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CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

I have heard quite a few people say this on here... that things will never be the same once treatment is over.  It may sound silly to ask, but what is it that never is the same again?  Is it emotionally, physically, etc... I just kind of want to know what to expect with dad as time goes on...  

Also, a friend of mine's mother (I used to take care of her daughter who has developmental disabilities) has been battling breast cancer for the past 5 years or so.  She had a double masectomy, but the doctor just told her she will have to have chemo for the rest of her life.  Just asking that everyone keep her in your thoughts and prayers.  Thank God she is staying positive.  I just can't imagine :(

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

"what is it that never is the same again?  Is it emotionally, physically, etc.."

Yes..... your entire life changes in many ways from the moment you hear "You have Cancer" and the "everyone's different" mantra is the same.

"T"

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

I had my first cancer in 1998, complete with a radical neck disection and 35 rad sessions.  My mouth was very dry.  My taste was shot, and I felt like crap for quite awhile.  Then things began to improve.  After four or five years I felt completely normal.  Completely normal.  No dry mouth, able to eat popcorn.  No taste deficit.  No  energy problem.  No neck spasms.  Nothing.

 

Now I've had two more cancers, with major surgery, chemo and second rads.  I am not able to eat much in the way of solid food, 18 months out.  My taste is normal.  Saliva is down, but not out.  My exercise tolerance is very very good.  I do have some neck spasms.  Some of these deficits may be permanent this time.  But I don't know that ffor sure, time will tell.

 

My best to your dad.  The days go by one at a time, and when we look back, its amazing how far we've come, one  step at a time.

 

Pat

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

I truly feel like EVERYTHING is different.  Not bad..just not the same :)  My appearance has changed, my tastes, my outlook on life, my faith has deepened, my family is closer.  Cancer is a horrible, nasty, mean thing.  I was blessed to have a lot of good come from it.  I was recently in a video at church about people who have gone through very trying times.  I said this in my part "This year has been full of doctors, surgeons, hospitals, surgeries, procedures, treatments and recovery.  BUT...it's also been full of miracles, blessings, love and healing." 

 

I can't imagine treatments forever.  Prayers for your friend! 

phrannie51's picture
phrannie51
Posts: 3673
Joined: Mar 2012

At this stage of the game, the physical part is easy....I don't have the spit I used to have so simply keep water close.....my taste buds aren't what they used to be, but that's ok....I'll eat to live, rather than live to eat.  Relearning how to zip up zippers, button blouses, tie shoes was aggrevating, but my brain has pretty well compensated for the lack of feeling in my fingers so all that is getting way easier .....The physical things I'm dealing with so far haven't seemed to be anything compared to the alternative.

Emotionally....I have many many MANY days where I'm so grateful for what I have, the people in my life (family and friends), my animals.....even my old run down farm house seems wonderfully cozy and safe.  Then, out of the blue I'll suddenly get scared "it" is back...all it takes is a sore throat for a couple of days.....or my equilibruim to go south for a few minutes.....or an earache.....stuff I'd never have given a thought to in the past, now scare me.  This doesn't happen very often, but the fear can really overpower me for the moment. 

In the large scope....tho....things are BETTER.....in all aspects.

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks everyone for your inputs... I'm really just trying to get an understanding.  I'm not going through it myself (hope I never have to either), so it's just easier to ask and try to understand.  :)

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Hi,

The entire spectrums of both physical and emotions is in play for cancer survivors. Some return 100% physically to the way life was before cancer; I doubt anyone really returns 100% mentally pre-cancer as there lingers in the back of the mind that cancer is lurking around in some dark and hidden place just waiting for the right time to roar back to life; it is just fact that once one has cancer, there is greater chance of getting it again vs those who never have it.

Some lose their ability to swallow for life due to scarring from rads for example and forever reliant on a PEG for nutrition. Some later experience teeth breaking off or having their jaw disintegrate due to radiation destroying the bone. Others experience thyroid disfunction forever. The list goes on and on - short, medium, and long term side effects.

