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Supporters’ Fatigue

Supporters’ Fatigue

Posted by Ginbo2 on Nov 11, 2020 6:45 am

I’m just about to wrap up year one living with Metastatic Breast Cancer. At 42 After being diagnosed in 2015, surgeries, chemo, treatments, cancer free, went back to work, started living with yearly followups the cancer comes back but to the bones. 
I stopped working to focus on my health since physical activity eases the pain and I thought it would be good to do the things on my bucket list. I am incredibly lucky. I have a lot of support, great insurance, financial security, family, friends and a community who are there for me. 
Except for my husband is now seeing this new life as “no fun”. He’s 50, I’m 47 and our live is much more quiet and I am complicated. Covid added another element where everyone is extra careful around me and my Husband. I am now a constant reminder that I’m likely to die before him and he does not want to live at this pace anymore. 
I feel very good. Changes to my energy has left me with being tired in the evenings after a full day. I still can do a lot of things except partying. Alcohol has been limited from a fun bottle (or two) of wine to a glass or two once in a while. His daughter has moved into Uni as most of our friends and now he wants to do all these new things without me because I am now complicated. 
My life has changed but I’m not who I was before. I’m told 3-5 years but it could be more! I just don’t know what to do. Divorce so he can move on? 
It’s a lot. I know. Thanks. 

 

Re: Supporters’ Fatigue

Posted by Runner Girl on Nov 11, 2020 8:38 am

Hello Ginbo2‍ ,

I am very sorry for your cancer diagnosis and the relationship issues you are having.  Have you investigated counseling?  Your cancer center should have many resources available, please speak with your doctor about the options.  If it cannot help your relationship it might help you be able to move forward.

I went down that road myself.  When I was diagnosed at 52, my fiance was 57.  I gave him an out immediately, his response was that we would get thru this together.  We went to all my appointments together, he took me for my surgery but then things started to get weird.  He suddenly needed a trip to Vegas.  My surgeon would not clear me to fly.  So the fiance told me he was suicidal and needed to get away.  So off he went for a weeks vacation while I recovered.  When he returned he tried to guilt trip me because he had to go alone.  The weekend before I was to start chemo he moved me into the spare bedroom, citing a number of ridiculous reasons.  A week after my third chemo he told me I had 10 days to get out.  I read him the riot act and for a bit things were better.  At my radiation consult he took offense to me being examined by the doctor and proclaimed that I could attend the rest of my appointments alone, so I did.  I still had a few months of Herceptin treatments to complete when one morning he told me the relationship was over and I needed to get out.  This time I did!  I bought my own home and left.  Last weekend he showed up at my door, more than a year later with a card and letter - he wanted me back.  Furious, I emailed him my response that I want nothing to do with him.  I've found a wonderful man who accepts me, scars and all.

You're fighting a battle for your life.  Do what is in your best interests, take care of you.

Runner Girl 
Never stop believing in HOPE because MIRACLES happen every day!

Re: Supporters’ Fatigue

Posted by Lacey_Moderator on Nov 11, 2020 9:32 am

Ginbo2‍ 

I just wanted to say that I have enjoyed getting to know you through your posts and thank you for trusting us to share what is happening in your relationship. This is a safe place. Cancer and relationships are complicated on their own and can very complicated when mixed together.

As you know cancer can change the relationships in your life. People will all react to your cancer and cope with your diagnosis and treatment in their own way. They can struggle with strong feelings, such as fear or even anger or guilt. They too are dealing with change and upset, even though they’re not the person with cancer. Change takes time to adjust to, and it can be stressful.

Do you think your partner would be open to counselling? Are you?

My heart goes out to you as you work through this,

Lacey
 

Re: Supporters’ Fatigue

Posted by Ginbo2 on Nov 11, 2020 2:51 pm

Hi Lacey,
The forum has been incredibly helpful. Besides this group I have no one close to my diagnosis and treatments as those in this group. 
I’ve been seeing the psychologist at out clinic for 5 years. The clinic offered a social worker for my husband but he chose not to see them until last week. We were in couples counseling together many years ago and considering going again. So therapy for me is just as important as the medical doctors. 
I agree and understand it takes time for those close to me to accept my situation and some are great and many are afraid of  how to deal with me. I’m quite direct and transparent. 
There has been a turnover with the psychologist I was seeing and waiting for the new recruit. I will discuss and let you and the forum know how I’m doing. 

