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The "New" Normal

virtual_voyager
Posts: 33
Joined: Jun 2010

It didn't take long for me to begin to despise that term.

Normal in any shape , form or fashion is gone. With it went spontaneous interaction. Nothing just happens any more, everything is calculated and thought out before hand.

What I say, how I say it, when (if) I say it ........ ! ! !

Everything has become a chore, no feelings of doing things because you want to. Going through your days trying to act "NORMAL" when you know it isn't. A tenseness always enveloping your waking hours, sleep is a joke and between worry and guilt, well thats the new normal.

The new normal means your life will be lived like you're a passenger in a car wreck that won't end. You know there's a big bang coming and you're helpless to stop it.

Every day begins and ends with one long and heavy , all the while exerting vast amounts of energy trying to control the release of a primordial scream of anger.

The new normal is loving and hating life in the same breath.

V_V

Noellesmom
Posts: 1275
Joined: Aug 2010

VV,

Never heard it quite put that way before - passenger in a car wreck that won't end with the inevitable crash coming. It's a very accurate description, though.

Someone posted on another blog this line which is where I am now five months after my husband's diagnosis: Life isn't about waiting for a storm to pass, it's learning to dance in the rain.

I'm learning to dance with galoshes on - I hope you can, too.

Be gentle with yourself - it will take whatever length of time it takes to learn to move forward.

Hugs.

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

Thank you for the quote about the rain... I would like to use this one myself and pass it along on my FB page. Learning to feel normal after being told my loved one has cancer? Really? I don't see it ever happening with me. But I will expose its abuse, its terror, its destruction. Maybe after time I will eventually "feel" redeemed.

Deb
lovingwife to Bob, stage 3G

kayaker01
Posts: 20
Joined: Aug 2010

VV,
I NEVER heard anyone put it the way you did. You are SO right!

I hope you do not mind I have printed your comments and would very much like to share them.
GOD help us all, both cancer patients and their caregivers.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

You definately articulated exactly the way the stupid "New Normal: feels to me today, too.

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

Don't control the scream. Let it go. Pound on a pillow. Jump on a bed. Do what you need to do. Come here and vent often if that helps. We all just have to do the best we can. Fay

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

I so hear you! Don't they think that if I had a magic wand I would wave it and go back to lovingly preparing meals, taking care of my home, taking care of myself? I appreciate your comparison of a car wreck, only that for me, the car wreck already happened! My hubby is still here and fighting the Monster, with some good results, and not so good results. For this I am grateful. I am so desperately trying to sift through the wreckage, looking for the wonderful things we had in our lives. The love, the laughter, the closeness. The time together, the time for ourselves, the time with family and friends.
I write and in my writing, I have found my ability to "scream". I have also found an inner voice that soothes me when I am so angry, or frustrated or sad. By simply putting pen to paper I have given myself a safe place to release. This site has also become a "haven" where not only can I express myself, but there are so many kind, wise and concerned folks that will listen and encourage.
Take care of yourself and come here often.
God bless,
Lucy

nyogus1
Posts: 30
Joined: Jul 2010

My husband was diagnosed 4/13/10 with stage 4 non small cell lung cancer, mets to bone & lymph. A day I will never forget. And YES everything did change from there. The summer was horrible going through chemo. Steriod rages, chemo confusion, pain, pain, pain. I did not know what to do from one bizarre incident/interaction to the next. People from this site helped. The Oncologist Social Worker was great. A Psych nurse friend told me to write a note to put in my wallet to take out and read when I needed that said "Remember you love him. He is not himself right now." That advice helped me mentally to cope. Now, chemo has been over for 6 weeks. He is starting to emerge as the person I knew, but still different. Always the cloud overhead of cancer, the pain. But at least he is becoming closer to "normal". I keep hoping in my heart that we will be normal again. But maybe not. Pain medication helps him a lot. He still doesn't want to take it, but knows he has to. Depression medication & a perscription sleep aid for him helped too. I can't cuddle in bed anymore, any touching hurts him. I found myself putting my palm on his scalp last night. It was the only thing I could touch to be close that didn't hurt him. I'm sad too. But having moments where I find myself humming or singing.....then playing with my dogs.

(This is a wierd note....sorry everyone.)
Nancy

Noellesmom
Posts: 1275
Joined: Aug 2010

Sounds like you are where many of us are or have been. Normal was something then and something else now. In some ways, you have faced the unfaceable and you have come out on the other side. I know it is too early to know if the cancer is gone.

