agony

Marynb 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 2^nd 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.

Lorikat 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. 

pamela_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.