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agony

LaCh
Posts: 509
Joined: Dec 2012

Domobro, aquaphor, 100% aloe vera, silver sulfadine, all sting and make it worse.  Just tried something OTC called Dibucane, which has knocked the pain down to a "10."  Has anyone ever tried Magic Mouthwash on perinium burns?  I'm  in agony. 

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

I used Aveeno colloidal oatmeal, about 1 tablespoon mixed with warm water in a stiz bath. It was very soothing - didn't last too long, but as long as it did, it was soothing. My sympathies - I know that doesn't help much, but my sympathies are with you.

LaCh
Posts: 509
Joined: Dec 2012

Thanks RoseC...   I appreciate it....  

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

Hope you feel better real soon.

Marynb
Posts: 1134
Joined: Aug 2012

LaCh,

You are at the tough part right now. I used Tylenol for the pain when it seemed unbearable. I cannot tolerate pain meds at all and I am glad I didn't complicate the situation by adding those side effects. I used sitz baths with a rather strange ingredient that I was advised to use by the hospital. I used the blue powdery substance that goes into aquariums. I got it at the pet store. I know it sounds totally bizarre and I had quite a few laughs about it, but it worked well to alleviate pain and promote fast healing. Apparently, it is evidence based. I bought a 5 pound bag of it.

Other than that, I used the hand held shower to soothe. I also used a squirt bottle of room temperature water while I urinated to dilute. Pat dry and allow the air to get at it.

Another way to manage pain is to distract your mind with something else. This is proven to be effective and pretty quickly mastered. You can use something as elementary as computer games. My daughter loaded the game Angry Birds on my ipad. Sounds silly, but it works. Funny, I haven't played it since I healed, but it totally distracted me during the most painful periods. There were other games that also worked,

Hang in there. You are almost at the finish line!

AZANNIE
Posts: 371
Joined: Mar 2011

Sooo sorry you're in agony and hope you find relief soon. The wound care nurse prescribed a prescription ointment - xenaderm and then I had to put Desitin on top of that. I was told that the xenaderm might sting at first but it didn't. The only thing is you would have to make sure to get it all off before radiation. I used the sitz bath a lot. Feel better soon!!!

Ann

Phoebesnow
Posts: 447
Joined: Apr 2011

You are an amazing person.  The dog the walk up, getting yourself to tx.  Unbelievable how you are managing all of this.

 

When I was burned and tx was over, I had a home nurse who would come and clean and dress the burns.  She would use SALINE to clean the area, wow did that feel good, then she would apply the acquafor.  The relief would last for hours.

 

Good luck with the rest of tx.

LaCh
Posts: 509
Joined: Dec 2012

Thanks phoebesnow but I'm afraid I'm actually not managing all that well at all.  I'm losing my temper, becoming impatient and not handling things (or myself) well. I lost it yesterday when the hospital called to confirm my appt for Tuesday's port removel and couldn't find my records from a mere six weeks ago, (this after billing the wrong insurance company) and then proceeded to ask me the same questions they asked me back then, things they wouldn't have had to ask if they hadn't lost the chart.  So I finally said that unless all the questions about where I lived, how I lived, whether or not I have arthritis (yes arthitis) and a variety of other irrelevant things would preclude the port removal, then I wasn't going to answer them. So yes, I'm getting things done, but not in the best of ways.  And I find myself thinking more and more of simply saying, "Hey, you know what?  Yeah, I'm close to the end of this hellish, insane treatment but I'm done. No more.  That's it," and just walking away.  I'm getting very close to the point where I just don't care anymore. If the tumor's gone, great. If the tumor's not gone, that's fine too. I just don't care. So I'm getting things done but not handling them (myself) very well.

Phoebesnow
Posts: 447
Joined: Apr 2011

U r a little spicy and I like that.  U r a fighter and that's how u r going to get thru this.    I know these last tx r the hardest to get thru.  My husband drove me to the last 3 tx.  I needed him then.  U might need ur sister now.  Please think abouit it.  

LaCh
Posts: 509
Joined: Dec 2012

"Spicy" is putting it nicely.  Bit of a dic*head is more like it.  My sister coming isn't an option and isn't even on the table or being discussed/offered.  In any case, I can get myself to and from wherever I have to be and the truth is, there's not anything anyone can do for me so having someone here wouldn't really serve any purpose.  I need two things; relief from this pain and "space," so someone here wouldn't really be the best thing for me anyway.  The thing is, I've been deferring to other people to decide when I've reached my limit and it occured to me that that's kind of silly. I have 6 more treatments to go. If I reach a point where I feel that I simply can't go on, I'll give myself a break. 

