not alone

KarenK57 said:

burns too much to handle

My radiation burns have become so unbearable I'm at a meltdown. Called Dr on call and got me some silverdine and pills that turn my urine orange. I have some severe burns inside my female parts. Bathing nor lotions are helping. Dr says he might have to take a break in radiation.  He will look at my burns tomorrow.  So close to being done.  I feel like I'm letting myselfdown by becoming weak from the pain.  Hope all is better with everyone. Thanks again for listening.

Have faith that your body is repairing itself as it is being burned, it just has some catching up to do. I was in the hospital with horrible burns after the second chemo treatment (which was a lower amount than the first chemo treatment due to it would have killed me to have full chemo). The doctors at MSKCC determined it was better to cut back on the chemo and continue the radiation. They had to lift me out of the wheel chair to give me the radiation when I was in the hospital. I couldn't believe they would still give me those treatments when I was in such bad shape from the radiation, but they did. Miraculously, I have no scarring from the burns which looked like 2nd to third degree across my entire pelvic area and thighs, not to mention what it was doing to the insides. 

So, with us as your strength and hope, you will get through this. I kept a fan right on my naked body, propping my legs up in the air with pillows, took the pain meds and just slept as much as I possibly could once I got out of the hospital.

You are almost done. Hang in there.

All the best,

Sandy

KarenK57 said:

o the pain

I wish I could sit in the tub all day.  The radiation is getting worse. Now it even hurts when I urinate! I think these next 10 days of radiation and chemo are going to be the worst yet.  I'm trying to stay strong biut it sure is getting harder. I just keep telling myself 10 more days and the healing begins. The Dr. suggested I think about a hysterectomy after this so cancer doesn't form there. And now I also was told I have shingles on my butt that I always thought was just a rash.  My roller coaster just keep a going downhill. Time to make the slow climb uphill. Thanks all for listening.

Karen, I can literally feel your pain and relate to all you are going through, hang in there. As for feeling lazy, everywhere I look I have things to do but the fatigue has knocked me down so many times the piles of papers keep getting bigger, still haven't put away my winter clothes and switched over to summer my bedroom looks like a tornado came through, messages on the answering machine, haven't logged on the board since last week, haven't checked my Facebook e-mail etc... I just can't keep up but when I need to close my eyes I close them there is no winning that battle, somedays I sleep all afternoon wake up for a bit and sleep all night. We will not turn into Rapunzel so just go with it your body needs rest to heal. As for what my doctor told me we need rest, hydration and nutrition. I was put on a low fat low fiber diet on day one of treatment that hs me constipated instead of diarrea so I can't help you there, from all I read on the board I anticipated the diarrea and stcoked up on immodium (due to all the surgeries on my sphinchter my morning routine prior to radiation consisted of 3-4 bowel movements before work) now with treatment I only go about 1-2 times a week, I am afraid to take too many stool softeneners so I try to balance it out but wind up screaming in a towel, and nearly sweating into a fainting spell on the toilet. Baths and sitz baths are key. I have been in to see my pain management doctor and had all my pain meds upped in dosage, you may want to look into that. As for the burns my last day of treatment was 6/24 so it has not even been a week but my doctors sugarcoat nothing and both told me that this past week and upcoming week will be the most brutal, and so far yes they are, my burns have me peeling myself off the ceiling. They gave me Lidocane and proctofoam, neither really worked for me, I find the Silverdene to be the most effective, however this past Fri they gave me gel packs to put in the fridge, I find these soothing as well, they gave me a spray bottle of wound cleanser and then I put the gel pack on. I almost went to the ER Friday night since my temp was 100.8 and they tell you to call in anything overr 100.3, being a Fri night I figured I'd take som tylenol to bring the temp down because with all the clowns in the the ER I'd probably sit there 2 or 3 hours before being seen and the on call doctotor was not much help. To urinate I rinse the whole area with a peri-bottle first, use a refill while tinkling and then rinse with 2 nore bottles full. I blot dry with a washcloth. my vaginal area is burned worse then my rectal area which is prettty bad itself so I can hardly sit. It hurts to get up and down and to walk. I have skin checks now 3 times a wekk, mon wed Fri, They are really on top of everything but I am still not getting the relief I am looking for.As for my hair yes it has thinned and I cut ti short but the wig is still in the box in the closet, with all the pain that is the least of my worries. I have a tub of Eucerin and was told to use that twice a day to avoid hand and foot syndrome from the chemo, that is also very  helpful, I drink 2-3 waters a day and as much as I have the whole peri bottle routine going everytime I urinate I can.t seem to avoid the functional pain the internal pain of the eurethra (sp) opening upon the start makes me see stars and want to cry. However with all that said I somehow pulled every bit of strenght I had to make it to my sons pre-prom party for pictures on Wed and graduation on Thurs, Had to give up tickets to see the Script tonight at Jones Beach In either case I just want you to hang in there and vent away, I hope some of this info was helpful and that you don't feel so all aone, sending virtual hugs to you, Lisa

qv62 said:

