| | Joined: Oct 2009 Posts: 5 Member | OP  Member
Joined: Oct 2009 Posts: 5 | Hi all,
Lisa here, found this website while "working", so far it has been really interesting. My 60 year old mother when in to E.R. on Feb 12th of this year with an earache. CAT scan, biopsis, and surgery on March 20th, stage 3. Yikes. March 26, Glossectomy on left tongue and mouth. 6 weeks in ICU, 2 failed flaps, heart stopped, etc, etc. 100 days in nursing home, then insurance ran out and they sent hr to me with 3 weeks of radiation still to go....
She is now living with me and my husband and kids and I am so overwhelmed I don't think I am doing anything right for all the members in my family......basically need to vent to an understanding audience. I look forward to hearing from you all.
| | | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | Welcome. You have come to the right place to find an understanding audience to vent to. Can you tell us your mothers present care needs and what problems you are having with her care. I am sure you will have many suggestions to help you cope from members of this board who have travelled the road you now find yourself on.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | | Joined: Oct 2009 Posts: 5 Member | | OP Member
Joined: Oct 2009 Posts: 5 | Her present care is medicine management, PEG feeding, swallowing intake, excercise and confidence are my main obstacles. Her PEG tube has been replaced twice since May due to infection or blockage. She has had MRSA twice. Her radiation is finished and is recovering slowly. She has good days and bad. She is supposedly cancer free, but this is a recurrence she had a partial glossectomy in 2003. Stopped smoking for 2 years then started again....
I am afraid she is becoming to dependent on sleeping pills and pain meds.(methadone 2xday, oxycodone as needed). She weighs 99lbs, 5'2. The docs have her convinced she may need them for years!!!! God I hope not.
I have to leaver her home alone all day while I work and kids in school. So afraid she is going to fall or pass out and my kids will find her. We have already had a heart attack scare and she is now starting to take blood thinners on top of everything else.
She is afraid to be alone too.... | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Have you had a family meeting with her sitting listening to what is said? Let her hear what the kids and your hubbys feeling about her there mean to them and how it has changed their lives. Maybe this will wake her up to what is going on, Why in the world is she smoking. I quit after 50 yrs and haven't touched one again. That sure in't helping her. Tell her to think of her family and her making them breath the smoke after she exhails it. DUMB.. I am on methadone and percs as well as others, but someone took my identity and cleaned me out, but I am living. Can't afford meds right now. I am past 70 and can enjoy life, so can she.
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
| | | | | 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 | We have never known anyone on this site to complete Tx and continue smoking without terminal affects. At age 60, she is to young to give in to this cancer.
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: Oct 2009 Posts: 51 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2009 Posts: 51 | I went in for my first surgery 11/3/08, I laid my smoking down at the front door and never looked back.
I also was a heavy smoker for 40-45 years.
When this cancer came along, it was like God smaking me in the back of the head and saying, "are you going to listen, now?"....That was enough for me.....
57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
| | | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | I remember sitting in the chemo chair as others would roll their IV outside so they could have a smoke.
Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I wonder where in the hell their minds were when they did this to smoke. You can't smoke any where on the Hospital property here. Like you Flip I laid mine down after 50 yrs and haven't looked back either and that was going on 3 yrs ago.
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
| | | | | Joined: Jun 2009 Posts: 51 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 51 | Hang in there...you should see noticable improvement about two-three weeks after the end of radiation. Think microwave...you keep "cooking" for a little while after you're taken out! Can you attend Dr. appointments with her? You could express your concerns about pain meds, or if it looks like she will be on pain meds long term, ask for a referral to a pain management Dr. A pain management Dr. can often fine tune her meds to suit her (and you) better. Make sure your kids have a plan in place if they come home and find Grandma in trouble. Having a plan will give them more confidence and you a little piece of mind. You can always come here for support...it is a wonderful place.
Diane
Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09
| | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | Lisalsbell
Do you think you mother is depressed. Getting anxiety and/or depression medication may help.
Everyone has given you good advice, I wish I could be of more help.
Good Luck.
Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
