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Joined: Dec 2008
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Philly Offline OP
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This horrendous disease has stolen so much from us; the David we knew before the December 08 diagnosis is gone...

He did not finish the Radiation treatment. He had 30 rounds total to complete, and with 11 treatments left he couldn't tolerate the pain any longer and told the Dr. he would not be returning. That was a month ago.

He hangs out at the neighbors house for a few hours a day, which would be OK - but the guy is a chain smoker. David goes in his house to talk to him, breathing in the secondhand smoke the entire time. Nearly the same as smoking, right?!

His 6 month scans are coming up soon, and the closer the appointment gets, the meaner he gets. He admitted tonight that he's scared, and sick of having to go through the daily routine of rinsing and sinus infections, and all the aftermath of the cancer / surgery / radiation. He said this would be an ongoing thing. I'm not sure if he meant his attitude / behavior - or the feelings he's struggling with.

To others, he acts as though everything is going great... but behind closed doors that is not the case. It's so hard to see him this way (and be on the receiving end of him). I know he has to be hurting so deeply. We're trying so hard not to take it personal...

I wish I could fix this.. but lacking that ability, how can I help support him?


Last edited by Philly; 06-07-2009 03:01 AM.

Mom of 4, wife and caregiver to David, 37 yrs old, diagnosed 12/4/08 SSC T4NXMX Maxillectomy on 1/8/09. 19 out of 30 scheduled rounds of IMRT Radiation Therapy. Cancer free!! (Last checkup 8/09) Next 10/23/09


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Philly, wow, that's a tough one. I can say I relate to your husband as we are around the same age and know I would have given up with the treatments and surgeries a few times if I didn't have my "why" to live.

A quote from Nietzche "He who has a "why" to live can bear with almost any "how."" - that I read in Victor Frankl's book "Mans Search For Meaning" really put things in perspective for me. Frankl basically wrote about his life in a concentration camp and what it did to him and others mentally and emotionally and it was a huge help for me when I thought about quiting. I'm a stage 4 survivor and am lucky to be breathing now, but there are others that had a much harder road then I traveled and if they could do it, by God I could. My beautiful, young wife and two children are my "why" and without that focus for the fight I don't think I would've made it this far.

I know it may not be much help, but I have a copy I can send you if you would like. He's scared and that is OK, but he sounds like he's letting his fear rule him and that just won't do. Seeking professional help is wise too and there is absolutely nothing wrong with it.

My heart goes out for you and your David, I wish I could be of more help.

Eric


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.
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Eric, that was a very impressive answer. I am going to have to read that book myself. Good thinking on your post.


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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Man lets pray the scans are clean.


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.
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I will be praying that the scans are clean.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Posts: 1,940
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I battled endlessly with robin about the horror that was Tx .It made me so mad when anyone he met said"how are you?" and he said"great".Being a carer means being at the sharp end ALL the time.My answer...keep your mouth shut and keep your distance.don't get in his face,or constantly ask how he is,don't nag,just gently remind,but only once,dont speak for him unless he asks you too.Don't discuss his illness with others when he is there or can hear.In fact the lower profile you can keep the better.These men while they need our help,don't want it,after the worst is over they will tell you they couldn't have done it without you,but during the tx they will say they don't need you or your help..They resent the way women step up to the plate and become the stronger for it.

sounds awful and it is,but it passes in time Marriage vows say for better or for worse in sickness and in health,they don't say
during cancer treatment and a good while after.
Your husband will be back,just ask margaret hupe.


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.
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Philly,

Have you and David ever discussed therapy? I am an advocate of therapy, it helped me more than I can say. It sounds like he may not be open to it though.

As a patient I can say, when people kept asking me about it or how I was I would always say "I am fine" because I HATED people asking me. Then I would come home and be mad and sad. I couldn't stand people asking me because they made me think about it when I didn't want to. Then, they would look at me like I just ordered my coffin which made me feel like crap. They would look at me with this look of pity that I couldn't stand. It made me very angry. There are only a handful of people I can actually talk to. My husband is one of them and I'm sure you are one of those people for David. I always think it's easier to be the patient than the caregiver so I feel for you. If he is himself with you, regardless of how he is, it's because he feels comfortable with you.

I wish you luck

xoxo


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Hi Liz,

Your last line made me smile...just ask margaret hupe...the one whose life is crumbling around her. :-)

Dan was a model patient and incredibly appreciate of all that I did to help him through treatments. However, he has not returned to the "old Dan"...and, the side effects of his current thyroid problem are very troubling. The fact that he lost his job due to the economy and the company downsizing hasn't helped a bit.

He is moody, depressed, fatigued, irritable, and sees me as the enemy right now. I don't know how much of this is being pissed off about what he went through w/ the cancer treatments, anger/depression over the job loss or the side effects of the thyroid issue.

When at home, he spends his entire time in the basement...(which houses our large screen tv) and doesn't talk to me. When he sees a friend, he acts like everything is normal and life couldn't be better.

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Philly Offline OP
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Eric, thank you for the book suggestion - I will pick it up asap.

David is not the therapy / counseling type. I do wish that he was though. I was raised in foster care, and strongly believe in the power of confiding in a good counselor to get through tough times and help define reality vs a flawed perception. Another reason I am so grateful for this safe haven with others going through the exact same ordeal. Thank you all for caring enough to share your experiences and advice.

With the kids being out of school for the summer, we're trying hard to steer clear and not be an irritant to him. I can relate to the feelings of resentment for doing the majority of the work but quickly feel guilty for feeling resentful for one moment after reading the posts of loved ones losing their lives to this disease. I'm going to do my very best to look at each day with David as a gift. I know he's not angry with me... just taking it out on me - probably because he feels safe enough to. It is taking it's toll on me - and I need to focus on taking care of the kids, the house and working on top of this monumental caretaker role. Hopefully we'll get to a point soon where he'll find a new way to express how he's feeling...

Prayers are very appreciated. I don't post often, but now you know why!

I do Twitter from my Blackberry & you're welcome to follow.

http://www.twitter.com/phillyrussell

I use Facebook mobile too, if anyone is on Facebook.

http://www.facebook.com/people/Philly-Russell/769825214

All the best,

-Philly


Mom of 4, wife and caregiver to David, 37 yrs old, diagnosed 12/4/08 SSC T4NXMX Maxillectomy on 1/8/09. 19 out of 30 scheduled rounds of IMRT Radiation Therapy. Cancer free!! (Last checkup 8/09) Next 10/23/09


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