What do we do now?
 

Hi - Ive never posted on this particular board but I am looking for advice and thought this would be the best place to find it.

My AMAZING husband was my primary caregiver while I was going through surgery, treatment and everything that goes along with it. He gave up a lot to go through everything with me. He never missed any appointments, chemo days or surgeries.

I am 2 years out and seem to be doing well (I just graduated to 4 month check-ins with my oncologist :) ) I want our life to go back to how it was before (and I know that isnt 100% possible because this has turned us into 2 different people) but trying to get some kind of normalcy back is important to me. I feel like I owe that to him. The problem is that we seem to have grown apart in some small way. I asked him about it and he said " Things are different, you want to bounce back to the life we had before and I am standing here thinking, what just happened? I can't just turn off the fear and anxiety".

Whoa. I guess shame on me, because I didnt take into consideration ALL the feelings he would be feeling. Now I feel like crap and maybe a little selfish to want to move on and try and put this behind us.

Any caregivers advice? Please?

Some history: we were married in 2009, we miscarried in 2010 and then I was diagnosed 2 months later, 9 days before our first year anniversary... and for the rest of our marriage we've been fighting cancer. Not your storybook newlywed story. Now that I am better, I really want to give him those years back but I feel like he doesnt want them and he is perfectly comfortable where we are right now.

Re: What do we do now?
 

Unfortunately, we can not change what has already happened. It is part of our story now. Our experiences make us who we are, for better or worse. We do forget that our husbands/loved ones are going through their own fears. Things will never be the same as they were, but why can't they be better? Make this a new chapter with new memories. We cannot let fear rob us! We live about 50 miles from the city and I was struggling with the idea of the drive for my 30 radiation treatments. Trying to be realistic, I said to my husband "I could go through all of this and still die a year from now". He replied "you could be killed in a car accident tomorrow". He is so right. Chances are I will die from something other than cancer. My point is, none of us are promised tomorrow, but we cannot live in fear. Make the most of today and let us all remember the saying " It is better to have loved and lost, than to never have loved at all.

Re: What do we do now?
 

I think we do forget about those who care for and support us.

You have been given some good advice. I think you both need to realize that your whole married life was one struggle (the miscarriage) after another - having such a sorrow and not be able to get thru that fully only for you to be diagnosed with cancer.

Your husband lost his child and then struggled (and struggles) that he will lose his wife too. He is afraid to be happy because his happiness ended so abruptly.

I am sure you can also understand his pain.

Start slowly with new memories. And I hate to sound like Ann Landers, but perhaps a few couples therapy sessions will help too. You will get thru this bump. He just needs proof that his happiness will stay and it will!

Re: What do we do now?
 

I sent you a pm but not sure it sent properly, it gave me a stupid message after I wrote this huge novel for you. Geez. Let me know. I am here for you. I recently struggled with the same issues but it was me that said it was different. We sat down and discussed alot of things and he opened my eyes to what he was feeling as well, we are not getting reaquainted and starting over again and finding that each day is getting back to normal. I said all of this in my message so I hope you got. Just another hurdle.

Re: What do we do now?
 

Good advice all around.

Lasarles - my oncologist said the same thing to me about getting in a car accident, totally put things into perspective!

Becky - I have suggested therapy, and he isnt interested. I decided that I could always start with me, so I am in the process of finding a good therapist.

Darlene - I didnt get your message :( Maybe I am in a little bit of denial about things being different, because I want them to be "normal" so bad. Grrrrrrr. I need to keep my ears open and pay better attention!

Re: What do we do now?
 

When I was diagnosed I felt incredible guilt and shame. I was used to being the "go to" person and being in the "sick" role was difficult and still is. I had only been married 3 months when I was diagnosed with Stage IV Inflammatory breast cancer. Our lives are not the same and never will be. It is what it is. My husband and I talk about it even if it makes him sad and uncomfortable. The trauma of the disease and the losses that you have had are indeed difficult for you and him. If he will not accompany you to counseling, you could read some books together if he would be open to it. Oftentimes, the person diagnosed with the disease barrels through the treatment, whereas the family members are still left reeling. If your husband is still in the thought process of losing you, connecting intimately physically or emotionally will be challenging for him. There is a ton of material on the subject of cancer and marriage. The trauma of losing your child is yet another trauma. In the field of mental health there is such a term as complicated grief. This may be coming up now that you are both in place of physical strength which can allow the difficult but necessary work of emotionally healing.

Take care,

Jackie

Re: What do we do now?
 

Everyone handles these issues so differently.... in my situation, my husband is able to move forward, and I awake very morning with a sense of dread, which gets better once I get busy.
I agree given your past circumstances, that counsellig nwould be helpful. He sounds like a peach, and deserves to enjoy his time with you....

