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Wishing he didn't hurt so much

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

I haven't kissed my husband passionately since he had the first surgery to remove what we were told would be a bronchial cleft cyst on July 26. I really miss his physicality in our relationship. I forgot today and hugged him and was going to give him a peck on the cheek and then he stiffened up and grimaced in pain. I didn't mean to hurt him but it did. He hasn't even started the hard part of this process. We go on Thursday to remove the base of the tongue cancer. Wait a few weeks and then chemo and radiation concurrently. How do the caregivers deal with the inability to be physically close with their spouses during this time. I love him so much and wouldn't want to hurt him for anything, but I miss snuggling with him.

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

to be the caretaker of Greg, because I am the snuggler, the cuddly one...he is not so much....so I don't have to brace when he came into a room in the same way he might have to if he was the sick one. Just keep in mind that kind words, knowing we are loved, anticipation of somehting we might need....all of these feel like a warm hug to us. Your lives WILL return to a normal, right now just hold his hand over the bumps and hurdles.

p

CivilMatt's picture
CivilMatt
Posts: 2961
Joined: May 2012

Hi VivianLee5689,

Hugging, peck on the cheek and snuggling doesn’t sound harmful to me, matter-of-fact they sound pretty good (now, today, not during treatments). Ask him if it hurts; ask him what he wants to do and what he feels comfortable with. This is the time to start being straight with each other. The kind of intimacy cancer brings is truly the bare facts about being human and how we react to physical and mental pressures. Don’t get mad and take his reactions personal, he is already feeling guilty (even though he should not).

While I love my wife very much and was guided through this morass by her, there were times when I just wasn’t up to being close. This even went for my Mom and Dad. I was glad everyone cared so much, but I just felt miserable.

I had lower tongue surgery along with lateral neck dissection prior to rads and chemo and to be honest I couldn’t even tell my tongue had been worked on (not any pain), my neck a little more so.

So, be patient, be honest, sometimes like Phrannie said just hold his hand. Who knows, maybe, give him a hug, a peck on the cheek or snuggle.

Best,

Matt

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

You don't realize it but this is a time that will bring you closer to your husband than most people get in a lifetime. Find your own gesture or way of compensating, my husband kissed his fingers and touched my forehead or kissed the top of my head as his way of showing affection. Find a short term solution that works for both of you.
Your husband may have times when he could feel miserable, angry, or sad. If he says something insensitive, please don't take it personally and know when he apologizes that he means it. These are not the hopes and dreams that he had for your first year of marriage either, assure him it's just a delay and continue to talk about those dreams.

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

Hard question indeed, I know that when going through treatment the last thing I wanted was anyone to touch me because everything hurt so badly. Its make it hard on a relationship but things do get better after the treatment stops and he get to his new normal.

Take care
Hondo

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

While I didn't really hurt during treatment, and never got sick...I felt crappy pretty much all of the time. That doesn't even play into what's going through your head as for survival.

He'll get his head right eventually, I'm pretty sure he's still in a little of that shock , denial, acceptance mode also.

During treatment, I worked from home, my wife at her office away from home. So it was weird... I liked having someone home and with me, but I didn't want to interact, or hear them LOL....

I remember giving my wife crap because she was making to much noise getting silverware out for the dinner she mae me..., now that's crumpy...

Of course she gave me the whatfore...., LOL.

I pretty much slept on the couch from January - August 209... Noooo, I was banned to there for my behavior.

It was just easier during treatment, wearing the 5FU pump..couldn't sllep more than 2 hoyrs at a time...it was just easier.

Anyways, give it time and realize he (you) are going through one of the hardest periods in life that either of you have been through before...both mentally and physically.

Best,
John

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

I know what everyone is saying is good advice. It is just so hard knowing we have only been married since May and his father died a week after the wedding. We haven't had very good luck. I hate this for him and I honestly I hate it for me as well.

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

We all hate it...those feelings are normal. The loss of your husband's father just a few months ago has to make this even more difficult. Your anger at the situation is understandable, however, the sooner you can come to terms with it, the better off you will be.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

My 2 cents is this...

If you are newly weds you are in bliss right now (so soon after the wedding) ...I have been married to my wife for 14 years when diagnosed this past October 2011 with stage III base of tongue ...that dx pretty much sucked the snuggling out of the room (if you will) bc with five kids (at least that proves we know how to snuggle a lot) and my treatments being 100 miles from home (I lived in an RV for the first few weeks by myself while going through treatments) it was all we could do just to stay organized.

So October to January radiation ( I had a rough reaction to Erbitux and radiation so mine took longer) ...then 6 weeks to even feel human again...then a stomach tube till June ... no snuggling.

BUT ..I will tell you this...I love my wife today more than I ever thought I could. I have neve seen such resolve and energy coming from her....I know there were many times I would feel half-dead and tell her a story of soemthing I remember her doing..and she would say to me "I did not even know you were paying attention" ....I told her "honey, I observed and watched everything you did and was amazed at how you handled taking care of me, the five kids, their school work, our home, the finances and driving back and forth 20 times in the winter (we live in Northern Idaho at 5,600 feet in elevation - trust me when I say you don't want to drive that road we have to drive in winter to Boise, 100 miles south)

I guess my point in all this is (maybe not now) but years from now you will realize just how imporant the above is "over" physical affection ..not that physical affection is not important ..but what you and your husband have now will draw you sooooo close ..it will surprise you ...and I know as the patient (which your husband now is) ..he will admire and be in awe of you for what you are about to endure and go through....

Hang in there (hope nothing I said sounded preachy or condesending)...did not mean it in a bad way ....

Most couples experience a rough time in life that will draw them close...some never do...you two will experience that sooner rather than later.

My wife has always been gorgeous to me, just beautiful (see my picture of her on my expression page) ...but she is more beautiful today than I could have ever imagined :)

Best,

Tim

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Thank you for sharing. During treatment, my husband was everything for me, in the way that your wife was for you. You describe it so simply and yet so profoundly.

Deb

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Wow Tim! What great advice and caring words you've shared. I got teared up reading them. Thank you for sharing that all with us. Life is so precious..

katenorwood
Posts: 1829
Joined: May 2012

VivanLee,
Hey there ! I wish there was some magic fairy dust I could sprinkle and make it all alright. You being the caregiver are on a tough road...and being newly married. Oh please know what you're feeling is so normal. But please keep the communication open with your man. I am also going to direct you to another site, for caregivers under the discussion board sites. I think it's under just that. Somebody correct me if I'm wrong. But there are alot of people that will understand your feelings...please keep posting and keep that communication open with your hubby...if he's willing. My warmest regards to you both ! Katie

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