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Joined: May 2007
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Well, bolstered by everyone's encouragement, I went to bed last night determined to do battle this morning!
What I hadn't bargained on was being unable to even lie down in bed beacuse of the pain and in spite of 2 AdvilPM!
So I spent the night on the sofa, alternately playing computer Majhong, dozing, reading a magazine and taking more co-codamol at 5a.m.
Was almost just gonna ring for ambulance and get taken into hospital (my ambititon is to NEVER spend a night in hospital!)
Tiredness and last lot of pain-killers kicken in tho around 5.30 and I lay down and got 4 solid hours sleep!

Whilst debating whether to ring hospital to speak to Julie, my cancer nurse there, or Diane the cancer liaison person at surgery, phone rang and it was Julie to ask how I was doing!
I promptly burst into tears and told her! Upshot was, she's put me in to the 'full MacMillan system' whereby a nurse will visit at home for full pain management. She also said to demand to get to see GP today about anti-anxiety meds, and if I got no joy, to ring her back, she would put pressure on.

Blew my nose several times and calmed sobs, rang Diane at surgery--explained--she said McMillan stuff may not happen immediately as there are only 2 specialised nurses for whole city, but said she would have a word with the new doc who has joined the team. She was trying to be professional but managed to give me the impression that he might be more thorough and sympathetic!

Surprise, surprise! 60 minutes later the DOC rang me--unheard of in my practice, summarised/verified the situation, said he would split the Co-codamol into separate Paracetomol and Codeine, so I can 'mix and match' to include ibuprofen to get maximum benefit for pain, gave me instructions on 'experimenting' and said this is the 'bottom rung' of the pain ladder and to report back to him if I decide to go on the patch/need more relief.
He said any medication should not just be 'taking the edge off', I should have NO pain.
When I gathered my breath and asked about anti-anxiety medication, he said no probs and the new prescription would be ready in 15 minutes---WOW!!!!

So I now have all the ingredients for pain-relief and hopefully, some good sleep to see me through Wednesday (10 whole tablets of 2mg. Diazepam!!!!!)

I'll let you know how it goes!

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!
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Hi Jim! You made my choke on my coffee this morning...you know I think my Centipede TAPDANCES! NO! There is a troupe of them and they are rehearsing for that musical 'STOMP'...or maybe 'RIVERDANCE!' HAHAHA You really made me giggle with the thought of your little centipede lacing up his golf spikes thinking quietly to himself "man there has to be an easier gig than this?!" hahaha...You should name him!!! Lets see now..."Presenting!! LIVE IN JIMS MOUTH NIGHTLY!! King Kancerpede with his 1000 little tappity shoes PLUS the Kancettes (his little back up centrepededs!) ouch....hurts to laugh...but its GOOD to I think! hahahaha! I hope he has sore feet todayand decides to have the day...no...YEAR off! have a good one everyone Love from D.U Lyn xxxx


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
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Bren
Proud of you lady cool
This new Doc sounds better, he is quite right the aim is zero pain. Shit to rest of them are they thick or what.
Will I see you floating past on Wednesday? laugh
Take Care
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
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Good for you Brenda!! I hope you get some nice rest and relaxing done with your little pills of joy! Its such a pity we are on different time zones as Im usually pacing around looking for relief of some sory in the darkest part of the night. We need CAPES so we could at leat look the part!
Im going in today for another session of "well your pain level really should be under control we just dont understand it" Meanwhile I will try an open my mouth to say something profound like "OW" and I guess I will be sent home with a few more tabs to try. NOT happy. All I need..and Im sure this is how you feel Bren, is just ONE day of being TOTALLY zonked out to the point where people actually THINK Im off my tree...and then to stumble off to bed to Sleeeeeep withOUT pain sleep...ooooohhhh just ONE night! You know Id pay more for that than a Pink Floyd Concert supported by the three remaining Beatles with John being replaced for the one night by Eric Clapton (you get the drift) hahaha just ONE!

So, keep your [sore] chin up Bren. I believe you will beat this stupid thing and we are here cheering you along...you know my fav quote about "a log goes out trying to stay alight on its own, you need lots of logs to make a great big warm fire"...consider us your logs! Love from D.U. coolLyn xxx have a greay day/night all!


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
Joined: May 2007
Posts: 632
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Hoping to be 'warm and fuzzy' enough to apy a visit to the island!
No wine bottles to land on my stitches!
Lyn---you just SO have to write a book! Can you incorporate the 'little men with knives which inhabit mine and Donnarose's mom's mouths???
Hey, you're a muso--I feel a best-selling musical coming on---could be SO dark and funny!!!!!!! You and the hubby get cracking--new direction for career!

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: Dec 2007
Posts: 46
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Thanks Bren, I just hope i can bring a few laughs ...even just smiles on the inside of the members of our club in the most horrible pain...a spark of fun and mischeif to an otherwise SHITTY place to be ...not the forum...this is the BEST place to be...I mean where our roads have bought us on this part of our journey....We are all in this together and thats a good feeling....no needs to feel alone. AND there is ONE thing thats for sure...there is ALWAYS ALWAYS someone worse off...that why even though I hurt too, someone hurts more, so its my job to give them a lift if I can. thats all!

I sen peace and love to you all from tha warm and crazy land of 'CRIKEY' (we did love Steve but truly noone ever says that over here! haha) Lyn grin


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
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Posts: 5,260
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I knew when I saw Lyn on that post I was in for a laugh. LOL I sure wasn't disappointed. That lil centipede has compnay today.. They are having a drunken family reunion in my mouth and throwing beer bottles. If they keep it up, the oral surgeon won't have many teeth to pull. I rinsed with insect killer and those little shits drank it. 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: Jun 2007
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I knew when I saw Lyn on that post I was in for a laugh. LOL I sure wasn't disappointed. That lil centipede has compnay today.. They are having a drunken family reunion in my mouth and throwing beer bottles. If they keep it up, the oral surgeon won't have many teeth to pull. I rinsed with insect killer and those little shits drank it. 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: Jun 2007
Posts: 5,260
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Brenda, the best news today is that you finally got some meds to relieve some of your pain. I agree with Lyn that you will beat this crap and live another 20 or more years. Will keep up the prayers for you .You are one tough lady. So is our comedian Lyn. LOL luv ya both


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
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Brenda,
What a great response from your medical team. I am so happy for you thaqt you have found relief from ther pain and anxiety. At least your sense of humor seems to be working so you can't be too fuzzy from the meds. Rest up and know that we are all praying to hear that you are on the island relaxing and enjoying a beautiful day of blue skies and cool breezes. Just stay in the shade - you know too much sun isn't good for the complexion!!

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.
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