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Wednesday, June 11, 2008

Ready to Rumble with the Radiologist

Mom's in a lot of pain from radiation and the radiologist is wasting our time with stupid over the counter bull crap. Here's my post and some of the comments from the colon club concerning this situation.

Me: Mom's completed 22 of 33 hits of radiation. This weekend the burns have started to become pretty miserable. Now on Wed. it's unbearable. The doc says not to miss any treatments but she won't give her anything to help. She says use aquafor which we've done from the beginning. It coats but doesn't relieve. Now she said to get Tuck's Wipes. We got some to try but why can't she just prescribe something to numb it. Also, the bumps are getting bigger and itching worse. There's got to be something that will help. Makes me so mad!

Response: The cream I used is called Silver Sulfadiazine Cream 400GM. It was prescribed when my genital area started to get raw. I couldn't urinate without excruciating pain - I'm talking on a scale of 1-10 this was a 9. I cried every time I had to go. So I would urinate, then use a non-scented baby wipe to gently pat off any residue, then dry gently with toilet paper, then apply the cream (each and every time I had to go). It did give me a lot of relief from the pain. Not 100% relief, but I could hardly function without it.

Me: Thanks for all the suggestions, She's in so much pain and I'm just flat out mad. A couple of weeks ago when it was sore but not unbearable, I asked the radiologist for the Silver prescription stuff (can't think of the complete name) but I took the name of it to her. Someone suggested it from a previous post. Anyway, she said Mom didn't need it now. She looks better than other patients, and to wait. She also said that she doesn't like prescribing the silver stuff b/c it's hard to get off. If it helps her why not give it to her and and we'll make sure its off for radiation. At the beginning, doc told her that the most important radiation sessions are at the end, that it would get painful but not to quit. She said that it was our job to get mom there and she would do the rest. I'm talking to the doc letting her know mom's pain level and that she's asking Dad and I to let her stay home. I'm taking her everyday but with 11 left, somethings got to give. She's all swollen, itching from the bumps, her skin from inside her thighs, front to back is a burgundy color. The heat coming off it is intense. She had diarrhea on Saturday so bad that she couldn't make it to the bathroom and just cried with it all over her clothes and on the floor since she can't wear panties. She took Imodium and hasn't gone at all since. She's scared to take a laxative with the radiation each day and chemo (5-FU and Mitomycin) which both cause diarrhea. Today I brought mom home and gave her a dose of hydrocodeine and an anxiety pill. She slept a lot and would wake up to pee (ouch); apply more of over counter crap, and to drink water. One more thing, I don't think the doc likes me researching and asking so many questions This week I asked about the dilators b/c of the post last week. She said not to worry about it until treatment is over. The nerve of me to ask questions.

Response: i think the painkiller pill prescription is perfectly reasonable - I'm given pain pills for the pain my bones from cancer - when It hurt so bad in the beginning that I couldn't lay still on the radiation table my radiation doctor gave me something called ACT - basically morphine on a lolly pop. why can't your mother's doctor at least give her the pain pills.I think you should visit another doctor and ask for a 2nd opinion - I can understand you're being mad. this doctor sounds almost heartless.

Another Response: remember, you don't have to beg - you can leave this doctor and go to another - yes there that would be a break in your mother's radiation treatment, which would be a complication for the next doctor, but you are the patient and you can "vote with your feed" and leave her care at anytime and get a new doctor.the only complication is this doctor has you a little over a barrel that she has started this treatment and it's much harder now to switch to a new doctor.but only harder - not impossible - pain relief is the right of any patient, this doctor wanted to take a wait and see position on the cream (because she thought the inconvenience of removing it was more important than her patient's pain relief) some form of pain relief seems like the the least she can do now. if this doctor can't see that, I'm certain there are any number of other doctors who surely would.and regardless, I would switch doctors after this whatever the outcome. clearly this is not a doctor who is working as a partner in this treatment plan, but running the show how she sees fit.I'm not trying to inflame the situation here, but it is important I believe that you and your family take charge from this doctor.

And Another - I hate to say this, but this doctor sounds cruel. When I went through radiation I had a lot of difficulty as well, but my radiation nurse would meet with me at the drop of a hat (which for a couple of weeks was every single day) to try to find a medication or other procedure to help me deal with whatever side effect was bothering me at the time. And the doctor was available as well if either myself or the nurse felt she couldn't adequately address my issues. They were very compassionate. I had tons of prescriptions - all for different issues and if one didn't work we quickly moved on to something else.I brought up the vaginal dilator thing and the nurse told me they would normally discuss it after treatment, but as I brought it up and wanted to discuss it earlier, they were more than happy to discuss it and answer any/all of my questions at that time. After treatment we went over it again and I got specific directions on what needed to be done.Of all the professions to have a poor bedside manner, a radiation doctor, yikes. I am so, so sorry your mother is having to go through this.

Another - P.S. - the silver sulfadiazine cream is NOT difficult to get off. Before I went in for treatment I would take a shower with soap/water and poof! It came off - no scrubbing, no nothing, it just washes right off. Where the doctor gets the idea that it is hard to get off is beyond me. Cruel I tell ya.

Last One - I was "turned in" by the radiation technician because I wasn't telling the radiologist how much pain I was in. Boy oh boy did I get a talking to by the nurse and the doc.They were so upset with me because I was "suffering in silence". I get tears now when I remember just how kind and compassionate they were to me. I am so grateful to them because I know I would have not been able to finish my treatment without their care and support,Your Mom deserves better treatment.

For more comments, click below:

Radiation getting Unbearable 1, 2by momsCancer on Wed Jun 11, 2008 12:21 pm

I've bragged on Mom's radiologist saying how lucky we are to have her. But now that Mom's pain is high and still climbing from the burns and she still wants to try to appease us with over the counter bull crap, I'm running out of patience and getting flat out mad.

As if that's not enough, I think this week's chemo is showing it's ugly head in the form of bad flu-like symptoms. But unlike the burns from radiation, the oncologist at the chemo treatment center prescribed plenty of drugs ready and waiting to attack the chemo side effects and his head nurse said if they don't work, they'll quickly find something that will, just to call her. The radiologist at the hospital needs to get with the program!

Hopefully tomorrow we'll come home with some prescribed drugs/ointments to relieve the burns from radiation. She's gonna need that and more to help her ride out the next 11 hits of radiation.