Jim says I wake him up at night touching his forehead, checking for fever, shifting covers around where the peg was when he had one, pulling the cover up to but not over his throat (which he can't stand right now). Truthfully, I'm not aware of doing any of these things. I guess even our subconscious wants to take of them even when we sleep.

This isn't easy, I know. Try to be gentle with yourself and with him - and give your dogs the hugs right now. I know my dogs will always take extra if offered!

Hugs to you, too.

rocket baby's picture
rocket baby
Posts: 22
Joined: Sep 2010

Nancy, I totally understand your feelings. Normal is something that is lost. My husband was diagnosed in 2007 with stage 3 lung cancer and he was not a candidate for resection surgery. We too had the rages on steriods, chemo confusion, radiation fatigue, mood swings, depression, anger. People would say dumb things and make me feel like I was a bad person for being angry too, for losing the person that I loved to this Monster called cancer that invaded every corner of my life. No closeness, no touching, no sex...it was all gone. The cancer went into a remission for a period, but he is now struggling with bone pain and is scheduled for a CT scan. I am trying to be positive, but with all the symptoms that he is having I am expecting the worst. We need to be there for each other. Thanks be to God for this forum. I will pray for you Nancy...and yes, I have four dogs and they get all my affection...I don't know what I would do without them. God Bless!

nyogus1
Posts: 30
Joined: Jul 2010

It is good to be validated and know that what we are going through is typical. Dare I say the feelings & experiences are "normal" for cancer? That really stinks.

3Mana
Posts: 829
Joined: Aug 2010

It seems as though everyone has a different idea of what normal is. After my husband died in March, I couldn't eat, sleep or didn't even want to go out of the house. But when I started seeing a counselor cause I felt like I was going to lose it, she told me that it was perfectly normal to feel like that.
I'm not sure if you have cancer or are a caregiver, but either way there is no normal. It has taken me 6 months to finally feel better & maybe feeling the way I used to again. Miss my husband so much and have been trying to keep busy raking and cutting back flowers which he used to do. Our yard always looked like a park, so I'm doing it for him. Finding out that my body isn't used to this kind of physical labor.
So try to take one day at a time & don't worry about "normal", just feel the way you want to.
Keep in touch!!! "Carole"

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

I have read this thread several times and every time, I don't know what to say.

Yes, we have been forced into a "new normal". I guess I am accepting that, but I am also so d*mn mad at the cancer for forcing us into this position. I want my old life back, I want my husband whole, laughing and in good health! I know I sound bitter and selfish, but I guess I am just tired today. I try to be positive and supportive every day with my husband.

Sometimes, I just think the "new normal" SUCKS.

ok.. back to reality and being supportive... carry on.

rocket baby's picture
rocket baby
Posts: 22
Joined: Sep 2010

Thank you for the analogy to the car wreck. It will help me explain to people that don't understand because they haven't been forced to live through this awful experience. The wreck is inevitable, but getting to the crash scene is hell.

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I think we all believed once upon a time that there is such a thing as normal. What we now know is that normal keeps changing. Normal only exists in our minds. What is normal for one is really not normal for someone else. I have a tendency to use that word, too, but is there really such a thing. I don't really know what normal is any more. My life has changed so many times and there have been so many new normals. Maybe that is just a sign that I am getting older. I visited with my mother yesterday. She has both moderate dementia and cancer and will be 92 next month. She started crying because my son was also there and she couldn't remember who he was. Yes, she is normal for her current condition, but she is not my normal mom. She struggles to accept her new normal, but she can't remember what normal was. I guess I can't either. I don't know if anyone can follow this or not. Maybe I am just not very normal. Fay

3Mana
Posts: 829
Joined: Aug 2010

Fay,
That is so sad about your mom. That's got to be so hard cause it sounds like she understands that she doesn't remember things. To be dealing with cancer at 92, plus dementia has got to be traumatic for her. And I'm sorry you have to go through this. Sometimes life sucks doesn't it??
Since our weather started changing and the leaves are so pretty, I realize this is another season I'm going to have to go through without my husband. I have so many outdoor fall decorations, but don't even feel like putting them up. Wonder if I'll ever be able to feel "normal" again.
Hope you're doing okay. "Carole"

