Ups and Downs

blackswampboy said:

caretakers deserve medals
my son kept his reaction to my diagnosis bottled up for quite a while, then finally went berserk and punched a hole in the wall.
his way, not recommending it.

Care takers
are so important and yes the burden is as Skiff said tougher than the patient. The one thing I know about my care taker Diane, is I would not have made it without her, she put up with my ups and downs which still are ongoing even tho my treatment is done. She did not baby me when she felt I needed pushed or proded to accomplish something or to just get my head out of my butt and deal with it. But she also held my hand and hugged me when I needed it, so many hats a caretaker has to wear. So my point is I know she has had to deal with me, her job, grandkids and on and on, but again she and many caretakers on this site are very much part of the survival process. So hang in there, he will do just fine, it sucks to have this going on the treatments suck, everthing sucks but it is doable. And thanks to the longtime survivors we learn slowly the sucks either go away or reduce dramatically.

there will be good days and bad days
My wife Lori was - I should say is - my caregiver and she has ridden the roller coaster as well, some days the positives so far outweigh the negatives, other days it is reversed. We spent a lot of time in the early days sharing tears and 'what if' outcomes. Looking back on everything, we wasted so much time with the 'what if', we never should have dwelt on it to the degree we did.

Decide to be positive, decide to achieve miracles.

Dreamworks Pictures did an animated version of the story of Exodus, "The Prince Of Egypt". The theme song from that film has what I think are poignant values.

"The can be miracles when you believe, though hopes frail, it's hard to kill. Who know what miracles you can achieve, when you believe somehow you will, you will when you believe."

So, keep you chin up, a smile in your heart and believe that you can do miracles.

Peter

yensid683 said:

there will be good days and bad days
My wife Lori was - I should say is - my caregiver and she has ridden the roller coaster as well, some days the positives so far outweigh the negatives, other days it is reversed. We spent a lot of time in the early days sharing tears and 'what if' outcomes. Looking back on everything, we wasted so much time with the 'what if', we never should have dwelt on it to the degree we did.

Decide to be positive, decide to achieve miracles.

Dreamworks Pictures did an animated version of the story of Exodus, "The Prince Of Egypt". The theme song from that film has what I think are poignant values.

"The can be miracles when you believe, though hopes frail, it's hard to kill. Who know what miracles you can achieve, when you believe somehow you will, you will when you believe."

So, keep you chin up, a smile in your heart and believe that you can do miracles.

Peter

Beautiful
Loved reading the words you added from the movie. Words to live by.

Linda

cureitall66 said:

You're not alone....
Remember you're not alone. We caregivers are the main support for our loved ones. They know what we are going through also. But try to just take it day by day. Try to hold it together for your loved one. They need that first and foremost. Your strength will show him he will get through this and that he's not alone. It is overwhelming of the unknown, that's a given. Soon you will know what you will be dealing with. I, too, am waiting this week for our next step. It's been just 1 1/2 weeks since our diagnosis. Hang in there....and remember to drop me a line anytime you feel like it. I'm sure this next week or two we'll be doing a lot of chatting.

As hard as it may be
Try very hard not to think about all of the "what ifs"
I know this is easier said than done but try and use this time that you wait for your husbands full diagnosois and treatment plan to do some things that make you happy. I truly wish I'd done that more before my treatment started because once it gets going ther isn't a whole lot of time for doing extras. Go out for dinner or drinks with friends, go to movies, shopping, long walks whatever you both enjoy. Treatment is hard but doable but he won't feel like doing much. And you as a caregiver will become exhausted at times wearing all those many hats.
I know you didn't ask about this part but I'm going to throw it in. As treatment gets started, accept help. Welcome the meals that people want to bring, accept graciously any gifts that come your way. My husband and I are very private people but when people found out I was sick they all wanted to help. Some made meals, others wanted to mow our lawn or drive me to a treatment. You will surely feel like "I've got this, I can do this" BUT people want to help and they don't always know what to do. If they suggest something just accept it, as uncomfortable as it may make you. In the end you will see that the meal is so helpful and the gift cards come in super handy and most of all, you made them feel really good and helpfful.