thank you for your support. 
Gini

Re: Supporters’ Fatigue

Posted by Ginbo2 on Nov 11, 2020 3:15 pm

Runner Girl‍ 
My goodness. Thank you for sharing and I’m happy you found someone who loves you. My H has a habit of needing to get away and I didn’t make the connection until recently. I have a new psychologist and will discuss with them. I’m a fixer and I can’t fix this. I understand he is hurting and has needs. I just don’t know what supporters typically do? How do they give up their dreams and passions for their partner with cancer? Or atleast put them on hold? I imagine it is terrible and I thought  if it were me, I would do whatever he needed for the time he had left. It just would be the right thing to do. 

there are supporters groups but he hasn’t called. I’ve encouraged it. Gave the phone numbers. So frustrating to deal with this and deal with this cancer every day. 

Again, thank you and hope you are doing well. 

Re: Supporters’ Fatigue

Posted by Lacey_Moderator on Nov 11, 2020 3:52 pm

Ginbo2‍ 

I'm so glad you have someone to talk to in a professional capacity 😊. It sounds like you have been very patient and done what you can to help your partner get support too.

We are here for you!

Lacey

Re: Supporters’ Fatigue

Posted by Kims1961 on Nov 11, 2020 5:05 pm

Ginbo2‍ Thank you for sharing.  Your post may help many others on here, as relationships can be complicated- add in cancer, COVID and navigating them even more challenging.

I'm glad you feel so strongly about your mental health and have connections. You mentioned you are also a "fixer" but can't fix this. I am also a "fixer" but realized that sometimes that is not my role or the other person doesn't see the need to be "fixed" or helped., and it's my issue than theirs. Walking through this journey can definitely be helped by seeing professionals, even if your husband won't go. He may find his way to figuring it out for himself or you may find your way to finding peace with a new way of being. 

I do believe supporters suffer from fatigue and sometimes want to be in "remission" from cancer as much as we do.

Thank you for your bravery in sharing.  Please let us know how you are doing.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Supporters’ Fatigue

Posted by Trillium on Nov 11, 2020 8:24 pm

Ginbo2‍ - It sounds like your situation has been difficult. I can only imagine how exhausting it is to feel you need to “fix” your husband while you care for your own health. As mentioned I would also agree that professional help is best with relationship issues. I found some good articles that your husband may be willing to read if he does not feel like talking to someone about this. I hope that however things work out in your marriage that you will be able to live your life in a way that brings you the most peace and satisfaction. Thanks for bringing up this topic that affects all marriages. 

Virtual hugs for you.

When your spouse has cancer

When cancer affects your marriage

Spouse coping

Webinars for caregivers- free

Re: Supporters’ Fatigue

Posted by Laika57 on Nov 11, 2020 9:32 pm

Hi Ginbo2‍ 
I've not been a caregiver for as long as your husband,  and my journey has been quite different. So, mine is a bit of a different perspective. Not that of the patient, but also not quite what your husband has been through....
There definitely is fatigue. And moments when you want to jump up and down and scream "what about me? My needs?".
it's barely been a year for me and i am exhausted.
and I'm stuck between making funeral plans and hoping for and dreading recovery... (definitely a different journey - my hubby got cancer and dementia in one fell swoop, on top of an apparent personality disorder).

So, yeah, i think your hubby should find a way to talk this out. It's more than a person alone can handle.

but, also consider yourself, you've had a life altering experience and obviously spent years looking into yourself and working out your own reaction.
you very likely are not the same person anymore.
that can be another difficult thing to digest... maybe you have grown in different directions and he is sticking around because he is feeling obligated...
Again, just another theory. Could also be the typical - hate to lose you slowly so push you away on his own terms thing...

i can't count how many times my husband has told me to leave him since his diagnosis... 

Anyhow, he needs to figure out just what he is feeling and then the two of you have to decide how to take it from there... if he refuses, then you have to decide how much the status quo is bothering you...
 
Have you hugged your dog today?

