| | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Thanks for the Amazon info Bryan, I can send that info out via facebook to let my friends know to order via the link.
Jim, I really think you'd enjoy the book, personally it was a must read for me. To be honest when the going got or gets tough I think of the road you've had to travel and it gives me strength to know I can do it.
Philly, I sent a friends req via facebook, keep strong. Seeing the amount of strength my wife has had to show through this whole ordeal, I give it up for caregivers everywhere. God bless you.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | Philly,
I wasn't a model patient either (if there is ever a model patient) and resisted all normal attempts to treat me properly as I just didn't want to admit I was sick and need help. I know Liz was put thru the ringer as we say and it sounds like you have a tough situation as well but if it wasn't for my wife's persistence and nagging and finally tough love I don't think I would have finally come to my senses, I guess what I'm trying to say is I don't think there's one answer to any caregiver's problems. Hopefully you will find the KEY to open David's mind. His life may very well depend upon it.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have seen since I was just a toddler rhat the ones to get hurt in the battles are the ones the mean loves. I do believe my mom told me about it.
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 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | I will also be praying for your husband, and for you. Hang in there. I have nothing better to add than Eric's advice.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Brian,
I recently purchased about 8 items through Amazon via the OCF link. Do they give you a breakdown of where the money comes from as I am curious if my purchases are getting through to OCF.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I'm the same age as your hubby...and I was a good and bad patient. Sometimes things were fine and other times it was just down right hard. If it wasn't for my GF and parents I would have never made it through this ordeal and the people on this site helped me get through it too. Everyone needs help...and not just the patient.
Men and women...in very primitive terms a man is a hunter and a woman is a nestor and when something disturbs that very basic instinct things can get messy. Like others suggested, I would consider therapy.
take care and stay strong
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Margaret,
i haven't been on in a while. call me tonight!
Philly,
I will keep you in my thoughts and prayers. I liked Liz's post--so true. i was lucky my mom was kind of easy through the treatments, she did what she was told to do. NOW, well, that's a bit different. Trying not to judge, i can't even imagine what type of patient i would be and after.
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Jul 2009 Posts: 5 Member | | Member
Joined: Jul 2009 Posts: 5 | We live with one of George's doctors as he is our son in law. we lost our home and everything that went with it. For some reason George thinks he is the only one who lost things. Yes it was just stuff but it was ours. I am 61 and George is 57 so starting over isn't easy. I so understand your feelings about your husband. We team drive cross country 5000-7000 miles a week and sometimes I just want to jump out of the truck and run away. A shopping stop even at Walmart is a blessing. I miss my husband also and told him all I wanted for my birthday was that very thing. George did do all his treatments as he was given no other choice since one of the doctors was in the house. During that time I slept on the couch so many times, cried myself to sleep and really tried to stay out of his way. Thank God for my daughter stepping in many times because I am sorry now to say that I told him if the cancer didn't kill him, I was going too. Of course I love him very much but just couldn't take all the anger and hurtful things he said.
I hope that your husbands cat scan will show he is doing well and maybe he won't be so scared all the time. George has cat scans every other month and they have all been clean but we are both still scared it could come back. | | | | | 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 | Rita,
As a guy I can tell you that sometimes reading a letter from our spouse can do far more than what we may perceive as a
"lecture" so put all these feelings down in a letter, especially how much his actions are hurting you and leave it out for him when you know he will get it in a quiet alone moment. Can't hurt.
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: Jul 2009 Posts: 5 Member | | Member
Joined: Jul 2009 Posts: 5 | We have talked so many times and he always says he doesn't mean to hurt me and sometimes doesn't even know why I am crying. I can somewhat understand that part of the not knowing why I am crying as we are coming up on the 23rd to the 5th year our oldest son disappeared off a cruise ship and was never found. Then a month later we learned our oldest daughter has full aids and last week she was so sick with a t-cell count of 93. So yes I tend to cry a lot and I guess he gets a bit confused as these things don't seem to affect him in the same way. We renewed our vows 4 days before he had his neck surgery and love each other very much. I know this disease is hard on everyone it touches. I guess we just need to vent sometimes to ones who understand. Thank you for reading and responding.
I do intend on showing him this site so he can read for himself what is going on with not just us but with so many others. | | |
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