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

Thanks for your concern. My mom hasn't been told she has cancer. She wouldn't really understand or remember and we decided not to tell her. My sister would then have to just keep repeating it to to her. She has been suffering from depression also even with meds. She will be 92 next month. Because of the dementia and other medical problems, the doctors have recommended that we not treat the cancer. My sister is her full time caregiver which I really appreciate. I am doing fairly well. I had a good weekend with a church workshop on Saturday. Sunday it was a pre-church meeting, church, lunch with friends after church, then dinner with friends that evening. In fact, I had an international day. I had English muffins for breakfast. We went to a Mexican restaurant for lunch. In the evening, a friend's foreign exchange student invited me to join them for a celebration of Germany reunification and cooked us German apple pancakes. A very nice day. Then about one this morning we had a couple of hours of thunder and lightning which is not really common here. My poor dog had a panic attack complete with shaking and heavy breathing. He couldn't decide whether he wanted to join me in bed or hide. So he kept going in and out of the bedroom. So life does go on. I couldn't help thinking how Doug would have laughed at the dog while trying to calm him down. Fay

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

I guess I disagree with this, in my opinion there is only a before and after... my life before the diagnose of my husband's cancer and our life after. Our lives will never be normal again. It changes day to day, worry after worry so how can that ever be normal? My head spins sometimes...kind of like Linda Blair on the Exorcist...

Fay, your story about your mom had me crying. My husband's mother died from Alzheimers several years ago. When my husband's and our relationship began it was a long distance one and his mother wrote to me several times after we met. We got to know one another through these letters and one on one. After my husband and I married this disease took her over and slowly ate her mind and body. It was awful to watch. Since I was the newest member of the family I was the fastest one to lose in her memory. She died in springtime, that Christmas I pulled out one of those letters and gave it to my husband for Christmas. By the look in his eyes I don't think I could have given him a better gift, it became priceless. His mother was our biggest supporter, as you might guess second marriages come with their own problems.

Anyway, I just wanted to share that with you. It is an awful disease for everyone in the family. My heart goes out to you.

Deb
lovingwife to Bob, melanoma stage 3c

virtual_voyager
Posts: 33
Joined: Jun 2010

Hello again,

Now when alone and am in a position to shed the tears that build up when they can't be seen, I can't cry. I couldn't cry enough to stop it or change anything.

She's sleeping now, I can tell from her breathing she is sleeping well.

I sit and listen to her every night. It's all that's left of what once was, a small sound that sounds "normal".

I enjoyed your (collective) comments. I don't know how often I will be here to write what is happening, but I intend to relate my feelings, perspective, anger, fear, guilt and last but certainly not least, that breaker of spirits everywhere, HOPELESSNESS.

V`V

Noellesmom
Posts: 1275
Joined: Aug 2010

Hugs to you, VV. Just lots of hugs.

You will come out the other side. It's a rough place to be right now, but God gave you a gift and you are mourning the loss, already, of its physical presence.

That's a good thing. Grieve a little now, a lot later. Anticipatory grief is, in some ways, the first step to healing in this kind of situation.

Watching a loved one leave is never easy.

nyogus1
Posts: 30
Joined: Jul 2010

VV.....Your posts really move me. You touch my emotions so clearly. I often listen to the sleep too, the rhythmic breathing. God Bless you and your's. I hope for peace of mind and spirit, or at least moments of it. Nancy

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

"normal is just a setting on the washing machine" friend had that as a status a long time ago

"go with the flow" when hubby (stage IV laryngeal w/ complete larygectomy) was working still, that was something they used to describe they way all the new guys needed to work. He works construction so they have lots of little sayings to help get them through their day, such as . . .

"there's no I in team, but there are 3 U's in You Dumb F^%$" I'm using this on the next round of idiot med students that traipse in here like cattle. GET OUT! or better -

"there's no I in team, but there are 3 U's in Shut The F&^% Up" test me again grouchy nurse. test me again.

To me there is no such thing as "normal." You have the usual and the unusual, which changes on a daily basis sometimes. It used to be normal for him to sleep four hours a night and have to slow down for me when we walked together. Now it's normal for me to sleep four hours a night and slow down for him when we walk together. Usual and unusual.

Feeling hopeless is something I know all too well and I'm still early in the game. By his second visit with his doctor, I had his entire funeral planned out in my head. I'm not embarrassed or ashamed to say that because it helped me to close off that part of my brain so I can focus now on getting him back to usual (notice I didn't say the phrase!)

