| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | You can get through this. While the surgery sounds daunting hopefully they are giving you a worse case scenario, and they will not have to be so invasive while inside.
hugs and best of luck. You'll get through it.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Thanks everyone. Not sure if Auckland has the talking trach ... will inquire.
Gabe, this tempestuous patient has twice managed to overdose on morphine using the self-administered pump, the tempestuous patient has hallucinations so real she thinks she's living in another world, she has a drug reaction that causes her to disconnect the trache from the humidifier, pull out her naso-gastric tube and run out of the hospital (at night down the fire escape stairs, in her gown) convinced the hospital is under military attack. She can't relax, can't sleep and has other patients in the 4-bed room complaining.
I spent a lot of time on Friday explaining my sensitivity to morphine and the bad back that causes extreme discomfort during the two weeks lying on my back on a hard bed. While the rigours of this sort of surgery might seem a worthy means to a curative end to most people, they are very real to me. I can be a tough and realistic cancer patient day to day, but I'm always a gibbering wreck after major surgery and always have been. When people say you just have to get through it, it's as if they're saying I have to spend two weeks in a dungeon being tortured but that's okay because it will help me survive in the long term.
Every time I say or think this, I feel guilty because I'm lucky to be sort of curable and a beneficiary of such sophisticated microsurgery. But it's how I feel ...
Anyway, strong-minded now. I'm going up Rangitoto Island, a volcano near Auckland Harbour today: Looks a bit hazy for good photos but I'll do my best.
Love to all Maureen
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Oh dear Maureen. Kris too has wild hallucinations with Morphine and won't have it. There are however very good alternatives to Morphine. The best probably being Fentanyl which can also be delivered through a patient controlled pump. When you meet the Anaesthetist make sure he is aware as he will be prescribing the pain relief, not the surgeons. Going to be a lovely day up North today. We are expecting 26 degrees. Thank goodness for air conditioned workplace. Enjoy Rangitoto, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | That's great advice Tammy. I'll investigate the Fentanyl for sure. Alternatives were mentioned but in a vague manner:)
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | I'm just reading this now and see your last entry was a couple of weeks ago, Maureen. How are you doing?
Sending good vibes from a long way off!
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Thanks, David. I'm doing pretty well. Surgery in two weeks today. Long time to wait but I seem to be making good use of the time. My youngest son lives in the UK and is coming down to NZ to "work from home" for six weeks. This ties in with a family wedding at the end of March and enables him to support me through the ordeal of surgery now that my husband is in care.
That has given me a huge boost; I feel quite spoilt:)
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Last week my mouth got really sore, not just the lesion but the rest of it too. Haven't had thrush for years so didn't put two and two together. I was thinking dark thoughts about having to wait so long for surgery and wondering what the cancer cells were getting up to. Finally I looked in my mouth ... not a pretty sight ... went to the pharmacy and got some Nilstat drops. They seem to have worked; there's a bit of discomfort but the soreness has gone. Relief. I have an unexpected appointment with one of the surgeons on Friday ... just two more days to go ... so I'll get some answers and more info.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | YEAH!!!! on the thrush... good luck on the appointment... fingers crossed.
Last edited by Cheryld; 02-11-2014 11:12 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Maureen,
Very sorry to hear that you are going through this again. It sounds like they found it early and have a good treatment plan. I certainly understand your concerns about the upcoming surgery and hospital stay after what you went through before.
I am glad to hear that your son is able to come for an extended visit! Please keep us posted. You are in my thought and prayers. HUGS!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Oh dear. Have just come back from trip to see one of the surgeons. The cancer is a bit bigger than I thought and goes from inside cheek to against gum, over gum to floor of mouth near or under tongue. My spacial intelligence isn't all that good but he drew me a picture.
They're going to have to do a bigger flap than last time and cut open my chin/lip to get access to the lesion. So I'll have a scar up the front of my chin. He said I could be in hospital for up to four weeks depending on how fast I heal.
This surgeon didn't pull any punches. He said the biopsy results were misleading because this is a full scale cancer, lumpy and looking cancerous. It ain't no carcinoma in situ as the biopsy results initially indicated. He didn't seem to be too concerned about the nodes but of course they're coming out anyway.
Funnily enough I took it well. Having a friend with me helped although she looked shattered afterwards, poor thing. I think I expected worse in a way ... It still sounds fixable ... The surgeon is a good communicator and very confidence-inspiring. It's just a pity that the Christmas hiatus period robbed me of a clearer run up to this point. I had the biopsy on December 11!
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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