| | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | See Lady of course you could do it..
So now make a list of the questions to ask Friday, I want to hear that you have sorted the pain thing..
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Brenda, I wish I could do something to comfort you. You have had so many things done to you. I don't know if I would be tough enough for it. You are sure one tough gal. I do have you in my prayers and thought about you all day, even when talking to the Chemo Oncologist. I'm glad my daughter left work fo 2 hrs to hear what he said. Get those toofys out tomorrow at 1 but I will be looking for a post from you and how you feel when I get home.. Use those pain things big time.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Brenda,
Your humor and wisdom seem to be faring well.
I am praying anxiously and waiting to hear that your pain is completly under control.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Hey Bren,
So glad you have that part behind you now. Anticipation is worse than the actual part sometimes. I will hope that you can get the
pain so you can handle that. I do hope you can find out about the biopsy as soon as possbile. I have been checking every day on you. Please know that we all are thinking of you.
take care
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: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Oh boy--am I ever a moaner these days!
In spite of discomfort from stitches and all other usual pain sites, got a good few hours sleep.
Then what do I find this morning in the bath???? Oh goody, yet another lump--left breast this time.
So this now brings the total to 7--or 6 if you discount the one removed (at least partially) yesterday!
How many more will appear before I go back on Jan 30th I wonder??
They seem to be 'popping-up' faster than a teenager's acne!!
Will cry on MacMillan nurse tomorrow and beg for something to totally blot out all reality for a while.
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Hi Brenda,
I'm keeping you close in my thoughts these days. Moan all you want - you certainly have reason!
Hugs,
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Brenda its time to let the Yorkshire defences down and just be a blubbering mess.GET A PATCH get two or three ,get anything you need girl because no one needs to be in this amount of pain.Dont hold back with Macmillan,let them have the real low down with both barrels.
Please Brenda you dont need to keep on doing this tough!!
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Oh boy,
One blubbering helpless mess here right now! Taking advantage of the fact I'm not expecting phone calls and Ray's sleeping peacefully after his night-shift. It's midday, but cold wet and miserable and dark outside, so have shut the curtains and put the light on. It feels like such a relief to just sit and cry!
Denise, McMillan nurse came round and was absolutely lovely.
We did all the 'pain-assessment' stuff/situation so far/treatments/personal/work/social life etc., so all the boxes got filled in.
I told her I'd finally decided to go with the Fentanyl patch--you lot are SUCH bullies! And asked her for more anti-anxiety stuff-she thought that was a totally reasonable request!
She did gently ask me if I knew I was dying---hmmmmmm, having it put into words like that aint too good, told her I was pretty sure that palliative radiation is probably not on the cards now, and she agreed--oh heck--and so we talked about 'end-of-life' issues--I told her, home or Dove House Hospice--anything but hospital! And I'm 'ready to be told days/weeks' on 30th, but of course, aren't really!
My knowledge, prior thinking, discussions with Ray and kids and friends, diary entries--all rational and calmly discussed--but Hell, when it comes to it--whole different ball-game!
She agreed it's gonna be difficult for ME to come to terms with it, then there's the issue of how to tell my beloved children,friends,siblings????--Oh boy, am I ever gonna need those happy pills!
Have done--or tried to do--everything for the last year in a calm, controlled, planned, humorous-but-factual way---have slapped on 'happy face' and 'happy voice', kept everyone up-to-date, done all the practical stuff like wills etc.
But right now--death 'soon' just seems so near--and I'm not sure I'm ready! The irony is, after the last 10 days of bloody awful pain, everywhere, today I'm only on a scale of 3!
PeteyB wrote all kinds of inspirational stuff in the last weeks/months--I feel so dull and uninsightful by comparison.
But hey---maybe the drugs WILL work and I can float and get poetic for a while before I go!
Just a note to all you Caregivers facing this with parents/spouses/friends--we all deal with it differently, this is the first time I've actually felt 'alone to sob and to just feel what I feel' instead of 'pretending' and trying to be all 'positive and fighting'.
Ye gods Liz, what a can of worms you opened for me there!!
Feel better for a cyber-ramble and now eagerly awaiting the phone-call to say I can become an official drug-addict!!
SORRY everyone for that,
A watery-smiley Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | 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 | Brenda,
Anything you have to say is worthwhile reading to me. Hope you do become a happy smiley person real soon.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Bren,
You were one of the first ones to respond to my post "Good News" regarding Bill's first scans and post treatment assessment. I thought to myself..."How can you even read these positive posts when you have death staring you in the face?" I don't think I could!
So consider yourself relieved of being on the cheering squad and let us just be there for you, good and bad, pain or not, crying, whining, aware of your fate, ignoring your fate...whatever..we will listen and support you.
I think we all feel powerless to know what to say other than, I am here.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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