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Today was day 19 out of 28 days of radiation for endometrial cancer. Whether I have diarrhea or just loose stools, it feels like there are a hundred tiny knives piercing my skin. THey think I have yeast (no culture) and gave me diflucan; yesterday they added proto-foam as I bleed occasionally. I cannot seem to eat bland enough. Anyone have any information or ideas regarding this pain?
Exercise Cancer Diflucan Cervical cancer Kidney cancer Hematuria Pain HPV Endometrial cancer Diarrhea Bladder cancer
By day 19, the tiny hairs that are around the anus have fallen out. (Sorry to be graphic, but LIVING it is much worse than SAYING it, as you well know.) Additionally, that area's skin/tissue is beginning to be burned, at least the superficial layer. (Nine more days, nine more days, nine more days......)
It's unfortunately not so much a matter of blandness of diet; just about ANYTHING is going to be painful. The little hairs will try to grow back and indeed, it DOES feel like a million tiny knives. It doesn't help that the buttocks rub against each other, even if you're practically immobile. Oh gosh, I remember EXACTLY what you're talking about, and it's been 26 years.
Diet had no effect, although I would eat yogurt, just to TRY to re-populate the good flora. (Hey! I wonder what yogurt applied TOPICALLY would do??!) Topically is the only way you're going to make any difference, and it won't be 100% until the treatments stop, at which time you'll see an amazingly rapid improvement (I promise).
#1, toilet paper, indeed rubbing with ANYTHING at the site, is going to exacerbate the pain. Chances are you don't have a bidet, but I would sooo seriously consider just rinsing the area with WARM SALT WATER, which has very therapeutic qualities.
#2, a sitz bath of WARM SALT WATER will also provide a lessening of pain. Bearing in mind that though salt water is really a healing agent, you're still being actively burned every treatment, and nothing's going to work 100% until the treatments stop.
#3, one doctor of mine had a spray-on numbing agent (felt as cold as ice!) for mucus membrane tissues that would give relief for up to an hour at a time. I cannot remember the name of it; I'm sorry. It was something like "Hurricaine".... obviously had Lidocaine in it, and was a topical anaesthetic.
#4, you MIGHT consider a very thin layer of cotton or linen between your buttocks so they don't rub against each other. Perhaps even saturated with vaseline, or some OTHER thick ointment-type cream? Just a thought, because it took me until almost the entire treatment time until I realized the little tiny hairs were basically stabbing burned, irradiated tissue. And there you have it.
I hope you're using adequate pain medication, as I really do understand what you're talking about. It won't allow you to sleep at ALL, or barely even MOVE, without crying. I didn't find any food or drink that made much of a difference at all.
YOU HANG ON!! Nine more to go --- you're almost there. And as soon as the treatments are done, you can use some Aloe Vera gel (maybe try some now?) to assist the burned tissue to heal. And heal it will!! It WILL; pretty quickly too. Just hang in there, and try to think of some creative ideas.....it'll at least keep your head occupied.......
IN JOY,
Katz
Katz,
I cannot begin to tell you how much your response means to me. I have googled and googled, spoken to my doctor, dietician, etc. Your information actually makes sense. I realize that I feel betrayed somewhat by my doctor and her inability and lack of information in this area. The nurse said they've not had anyone who had my particular symptoms. To have someone who understands and knows about that pain is invaluable for me and helps me to know that I can get through it.
They have not given me any pain medication. The pain doesn't last a long time, but is excruciating. Of course, I'm trying to control the diarrhea so I go less. Sometimes I"m more successful than others.
I will follow up on your suggestions and I so appreciate your being graphic.
Sincerely,
Stevie
There are just some areas of cancer & its treatments' effects that our doctors/nurses have NO idea of. I think, often, we the patients tend to NOT say much about this stuff. (Might as well tell you now: Post radiation, I went flying into the ER bellowing about massive blood from the rectum. It turned out to be the CHILI I had eaten the night before. Just think twice, for your OWN sake, before calling the doctor, that's all I'm saying. Because, as it turns out, one canNOT actually die from embarassment. Even when they WANT to....)
For heavens' sake, get some pain meds!! And take 'em!! Even if they just allow you to SLEEP, it's worth it. Don't ASK your doc, TELL 'em. (If you're given a problem about it, show 'em my earlier post about what you're contending with. Their shame, alone, will get you an Rx.)
Hang in there. Try whatever you can think of to soothe the area. (Zinc oxide is really good & thick, but it's the stupid little razor-sharp hairs that are making it intolerable.) Next time you feel like crying (go ahead; it's better than screaming at someone ELSE), just imagine a young woman having to endure a stool-smear only to discover it was CHILI. Ohhhh, I thought CANCER was bad......
You hang tough; you CAN and WILL and ARE getting through this. Ya know, under the theory that if something ELSE hurts, it'll take your mind off your CURRENT pain, maybe you could just smash your finger or something?! With MY luck, I'd end up with BOTH pains, but it's worth thinkin' about.....
IN JOY,
Katz
Katz,
I really appreciate your sense of humor and your directness. It is embarrassing to talk about your anus, but there it is and it's just as important as what is at the other end.
Unfortunately, I have also been bleeding at times and I'm not clear what that is. I could have an internal hemorrhoid that I don't know about that developed since my colonoscopy several years ago.
I'm not clear on something you said. The hairs have fallen out from the radiation, correct? So is it new ones that are trying to grow back that feel razor sharp?
Thank you so much for writing me.
