#66279 12-28-2007 10:52 AM | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | I've been wanting to post about this for a long time, but for some reason kept shying away from the subject. After all - we've all got so many bigger problems and concerns thanks to this nasty disease and treatment...
Anyway - on to the topic of kissing. I've been scared to death to kiss my husband since surgery (and definitely didn't think that vomiting all over him was very romantic, so didn't want to be kissing during treatment). We haven't discussed it, but I notice that he doesn't seem to want to dive in and kiss me passionately either - at least I know that it hasn't happened in the 9 months since my diagnosis. He doesn't even seem to want to kiss me on the lips - more like chaste pecks on my forehead like I'm a child these days.
I guess I'm nervous that "involved" kissing will gross him out - after all, the anatomy of my mouth is rather different these days. It is something I suppose I can live without, but at 37 years old it seems a bit early to give up on passion and romance.
Is anyone else out there having the same concerns? How about caregivers who are caring for spouses/love interests - does the thought of kissing your loved one gross you out? What's the scoop?!
Lisa
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Lisa, I am 71 and still love a good long kiss. I just wonder what she thinks of it after the mouth surgery too. She has never even mentioned fears or anything ,. I'm just hesitant about it and it is killing our relationship. Try it by just grabbing him and putting a big lip lock on him. Maybe you will arouse his interest and maybe other things as well. LOL Good luck
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Lisa,
Have that exact discussion with him. At a minimum, leave him a written note if you are to shy. Or you can always ply him with alcohol and kiss him passionately!!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Interesting subject Lisa!
Kissing was always part of our daily routine, but now has to be much more gentle because of my pain.
Hugging is also difficult if totally spontaneous and and involves contact with my right jaw area!
I'm also seriously self-conscious because I'm a denture-wearer and in times of bad pain have to take them out--but must admit, that bothers him a lot less than me.
Just give him a snog--he may be worried about hurting you!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | I do think that he is worried about hurting me - I've gotten so thin that he is always worried that just hugging me is going to break me somehow. I'm not sure what he thinks about the status of my mouth. One of these days I'll have to ask him...:-)
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The way I see it is, we have the disease but they have the problem.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Lisa, I'm glad you brought up this topic as it is an issue for me too-though maybe a slightly different issue. Due to trismus, I can't open my mouth wide enough for a really passionate tongue kiss anymore--and my husband was such a great kisser that way. It is one of many things I miss that may never be back to the way it was.
On the other hand, the bright side of this is that within the last several months I have noticed my husband becoming much better at very sensual soft lip kisses and kisses over the rest of my face. There are ways to compensate!
I would encourage you since this concerns you enough to post about it ehre to have a conversation with him about it--he might just be scared of hurting you and talking about it could clear the air a lot.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Lisa Robin kissed me every day till the day he died.Considering half his face was missing i guess i could have been grossed out ,but any intimacy no matter how frail was so so needed by me.We hugged and embraced and i know it hurt him a lot but he never denied me our last chance at any physical contact .Anything more than a kiss and hug had been out of the question for so long i guess the kisses became more meaningful.
You go for it girl and if he doesnt react the way you want him to then TALK.
Love Liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Lisa,
talk with your husband and SHOW him your mouth so that he can see and understand what is different. ... He probably has no real idea how to react to this. You need to show him and explore what is comfortable to you (and him). It does not help if both of you put the head in the sand.... but I think it is you who needs to take the lead here.
Best
M
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Lisa,
Although my experience thus far comes from a daughters standpoint, I would venture to guess that he may be concerned that he would hurt you. Talk to him...maybe expect that the beginning kisses may be like what you had when you were a young teen-hesitant and fractured...give it time and patience, practice, and remember how much love you have always shared. I, personally, think that by talking about it may bring the interest up, though he may need more time to take it in, he might be scared he may harm you. Patience from you may be the key. Fear does an incredible number on us caregivers.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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