Radiation getting Unbearable

[bradyr]

any update? were you able to get any pain medication or help of some kind?

[momsCancer]

I apologize for not responding sooner, it was a long night and day for mom. Yesterday, The onc nurse called back with a prescrip of Tramadol 50 mg. She's suppose to take 1 tablet every 6 hours. She said it would help with inflammation and pain. I'm not sure how effective it is b/c we didn't get it until 5:30 last night. She took it and then a few minutes later took a full dose of hydrocodone 7.5 mg/500mg/15ml. I left at 9:30 last night thinking she'd be okay through the night. Dad says she was up alot last night hurting. This morning he thought she was in bed asleep while he was working in the office, when he heard her calling for help in the kitchen. She was doubled over thinking she was going to pass out. She felt really bad this morning, probably about the worse I've seen her, but we took her to radiation this morning anyway. Before leaving, I gave her an axiety pill and another dose of hydrocodone and nausia medicine. For most of this week she's not eating or drinking much and is staying in bed either hurting or knocked out for short spells from hydrocodone. I've tried to keep her drinking water especially b/c she had the Mitomycen-C on Monday and the 5-FU pumping all week until noon today, but she only sipped water here and there. At the hospital for radiation, first time ever I asked for a wheelchair when we pulled up b/c she's so lightheaded, weak and drugged from the hydrocodone. I tell ya, I really despise the nurse there. She doesn't know anything, but acts like she knows it all. I'd respect her more if she'd just say that she doesn't know but will try to go find out instead of dishing out wrong info left and right. Today, she brought out a thermometer, mom ran a fever yesterday afternoon and evening at the highest was 99.94. Because she ran a fever and her cell count was so low last chemo round and wasn't as high as the onc would have liked at the start of this weeks chemo, he said to routinely check her temp and call in and start taking the antibotic he had us get, if her temp hit 100. Anyway the nurse attempted to take mom's temp with a digital thermometer. B/c mom had just taken a drink of water, she said she'd take it in her armpit. It wasn't registering. I told her to forget it, we'd have it checked at the clinic after radiation. She said that there's no need to worry unless her temp is 102 or more. She's the same nurse that told me to get Tucks Medicated pads which totally lit mom up Wed. Also, she told me to get Domeboro soaks to go in her sitz bath. Okay Domeboro is to dry up poison ivy and such rashes, radiation is totally drying mom up down under, so that again was bad info. Although we kinda figured it out on our own, the onc nurse told us to immediately stop both. The stupid radiation nurse was the one yesterday who said that mom's pain from the radiation burns was like what she experiences from sunburns. She said she gets really bad sunburns. Tell me how I could not think she's a total idiot. She also brought us a little tiny sample of aquafor and said to use it sparingly b/c a little goes a long way. Mom almost goes through a regular size bottle each day. We slather it on the inside of her legs and front to back at least a 1/4 of an inch thick everytime she goes to the bathroom and/or gets a sitz bath (almost every 2 hours) The radiologists are gone until Monday. Mom was radiated and we left for the chemo clinic. Back in the treatment room, they checked her blood pressure and it was 87/63. The onc nurse that I like took Mom to a room to check her bottom. She says that it does look good (like the radiologist said) She said that it no doubt is extremely painful but the skin is still intact and while there's swelling it's still okay. She ordered mom a thing of morphine, they unhooked the chemo pump and gave her a bag of fluids. By the time we left, mom looked so much better. The morphine and fluids brought her back to life. They were suppose to take the pic line out today but decided to leave it in just in case she needs another IV of fluids. The onc nurse told me to make sure she's getting enough water and to up the hydrocodone to 6 teaspoons rather than 3 every 6 hours. She said to give her doses between 2 - 6 teaspoons during the day according to the pain level and give her exactly 6 teaspoons before bed each night. I guess the morphine really worked wonders and thank God and the onc nurse for it b/c when we got home mom asked me if I thought her burn was better than yesterday b/c it really wasn't hurting. It looks the same, she's just not in crazy pain b/c she's drugged. This afternoon/evening has been pretty uneventful. Her pain level is way down and she just wants to sleep. She's not wanting to do her sitz baths or still drink enough water b/c she just wants to sleep. It's hard to enforce it b/c she's resting so peacefully. The onc nurse is on-call all day tomorrow, I'm going to call and ask about the Biafine Prescription Cream. I told the onc nurse that I'm going to totally rely on her and mom's onc for help, not the folks at radiation. We'll try to keep going for radiation but besides that we're done with them. I'm still not giving up on a prescription cream that will numb her burns. That's where we're at today. I can't tell you what it means to know there's caring people who are there for you and understand the pain mom's in. You all and the folks at the onc office are great. You definitely know it when people don't understand or care like at radiation, so I guess just lean on those who do get it. 9 radiation hits to go.