Re: Supporters’ Fatigue

Posted by Ginbo2 on Nov 12, 2020 6:51 am

Thank you Laika57‍ 
Im sorry you have so much to deal with and our situations are similar. I can imagine how hard it would be watch your partner fade away. I’ve done a lot of end of like planning while I can to ease that pain for him and my sister who will pick up most of the work. 
You do have needs and I’m sure you didn’t picture this as part of what marriage would be. I’m so sorry and hope there is some joy in your days. 
I’m told I am a better version of myself and how lucky is that? Except from my husbands perspective. He feels his life is over, I’m now complicated and it’s not fun.  He didn’t want to be a caregiver. He was good with the initial diagnosis but this is different. I am off work in LTD, getting the rest I need to face what is coming. He feels smothered and is provoking arguments. I try to fix and then back in the vicious circle. It is taxing in my health. I had to start taking Ativan to stay calm. So as I write this, it sounds terrible. After yesterday’s discussion, he is refusing counseling and my gut says instead of me enjoying my last years in our home. We will be selling and moving on. I’ll definitely try to encourage him to go but he is being stubborn. 

I hug my dogs every day. 
Thank you again

Re: Supporters’ Fatigue

Posted by Trillium on Nov 12, 2020 10:37 am

Ginbo2‍ - I’m sorry that your husband has refused counselling. You have lots of support to lean on and maybe it’s time that you prepare for the worst case scenario and how you want your life to be if you are to live without him. Focus on yourself and getting the support you need now from your support network and let him take care of himself. It is his job to figure himself out not yours. If it was me that’s what I would do. You have a psychologist to guide you through this so you are in good hands.

Laika57‍  -  Sorry to read that your husband has dementia now and you are dealing with end of life care? This must be so hard for you. I’m glad you have your dog for comfort and you found this site. 

Sincere hugs to you both
Judy

Re: Supporters’ Fatigue

Posted by Trillium on Nov 12, 2020 10:51 am

Ginbo2‍ - here are some articles about cancer and divorce. I hope you can find something helpful in them.
 

When a spouse has cancer

Cancer and divorce

Cancer divorce

Re: Supporters’ Fatigue

Posted by Essjay on Nov 12, 2020 11:58 am

Ginbo2‍ wow - what an @$$$! Your hubby is being! I’m so glad you felt able to share it with us, and please know we are here for you whatever happens with your relationship.

It’s tough when things change and the things you’ve planned aren’t going to work out. I’ve faced a bit of that with my hubby recently (not on your scale though)...We both have developed physical issues that limit us - for me it’s a back issue and a shoulder problem neither of which are going to repair, and for him it’s a foot issue, back issue and shoulder issue which he’s had treatment for but they are as good as they are going to get. These things limit us in the gardening, renovation work, in things like plowing snow, in the sport of canoeing which we have both enjoyed for 26 years together, and hiking. This year when I developed a shoulder problem and I got the diagnosis and prognosis we sat down and talked about stuff. If was an emotional conversation where we shared our frustrations with our own bodies and each other’s, our frustrations about how we can’t do everything we want, and COVID of course, plus our aging dog who we have noticed is slowing down, getting a bit creaky and can’t do so much as before. We’d both hoped that post my cancer treatment we’d get back to ‘normal’, but we have a new normal now. Once we got it all out on the table though, we were able to face up to stuff with a new attitude of ‘what can we still do’, ‘how do we manage this’, and we resolved to make the most of the good days, and not be angry at each other if we had plans but for some reason we just ‘can’t do it today’. 

Reading between the lines I wondered if while you are focusing on living your best life, he’s thinking about the bad stuff you might have to face. And maybe that’s what you need help talking about, so that then he can think about the good things you do every day together and the good things in life which are often the small things not the big adventures.

Sorry, to have no answers, just support and virtual {hugs}. Essjay xx

 
Triple Negative Breast Cancer survivor since July 2018

Re: Supporters’ Fatigue

Posted by Laika57 on Nov 12, 2020 5:06 pm

Ginbo2‍ I'm sorry to hear your husband isn't up to counseling.
i was opposed too, at first. "What, you want me to learn to be a better door mat?" Yeah. It's difficult to understand just what counseling is about when you're in that angered stare of mind.

One thing that has helped me was watching some of the webinars of the ontario caregiver organisation. 
and there's also the bounce back program. Though i only lasted through a couple of the lessons. The most important thing, that also got mentioned in the webinar, was to learn to deal with what is actually happening and not our interpretation of events.