Marynb
Posts: 1134
Joined: Aug 2012

You are strong. Do what you have to to get through this. Kick the wall, kick the dog, curse the night, but you will NOT give up this fight! You can really do this! I know you are not a believer, but I am praying for you. Hang in there. Cancer sucks, it really, really does. You don't want all this suffering to be for nothing! You will beat this.

LaCh
Posts: 509
Joined: Dec 2012

Thanks Marynb,

Part of the problem is that I entered this having zero respect and confidence in western medicine and its practitioners and nothing so far has given me reason to change my mind.  My radio oncologist has steadfastly refused to answer any and all questions put to him so I can't ask him this either: How can it be that  two rounds of chemo and 29 radiation treatments will cure this tumor but two rounds of chemo and 25 or 26 radiation treatments won't?  Because I look like someone took a blowtorch to my lower half and everything on it and I'm not clear about what the difference is between a "magic" 29 treatments and 27 or whatever.  As for cancer sucking, well, yes, I suppose it does, but all illnesses suck, all injuries, all things that are unwelcome, unpleasant, unwanted or painful. They all suck and yet we all experience these things at some point and we all have to die some time of something. I'm not quite ready yet but if my time is up, my time is up.  I have my own set of beliefs, and while they don't include god, they do include the cycle of reincarnation.  But that's just me and not important right now.  I'm not quite ready to die but assume, as I have from the outset, that the treatments will cure the tumor and I'm not worried about it. I'm more concerned about what scars I'll carry from the cure and what short term and long term affects it'll have my quality of life. But if I'm wrong and the tumor isn't cured, well, I gave it my best shot and I'm ok with whatever happens. As for kicking the wall, the dog or anything else, I don't really feel like kicking anything (except the doctors, maybe).  I never saw the cancer as a bad thing, as a good thing or as anything more than A Thing.  Things happen and anger at the disease never entered my mind. Anger at the doctors, yes, I've felt anger at them, but to me, disease is simply a part of life, and it happens.  But in one thing, you're wrong. Although I'm not a believer (in god) my response to someone saying that they're praying for me is always very appreciated and touches me deeply because I recognize it for what it is; a comment on faith placed in something that person believes in for a good outcome for me.  It's a kind gesture, a generous gesture and a caring gesture and that's the only way that I take it, and whether I share the same beliefs or not, I deeply apprecitate the feeling behind it and I do thank you. 

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

I had terrible burns from the radiation also.   Early on I used Lidocaine Hydrochloride Jelly USP, 2%, which helped because it numbed and cooled the burn.  I ended up in the hospital after my second chemo, and the nurses used a cream - Cavilon Durable Barrier Cream, which was very soothing; I continued using it for quite a while after I got out of the hospital. I took Oxycodene during and after treatments,  and even was on morphine when I was in the hospital due to the burn pains. I know you don't like drugs but you might want to try the Oxycodene. I was given a very low dose in tablet form - as long as you take it every 4-6 hours it will keep your pain to a tolerable level.  I could not have gotten through everything without pain meds.  I had no addiction or withdrawal problems afterwards. The other thing I did was an ice pack and put it between my legs to cool the burn. And the sitz bath was amazing; I would never had thought just soaking in warm water for 15 minutes would be so soothing..... I wouldn't want to say anything to encourage you to stop treatment, but I can tell you that I only had 25 treatments out of a planned 31; they had to stop because my blood counts crashed and then I got c-diff and was in the hospital for two weeks. The Dr.s thought I would still have some of the tumor and would have to have the surgery; the surgeon was shocked three months later when his exam showed only scar tissue and the PET scan was clear. So I think like you do, how do they know what the "magic" number is for each person........  My suggestion is that if you aren't taking pain meds, try getting some; it might enable you to finish the treatments. I understand your anger at some Doctors - I came close to telling one who was asking STUPID questions to get the H out of my hospital room; this pain makes you feel like an animal who has retreated to a dark cave and you have no patience for nonsense or stupidity and just want to be left alone......I do think you have been very strong during your treatments - I could hardly walk to my car to go to the radiation treatments, much less up and down 5 flights of stairs or taking a dog for a walk.........This is a rough treatment, like going to H and back if you ask me.  When I was going through it, I wondered like you if it was worth it. But when I got the results from the PET scan three months later, I DID feel like it was worth it, that the horrendous treatments had gotten rid of the cancer and I had a second chance to LIVE.  I'm sorry I have rambled on so long......... I remember one of the chemo nurses gave me a card with a candy bar in it, and she wrote "This will get better - I promise". It was impossible to see at that time, but she was right; it does get better. You are in my thoughts and I am also praying for you.

