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scamps67's picture
Posts: 20
Joined: Oct 2011

Spent all day yesterday getting his MRI, CT, bloodwork, xrays,met with the anesthesiologist. It was very stressful for both of us, I didnt know that I couldnt even wait with him for the hour he had to sit and wait after getting his IV and having the meds put it. I think I got my first taste of what this is going to be like for me...alot of waiting for him. I guess I will read alot! lol I also realized how long his recovery is going to be and it hit me that our sex life is toast for awhile....selfish I know but we have always had a great sex life and we wont even be able to kiss because the surgery cuts thru his lip. I am going to miss our closeness. I guess I am actually a little depressed today. sucks. After the first dr visit when we were told he has cancer we cried and were miserable but as soon as we got home he ignored me and talked on the phone to everyone telling them he had cancer! while I sat upstairs in shock and despair.....well, he did it again this time...as soon as we get home BAM he is on the phone, well I actually said something about it and he got off the phone and spent some time with me and THEN got back on the phone and then when he is off he wants my attention again. OH Lord how am I going to get thru this???????????????????????????????

Posts: 58
Joined: Aug 2011

You will get through it, it won't be easy but you will. Lots of venting, shouting, crying and yes even laughing.

Cancer really does SUCK!

husband stage IVb

scamps67's picture
Posts: 20
Joined: Oct 2011

are we really supposed to quit having feelings and totally focus on our loved one?? are we supposed to not tell them how we feel, i feel guily just telling this group. Maybe as it goes on I will just fall into the rythem? How do you do it? I guess I will just put on my big girl panties and deal with it as it comes!! LOL

LilChemoSmoker's picture
Posts: 192
Joined: Oct 2011

Hi Stephanie,

Don't think that you can't vent your frustrations here. I vented on my post about "what am I so upset over". There is a contrast between complaining venting. Venting is an active effort to free yourself of the frustrations that bind you in knots. Complaining is an effort to justify some sort of victim-stance. When people 'complain' about things, they are working under a motive of gaining attention for their circumstances as though they are a victim of the situation. When you truly have a desire to rid yourself of the energy that is binding you, you find a a venue to vent it and agree internally that this is your release. If you are releasing it, you can't too hold on to it. That is unresolved anger that builds into resentments.

The goal for a healthy balance would be to find your own system of healing your pains. Whether that be from an "ah-ha" moment reading one of the posts from the very diverse individuals here, or through your own self awareness of what works for you. The key is to keep it healthy for me. "No regrets" is a strong presence in my life. This frees me to move forward and not remain 'stuck' in a pattern of unhealthy behaviors that sabotage my intentions.

If I can't change the elements surrounding my hurt, then I must learn to live with it. That isn't to say that I have to focus on the bad qualities surrounding it. I can chose to focus on the moments of joy and strive to make more of them. That would be making lemonade from lemons. We don't always know how to do this, and that is why we reach out for input from others. Not everyone's input will fit us and the more people that post, the better our chances to connect to an experience belonging to someone else. So please do not stop posting your feelings. Someone will connect with you and learn from you as well as you learning from them.

There are no set rules to learning to navigate through cancer. There are however, a very diverse set of people that have walked this walk and have a lot of input to give us hope and inspiration to move forward.

Much love to you!

ddpekks's picture
Posts: 162
Joined: Sep 2011

You are going to get through this.....ain't saying it will be easy, but you will. Right now I hear as much fear as I do frustration. You are afraid things are changing and changing quickly. Well, they are. But, before long, you will realize you have a new normal. You will look back on some of your anxiety and think, "...geesh, that was nothing compared to this!" The "new normal" is change, baby change and we as caregivers will adapt.

Take deep breaths, go for a walk, go for a drive around the block, sit in your car and scream (make sure no one is watching, cause I'd hate to see you locked up... LOL) and keep saying it out loud here. It's therapy good for the soul.

You love him very much, you care for him very much. Don't sweat the small stuff. Ask yourself what does really matter and you will be able to pull those big girl pants up over your boobs before it's over with.


LilChemoSmoker's picture
Posts: 192
Joined: Oct 2011

"you will be able to pull those big girl pants up over your boobs before it's over with"! What an image! LOL Or maybe if you don't ever get to pull them up over your boobs, just wait, your boobs will make their way down to your pants! Ha Ha Ha!

I tell ya what I love to do when I am feeling overwhelmed, lonely, or at a loss of how to handle a given situation (aside from turning to all of your posts here) is making music groups to play for my mood. I love to take groups of songs that represent healing words and experiences for me and put them in groups for my mp3 player and I go to town. I can wear my ear buds cleaning, cooking, running errands, waiting in the Dr.s office or laying in bed trying to go to sleep. It is truly therapeutic for me.