Then, there is the most scary end of the spectrum - Recurrence, which leads to repeats of what you folks have suffered thus far plus the diminished potential for good outcomes. Lastly, coming into focus is the world of pallative treatment and hospice in some cases.

Sorry to paint the full picture but such is the truth about this horrid disease. Personally, treatment is now in the rear view mirror after speding all my energies and focus on getting through that aspect of cancer survivorship, I now face the recovery phase which in fact is far more opaque as the future is unknowable and particulary so for we cancer survivors who have additional random factors and added curves and potholes into our road of life.

Enjoy and focus on each day. Don't look too far ahead as it generally does not seem to help overall; at least that is what I am discovering now.

 

Best to you both,

Don

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Don!  I am getting a better understanding... I think the biggest fear would be reoccurrence too... Hoping that no one has to do endure treatment again!

Prayers to your recovery,

Cherie

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Cherie

Physically, my biggest complaint is the feeling of fatigue, it is improving.  Let alone lack of taste buds and dry mouth, which are also improving.  None of these were problems prior to cancer treatments.

Mentally, trying to make the best of a really bad experience.  Realize there are no do overs in life, the cards you are dealt and the choices you make are it.

Your Dad will probably be fine and recover great.  Enjoy family and friends, enjoy life.

Matt

NoDuck
Posts: 132
Joined: May 2012

Life is never the same. I agree with the physical and mental explanations above. But even if all the saliva comes back, the taste buds work and you are NED for the rest of your days, life is never the same.  What might used to be a big deal is no longer abig deal. Maybe you appreciate the little stuff more. Maybe you appreciate your family and friends more. You certainly appreciate life more.

I was the caregiver, not the patient. But hubby and I both have different attitudes about lots of things. We take less for granted, we appreciate more. And we are both a little softer around the edges.  

Life is never the same after you hear "you have cancer." but it is not necessarily worse. 

Deb

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

I know one of the things about me that has changed after watching my dad go through treatments is not to complain as much as I used to.  I think sometimes some people just find the dumbest little things to complain about all the time, but when I sit back and look at my life... it seems simple compared to what others have endured.  I've learned to enjoy little things a whole lot more than I did before. 

sin9775's picture
sin9775
Posts: 196
Joined: May 2013

Dear Cherie, Yet again you have asked what I have been dwelling on a lot lately.  I have been getting rather depressed of late thinking that my brother Kraig will never be the same after all of this crap that he is going through.  Then I started thinking about it.  First and foremost, I pray that there will be an "after" . . . a LONG time after.  Then I realized that we, all of us, go through things that change our lives forever.  Puberty, marriage, babies - talk about never being the same!!!  If you are the woman who has had a child (children) your life not only changes, but your body will most likely never be the same.  Stretch marks, bladder issues, sagging breasts, varicose veins!  Then there's the hormone issue.  I won't even go there.  Would I give back my kids just so I would have a better body??  Of course not -- well, there were days . . . Wink   Then there's just plain aging.  You will discover that at 40, 50 and upward, things certainly change and will never be the same again.  Yeah sure, I have mourned the loss of my youth at times, but things are what they are, and we move on and adapt.  I have taken great comfort from the survivors and caregivers on this site that with all the crap that they have all been through,  are for the most part, not just happy, but blissfully happy, just to be ALIVE!!!  I know that my dear brother and your dear dad whom we love so much will feel the same way.  Yes, there will be a part of us that will feel bad for the changes that they will have to live with, but we will both thank God that they remain in our lives for however long as God blesses us with their presence.  Our loved ones rang the end of tx bell at about the same time and I am praying that we will be celebrating NEDs together for years to come.  That's what is important here.  Hang in there and try to stay positive for your dad!

~Shawn~

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Shawn,

I certainly hope that we both will be celebrating for them as well! I think I worry more than my dad some days! You ever feel that way?