[JessiLeigh]

Glad to hear things are a little better. I know this is very hard on your mother, and you too of course. The people surrounding us go through it too! She is very lucky to have a caring, loving, supportive daughter like yourself. I can relate to your experience with "dumb" nurses. Some people think because they have a degree, their smart. I don't think so. When I was in college for medical administration, I couldn't believe some of the people that were in most of my classes. How do they get by in everyday life? And these are the people in charge of us. Don't get me wrong, there are many wonderful nurses and doctors out there, but there's that percentage that annoy me. I think that comes with any job though. That's just America, sad to say. Point is your mother got some pain meds, morphine is good stuff and will help through this horrible time. Keep us informed. We are all praying for your mother and family!

By the way, this might sound stupid but just a suggestion...have you thought about aloe vera from an aloe plant? I know it's very soothing, sorry if I'm way off but trying to help.

[JessiLeigh]

here I am talking about "dumb" people and I used the wrong "their" I meant "THEY'RE" ha ha

[momsCancer]

You know my aunt said maybe should try aloe from an aloe plant too. I think I'll get one tomorrow. It's got to be better than the stuff out of the bottle which we are using.

Also, Mom had a $4000.00 shot today, can you believe it. It will boost her white blood cells. The nurse said it could make her bones hurt tomorrow. I can't believe the cost, that's crazy. Thank God insurance covered it!

I hope I'm not being too terrible but I've really lost patience with incompetant or just plain uncaring docs, nurses, technicians and such. There's those really great ones out there who make such a difference but nothing can make you snap faster than the others. The hospital has a valet service for radiation patients. We are greeted by the same valet guy every day and he meets us on some days with smiles and other days with a face of geniune concern and kind words. I can't tell you what it means to us. Also, there is one technician who is great at his job, who has a personality and sense of humor to brighten really dark days, and truly is concerned and connects with his patients or at least mom. He told me today that we can ask for him each day which I will b/c the heartless technicians who are just doing a job makes mom have anxiety attacks and want to quit that much more. I don't think they understand that their patients are sometimes hanging on by threads and their actions and demeanor really can be devastating.

My mom is my life right now. All my energy, effort, thoughts and love go to her and her recovery. What hurts the most and is the hardest to accept, is that many times it's not enough to make it better. I still can't believe this has happened. I was definitely one of those people who didn't have a clue about this disease (so I guess I should have more patience for the clueless)

I'm definitely 100% forever changed.

[bradyr]

I'm so glad they gave your mom some morphine. I hope the oncolgy doc will follow thru with some additiona pain pills. But the way, I consider my chemo oncologist doctor my primary care doctor (not my radiation doctor) and my chemo oncologist percribes all my drugs - even if they are really driven by radation (like addional pain pills when my leg start hurting worse when radiation first startd. (and I actually have a great relationshipw with my radiaiton doctor -not like you).

We are all very concened about your mom and I've been saying prayers to father seelos for her.

this all made a difficult siutaion harder. but one thing to tell your mother. i have been very impressed that even with all this and pain that I can't imagine, she is still going to treatment. she is made of some strong stuff. I remember welll my first week of radiaiton which was bad for me, but nothing like your mother and I was crying and so ready to quit She is much stronger than me and that's good because I belive it's all going to be easier after this.

I have a question - where are you located? what cancer center is this your are going too (you don't have to say the doctor's name)

[momsCancer]

We are in Tulsa and are going to Hilcrest Hospital for radiation and her onc is at Cancer Care where she gets chemo. Kinda funny but as we left radiation today, we had an idea of making a flyer posting the good vs the bad docs, nurses, and technicians. Sadly there's more bad there than good. We thought we could give it to the awesome, extremely caring valet guy to hand out to new, unsuspecting patients.

bradyr, thank you for all the information, prayers and concern. I told Mom that I checked the club and that you asked how she was doing. You and the community here mean so much, the support and just simple understanding helps us to keep walking out the treatment. Yesterday, I told her what you said about pain level, pain pills, and how wrong the radiologist was. She just broke out in tears b/c in the back of her mind she wondered is there something wrong with her that she can't handle it all better. I'm definitely going to read your last comment to her in the morning, b/c she still thinks she's falling far short of strong. When I try to convince her different, she just thinks I'm trying to be nice b/c I'm her daughter.

[bradyr]

you and she are both Incredibly strong.

I hope you recognize (as I’m sure your mother does) how much you’ve being doing in all this to take care of your mother. It’s ashamed you’ve almost had to “fight” the doctors to get what you should have gotten automatically. But you have been such a strong advocate for your mothers needs, I think it’s remarkable.