Marynb
Posts: 1134
Joined: Aug 2012

I believe that the protocol was developed over time, based on effectiveness of various treatments and statistical rates of survival. As anal cancer patients, we are lucky that there is a protocol with a high survivor rate. I also have another cancer, which is so rare that there is no known cure,and so no protocol. I can tell you that patients with this rare cancer literally travel all over the world searching for a cure or any treatment that may prolong life. There is no evidence based protocol at all. I do understand the need to accept the eventuality of death from cancer. Luckily for you, if you complete the treatments, the probability is that you will not die from anal cancer .With the anal cancer, when the doctors tell you that there is an 85% chance of survival using the protocol, it is based on the a statistical analyis and it is so worth sticking to it.
You are almost done and you will be well very soon!

LaCh
Posts: 509
Joined: Dec 2012

Hi Marynb,

I'm sorry to hear about your second cancer. That's a lot to carry. The protocol for stage l/ll anal cancer seems to have some flexibility; some people receive 27, some people 28 or 29, some people 30 treatments. I think that the protocol is fixed in some ways and flexible in others, and the determining factor seems to be who your radio oncologist is.  I've got mixed feelings about statistics. They're useful to a point but basically, they're comments about other people, and the presumption is that I (or you or anyone) will respond like they did. That said, I expect the tumor to be cured if I complete the treatments.  I've been awake since 1:00 this morning, going to the bathroom every 30 minutes (not diarrhea, just frequent visits) and screaming into the towel each time). I can't think or function, speaking to anyone is impossible, I just can't carry on a conversation. I don't see how the next 6 treatments will be possible, since the closer you get to the end, the worse the burns and pain get.  The problem for me is inside; there's something going on in there that causes pain beyond description during each bathroom experience and the skin assessments to determine whether or not I need a break only look at the outside.  If I take a break or call it quits, I'm going to have to be the one to decide that since what can't be seen (the inside) carries little weight when deciding to take a break. 

z's picture
z
Posts: 1250
Joined: May 2009

bag balm was given to me by my radioligist (used on cow utters).  If it could work on a cow it could work on my burns.   It seemed to halp me a lot.  I know it hurts, but it will get better.  Lori

LaCh
Posts: 509
Joined: Dec 2012

Hi Z

Thanks for your input. My concern with anything topical (I'm familiar with bag balm from my work with animals) is the ability to completly remove it prior to radiation...

cap630
Posts: 148
Joined: Jul 2011

So sorry that you are in pain. I was prescribed Biafine/PruTect topical emulsion for my burns.  Nothing else worked. 

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

Prescribed for me as well....

LaCh
Posts: 509
Joined: Dec 2012

Thanks for all the info everyone...  I was using a topical analgesic over the weekend and I think it made it worse, weepy and wet, so I stopped. *and really, the main, primary problem isn't external burns although I certainly have them and they're certainly painful, but internal.  I have something internal going on and it's that, that's the cause of all the pain when I go to the bathroom). I'm in the process of getting a script filled for hydrocodone.  not happy about it but I can't tolerate the pain anymore and just hope that I'm not simply exchanging one problem for another. 

OMG 1012
Posts: 61
Joined: Dec 2012

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

LaCh
Posts: 509
Joined: Dec 2012

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."

OMG 1012
Posts: 61
Joined: Dec 2012

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 :)  

LaCh
Posts: 509
Joined: Dec 2012

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.

eihtak
Posts: 809
Joined: Oct 2011

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)

LaCh
Posts: 509
Joined: Dec 2012

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.

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

(((((((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.

LaCh
Posts: 509
Joined: Dec 2012

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. 

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

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.

AZANNIE
Posts: 371
Joined: Mar 2011

I almost didn't finish the last 5 radiation treatments because I felt so miserable. I ended up in the hospital with burns and neutropenia. I was disgusted with the radiation oncologist for not giving me a break, but ended up having my own break. My medical oncologist knew I wasn't pleased with the rad onc and he had a talk with him. After talking to my medical oncologist I decided to finish the last 5 treatments. I had about a 10 day break before the last 5 zaps. I was concerned about the cancer returning if I didn't finish. I understand your frustration. You're almost at the finish line. Hope you can hang in there. It does get better and healing is fast. Hope you find relief soon!