This is not easy. But you find a balance. Somewhere.

Listening to him breathe now is music. It's clear, no whistles, no wheezing, no coughing up nasty white Krazy Glue, no sweats. He sleeps, for the first time in months, he sleeps so soundly. What a gift I have been given. More days to hear him sleep.

- April

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

You said it very well. I find this new world different and I to planned in my head after the first time but now We take it as we can get it! He sleeps more and I sleep less . But we still have each other.

Thank you April

Jennie

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

April,
I just snorted coffee thru my nose while reading the three U's. Actually, your whole post is very well said.

There's no I in team, but there is a "ME" by the way. Not as concise as the three U's, though.
Still chuckling,
Penny

virtual_voyager
Posts: 33
Joined: Jun 2010

Now another aspect of our relationship is all but gone.

She's my best friend and I can't talk to her about what's on my mind. The fear and angst of upsetting her day keeps my mouth closed, and we go about just like it was just another day.

Knowing what she is going through now plus anticipating what she will endure in the near future brings on the lowest low I've ever felt and within an instant a boiling anger I've never experienced before.

If I'm not walking in circles I find myself standing in the backyard staring out at ...nothing. Everything just stops, like my mind went into neutral.

....and my friends are already showing signs of "tired of hearing it".

I don't know which is worse, feeling helpless or hopeless.

If it isn't obvious by now, she IS my life.

VV

Noellesmom
Posts: 1275
Joined: Aug 2010

Not sure if you say you can't talk to her because she is unable to communicate or because you think it is not the right thing to do, for some reason.

If it is because it is difficult, I encourage you to try, VV. It really opens doors and windows and let's fresh air into the situation. It may be a relief to her to talk about it, also.

It can be a hard thing to do but I think it is the right thing to do, in most cases.

I have had these discussions with my husband, who has stage IV cancer and has completed treatments (PET scan results today so keep us in your prayers) and other family members. It has always turned out they are relieved to have the conversations and so was I.

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I, too, would encourage you to talk. One thing I knew when my husband passed away was that we had left nothing unsaid. That was a comfort. I won't say I was prepared for losing him because I don't think you are ever prepared. My husband fought cancer for six years. We had many hard conversations including some about what I would do after he died. He was worried about me, and those conversations seemed to give him some comfort. Your mom knows you are scared and even angry. Maybe she would like to talk, too. We mothers never stop being mothers. If she is able to talk continue to share with her. The primary thing I miss is that sharing. Take care of yourself. Fay

3Mana
Posts: 829
Joined: Aug 2010

Hi Luvinlife2,
Sorry for what you're going through. Hope you're doing okay. I was a caregiver for my husband for only 2 short months. He was diagnosed with stage 1V lung cancer and had cells in his brain & spine. We were shocked when we found that out, because it all started with a back ache which we thought was from doing too much in the yard. So guess we didn't want to face or think about what might happen. We loved each other so much, and had been married for 46 years.
He died from a RARE complication from AVASTIN. Was fine all day & night then went up to go to bed & he started hemmorraging. I screamed & ran to call 911, but after they worked on him for 1/2 hour it was too late. Anyhow, I never even got a chance to say goodbye. We never talked about what I should do if this happened. He had always done everything & was the best husband anyone would want. So it's been a rude awakening and I recommend that everyone talk and don't hold anything back.
Good Luck to You! "Carole"

3Mana
Posts: 829
Joined: Aug 2010

Luvinlife2,
No one likes to talk about death even though we know it's going to happen to all of us. I guess I just couldn't face thinking about going on without my husband.
What is your prognosis? You are getting treatments right? Cancer sucks, and guess even when people go into remission they still worry every time they get a pain or something.
My husband did everything for me. We never had to have a repairman for anything cause he knew how to fix everything. I didn't even put gas in my car! Guess I didn't realize what I was in for when he was diagnosed in January.
All I can say is keep talking to your husband and let him know you love him. Do you have kids?? I have 3 and don't know how I could've gone through this without them.
I know the holidays are going to be rough. Wish I could sleep from before thanksgiving till after New Years. Does this make sense?
Well keep in touch!! Tell your husband we're all here for him if he wants to talk!! He'll be okay, cause there's nothing we can do except go on living. Take care! "Carole"

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