Maybe point your hubby to those resources.

though, if he just wants out. Maybe accepting that will be the gentler route to take.

heck, sell the house, buy an RV and go on a road trip 😜
Have you hugged your dog today?

Re: Supporters’ Fatigue

Posted by Whitelilies on Nov 12, 2020 5:12 pm

Ginbo2‍ Hello and welcome to our caring site....we are listening and supporting and more......sorry for the reason........
In my journey (I hope this sharing, helps in a small way......) I learned quickly, that "telling someone" you have cancer DOES NOT equate to support.  Period.
Knowing and doing, are not equal.
A spouse......has a different twist.....they "suddenly" re-visit the old saying "What about me?" (In fear, most likely)
Not all males are capable of empathy, nor sympathy, nor emotional/physical support, just when YOU need it most.
I truly hope the Counsellor can help and offer solid ideas that you can work on.
You cannot change another person.
You can only change yourself.
I am sending you positive vibes right now !!
Catch them quick!

Warmly
Whitelilies

Lillian

ps...when I came home from surgery (#1)......that very first evening.....dear "Mr." went on out......he said "You'll be asleep anyways dear at 7pm!".... I said " Bye, generally pain killing drugs do that to a person!"..........I carried on......and had a great snoring session! 

Make Lemonade! 

Re: Supporters’ Fatigue

Posted by Ginbo2 on Nov 12, 2020 9:55 pm

Ok Ladies, Whitelilies‍, Essjay‍, Laika57‍ here’s an update. We had several discussions over the last few days and after a lot of frustration, tears, panic attacks I realize I have been giving too much support for him when he needs to step up. I have my sister and a good friend who agreed with all of you. Again ladies, thank you so much for telling me your experiences. 

So now, I will see if he makes the call. If he doesn’t and the pattern continues. Then yes. I will have to move on. 

I hoped he would learn what this role is and it’s not a one night a month job.

I have suggested he think long and hard about whether he wants to stay. It won’t always be fun. I’m managing the meds really well. I’m very active during the day so I can do things. I do not want to go out to the bars to have a few drinks. So yes, our lives had a dramatic change but I was tiring of that lifestyle anyway. I am trying to come up with activities we both can do that support my limitations. I’ll keep you posted!

Re: Supporters’ Fatigue

Posted by Whitelilies on Nov 12, 2020 10:19 pm

Ginbo2‍ hi.   What if HE got an illness?
what if he galavants around? What if another gets the same diagnosis?
he is up the creek..  .alone!

let him stew.

you do self care. 

we are here for support.

Lillian 

Re: Supporters’ Fatigue

Posted by MCoaster on Nov 12, 2020 11:30 pm

Ginbo2‍   I am sorry that you are having to deal with both the physical and emotional impacts which cancer so freely brings.   You have a lot of thoughtful,  heartfelt support here and I can add little other than to say that COVID might be something to take into account.   My husband and I are both in our 70s and while neither of us is immune compromised we are aware that what one of us does outside the home may bring the virus into both our lives.    I suppose that it all get downs to mutual respect and caring as does most of a good marriage ........!

Lots of thoughtful virtual hugs while you follow your instincts and heart.

MCoaster

Re: Supporters’ Fatigue

Posted by Cynthia Mac on Nov 13, 2020 8:34 pm

Ginbo2‍ , I am so sorry you’re having to go through relationship issues when you most need that person to be by your side.    

I’ve read this entire thread, and commend Whitelilies‍ for pointing out what his future could look like. MCoaster‍ noted the potential dangers to you if he continues to live your former social life during this pandemic. 

I was a caregiver for my father for 3 years. I didn’t ask to become a caregiver 18 months into my retirement: he made it known that he wanted ME to be at his appointments and to be that support to him. Now, I get that your husband doesn’t have “birthright” to include in his caregiving “obligations” like I did, but I have to wonder, if it were one of your kids in this position, would he be just as inclined to check out? Again, the answer to that question is going to be a reflection on his character.

NObody WANTS to be a caregiver. We do it because we love the person who needs the care and we want to see them through their situation, start to finish, no matter how it goes, good or bad. I’m kind of sure that’s how “in sickness and in health” has outlasted “honour and obey.”