 

Ann

 

LaCh
Posts: 509
Joined: Dec 2012

Thanks Azannie,

I also have an intense dislike for my radio oncologist, not necessarily for his medical expertise or lack thereof, but on a personal level. He lacks basic civility, basic courtesy, basic understanding of how to speak to another human being. He's arrogant and patronozing. He's physically and interpersonally clumsy and inept. The guy's an assh*le.  As for how he's handled the medical aspects of his job with relation to me, well, to give you an idea, his admonitions to me from the outset have been "no sitz baths."  I have 5 treatments left, including today's.  I think I can get through them, having found a strategy to do so, ill advised as it is (and as I know it is). I'm only taking fluids. I'm not eating any solid food.  If no one can help me control the incapaciting pain that I have when I go to the bathroom, I'll find my own solution and that's what I've done.  The external burns are getting worse as I close in on the finish line; hopefully, I'll be able to make it to the end without stopping.  I think your situation is a perfect example of the patronizing, arrogant attitude of too many doctors, that of "I know best and you know nothing.  I'll decide when your body has had enough."  In a profession in which listening is of paramount importance, doctors simply don't.  I have a medical background so my questions are often pointed and technical and medically well-versed and if something doesn't make sense to me medically, I'll say so and ask about it. That never goes over too well. I have a very low opinion of doctors. I try to enter a doctor/ patient relationship with an open mind but it always or almost always end up in the same place.  And sadly, I'm pretty easy to please. All I ask is, Listen to me,  take what I'm telling you seriously, treat me courteously and use what I'm telling you to help me because all I'm trying to do is impart information to you so that you can help me, nothing more.  Allow me to ask questions and participate in my own health care and if I decline a test or a treatment, don't take it as a personal affront. This is my body. I know it better than anyone else possibly can. I've had 59 years to get to know what it does and how it responds. Why would I turn its fate over to someone else whose understanding of it comes from academic study, experience (even years of experience) with other people's bodies and even a genuine desire to help. But it's my body. I know it's quirks and its limits.   So, you see, I don't ask for much, but it seems impossible to meet even these basic requirements.  Right now, I'm taking it one mug of tea at a time, one cup of broth at a time, one burn session at a time (because at this point, we're just burning the burns) and hoping for the best.  Thanks for your words of encouragement.

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry you are finding the pain so unbearable and I really hope that the doctors can find a way to alleviate the pain so that you can continue treatment.

LaCh
Posts: 509
Joined: Dec 2012

Thanks Marynb. I hope so too. 

Marynb
Posts: 1134
Joined: Aug 2012

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.

LaCh
Posts: 509
Joined: Dec 2012

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.

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

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...

LaCh
Posts: 509
Joined: Dec 2012

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. 

eihtak
Posts: 809
Joined: Oct 2011

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.........

LaCh
Posts: 509
Joined: Dec 2012

Thanks eithak, that's a very kind thing to say, really, since writing is something that I do for pleasure.  Curious that you mention staying in touch.  It's something that I've been thinking about as well. On one hand, I feel like I don't want to identify with the disease or the situation, and that when I'm ready to move on, I'll want to move on.  On  the other hand, if I can say something that  might be helpful to someone else, that's always a gratifying thing.  I imagine that I'll try to strike a balance between the two.  I smile when I think of not aquiring the qualities that I want to aquire overnight.  I've had 59 years and haven't managed it yet, so "overnight" was probably 40 or so years ago.  I'm only a good person until I'm not, and I stumble more than I don't.  As I said, this situation hasn't brought out the good person lurking inside me, but has brought out the evil twin.  But in any case, I do thank you for your words...

Marynb
Posts: 1134
Joined: Aug 2012

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!

LaCh
Posts: 509
Joined: Dec 2012

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.

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

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

Marynb
Posts: 1134
Joined: Aug 2012

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!

jcruz
Posts: 206
Joined: Jan 2013

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.

pializ
Posts: 255
Joined: Nov 2012

Hi LaCh,

I have 4 treatments left. I am  fortunate that I am able to take oral analgaesia. However, Peeing & pooing are soooo painful right now. Sting??? The way I am managing it is, I bought a portable bidet, and before urinating, I fill it full of lukewarm water & pee into it. Stings much less. then I empty bidet, wash it out then fill it with salt water to wash myself. When defecating, I do that as per normal, whilst preparing a salt bidet. When finished I use bidet, using usual BM efforts. This cleanses my anus and takes away the sting. Then use fresh sal****er bidet to have final cleanse. I know this sounds gross, but it helps, & I'm all for doing that at the moment & so very glad I bought the bidet. I have heard that sitz baths are more available in US (I live in UK). 

Like you, I have issues with this treatment, but know it has a high success rate, so will keep on until it is finished (on Burns night ironically).

I have an issue with nausea at the moment, but if I don't eat, it is worse. A round of toast and some domperidone eventually helps.

My groins are now starting to improve as my final 11 treatments have been to tumour and lymph glands only & irradiated from back. Can only go commando though....... Just ordered a sheepskin to sit on.

Seeing Oncologist today for review. Just hope my bloods are OK this week.

You & I are tough cookies & we will get through this.

Take care,

Liz x

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