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

For me, Abi-Normal as I am.....

 The biggest things that have changed.... I'm a lot more paranoid about health related things than I use to be. But also a lot more pro-active.

 Life attitudes,

Things that were once big, now not so much... Things once that brought little or minor thought, are now huge...

The rest pretty much doesn't matter.  A few bumbs, bruises, scars, etc.... I just think of those as added chracter. They define me, make me who I am...an individual

BTW, I do have a friend on here PhillieG that is or was on life chemo also... But as of his last MD visit, they have taken him off and he's in a wait see mode....  

Take out of it what you will....

John

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

We have pretty much the same experience as others have said.

Dad finished treatment in Sept. 2012 and this spring he began to be his "new himself". He is pretty much the same as he was before, but a lot more caring, loving... he is taking care of himself more. But we as a family get more paranoid. I got paranoid and all those little aches and pains in my body always scare me: what if it is something serious. I don't want even to think what if dad's cancer returns... In my mind I blocked it completely with all those good scans he got till now. I can't imagine what it would be like if he gets sick again.

But Dad is ok... I don't know how he feels emotionally - whether he is paranoid or scared too. He was always a rock, a really strong man - emotionally and physically. He's been through a lot in his life, so I think that this cancer just made him stronger. The good think about surviving cancer is that we all enjoy each other more. We appreciate time together, we love being together... Life is much more beautiful now.

Dad still has problems with saliva, still likes to eat food that has more moisture, but is gaining weight again anyway. He has problems with taste too. His neck skin looks pigmented - so we always have this little reminder of those radiations. And his shoulder hurts, but all in all, he is great! And we got used to this new normal.

 

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

For me it's so hard to understand some things until I get on here to talk to you all, because a lot of times dad does not talk about things.  I respect that and I understand.  I think he had a big scare (and I know Jeff will understand) because he just lost his father before he began treatment. 

Duggie88's picture
Duggie88
Posts: 535
Joined: Feb 2010

I've learned to accept and thoroughly enjoy John's abi-normal. As you can tell I take everything less seriously. I am not suppose to be looking at the green side of the grass so I am going to enjoy the extra days weeks months years I've been given. Kinda tough to put to words, I guess you have to live the hell to enjoy the heaven.

Dad will smile at things he never smiled at before and may even do things he never thought about doing before. I tell my kids their Mother and I are spending their inheritance.

jcortney's picture
jcortney
Posts: 410
Joined: Sep 2012

Today is a very good day for me to answer your post.  Today I am exactly 6 months out of treatment but, more importantly I am exactly one year out of being diagnosed.  That day (the day the Doc said "you have cancer") I think will always rank as the most profound in my life.  Not the most important by a long shot, but the most profound.  The car drive from the Doc's office to home and then the two hours alone before my wife got home from work were nothing but fears and tears.  Fears that my life was ending and all the things I had hoped to do would be left undone.  Tears that I would be leaving my best friend and sure I hadn't done enough to prepare.  Holding each other on the couch that night, both frightened and looking to a future with radically different outcomes, a new closeness developed that I didn't think was possible.

The understatement of the year would be to say that my treatment wasn't pleasant.  The good news is literally every day I feel better than the day before.  The bad news is there are times when I just know the cancer is there lurking, waiting.  Yesterday was my six month CT scan.  They scanned from my neck to my pelvis.  Intellectually I know I'm probably still NED, but all last night, every so often, a very quiet voice would say, "what if it's back", "what if it's back".

I think that before the diagnosis most of us didn't really think or dwell on our mortality.  For me, that's the big change.  The scale has tipped to the other side and I know that I'm on the down side of the curve and hopefully I'll use what's left well.

Your dad will make it thorough treatment.  He will get back physically.  But don't be surprised when he hugs you a lot more and sometimes gets teary for no apparent reason. You are his little girl and he hopes to be there for all of your milestones.

My best to you and your family.

Joe

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