#92449 03-24-2009 11:44 AM | Joined: Apr 2004 Posts: 32 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 32 | Hello all,
I wrote many years ago...my last posting is below...I wrote you all to try to understand why my husband wanted to be alone after he finished treatment. He was diagnosed March 10, 2004, finished treatment and then wanted to be on his own.........
In 2005........
Hello all,
Thinking of all and sending good vibes and ommms....esp to Didier..you're a wonderful group.
I am most of a reader not a writer (I send lots of good vibes to you all everyday I hope they are helpful and healing).
I have only written a few times mostly when I guess I feel REALLY overwhelmed...so this must be one of those times...Thank you all in advance for "listening to me whine for a bit"...
John finished treatment last year...
We have gotten through the anniversaries: diagnosis, surgery, end of radiation, trach removal, and tomorrow will be the anniversary of the g-tube removal...
He can't remember the dates, but he has really been upset with me on each anniversary...
He still has pain, he can eat meats and veggies slowly w/ lots of gravy and milk, and has lost 30 lbs weight...He is AMAZING...he has worked full -time almost the entire time, he is in therapy, on anti-depression medications...he still relates really well to our daughter...mostly though he is angry and resentful of me because I haven't been able to help more...
Now he says that all he wants to do is be alone...
He feels let down and resentful that I haven't done enough to help him and he can see I'm getting tired and that makes him really angry...he feels that I'm not giving 100% and even though he admits I did give 150% percent last year...he says...it's just not enough...
Forward to today....
You all wrote great comments, gave me strength and supported me to keep giving him support and to be patient and to push him a bit.
In 2008, he moved out to live w/ his mom, now he is dating a married woman, and now, yes, we are finally, finally getting divoriced.
I am so terribly, terribly sad. He was the love of my life.
I prayed everyday when he was in treatment, that he would recover and that we would share our lives. I so looked forward to being able to chaperoning our daughter's 10th grade dance together.
It feels that being a caretaker, has made it so much harder for me to get a grip on the reality that he needs to move on.
Today, I saw that Philadelphia is having it's first Oral Cancer Awarenes Walk. I emailed this to John. He knew about it and wondered why I would be interested. I just need to write and tell you all how much i wish i coudl be walking with him and letting people know that there is hope and wellness.
Well, I am not sure what i need right now. I guess to tell you all that I will be walking in spirit with you all wherever you walk (or run). I am so impressed with those of you who go through this treatment and I know it is tough to be on the caring end of it...
I will be a proud sponsor and I thank all of you over the years for your openness, great ideas, funny, funny entrys (wish i could be funnier today), and support.
Best,
Sara
Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sara, I would bet the divorce would have happened without OC . IT REALLY SOUNDS AS IF HE HAD THIS IN THE BACK OF HIS MIND FOR A LONG TIME. Forgive the caps but i am too tired to retype > Sorry Just don't blame yourself and things will work out for you.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Sara
Go ahead and walk if you like. OC had an effect on your life also and there are so many of us still struggling with it that would appreciate you walking.
I am sorry that he broke your heart. You were supportive and it is unfair for him to say that you did not do enough. Please do not allow him to make you responsible for his choice to date this other woman or any other woman. That is his choice.
Concentrate on taking care of you and your children. Become happy with yourself and by yourself. As hard as it is forgive him and be civil for the kid's benefit. You have an entire life a head of you.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | 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 | All I can say is I pity the next woman that falls for him.
On the Wizard of Oz scale I think he lacks the Brain and the Heart not to mention the Courage.
I think you are WAY WAY better off without him and the next guy you fall for is the lucky one.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Sara i often wondered if my marriage would have survived if robin had lived.I ofen felt like the butt of his anger and resentment at the disease,Basically there was no one else to take it out on.It took away his strength and in some respects threatened his perceived man hood, and my ability to be able to cope in a practical way,and take charge of his meds,appointments,feedings,and all the other stuff we do such as applying for financial help dealing with the bank and the tax man driving washing cleaning phone screening door answering excuse maker when he didnt want to see and speak to anyone,nurse,bully,nagger,the list goes on,and at the end of all that you have a man who feels less of a man because you have carried him through a time when weakness was his worst enemy.He resents you lashes out at you because you have a strength that has been taken from him,and he cant be the husband you once knew.
Its a bitch,and most people get through it,but some just can't.Once the recovery is underway they don't want to be around the one person who knows their every weakness and whos very presence reminds them of a terrible time in their lives.
Its so sad but i am afraid it happens.I am lucky because i will never know if it would have happened to me,but i have this strange feeling that.............
I am sorry it has turnedout like this for you but like your husband and like me you are yet another victim of this truly cruel disease.
liz
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Now Liz, those really were words of wisdom. You really stated what you had to say very well and even Jim here understood 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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sara
Sorry to hear about the divorce. It must be very difficult for you to dea with this after taking care of your husband. Do not take any blame personally. It wasnt youthat chose divorce. You did the right thing by taking care of him and supporting him thru OC. If he would become sick again, hopefully his new support system will step up to his needs. Nobody knows what the future holds.
Do not allow this to stop you from attending a walk. If you are anywhere near the Bethlehem area, there is one on May 2. Many OCF members, myself included will be attending that one. We would love for you to be there.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | 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 | On the other side of what Liz was describing I was a man who felt damn lucky to have someone care enough about me to stick with the program until I was back to normal. Whatever I thought about my wife pre Tx was only enhanced 100 times post Tx and I feel fortunate on one hand since most couples don't really get to experience the bonding that can only take place under this type of stress.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | David,
I love your "Wizard of Oz' scale. Well said.
Sara,
I sorry this turned out this way but if that is how he feels, you will be better off without him. Get on with YOUR life and do not blame yourself. You did all you could and then some.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | David, better inform your wife to get you all the way back to normal .. LOL I owed you that one buddy.
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
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