KarenK57

Karen, I can literally feel your pain and relate to all you are going through, hang in there. As for feeling lazy, everywhere I look I have things to do but the fatigue has knocked me down so many times the piles of papers keep getting bigger, still haven't put away my winter clothes and switched over to summer my bedroom looks like a tornado came through, messages on the answering machine, haven't logged on the board since last week, haven't checked my Facebook e-mail etc... I just can't keep up but when I need to close my eyes I close them there is no winning that battle, somedays I sleep all afternoon wake up for a bit and sleep all night. We will not turn into Rapunzel so just go with it your body needs rest to heal. As for what my doctor told me we need rest, hydration and nutrition. I was put on a low fat low fiber diet on day one of treatment that hs me constipated instead of diarrea so I can't help you there, from all I read on the board I anticipated the diarrea and stcoked up on immodium (due to all the surgeries on my sphinchter my morning routine prior to radiation consisted of 3-4 bowel movements before work) now with treatment I only go about 1-2 times a week, I am afraid to take too many stool softeneners so I try to balance it out but wind up screaming in a towel, and nearly sweating into a fainting spell on the toilet. Baths and sitz baths are key. I have been in to see my pain management doctor and had all my pain meds upped in dosage, you may want to look into that. As for the burns my last day of treatment was 6/24 so it has not even been a week but my doctors sugarcoat nothing and both told me that this past week and upcoming week will be the most brutal, and so far yes they are, my burns have me peeling myself off the ceiling. They gave me Lidocane and proctofoam, neither really worked for me, I find the Silverdene to be the most effective, however this past Fri they gave me gel packs to put in the fridge, I find these soothing as well, they gave me a spray bottle of wound cleanser and then I put the gel pack on. I almost went to the ER Friday night since my temp was 100.8 and they tell you to call in anything overr 100.3, being a Fri night I figured I'd take som tylenol to bring the temp down because with all the clowns in the the ER I'd probably sit there 2 or 3 hours before being seen and the on call doctotor was not much help. To urinate I rinse the whole area with a peri-bottle first, use a refill while tinkling and then rinse with 2 nore bottles full. I blot dry with a washcloth. my vaginal area is burned worse then my rectal area which is prettty bad itself so I can hardly sit. It hurts to get up and down and to walk. I have skin checks now 3 times a wekk, mon wed Fri, They are really on top of everything but I am still not getting the relief I am looking for.As for my hair yes it has thinned and I cut ti short but the wig is still in the box in the closet, with all the pain that is the least of my worries. I have a tub of Eucerin and was told to use that twice a day to avoid hand and foot syndrome from the chemo, that is also very  helpful, I drink 2-3 waters a day and as much as I have the whole peri bottle routine going everytime I urinate I can.t seem to avoid the functional pain the internal pain of the eurethra (sp) opening upon the start makes me see stars and want to cry. However with all that said I somehow pulled every bit of strenght I had to make it to my sons pre-prom party for pictures on Wed and graduation on Thurs, Had to give up tickets to see the Script tonight at Jones Beach In either case I just want you to hang in there and vent away, I hope some of this info was helpful and that you don't feel so all aone, sending virtual hugs to you, Lisa

I want to tell you both what I did to sort of help with the urinary pain.  My excruciating pain was definitely more internal than external.  I took pyridium  the last few weeks of treatment which didn't completely numb my urinary tract but helped.  I also carried around a tube of lidocaine gel and q-tips and dabbed a little on my urethra just before peeing.  Again, not complete relief but helped.  That pain was awful, peeing broken glass.  I hope you both get some relief.  And, it will be over soon and healing will begin.

Janet

KarenK57 said:

First I want say i grew up on

First I want say i grew up on long island and loved going to jones beach. I scream in a towel everyday. The burns up front are worse than rectal area.  Just got some silverdine.  They are changing my radiation tomorrow to more pinpoint area. I have a feeling its gonna get worse.  Eating and drinking is getting harder everyday.  Thanks and praying things are going well with you 

Hi, I just want to ditto what others have said "dig deep" you can do this!  Oh, how I remember those days, its been a little over 3yrs for me now but I have not forgotten.  At this point I was in a nursing home to deal with some related complications and my saving grace was pain medication. That being said, the burns when peeing did not let up!  I remember the physical therapist wanting me to come to therapy one day and I nearly threw something at her as she stood outside the bathroom door waiting for me.  I ALWAYS had a bottle of room temp water to pour on myself as I was going, the dilution seemed to offer some relief.