Love to all!

scamps67's picture
Posts: 20
Joined: Oct 2011

after I posted my vent on here I spent 3 hours downloading music to my phone!

scamps67's picture
Posts: 20
Joined: Oct 2011

LOL....you made me laugh.......Thank you

LilChemoSmoker's picture
Posts: 192
Joined: Oct 2011

I love it!


chemosmoker's picture
Posts: 524
Joined: Aug 2011

I am jumping in I have never posted on this board. I'm LilChemoSmokers cancer patient. She is the most incredible caregiver on this Earth (NO offense to ANYONE) by my standards. She has saved my life 100 times and extended it for God knows how much longer standing in the gap for me, making sure I GET my pain meds and doctors listen and etc etc etc. She is a SAINT and a beautiful person. Anyone who knows her or has her in their life has gained something rare on this earth if you are asking me (no one does lol). I am SO grateful and lucky that she married me. I have been given a gift that I cannot even begin to comprehend or measure in Earthly terms or words. She is so special. So special. I digress.....
The REASON I am posting is what Scamps said-it struck a real chord with me...
I hope this is not offensive to ANYONE or out of place here?

I will try to explain:

There is NOTHING selfish or wrong with having the specific feelings you are having about your sex life suffering, or going away for a while, due to the horrible surgeries, chemo drugs, and their stupid side effects from hell. I am aware of this side effect of cancer and it SUCKS. For ALL of us. Trust me here. The stupid pain meds ALONE for most cancer patients are enough to destroy any libido, and that's LONG before the chemo starts to destroy the actual body, organs, and blood flow. Surgery to take away kissing?? I would be angry as hell too. All this and not even to mention the possibility of procreation, or loss of it due to cancer treatment. ARRRRRRRRRGGGHHHH!!

BUT don't give up. DO still cuddle (I know, it's so cliche to say that) and FIGHT like hell to have whatever and whenever kind of sexual relations you CAN still have. He can take care of you and you him-if that's an interest for him; I am betting maybe not with chemo and surgery right now, at least. But, don't let if go easily. Fight for whatever you two CAN do together, intimately. It WILL be worth it, and you deserve to have your needs met to some degree too. This is from me, a stage IV terminal EC patient. Just wanted to try and share this, don't know if it makes sense or came out right....

God bless all of you. YOUR job is SO much harder than MINE. All I have to do is be sick. YOU caregivers have to clean up our sick, and also get up and go on "the day after" as I call it. I admire all of you beyond my capacity in words to express. You are all my heroes.
God bless you each and every one of you,

jimwins's picture
Posts: 2111
Joined: Aug 2011

I'm sorry you guys are having to deal with cancer again and all
the difficulties that go along with it. Understand I'm not
a professional in the medical or pyschological fields and am
just offering my take on things.

I am a patient and have been fortunate to be my own primary caregiver
though my sister and brother-in-law have been great help and support
to me. I don't have a partner at the present time and often I wish I
did because it would be so nice to just have someone that close to me
that I could cuddle up with and share on a level that well - would be
weird with my sister ;). But the situation is what it is so I am
coping as best as I can. When I'm able, I try to focus on the postives
and look for opportunities. I'm not always successful and when I'm really
tired or don't feel well, I tend to get depressed and negative - just like
a normal human being. I tell myself that it will pass once I feel better
and have more energy and usually it does. I also forgive myself (the caregiver
and patient) for being human.


You are both processing cancer which includes processing grief, major life
changes, fear, anxiety and on and on... This brings on stress,
emotional chaos and other things.


On some levels, you both are requiring your own space to react and
deal with this and that's okay. You are protecting yourselves and each other.
I think in the beginning of dealing with it all (processing), it's probably normal
to have this "gap" in communication which will have an impact on intimacy as well.
A phrase you will find here is "the new normal". Once you find and adjust to that, it will be easier I think. It is important that you communicate honestly and
openly with each other and express your feelings and concerns when the time is right.

If you guys aren't progressing through the process, perhaps counseling would be a good


There are many ways to be intimate with someone.
Maybe this is an opportunity to be a little more creative.
Perhaps you can do small things like give each other relaxing massages
while listening to soothing music which would be therapeutic for you both.
It might open that door to better communication as well.
It doesn't have to culminate in the traditional way to be beneficial for
you both. I'm sure there are people here who can share with you what
has worked for them (perhaps more privately in an email).

I found this information regarding intimacy during cancer:





There are wonderful people on this site and you are welcome to rave, rant,
scream, cry and laugh here. I just ask if you start pulling your hair
out, please donate it - too many of us don't have any ;). I hope you don't
mind my crazy sense of humor :).

Big hugs,


DrMary's picture
Posts: 522
Joined: Nov 2010

His way of dealing may be different from yours - sounds like he really needed to tell folks (many men decide not to tell anyone; some folks try to pretend cancer doesn't exist). What I'm hearing is that he is not ignoring you, but seems to be putting you in second place after the friends. However, it's also possible that he's trying to compartmentalize his feelings - he might want to do the "OMG I have cancer" thing with friends and family, but come to you when the deeper and scarier feelings come up.