Re: What do we do now?
 

Hi ... I wanted to respond to your post because we have a lot in common. We got married in December 28th, 2012 and less than three months later I was diagnosed. We were wanted to get pregnant and had gone to the doctor for a checkup because we are in our 40's. I was 44. For our whole marriage we have been fighting this cancer. My husband was also really supportive and made it to every appointment, chemo, radiation, and Herceptin treatment.

I don't think we have grown apart but your post is a reminder to me to try and stay close. Just one week before my last Herceptin treatment, my mom was diagnosed with colon cancer. Her cancer is Stage 3. She lives with us and we are about to go through chemo again with her (she will be going through chemo).

It sounds like you are married to a really good man. You have been through so much with the miscarriage that maybe you did not even have time to grieve before your cancer diagnosis.

I do not know that I have any advice other than to say it is really sad you (and we) can not get back the time we lost while dealing with this cancer. It is also sad that so far you (and we) have not had the traditionally newlywed life. We spent our first anniversary in the hospital at a Herceptin appointment.

BUT, the whole future is ahead so seize every day. Maybe go on a couples weekend retreat, Valentine's is coming up ... working out together is always nice and enjoying the outdoors, doing projects around the house ... sipping tea in coffee shops ... waffles on Sunday mornings (we are doing this) ...

Hang in there, believe, and love ...

Rose

Re: What do we do now?
 

Kellennea,
Some good advice has been given here. I'm still trying to figure out how to get back to "normal", the way we were before the diagnosis. I'm not sure that's possible, as this experience changes everyone involved. I have the same fear and anxiety your husband experiences. I don't let it show because I feel guilty for feeling that way when I'm not the one with bc and shouldn't complain. I will take some of this advice and try to apply it to our life as well. Rose's previous comment about couples weekend retreats and actively trying to do things as a couple is something we definitely need to start doing (now I'm craving waffles, lol). We both work full time and have 4 kids from previous marriages living with us (ages 10-17) so getting that time alone can be a challenge, but needs to be done.

Re: What do we do now?
 

By the way, I just realized I posted our wrong wedding date! It was December 28th, 2010 (not 2012) .....

Re: What do we do now?
 

Kelleanea,

How are things going with you?

Somehow missed this thread when it was posted.

Your husband might have been depressed. In between me and my husband we've had six surgeries in a 20 years span. After his mother passed away from Alzheimer's and my 2nd bout of breast cancer, he finally told his family doctor and received a referral to a psychiatrist who prescribed some counseling sessions.

When that wasn't enough, he began to take very low dose anti-depressant. Turned out his family (from his Father's side of Scandivanian roots) has the depression tendency. Maybe people didn't get enough sunlight in that region. With regular exercise and the low dose antidepressant, he's been doing much better.

If your husband wouldn't go to counseling, it might be worthwhile to go by yourself. A professional counselor could help you sort things out and give you some good tips.

Communication is a two way street. Sometimes we just have to be patient and tactful...

I often laugh that even though I was the one going through multiple cancer treatments, family members around me are the ones that were falling apart. (My 2nd Sister literally went 'nuts' when she came from overseas to help take care of me in 2007. Fortunately her husband wanted her to go home when she was planning to stay longer... :)

Re: What do we do now?
 

Hi Kelleanea.

You guys are going to be OK. We're coming from different angles, but I can tell there's alot going for you guys.

-First of all, 2 years free is AWESOME!!!

My wife and I are just starting out on this journey really - we've been together for about 15 years, but the cancer has only been since the first "Hmm, what's that lump?" in November 2012. Double mastectomy, reconstruction on the right, tissue expander on the left. Her first dose of chemo (taxotere, carboplatin, herceptin, then neulasta) is tomorrow. We're both doctors, so we know that side of the conversation - the reality of medical literature, data, studies - all of which are good, but only help so much when your own fears and anxieties feel more real then the things you know. I lost my dad in December to cancer after 5 years of hell, so it was really on the brain when we found out.

We have 4 young kids, and they help stabilize our home through collective insanity and love. We've got family close, and others if not close, near an airport. But we don't have what you guys have.

Just each other.

Don't try to go back to the way things were before. Move on to the way you and he want things to be now. Travel. Explore the world. Take dance lessions together. Go to concerts every weekend. Whatever - do it together, and concentrate on the future you have together. Use the solid rock of a foundation you have already achieved through this experience, and build on it. When you and he are concentrating on the good things of your life now, it will help let go of the fear about what may lie around the next corner.

I may be going out on a limb, but I'll say this. It may be because for the past 7 years we've had kids all over the place day and night, but here's my advice. Have good sex! Often! Your body is the way you see it and feel it, not the surgeries. It may not be exactly the same as you remember, but inside you're still you, he's still him, and you guys have still got some honeymooning to do! It's about that love and attraction that got you two hooked up in the first place. Remember how to be close to each other, and then just take it from there.

