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Ups and Downs

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am having trouble with all the emotions I am feeling concerning my husband's cancer. Some days I feel good and hopeful and other days like yesterday I feel so helpless. How have other caregivers and survivors dealt with this issue. It is still so new and the fear of the unknown is even making it worse. I know there are many who have went through this before and others going through it now. All your insights are appreciated.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

LOL, OK...sorry just trying to get a little smile from you...

I don't think there is any easy answer, each of us deal in our own way, and find what works best for us....some may never find it.

It has been said many times on here that the caregiver has a much harder time of it thatn we survivors...and I totally agree.

We (survivors), just have to do what we have to do everyday, and have faith...

We depend on you (caregivers), for everything...you handle all of the day to day stuff, our needs, the rest of life that is going on...and somewhere in there, you have to find time for yourself and an avenue to release it all....definitely a very tall order.

Unfortunately it's not easy, it is what it is...and you just keep doing what you have to... That goes for all of us, survivor and caregiver.

Just know that you'll get through it, as will your hubby... Know that the majority here are surviving, and living a good life after all of the smoke clears... (if he's having radiation).... :)

Stay strong, find your sanity, and like my good buddy Kent says...BELIEVE.

Thoughts, Prayers, Hopes and Dreams,
John

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

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.

ditto1
Posts: 634
Joined: Mar 2012

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.

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

VivianL...
Somewhere you find a strength you never thought you had, it's one day at a time...the emotions are normal...cry , scream or vent however you choose..like Skiffin said it might be easier in some respect for those of us going thru treatment; we know what our routine will be day aftrer day. While I didn't have many if any of the horrible side effects that I could have experienced with both chemo and rads, I had a great support team in family and friends. You too will find people whether they are here on the discussion board, or in your every day life who will help you.I had an onco nurse who when removing the 5fu pump I wore for a week after each chemo treatrment, and I was beotching that I couldn't take weraing it for another day said to me- we can always do something for one more day. She was right.

Linda

yensid683
Posts: 236
Joined: Apr 2012

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

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

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

Linda

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

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.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

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's picture
CivilMatt
Posts: 3007
Joined: May 2012

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

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

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's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

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.

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

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's picture
blackswampboy
Posts: 341
Joined: Jul 2012

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.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

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!

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