Venting helps - I never felt that I, as a caregiver, was not supposed to have feelings, but I did try to avoid letting my husband see anything that would depress him too much (like crying in the bathroom occasionally) or make him lose confidence in me (since he seemed to think I could fix just about any problem). I was lucky - the one time I totally lost it, he was in a hospital room and I was down the hall. His doctor was a bit surprised (I basically threw myself in her arms and cried) because I guess I had been such a rock before that.

It does sound like he's going to be expecting you to be there when he needs you, but might not be able to be there for you. Find someone who can be (I did a buddy system thing with a friend at work whose son had killed himself - we took turns getting each other through dark days).

And vent here - if you read some of my posts, you'll see that I certainly crossed the line between venting and whining; folks were very kind and sympathetic. It helped a lot.

palmyrafan's picture
Posts: 397
Joined: Mar 2011

to the world of "hurry up and wait" and wait and wait some more.

What you are feeling on all fronts is normal when you go along this journey. Oh it's a new normal. But don't let it build up into resentment with the patient because you don't feel that your needs are being met. As for your sex life? Some can still enjoy an active sex life and others can't. I am the patient (brain cancer) and my husband and I had to learn really quickly how to find ways of "enjoying each other's company" other than sex. They caused me to have seizures. You get creative in all aspects of the journey.

For the incessant waiting while in doctor visits, exams, tests, etc., take something to do. You'd be surprised how many people I see in waiting rooms with books, iPods, knitting, laptops, puzzles, etc. that helps them focus on something other than what is going on. They say it helps them maintain their sense of self. Don't forget to take care of you; your needs are important too. When you can take care of yourself, you won't build resentment toward the patient.

Good luck,

LilChemoSmoker's picture
Posts: 192
Joined: Oct 2011

I just love your posts! You again have brought forward a great lesson I learned in therapy with my husband YEARS ago! A "sense of self". What a concept. We learned in our therapy that we came into the marriage as a very co-dependent team. We "completed" each other, which precipitated the next phase of our lives. Identifying with our "self" and defining our "self". We learned that we needed to be two wholes coming together to make a pair and not two halves making a whole. This made a lot of sense to us. We learned that when we are one whole each we can get our own needs met when needed and during the journey of cancer this has come in very handy! I can not possibly "expect" my husband to meet all my needs when he is battling his own mortality. That would be very needy and selfish of me. He meets some needs, but definitely not all. The gap is filled by my 'Self'.

Thanks Teresa! You're the best!


palmyrafan's picture
Posts: 397
Joined: Mar 2011

you made my heart smile sweetheart!!!

I have been "Blessed" by dealing with this for 18 years. Yes it gets old, but my hubby (my caregiver) and I have figured out an awful lot over that time. We've learned how to fight, how to get angry (not at each other, but at the cancer), how to navigate through this horrific maze called cancer and just balancing life in general. Neil and I are Blessed because this is a 2nd marriage for both of us. The cancer was discovered the 2nd year of our marriage. However, before we got married we asked each other a few simple questions, like, "what went wrong in your 1st marriage", "do you take ownership for your part of the breakup", "what would you do differently" and "what rules do you insist on". We decided that the two most important rules to make our marriage work, come hell or high water, was (1) open communication and (2) to always be honest with each other. We also agreed that we are unique individuals and thereby we were both entitled to our own opinions. Didn't make them right or wrong, but entitled to them we are. Amazingly, we have made it work so well, that my niece and and her fiance were overheard saying "we want a marriage just like Teresa and Neil's".

It is hard to put each other first when cancer is the white elephant in the room. But we each try every single day to put the other person first, knowing that whatever we can do to help make their day a little better, just might make ours better too.

Oh we still have disagreements and misunderstandings, but by letting each other have our own space when we need it, we are able to strike a fair balance. We have also learned that happiness begins within yourself, not from someone else. The other person can only compliment what you already have and if you are counting on someone else to make you happy,then you will have difficulties along the journey.

Cancer is never easy, I don't care what kind you have. It is an impossible situation that is difficult at best to deal with. I just hope that good days outweigh the bad and I rely on my Faith to see me through. For I know that cancer can't follow me to Heaven and that ultimately, regardless of how I die, cancer won't win.

Hang in there honey! You're an inspiration to me too.


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

There are alot of things that will be different as you go forward with this disease. He will be moody and need to vent in different ways than before. I internalized alot of things when we first got dx'd but in time you will begin telling yourself that he is the patient and you are the caregiver. It is hard to even imagine what is going through his head. At first diagnosis alot of patients just want to talk to people they love about their cancer, my husband did. Then he got very quiet when going through his treatments. Unfortunately, this disease changes people and sometimes not for the best, but we are in it for the long haul however long that may be. There are lots of people sharing your walk and make sure that you lean on them and the people on this discussion board for strength. I will keep you in my thoughts and prayers. Try to do one little thing for yourself every day - even if it's just a hot bath or a few minutes reading or posting on this board. God Bless <3 Michele

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