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#9670 02-23-2007 02:06 PM
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Yes, that makes perfect sense.
Please tell your wife she has friends here and she's not alone. I'm sorry she had to go through that turmoil. From joyous relief to dreaded unknown within minutes. That's unfair.
As women, we experience emotions so intensely, it's difficult, if not impossible to shake them off.
I say another kiss is in order.
Flowers too.
What the heck, throw in some champaign and lobster while your at it!
It's been a rough week for you two, time to enjoy the weekend!

Sincerest wishes,
Ginny


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
#9671 02-23-2007 02:20 PM
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Tim, Carol and Ginny,

I appreciate your remarks, well Ginny got a little carried away, but anyway she has had time to absorb a lot more than I really wanted her to and she outwardly appears OK.

She's the type that holds things inside way longer than it's good for her so I'm walking that thin line between asking her if everything is OK and do you want to talk about it AND not bringing it up hoping she's dealing with it. Boy you women are tough to deal with sometimes....hummm, well most of the time.


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.
#9672 02-24-2007 12:23 PM
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Sorry, I made a mistake and couldn't delete the post so I did this.


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.
#9673 02-26-2007 02:10 PM
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You stated your wife is the kind that keeps things inside way to long than is good for her. You are walking the thin line.
I have experience with keeping things inside way too long and it was not good for me. When the diagnosis was made I could not cry. I could not say it out loud, I hid by burying myself in research. Then I couldn't breath. Mike walked that thin line too. Kept asking me if I was ok, I kept telling him yes. He kept inquiring, then he saw how I could'nt breath. The crying started and came wave after wave. Then I could breath. He was as relieved of the tension as I was.
Keep asking your wife if she is ok or wants to talk. If she needs to she'll know its ok.
Mostly we are worried we will upset you and don't want to appear selfish and self-absorbed. We think wer're supposed to be stable out of respect for your rightful emotional turmoil.
Hope that made sense.
Ginny


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
#9674 02-26-2007 05:14 PM
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Being stable and not self indulgent is a "self imposed" caregiver rule. In my experience, it does not work very well. What did work for us [after some trial and error] was "You have a serious illness and I am very scared". That cleared the way for us to have many heart to heart communications about what we were dealing with and what might present itself in the future. This is a tough road to travel and in our experience, honesty is the best policy. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#9675 02-26-2007 05:53 PM
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David, I just wanted to let you know you and your wife are in my prayers. You help alot of people here and I hope that you recieve a clean bill of health. I will be looking this post back up in a few months to look for wisdom to help me and my wife in the after treatment phase. One day at time my friend. Lee


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
#9676 02-26-2007 07:17 PM
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David,

Yes us women can be difficult.... and very emotional or like Ginny said at a time like this we try not to be , at least in my case too . I only cried when I 1st heard the diagnosis, and a very few times alone after . now after treatment somtimes I have my bad days and everyone now says why be upset "its gone" but as you said Maybe its never gone forever just for now. And I tell them I am entitled to my bad days , because that is how we get through it . And I must say david you are a wonderful inspiration and to me a tower of strength and you show us all we can make it through ..one day at a time ......


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#9677 02-27-2007 02:37 AM
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I am astounde by the level of information that patients in the United States get to know about and share with their Doctors.In the Uk unless you persistantly ask for information it is not forthcoming.No ne has mentioned to Rob and i anything about his radiotherapy dosage or the level of his tumour or the stage of his disease.Most of the stuff i find out is persistant questions and sneaking looks at his notes which spend more time lost than with the Doctors.If it wasnt for you guys we wouldnt know anything about skin care and diet and he hasnt even been offered a PEG.Scans are like a trade secret that no one else is allowed in on,the most comment you get about them is "oh nothing to worry about" and that is only if you ask.Robin and i had his cancer diagnosis confirmed during a pre op exam by the Registrar when he went for his tongue biopsy because i asked if they had any results of the needle aspiration of his jaw tumour. The doctor seemed surprised that i asked and even more amazed when both Robin and i welled up with tears when he casually said "oh yes there were a number of cells that were confirmed as cancerous" then when he saw me sniffing and clutching Robs hand he asked if the news had come as a shock.
You seem to have great insight and knowledge about the course of your disease David and i am sorry that this slip up caused you and your wife some distress.Unfortunately for us across th pond it tends to be the rule that the right doesnt know the left hand exists rather than the exception.


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.
#9678 02-27-2007 04:10 AM
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Cookey - As a former Brit (I was born in the UK, came over to the US as a very young girl with my family) and someone who has experienced this second hand talking to my relatives still in the UK, I know it's very different there. Perhaps if patients like you begin demanding to be seen as an equal partner in their health care, it will start to change. I know that the higher-ups in the UK proclaim that this should be the way things are - there is a large technology project going on there called "Connecting for Health" and one of the benefits is supposed to be for patients, "Easier, secure access to their own NHS Summary Care Record via the Internet, so they can be more informed and involved in decisions about their care and treatment." (if interested in learning more about this project, here's the URL http://www.connectingforhealth.nhs.uk/)

Sharlee - I know exactly what you mean. Now that I am 9 months out from my surgery, I think most of my friends and even family think I am "cured" and never have to think about this again. And, I think it is a little different when the husband is the caregiver - not that my husband and all the rest of you out there did not rise to the occasion and excel, but emotionally men and women are different, and the fact is that women are more naturally caregivers - that's why over 90% of nurses are women, etc. I also find myself not telling my husband all my fears and scares as I don't want to worry him....


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
#9679 02-27-2007 03:23 PM
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Hi David,

Jack also holds things inside way too long and I know that thin line very well. What you are saying makes perfect sense and we are dealing with it too. People seem to want to hear one extreme or the other - either you're sick or you're better. They don't understand the world in between where it's never over and you're living with uncertainty. That's the other reality of being cancer survivors - we're always trying to decide if we should be worried about one thing or another because we can't tell without scans or exams. I think you just chalk it off to some days go better than others. Glad to hear your wife is getting more perspective on it as time goes on.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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