Don't think about giving years back, look at the time you've got now. Counseling can definitely help, and there is a time and place for medicine.

How are you? post back. there has been alot of good advice posted up here, and you've got LOTS of sisters and brothers out there that care.

Re: What do we do now?
 

Such wonderful replies. Thank you. Ive been "away" for a while because things became gradually worse.

On 12/21 my husband told me he wanted a divorce. I spent the holidays without him, we went about our family visits alone. His family as well as mine was devistated with the news. On 2/14 he filed papers and only one week later on 2/22 our divorce was final.

I spent 2 months reminding him of everything that we have been through together, of the promises that we made to one another, of how he told me, when I lost our child and then was Dx'd with BC that he would rather have me to grow old with then to have a child that he would have to explain everything to and raise alone... but none of it mattered and his mind wasnt changed.

My heart is heavy and instead of "things getting better with time" I am finding that it hurts more and more every day. I am devistated by this. I feel like I've been punched in the stomach. My protecter and biggest supporter is gone, leaving me feeling sorry and apologizing for getting sick and ruining everything for us. I am so embarassed and humiliated that I havent even told anyone, except for close friends and family and my HR department because I also lose my medical and have to apply with my employer.

I may not have lost my life to cancer, but I have lost my "life" to cancer.

Re: What do we do now?
 

I am so sorry for what you are going thru and have gone thru but first and foremost you should not feel embarrassed or humiliated. U did not choose to have cancer. I know I cannot say anything to take away your pain but maybe this is a new beginning not an ending. Maybe there was something going on with your husband that he never told you about. Really, a divorce final in a week? Time heals although is doesn't seem like it right now. You have had 3 years from hell, try to focus on positive things. Hang out with positive people and try to have fun. Your knight and shining armor is out there. Please do not blame yourself. It takes two to make a marriage work. My heart is heavy for you cuz I know how much you love him. Take care and we are all here for you. Darlene

Re: What do we do now?
 

Kelly,
I'm so sorry you're hurting. But please don't even for a second think this has anything to do with you getting sick. If that was the deal breaker for him...he wasn't the man you thought you married, and certainly isn't worthy of your love.

You have so much to offer, and so much to live for. I'm hoping and praying that joy and love return to your everyday life quicker than that damn divorce became final!

With love,
Denise

Re: What do we do now?
 

I am so sorry to read this...I have always identified with you because we are so close in age and our diagnosis is almost identical

he said he cant just turn off the fear and anxiety yet he expects you too? the person who just went through all the hellish treatments? that fear about the future, anxiety about what just happened needs to be worked out together. Neither person in the relationship will ever be the same - but you are certainly not at fault, you have just been through a LIFE THREATENING illness and yes our relationships suffer and it takes time. Two years is not that long -especially when you were in treatment for half of it.
I agree with Denise - if that was reasoning then he wasn't the man you thought you married

Re: What do we do now?
 

I think except for my first post I have not made any posting in this section. What do we care givers do when we are tired mentally and physically.
I am 72 and I am finding it a bit tough on my system to give the amount of attention I want to give Hema.I find the mental stress when she is having dioreeah to decide whether to give immodium or not al also pain killers when she is in pain. My tension is that if I rush it may weaken her system. She had her Herceptin and navelbin with zole trust on Thursday .She passed a bit of loose motion. I gave her immodium last night and for the last 24 hrs she has not had any bowel movementsb.Now I am tensed up.
So we must learn to give up our tension .How do I go about it.
All the best

Re: What do we do now?
 

I am sorry I goofed up without fully reading the posts in the thread

Re: What do we do now?
 

Oh, I am so sorry this happened to you. There are women on this board who also experienced this. Some their husband left during treatment. They may not respond because many women don't continue to come on the board after treatment is over.

You will survive and thrive. You do have to get over this terrible blow. But you did nothing wrong. One day, your husband will realize what a chump he was. Any other woman in his future will realize he is only there in the good times, not bad and in health and not in sickness. And you weren't even sick anymore but on the way to recovery. You are also almost at the point where the anxiousness starts to go away too.

Give up the bad feelings about yourself. Start being angry and sorry for your ex-husband. You got over cancer and you will get over this too. Time is our friend.

Re: What do we do now?
 

I am devastated for you too - what a complete idiot! You know it really does sound like you will be better without him - though I am sure that is hard to digest at the moment.
Be strong, enjoy family time and keep looking forward - just like always for all of us here!
I can't believe how quick the divorce came through - that does not give you any time to process what is happening - how can that be?
Take good care of yourself
Jen x