Your mother may not realize it, but she’s stronger than me. As I was telling someone in another post I still remember my first radiation treatment and how hard I found it. and mine was only 10 treatments on my leg with much lower total dose. but I was crying and so ready to quit. I was begging my wife to just let me stop the treatments, that it was ok if I died, that I would rather that then have to go thru more of the radiation and chemo.

I wasn't going anything like the pain and suffering your mom has been going thru, but unlike your mom, Sharon basically had to force me to go to chemo. with all this suffering your mother still gets up and goes to treatment.

Throughout my entire treatment I had nothing but the kindest, most helpful doctors and nurses, but still I was complaining how uncomfortable I was.. Your mother has what sounds like the cruelest, uninformed medical people in the radiation team that I have ever heard of. But, your mother has stuck with this.

So, it’s explain to her that’s not just her daughter being nice telling her how strong she is. Both of you have been an incredibly strong team.

I’ll keep both of you in my prayers. Not sure what faith you are, but regardless of what it is, I’m getting all the catholic saints working for you <G>

[NWgirl]

Thank God your mother finally got some relief and has you there to fight for her. I think most of us would agree radiation was awful, but nothing compared to what your poor mother is having to go through. I got a fever and dehydrated the last week of radiation. They ended up taking the 5FU pump off about 5 days before radiation ended because I was getting so sick - so if her chemo doc takes it off early, I wouldn't be to surprised or concerned. You and your family are in my prayers that she will get through this quickly and have a fast recovery from the radiation.

[Sally1898]

I really feel for you, and your mom. I had 31 radiation treatments. Severe pain, blisters in groin area. Was told pain would be similar to a bad sunburn. I'd say it was an 8 on a 10-point scale. I gave up wearing any underwear by week 2, sorry if TMI. They advised Sween cream to treat skin. Though it slowed breakdown, it did nothing for pain. Hope the meds continue to help with her pain level. Improving that, in and of itself, can make such a difference. I'm thinking of you both. Sally

[momsCancer]

Now there are blisters and unbelievable pain when urinating. Belle, just like you described. I left for a couple of hours this afternoon and when I got back this evening dad said she's hurting bad. She had to pee, I grabbed the squirt bottle and sprayed as she went to try and dilute it, she was in so much pain she shook uncontrollably. Dad helped her into bed while I ran for the hydrocodeine. She shook uncontrollably while I gave her the med. She hadn't taken any since I gave it to her early this afternoon. This evening my husband said to log every time I give her meds. I'm doing that now b/c she can't afford a lapse like that in pain meds again. I can't imagine 9 more hits of radiation. I'm really scared, radiation is a nightmare.

[NWgirl]

I'm so sorry. Urinating was the worst. Thank God I have a temporary ileostomy so I was spared the pain of having to have bowel movements and diahhrea through a radiated bottom. I hate to bring this up, but be prepared to have these symptoms continue about 2 weeks past her last radiation treatment. They don't stop immediately I'm afraid. They told me 7-10 days I think, but for me it was 2 weeks before I started to feel some relief. The good news is I did get better and it is all just a distant memory to me now. This may not be much comfort to you and your mother right now, but try to keep that thought in the back of your minds - it will get better. And try to remind yourselves that if the radiation is this hard on your mother, think what it is doing to any cancer cells. I can't remember if your mother has already had surgery or not - but again, just remember that she is going through this hell so that God willing, the cancer will not return. I know that 9 more treatments sounds impossible. But every day she is closer to being done with this nightmare and closer to her ultimate recovery. The last week or two I cried every time I went to the center. I could no longer drive myself and I couldn't believe I went to such trouble to find child care and a driver and then voluntarily climb up on that table to get nuked again. I wish I could take her pain away (and yours). Please know how much I sympathize with what she is going through - there are many of us here who literally feel her pain. Hang in there, she's almost done.

[momsCancer]

IT SEEMS IMPOSSIBLE. WHAT'S THE BEST PAIN MED I CAN ASK THE DOC FOR. I'M SO TOTALLY FREAKED.

[bradyr]

I like oxicotin (longer acting) and oxicodone (short acting ). I use them both - the short acting for break thur pain - 4 mg starts working in about 20 mins. the drugs don't seem to make me feel "druged" they just work on the pain.

the cancer in my leg can be as painful as an 8 or 9 and one or two of the oxicodone brings it under control

(off the subject, had a pet scan last week, they showed it to me friday, my leg will need more radation - it showed a 10 on the pet scan active scale - which apparently only goes to 10) which might explain why it's been a bit more painful lately.

[GO BLUE Girl]

MS contin is the oral form of morphine, it is usually taken like twice a day it is supposed to be long acting.....used a lot with cancer pts. Beth