#76949 07-14-2008 05:17 PM | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | Hello everyone,
Mom had another round of chemo on Friday. They sent us home with the 5fu pump again. The doctor acted like her initial reaction was because of anxiety. I know my mother and it wasn't. That didn't sit well with her. That statement was followed by him telling her she was going to have to do 3 more rounds of treatment. I wish you all could have been there to see how mad she was about it. We were initially told it would only be 3. We are at least getting a scan done in 2 weeks to see if this awful stuff is doing it's job.
After we got home mom was okay until the third morning of having the pump on (just like last time). My 10 year old niece woke her up in the middle of the night saying she was making scary noises in her sleep. She came and woke me up and sure enough she was having the same shortness of breath as she did the first time. We rushed to the ER and after a shot of some steroids to stop the swelling in her throat and oxygen she was feeling a little better. They gave her a dose of potassium because the doc said it was low but it didn't sit well. Just was the nurse left the room she started to throw it up. She has been having problems with very thick mucus phlegm. She was throwing that up as well and some of it lodged in her throat. She couldn't breathe and was panicked. I got the nurse because he was outside of the door and he just looked at her and yelled �what do you want me to do?� I yelled right back that she doesn�t know what she needs but she can�t breathe. He got the doc quick after that. Jerk. He�s almost always there when we go to the ER and he is always an impatient jerk. Mom was really upset and scared after that. Eventually I brought her home and she was feeling better. Am I expecting too much from the medical staff? I don�t think it is unreasonable to doctors and nurses especially to show a little compassion. She is obviously scared and it�s like they forget they are working with humans, always so rough. If mom says something was real and wasn�t anxiety I think the doc should give her the benefit of the doubt. He doesn�t know her he has seen her for maybe 45 mins total since he started treating her.
She got neulasta shot and fluids today so she is having awful bone pain. I�m thankful that there is a shot to keep her white blood cells up I just wish it didn�t make her hurt even more for a few days. You guys know how stubborn she is about taking pain meds. She said the other day �I bet Jerry on the board would be pissed I wasn�t taking any meds right now.� I have convinced her to at least take half doses to stay ahead of the pain.
Nellie�Mom loves your cards. They are on the mantle and on her end table by her chair. I hope you know how much they have lifted her spirits.
Mom misses all of you and always tells me to look on the site to check on everyone.
You are all awesome!
With Love,
Amy
Last edited by Amymcca; 07-14-2008 05:19 PM.
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Amy:
My heart goes out to your mom. She is such a strong woman. Its awful that she is treated like its an assembly line at the hospital.
I will say a prayer that she starts to feel better. Chemo is horrible to go thru. Hearing that she needs more must have been so disheartening to her.
Glad you are keeping us posted, we are all pulling for your mom. Thank you.
Christine
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Mar 2007 Posts: 163 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2007 Posts: 163 | Amy
Your feelings are very valid.. this guy is a jerk!
Your Mum is a very strong lady who does not cry wolf.. they should know that by now. Please let her know she is in our thoughts and prayers.
Take Care
Marica
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Amy,
Thanks for the update, even though it so tough to read about all that your mom is going through. If anyone can come through this, it is she. Bad enough to have go through all this and to have unfeeling people in charge of your care, it is just so unfair.
Tell your mom that there is no shame in controlling her pain. This is not the time to be a martyr.
Please give her my love.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Read your post and just felt furious. Next time tell the guy that he is not working at a vet clinic - he is dealing with HUMANS and that is what he is paid to do.
I will join the chorus and encourage your mom to take whatever medication makes life a bit easier. The last martyr I heard of got burned at the stake so that is not a good course to follow!
Thanks for the updates - think of you all often.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I have many animals and I have never encountered a vet tech with an attitude like that so I would report him and I bet it won't be the the first bad comment he's received. maybe, just maybe, this one will be the straw that breaks....
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Amy, I got really angry reading the story about how your mom was treated too. I can't believe a doctor would dismiss what happened to her as anxiety when it was so serious and then let it happen again. And then she has to go through such treatment in the ER! She is such a trooper, and has been through so much. This is the last thing she needs.
About the pain meds, please remind her that she posted to me over three years ago when I was in treatment and resisting taking the pain meds and told me she had felt the same way when she was in treatment but that I really needed to take care of my pain and not be afraid of them. I wish I could find that post because she needs to take her own advice now....
I will keep those cards coming as long as she is fighting this battle and keep her (and all of you) in my prayers.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Amy,
Is this at John Hopkins or at your location at VA Beach? It hurts to think you are treated like that but I was telling my dentist about how I was treated in radiation and he could not believe it. He said he thought you would be coddled there because you needed so much attention, but just the reverse, I think they get too hard and cut off from the world. Tell him he could be in the same shoes one day. I said that to anyone mean. HAHA
Please tell her I agree that the meds are what she needs right now. I could not breathe either for a couple of days and it is downright scary.
Makes me mad about the 3 more times stuff. Maybe not after the scans.
God Speed,
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | It was at our local hospital. She has always been treated wonderfully at hopkins. I wish we were able to do her chemo there. It's just better for her to be home.
Amy
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | This post has me teed off at that Nurse. I would do my best to have his job and when I felt better to have a piece of his A-- too. I have never had a bad nurse yet and have been treated with respect by each of them. Your mom is in my prayers.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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