Sara-

As a fellow caregiver/wife I am feeling your frustration and pain. I was there not so long ago and reading your post brought it all back. Know that you are not alone and that we have all been there...with the "pissed off" moods and the feeling that no matter what I do he's not going to like it. I had to keep reminding myself, sometimes every second of every day, that it wasn't my husband speaking but the cancer. That helped me not to lash out too much at him. Not that I'm a saint and didn't yell at him at times. Sometimes yelling was good for my sanity too. He would just sit there and watch me yell and cry and then he would finally hold me and comfort me...seemed like a strange reversal, but it felt good. I must say that what really helped me was the wonderful people in my support group. I don't know how many family and friends you have that you can really count on, but you MUST take this time to say YES to their offers of help. I didn't have a small child tugging at me for my time and care so I can only imagine how difficult it must be for you. I hope you have someone that can give you a break and watch your toddler for a few hours or maybe even a sleep-over. If you are anything like me you feel like you will be burdening your family/friends with too much...but believe me you MUST do this because you will be no good to anyone if you don't take some time for yourself. During the worst part of the treatment...the middle and end...I had to take a leave from work and had my sister & mom running errands for me...my husband just didn't want anyone to see him or be around him when he was feeling and looking so miserable. It took every bit out of me to do all the things that were needed, from GI tube feedings to remembering all the medications that were needed to cleaning humidifiers, etc. etc....you know the story. I don't know what I would have done without my support group who just showed up at my door with my dinner and my husbands meds...no questions asked. I also forced myself to attend caregiver support meetings at the cancer care center where my husband was being treated...it was a big relief to just sit and bear my soul without worring that I might be burdening my husband who already had enough to deal with just fighting the cancer. Last but not least one of my biggest mental unloading was to send weekly updates via emails to family and friends. They always sent uplifting responses that helped not only my husband but me. I usually went into the detailed reality of what being treated for tonsil cancer really means...something that most people never realize.

Well...that is enough for now. You are a true blessing and I'm sure...even though he may seem "pissed off" all the time...your husband knows just how blessed he is to have you by his side. Hang in there and keep coming back to the OCF...everyone here is wonderful!

Sara,

I truly believe it's more diffucult being a caregiver than the cancer victim. We seem to show are anger to the one we love the most. My wife is a nurse and is a great caregiver as well as a great human being. I was so lucky to have been married to her for the last 32 tears. Will be 33 years on Sept 18th.

I don't have any advice for you as I feel you are doing as fine a job as can be. Take comfort in knowing your husband knows this as well. Your love and concern for him shows in the tone of your posts. I hope all goes well for the both of you and your family.

Your Friend, Dan

Hello fellow caretaker!

Now that we're 7 months past the heat of treatment I can tell you these sage words of advice. Hang on to your hat, don't take it personally and... Ed (my survivor) will attest to this - know you STILL can (and have the right to) stand up for yourself! Sometimes its easier to just take it and accept its alot of fear, anger at the disease, disappointment at the prospect of shattered dreams, feelings of inadequacy and exhaustion talking but there comes a time in every faithful caregiver's life when you look your irradiated and withered loved one and say, "I'm sorry you have cancer. I know it's tough for you and you gotta know it's kicking my butt, too. Cancer doesn't have the right to invade your body and you don't have the right to abuse me. We're on the same page, fighting the same ugly battle. If you have something specific you want/need - tell me or I will assume what I'm doing is right and in your best interest."

I don't know your personal situation or the stage your husband's treatment or recovery but as he becomes more able - let him do some stuff for himself. Like I have come to accept (and it makes me feel like a schmuck) you can't be everything all the time.

My heart goes out to you. It's a time when you feel your loneliest and hurt SO bad (for yourself and your hubby). I don't know that I have many answers but I have a willing heart and ear.

Hang in there and rationalize that it's hard for our cancer warriors to rationalize when every ounce of energy is spent trying to kill the enemy (and it isn't us, even though we feel like it some times). God bless you and repeat...

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."

I promise - it's a bear but it gets better as everyone gets used to the "new normal". Some days are a breeze and others... well, you can guess my choice of words. Some days there's less anger and resentment on your part and theirs. Take those precious moments when the wind dies down to remind him how much you love him and empathize with what you believe he's feeling ('cause we'll never really know).

Amen to all that..
The most important thing for any carer is not to lose sight of themselves.. we all put ourselves third.. 1st patient.. 2nd cancer.. 3 me..(well maybe if I have time).. hard lesson but not a good one..if the carer goes down so does the whole pack of cards..
thank god for this forum and my all my friends on it...
love and hugs
Helen

Sara,
You hang in there sweetie. I, too, as a caregiver cried so much and felt so alone at times. While Dan slept off the treatments (especially from late middle to after end), I cried and prayed and just "nightmared" about the future. My biggest support was comfort after praying to God and a small support group from our church that really helped (from meals to just saying I love you and I care). My boys are grown, but it has been very hard for all of us. It must be very hard to have a small one running around with so much energy! Although, I love little ones and I am sure it is also a highlight! I walked our dog everyday and cried for Dan and others and ask God for healing. The rest is really out of our hands. But every nite I came to this board and got so much encouragement at other stories and bravery. You and your family are in my prayers!
Debbie

Hello everyone,

Thank you, thank you, thank you...your words mean so much. last night, poor John just lost it...actually, it was kinda funny...he through a few snack packs of chocolate pudding on the kitchen wall...I sure in years to come it will be one of our funnier moments :-)...really, how much pudding can one person tolerate!!!!...so I called his sister and she came over and they cried and cried...it was the first time that he could share his fear and anger with someone besides me...he's much clamer...and I had a good cry too!

Thanks for the advice and support...you are such a strong, wise, and funny group...

Love ya,
Sara

Thanks Sara!

For sharing a very funny visual. I agree totally, sometimes I think can I really live the rest of my life on yogurt and pudding? I have to tell myself to keep concentrating on what I can eat rather than what I can't, but it doesn't work very well sometimes.

Hang in there. Tell John we love him.
Lynn

Sara
Wow I'm impressed.. Tell John brown walls are very 70's.. glad you ducked lady... chocolate shampoo no way..
love and hugs
Helen

Sara,

Tell John I am so jealous. Chocolate pudding is my most or second-most favorite thing in the world to eat. From about week 4 of radiation, chocolote first tasted like pure salt and now almost 8 months post treatment, it still tastes a bit like chalk and cardboard. I simply refuse to accept it, though, and even ate some yesterday just in case it tastes like it used to!

I am so glad of the progress, too!

Ed