agony

AZANNIE said:

LaCh

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

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 said:

phoebesnow

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.

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 said:

marynb

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. 

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.

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

cap630 said:

Smoothing to Burns

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

LaCh said:

thanks all

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. 

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