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?
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
Eric, that was a very impressive answer. I am going to have to read that book myself. Good thinking on your post.
Man lets pray the scans are clean.
I will be praying that the scans are clean.
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.
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
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.
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/phillyrussellI use Facebook mobile too, if anyone is on Facebook.
http://www.facebook.com/people/Philly-Russell/769825214All the best,
-Philly
If you purchase the book through Amazon, and enter Amazon through the link on the message board or the OCF web site home page, OCF will get a 4% donation from Amazon. It only costs you one more click to go there from our link to them instead of through your regular web browser link. It only work if on EACH VISIT you enter from our link, it doesn't remember you. Our month commission from Amazon helps pay for office expenses at OCF, and doesn't cost the shoppers anything more.
For those of you that have blog sites you can choose to add OCF Amazon link to your site and further help us pay our bills. If you want a small banner ad we will provide it or you can add it as a text link with this text
http://www.amazon.com/?ie=UTF8&%2AVersion%2A=1&tag=oralcancerfou-20&link%5Fcode=hom&%2Aentries%2A=0
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.
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.
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.
I will also be praying for your husband, and for you. Hang in there. I have nothing better to add than Eric's advice.
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
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
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
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.
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.
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.
Rita, sometimes words just fail to encompass the depth of the tragedies that befall some families, but aim for that light at the end of the tunnel when your love for each other will help conquer this disease and you will find much brighter days ahead. I am very glad for you that you are living with your daughter and doctor husband right now, providing some support and guidance as you travel this road. And besides, the friendly people here in the OCF forum are ALWAYS here for you to vent as we've battled this disease too, AND have worn your caretaker shoes. Keep us informed, ok?
Hugs, JaneP
thanks so much for the kind response. i just got to this site yesterday thru my niece and it has been comforting