Stevie
I'm thinking it's both old/extant hairs that refused to fall out and became very, what, crinkly? Wiry? And the NEW ones that take root start OUT like that....wiry. Our bodies just try sooo hard to begin anew, to re-grow and regenerate. It's pretty amazing, if you pull back & look at it..... how hard our BODIES fight, let alone our hearts & souls. But truthfully the hair that DOES grow back looks in dire need of conditioner. LOL!!
Now, in my case (it was cervical cancer --- now it's bladder cancer ----) I had some bleeding as well. I was told that it ALSO was a result of radiation, burning off the first layer or so of your intestines. You might consider some Vitamin E.
And while you're at it, for your own sake AND since you have the Internet at your disposal, once you're through this, read up on irradiation damage. It can and does have disastrously intense side effects. The more you can do to fight them early on, the better. To whit:
* radiation destroys cartilage (I lost a hip 10 years after treatment) Make sure you get plenty of calcium & vitamin D and consider carefully, with your doctor(s) whether you should be on hormones. My cancer was at 26, and now @ 52, my BODY thinks it's 100 years old. (My child-like mind balances it out.)
* radiation, in particular "implants" (I had cesium), do the most damage. Intestines in particular, but also (please bear witness) urinary fistula. If, years after treatment, you begin to have the symptoms of chronic UTIs and hematuria (blood in the urine), you can do what I did, which is retain an incompetent urologist, do thousands of anti-biotics that never did anything, OR you can investigate the possibility of what is called fistula.
In long-burned (and sometimes newly irradiated) tissues, due to circulatory problems AND the post-menopausal thinning of tissues, the outer walls of organs can begin to "meld". (In my case it was the bladder & intestines). In a way, it's our body's way of desperately reaching out, looking for a way to help itself. Sigh. My bladder & bowel "melded", a fistula ---- it's not a hole; more like a tunnel --- developed, and my colon began "sucking up" urine from the bladder, resulting in the diarrhea from hell, and ongoing UTIs and bleeding. I was 62 pounds when I was diagnosed. Watch out for digestion problems, incorporate yogurt into your daily intake, as well as flax seed.
My biggest point is NOT specific symptoms, because they can be different in different people. But fistula are a common side-effect from radiation. So fore-warned is fore-armed. Just keep the idea, the WORD, at hand, so in the event of future problems.....you won't waste time like I did.
Nine more treatments! When you get done, do sometimes special for yourself!! It is indeed a great accomplishment. ALL the best to you.
IN JOY,
Katz
You are a most amazing person!
Thank you so much for all of this information.
My mother had bladder cancer. They removed it and gave her a pouch made from intestines. She empties it with a catheter 3-4 x daily for the last 30 yrs.
How are you doing with all that you have going on? You sound like you have a wonderfully positive attitude.
I just started reading a book recommended to me called Anti Cancer: a new way of life by David Servan-Schrieber, MD. He is a neuropsychiatrist who by chance in his own lab had a head MRI as a test subject and it was discovered that he had a malignant tumor. He describes the process of going from dr to patient and becoming a disease to his drs rather than a patient. The book is well written and has excellent information.
Thank you again, Katz.
Stevie
Thanks for the book recommendation!! I LOVE my books, and don't see myself changing that.
Oh gee, I have a HORRIBLE attitude! ;-) Let see, if you want a list, here goes. Sigh.
'83 HPV, cervical cancer
'93 cartilage in hip "blew"; hospital unware of linkage between radiation and ortho health. Hospitalized 3 months, femur cut, didn't walk for 2 years. Due to extensive atrophy, it's kept "bad" leg shorter than good by 1 1/2". New hip in '95, currently "failing" because it's almost 14 years old.
'99 Intestinal radiation damage. Lost 30 lbs. 9 1/2" of upper bowel was removed, which saved my life. Was initially diagnosed as having Chron's disease.
'03 Strep infection in artificial hip. (Only me,man....) GOT infection by (seriously) doing ONE stretch. Exercise kills.
'03 Began having fisula issues while leg was healing. Just didn't know it. *snort*
'04 Had colostomy (Stan). Without it, would've died it.
'05 Developed 2nd fistula between vagina and bladder. Had bladder removed, ileal conduit installed. (Stella). Together, yeah, there are two pouches, but one saved my life, and the other made it WORTH saving. It was a really hard adjustment, but sooo worth it.
'08 Started bleeding vaginally. Dx withbladder cancer.....3 years after bladder removed. Yup. You heard me. BWAAHAHAHAHAA. Yeah; real funny. Removed urethra, and 3 different sites were removed & cauterized....I actually cannot be OPERATED on (bummer!) because of a real problem called "Hostile abdomen"....
So for now, I am a Stage III, high grade, (upgraded now to) Kidney Cancer, inoperable, terminal.
I wish you Godspeed in your treatment! Please DO develop an after-care program of calcium and/or hormones....just to make informed decisions. (What a concept!)
Katz,
I know it was not your intention, but I am humbled by your experiences. I am a wimp in comparison to what you have gone through in your life.
However, you have also given me courage and hope that I will get through this "minor" experience and that it will be soon over. I am very fortunate and I know it is important to remember that every day.
Everything I read supports what you say. I know that I need to pay attention to everything I put in my body and create a thoughtful and well planned after care program. With all of your research, are there books or articles that you recommend that I read?
You are now in my prayers ever day.
Stevie
Katz,
I did not hear back from you and am wondering how you are doing today.
I have new meds to try to help with the burning. Dr also gave me pain meds. The doc was more compassionate today which made me feel better.
I feel very grateful for all the information and support you have given me.
Thinking about you a lot.
Stevie
Katz,
How are you today?
Thanks to you I asked my dr for lidocaine. It took her 2 days to agree. It's the only thing that has helped.
Once again, I am extremely grateful to you.
5 more treatments!
Stevie
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