| Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Thank you, Gary and Brian. This is very good advice. J always likes to say the difference between me and a pitbull is... lipstick. This is one area where I'm going to have to just trust. You two are right. I have to do some accepting here and not push. I need to just follow his lead and be supportive. You two have gone through so much and understand what he's going through. Thank you for the insight.
Nothing about his whole situation has been normal and I feel like I've had to be on my toes the whole time. We were in shock when we got the 1st DX, We were so happy when we got the 2nd DX, then the 3rd DX really messed with our heads. I cried for a solid week. I've gotten so used to being Ralph Nader that I've forgotten how to be a wife. It sure doesn't help that I'm prone to being a control freak as it is.
Thank you for giving me some tough-love in a very kind and gentle way. I really needed to hear all that you two had to say. The pitbull is on a leash and I'll put away the lipstick.
You guys are the best!
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | Sandy, on 5/1, you mentioned pitbull & lipstick in the same sentence. Neither are you a pit bull, or even need lipstick. I think if J doesn't want you around, move on. If he does, charge him a carers payment!!.. The men that are part of this forum are legends. The others are scared. If we were all the same, there would be no forum. I feel for those that are scared, but they need to have respect for their caregiver. Without the carer, the patients may not be still living. Makes me cranky that even my brother won't get a prostrate exam due to fear, as he is gay. I would rather have a prostrate exam than a pap smear!! Don't worry about things too much if there is no love.....there still needs to be an element of care from you if you are still there.... Jeans.... he might have to learn the hard way hon.....J....xxxxx.....Too many men think they are heros, but they are sooks.....
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Oh, Jeans! Love you! xoxoxox!!! But what's a sook?
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Sandy, I was wondering about the term "sook" too, so until we get confirmation from someone down under, I looked in my Urban dictionary which says it is "An Australian slang term used to indicate another person is soft, easily upset or just a plain p. . . . ." (or "wimp". Wasn't sure the "p" word would be acceptable in polite conversation).
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Was waiting for Jeanna but just can't help myself = it cracks me up that we all speak English but we have so many sayings and terms that just don't translate. We don't even realise we are doing it half the time. You are right Anne-Marie, a sook is a wuss, a cry baby, a wimp. Just imagine your husband sitting in a corner with tears in his eyes, bottom lip trembling when his favourite football team loses and THAT is a sook!
ohh.... THAT P word - yes, spot on!!
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Thanks, ladies! I'm thinking "because the patient is a sook" may not be quite what Charm was expecting as an answer to his original question. But, I suppose it could be a valid reason!
I admire anyone who gets a DX for OC and manages to stay sane. I'd be a sook, for sure.
I'm just learning Strine and Kiwese, so thanks for cluing me in. Jeanna has taken me on as a student. Brave woman!
Anne-Marie--hahahaha! I'm pleasantly shocked!!!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | As usual, the overseas component of OCF tells it like it is. I started this thread because I had preconceived notions of the answers and these answers have validated the majority of them. It was very helpful for others to spell out these apparently disparate reasons especially the more controversial ones (like "sook'). Like in racial issues, comments by the actual class members are acceptable where the same comments by a non class member evoke criticism and outrage. So primarily female caregivers acknowledging issues that keep their male patients off the board can articulate them as just part of their loved ones character or in some cases, out of character. Were I to say the same things, they would be misconstrued as attacks. It's no secret that I favor the indomitable fighter model exemplified by ChristineB, EZJim, EricS, DavidCPA, Brian and many others too numerous to list individually (but you know who you are!) I'm in the process of drafting an article that teases out the threads of these comments and weaves these disparate motives into a understandable narrative on this but if my current production timetable (as opposed to contemplation timetable) on my other writing projects holds true, it will be a year before I;m finished. It will be my opinion but one confirmed by your responses. In the meantime, thanks to everyone for responding so honestly and candidly. And for those on OCF still reading, The thread is still open so it's not too late to add your story. Keep the Faith
Last edited by Charm2017; 05-04-2011 07:04 AM. Reason: toned it down
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I have to say sometimes denial plays a big part too.... When my mom was diagnosed with terminal lung cancer - being the only child I had to face it head on and deal with it - at one point near the end of the whole thing - I said to my husband - well my mom is going to go - I have to make a few decisions. My husband is the king of denial - he said don't talk like that. - it wasn't negotiable. I knew it was going to happen -particularly because at that point I had seen the scans of her head with the brain mets and 6 tumors...
Don't get me wrong - my husband is a great guy. But he is also someone who would choose to ignore the stats and do what he was told by the Drs. And not want to know the rest. That's just his makeup - he's very lucky that his parents are in their 70s and still healthy so he's never had a hit home experience - to this point - he was very upset when I got my diagnosis, but knowing the type of person I am - he "knew" I could handle the details. He came with me to Drs. Appointments and surgery and all that - but he was never actively involved in my treatment or the decision process. I had him drop me off on chemo days, but other than that I drove in for rads by myself everyday. If the tables were reversed. I would still be the one here researching for him. That's just the way he is.
Last edited by Cheryld; 05-04-2011 09:44 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: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Mar 2010 Posts: 126 | I've often wondered why it is that I've come to this forum and Gordon never has. He never wanted to read anything about the cancer, treatment, care, or anything even remotely related to it. I've been the one who has done all the research, tried to convey information that I thought would help him, advised him on how important the dental care is, etc., etc. I'll never understand what's going on with him and probably never will. Maybe he left all of the above up to me because he could barely cope with the idea that he had cancer and that he had to go through treatment. Maybe he couldn't deal with anything more than just getting himself into that radiation room every day. Sure, I would have liked him to be on this forum, be more proactive and take more responsibility for his treatment and recovery. But he didn't, and that, I think, is that. Charm, I think your question is really one of the great imponderables. I like to think that if I were the patient, I'd want to get all the information and support I could find, but maybe not... Anne PS - Gordon's surgeon said recently, "you're going to die of something, Mr. W., but it won't be tongue cancer." He has a weird sense of humour. 
Last edited by Elianne; 05-10-2011 09:12 PM. Reason: grammar!
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Charm - I, too, favor the indomitable fighter group. I am awed by them. Their strength and compassion and knowledge have been instrumental in helping my son to survive. I am more than grateful every day that we have them. That goes for all the caregivers who fight on, gathering research and doing all the things they do to help their loved ones to survive. They have given me a courageous example to follow. I don't know if I'm the only one, but there were many times, when I was glad my son was not a participant on this forum. It "depressed" him, he said so he was on here only briefly. And I understood because I only needed to remember the anxiety I felt when faced with the shocking diagnoses of cancer and the possibility of losing him - and I was only the caregiver! I was glad that I could be here and freely express my fears away from my son to whom I presented the "fighter Mom" mode and only cried when I was away from him. Anne - Maybe Gordon left the research up to you because he knows your strength and love for him, and has the confidence in you to be able to allow him to use all his strength to do the surviving part of the fight. I'm glad he has you.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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