Called the nurse on call, gave 2 tylenol and started antibotic that she has if temp goes above 100. She's had pain pills, anxiety pill (20 minutes early). I'm wondering if there's no constipation only the feeling of it b/c she's so messed up inside from the radiation. Burnt, inflammed, swolen and that's what's making her think she's constipated. She hasn't eaten in 2.5 days. She had plenty of fluids the past 2 days. Yesterday with IV and today drank over 2 pints. She hasn't passed hard stool today only diarrhea. She had 2 mirclax ( stool softener) and a couple of suppositories. Anxiety back down (I told her temp was 100), pain pills in effect, back in control Thank you
Re: Bad Nights
(Me) by momsCancer on Wed Jun 18, 2008 4:58 am
Thank you so much for being there. I think we are okay and back in control. I might sound totally losing it when posting but I really try to put game face on for her; calm and never tears. Whle I think I pull it off pretty good, I don't know. It's really hard to know what to do when her anxiety and pain are thru the roof. I try to give her space but at the same time worry that getting in and out of bed on pain med and total exhaustion, she's going to collaspe or something. I just try to be where she can't see me but close enough to know what's going on. I wish I was a nurse and had more exp with all this. I just don't know when it's really serious or not. This thing is really a rollercoaster ride. It helps so much with ya'll there. Thank you, thank you, thank you.
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