I will have you in my thoughts as you near the end and move forward with recovery!

Katheryn

KarenK57 said:

hospital

Well I finally could not stand the burning anymore. Now I have a severe burn inside my female parts.  I had to go to emergency room.  They couldn't do much but I had to have them look at it. My Dr said it wasn't from the radiation but this Dr said it was.  My butt is on fire and nothing is relieving the pain. So now im burnt at both ends. I have 5 more treatments but honestly don't think I can handle it.   Nothing is helping.  I'm scared more now then ever.  I know you all have gone thru this and are going thru this and wishing you could hold my hand :-)  For the ladies out there....has anyone got bien inside the vagina?    It even started bleeding.  Happy 4th to all and thank you

I SO feel your pain, as I had the same terrible burning, both inside and out.  I wanted very badly to just quit when I had 3 more treatments to go, but somehow kept going and finished without a break.  I disagree with your doctor telling you that this is not from the radiation--it IS absolutely from the radiation.  This is what radiation does--it burns!  See if your doctor will give you stronger pain meds.  I'm not sure what you're taking now, but many must be put on morphine.  Ask for the strongest medication you can get.  And yes, I was burned inside of my vagina, my urinary tract and, of course, my anal area.  My upper thighs were burned and peeling.  I honestly didn't think I would ever recover, but I did.  Do whatever it takes to get in those last 5 treatments, even if you have to take a break.  Please know that we are all here for you, virtually holding your hand, and sending you lots of hugs and prayers.  Update us when you can.

KarenK57 said:

pain meds

Dr gave me norco 5mg and when I went to hospital they gave me tramodol 50mg.   Neither is helping much.  My son who is a RN said I wasn't taking enough which he was right because I'm not a good pill taker. Was wondering if anyone was given anything stronger?  I really want to make it one more week. Thanks everyone for holding my hand :-) 

I lived on oxycontin and oxycodone for months, before, during and after treatment.  About 1/2 way thru treatment I went from 10mg controlled release oxy to 20mg. CR gives you 12 hours pain relief and the 5mg oxycodone was for breakthrough pain and I often needed to take it.  I'm glad your son told you you weren't taking enough.  If you don't take the meds right when you need them it can take a long time for the medication to catch up with the pain.  That's why I was glad to be on a round the clock dose of oxycontin assisted by the oxycodone.  The pain never really completely went away but the meds made things livable.  The only time I was completely pain-free was one afternoon when I went into the infusion center for IV hydration and I'd forgotten my pills.  The nurse gave me a shot of dilaudid through my port.  It was incredible.  No pain.  I was also pretty high.  I think I got a good idea of the high that heroin addicts chase.  I felt great.

Ask your doctor for stronger meds.  You need them now and may need them for a while as you're healing.

Janet

KarenK57 said:

I am done with treatments :-)

I can hardly believe today was my last treatment. I'm done.  It's been a long hard 32 days.  Honestly I never thought I would make it. But with much thanks and extreme heartfelt gratitude from everyone here I was able to overcome the pain andconfusion and take my last radiation treatment.   I also was very fortunate enough to have my son and his family come spend a few days with me. And my beautiful daughter who helped the best she could.  And on top of that my super wonderful amazing sis in law from NY came to stay the week.   I thank the Lord above for giving me the strength to finish especially with all these wonderful people by my side. And of course the strength I got from my wonderful husband throughout this whole thing.  Love to all my friends and family xxoo

Now you can focus on recovery.  Be good to yourself for the next couple of weeks.  I'm so glad that you made it through.  I had 32 treatments as well.  I finished 6 months ago.  It just keeps getting better!

Judy

KarenK57 said:

dilator

I'm scared to do the dilator.  I don't know what to do. Anxiety has gone thru the roof.  You would think after all I've been thru and going thru I should be able to do this. Any suggestions on how to do this.   I'm still so sore down there I'm scared its gonna tear and bleed all over. My last day of radiation was last Friday.  Again I ask for help.  Thank you 

i did not do dilator until 5 weeks after last tx..... i started very small.... md anderson gave me mine.......i still do them but am at a larger size now ( i am post tx 5 years.)...sephie