I pray you will find peace as you go thru this waiting period. Before you know it treatment will be well on it's way and he'll be on the road to good health. You stay strong and come to us often and we will help you in anyway we can.
Hugs....
Billie

CivilMatt said:

a little more
Hi VivianLee5689,

Those darn emotions, there all over the place (happy, sad, scared, confident, hopeful and helpless). Emotions are the binding pinball, shared between patient and caregiver. You will most likely hit your stride, sometime soon, but until then you’ll have questions of doubt and why me, why us. There are no easy answers; it all comes down to inner strength and your support system (family, friends, doctors and nurses). As time and treatments progress some things will find answers and others never will. All I can say is slow down, don’t beat your self up and if you are up to the challenge, get ready to dig in and get smart about cancer, radiation, chemo, and side effects. Every thing (going to happen) may not be scripted, but each of us here can make a pretty good estimate on what each of you can look forward to in the coming weeks. It is not all bad, scary and dreadful, while the fun has been less this past year, there have been some pretty hopeful and happy moments (some good times even from this site (Matt humor)).

Best of luck and have a gentle journey.

Matt

Don't over think it
You can beat yourself up with "why us". There are no answers, it is what it is. Pray for the strength to help your loved one through this. I know you can do it.

VivianLee5689 said:

Thank you
I am trying not to think about the wy us. It just really sucks that I am not even getting a honeymoon before everything gets started. My husband stays tired and all the tongue and throat biopsies have made him sore. I guess I am just getting used to the fact that the life I thought I was getting is different and instead of getting pregnant this year I will be caring for him. I love him and will do anything I can for him. I just wish we didn't have to go through this. It may seem like I am down, but I am actually coming around. Today I am accepting this is just a part of life we are going to do together. I just have to get past the things I thought we would be doing.

Just delayed
The delayed honeymoon and motherhood will be all that much more meaningful for what you are having to go through now. Of course, it's disappointing for you, especially at this point in your life, that's understandable. Hope you will take some of the down time planning and anticipating those same dreams. I've never loved and thought more of my husband of 30+ years than I do right now. He stepped up as caregiver in a way I never imagined. I hope for you, that same bond.

blackswampboy said:

lousy hand
you both have been dealt a lousy hand, no doubt about it.
but imagine if his illness had come when you were eight months pregnant, or with a 6-month-old baby. god willing, two years from now you'll have a healthy baby and totally healthy husband who can focus on the duties of fatherhood.

guess I'm clumsily trying to say...there is no convenient time for cancer. it sucks to get cancer when you've got a teenager who needs you. it sucks when you get it as the only remaining child of 80-year-old parents. and it sucks to put the burden of care on a loved one.
it sucks for everybody, always.

Just keep on beliving
Everything will be ok in the end. I know how you must feel, because the hardest thing is to accept the big "C" word... And waiting for treatment to start.

My dad (57 yrs) is almost finished: one more chemo this week and 7 more rads. It is hard now... All the side effects are now the worst.

Hm, emotions.... Let me tell you how I feel as his daughter. I'm positive most of the time. Beliving that this treatment will work. Beliving that he's gonna overcome this as he does not drink or smoke for 13 years. He is physically and mentally strong. He has support from my mom and me and my family.

But... (isn't there always a "but"? ). I'm afraid that everything he is going through right now won't be enough to cure him. It scares me. He is HPV negative, T2N2b (just before tx started he was N3 already). You know it's not like you break a leg or you have some major surgery and when it's done you know that after recovery you're gonna live as before... Having cancer means that even surviving hard treatment does't meen you will survive the cancer. It might come back or tx might fail.... Yes, those are my fears... It's hard to cope with this.

My dad has already been through so much in his life so sometimes it seems to me that it is really not fair that he has to go through cancer also. And of all cancers this one has probably the hardest treatment and side effects.

But still... I believe... I believe that God knows what he is doing... Maybe he did it so that we can stop living 70 miles away from each other and that my dad and mom decided to live in my city. They're moving in November. So maybe this illness was a sign or a "push in the butt" so that they can change their lives to better.

Stay strong, and believe that this is just suppose to be that way... You will find some good in it! And stay here on this board, it's life saving place!