| | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Oh Bren, I am so glad the pain is getting less. My kids teased me
about drugs because I had to be very well medicated when I went to radiation with the mask. I could not take it. One morning, after treatment, my husband dropped me off and I told him to please go on back to work, I was fine. 5 hours later, I woke up in the living room chair with my coat still buttoned, my hat still on and the fireplace going. I was sweating. My son got up and dressed for work and kept passing me. THe next day, he commented on my new drug habit. It was amusing in a way, I was scared he was serious, but just pulling my leg. We all just do what we can.
My heart goes out to you. Keep taking notes and keep us laughing with your humor!
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Debbie,, you sure had a serious time that day LOL.. but I'm glad the drugs helped you and eased the pain like they did.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Brenda has been my hero here since I joined. She is always encouraging others and showing her feelings about what we shoukd be doing to ease our pain and lessen our worries. I have a feeling we cover our , Brenda and I by trying to be helpful and make others get a laugh or a smile.. as for that stiff lip,, take a hammer next time you go and rearrange it into a smile for them. It just might make them start thinking just how bad your pain is. You are my idol Brenda,
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I hope you don't get upset when I post the wrong name like i did 2 posts up. LOL Sometime I get kinda DUH like and don't think.. And before you say anything David,, my thinking doesn't violate the child labor law either. LOL
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: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Brenda, happy to hear the pain is under control and I wish you all the best.
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Well, it's 72 hours since I started my new 'pain regime'
I seem to have run the whole gamut of emotions since the biopsy last Wednesday, through pain, anger, despair, fright and elation.
Today I feel calmer generally.
Saturday, the morphine kicked in big-style and I felt relaxed and totally pain-free, even the excision site didn't feel so sore.
I slept realy well until about 5a.m., then woke up with searing pain in my side again. It subsided a little when I sat up, as it always does, but certainly needed another pill! And had 2 supplement during the day with Ibuprofen.
Wasn't anything like so comfortable during Sunday, and felt more sleepy. But was also seriously worried about my original lump which continues to grow and hurt.
Looked it up on the net.....hmmmm....certainly, if it isn't yet, it has all the potential to very soon BECOME a gross fungating skin tumour--and you all know what those are like--Yeewwww!
So with that of course came the fears that I won't be able to go away next month etc., etc. and is it leaving it too late to wait til next doc's appointment on 30th? All that kind of negative stuff that slides under your guard occasionally.
But woke up this morning feeling more positive (mainly I suppose because the pain wasn't so bad)so went out and bought a book on Cyprus anyway!
I also spoke to the doc on the phone this morning, I now have the
MST 12-hour release tablets, plus the shorter acting ones which I can take for Breakthrough Pain.
And the 'whole thing' should be in my system within the next 24 hours, so should be functioning better from now on.
Still worried though about 'catching' the top of the neck lump with a brush or comb and opening up some revolting can of worms!
Thank you everyone for your support and suggestions, I really don't know what I would do without you all
Brenda x
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 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Brenda
Thanks for the update..
Am pleased that finally it seems the pain is under some sort of control..
Of course you can go to Cyprus.. its not far and they have Docs. Do they operate like the EU with free emergency health care for us brits?
Hope you have a good night kid..
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: 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 | Finally some positive steps in the right direction.
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: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Thanks so much for keeping us up to date. I think of you so much.
You'll make that trip yet!
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Brenda , that is the best news I've read today. Finally , you can get some much needed sleep and ease the pain before it gets too bad. Pulling for you to make that trip.
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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