As I’ve read your posts, particularly the one in which you said, “it sounds terrible,” I’ve thought throughout that I don’t think that “sounds terrible” has anything to do with how YOU sound. It’s about how terrible HIS behaviour sounds. For the record, “I feel smothered” “you’re complicated” and his other excuses (and they are excuses) are not only very revealing of his character, but they are also things I’ve heard from my ex and one other man who just wanted to bail on our relationships. The one that still sticks in my mind, 25 1/2 years later is, “I don’t want to be here.”

You’ve written a lot about what HE wants and doesn’t want from the next 3-5 years of HIS life. I would dearly love to hear about what YOU want the next 3-5 years of YOUR life to be like.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Supporters’ Fatigue

Posted by Whitelilies on Nov 13, 2020 9:08 pm

Ginbo2‍ Hello
I too, wish to know.....what do YOU wish for yourself.....in the next 3-5 years....????
Your dreams? Your joys?
I agree, to "his" excuses.....you are NOT complicated.....you are a patient, dealing with Cancer.
Period.
Life is not about restaurants, alcohol, wine, outings, fun,  etc......it is about emotions, feelings, connecting, being loved, sharing, giving....
I too dont have a "great" world here at home.....but just make the best lemonade ever!

If "Mr" feels fear....he should tell you....There is no need to keep up with the Jones'

We are here for you....

Hugs
Whitelilies

Lillian

Re: Supporters’ Fatigue

Posted by Ginbo2 on Nov 13, 2020 11:53 pm

Whitelilies‍, Cynthia Mac‍ - you guys are good. Making me think! I’m liking this. 
I made a bucket list in 2016 during Chemo.  In week 1 of the treatments , I was sure I was going to die. It triggered vertigo, i couldn’t get out of bed so I made a short bucket list: visit Tuscany, See Michael McIntyre (comedian), Attend. Grey Cup, see Bruno Mars and meet John Gruden. I saw the comedian with my sister Diana and my husband WJ we went to The Grey Cup in Ottawa. All achievable (besides the John Gruden- we are sports fans). I am very fortunate to have already traveled the world. I lived in China, traveled to England, France, Austria, Vegas. But in 2017, I’m back to work full time and fell back into that lifestyle again and put them on hold and if we are able to travel again. I want to see an iceberg in Newfoundland and to drive across Canada. If it’s safe, Tuscany would be Where I would go with my sister.

When I was rediagnosed and Covid hit. I had to rethink. I ended up going in LTD and now I feel life is so simple and very in the moment. I love my two retired greyhounds, doing home Reno’s, I appreciate going to the park with my nephew. I am tasked with picking up my niece from school. I spend time with them. Be present to offer advice and support my Siblings. I am happy every day when I have a plan. Most days do not include WJ. 

so what do I really want? To wake up next to WJ and him say “ let’s go in a hike”’or lunch in a park. Something simple and together. Let’s rent a cabin and play cards, watch movies and read books. Spend TIME with me. 
I am able to do stuff but I don’t know for how long. It could be 2 years or 10! (I know 10 is very optimistic but I can hope) if it’s 2 years then I need to get these things done now! I will travel the Atlantic Bubble until it is safe to go outside. 

I understand no one plans to be care givers at 50 but yes. It’s what you do when you enter into a relationship “sickness and in health”!  I think he just dropped the ball or maybe you ladies can come here and kick him into gear. 

are there any support groups for men with wives with MBC? 
I agree. I am worried when he goes to bars and the risks associated with the potential exposure. 

Thank you all so much for your support. 
 

Re: Supporters’ Fatigue

Posted by Cynthia Mac on Nov 14, 2020 5:05 am

Okay, I can’t speak for others who have posted here, but yes, I actually WOULD like the chance to “kick him into gear” EVEN THOUGH I “get” that he is “doing the best he can” within his own abilities (as we all are). Unless, as you observe, he’s just choosing to “drop the ball.” You know him better than I do! 😉

I’m going to assume that you have told your husband these things you want from the next two years, about these simple plans like a hike in a park or renting a cabin, and that these don’t appeal to him? (In an earlier post you made a comment that he’s viewing such things as “no fun.” Again, I can’t help but wonder if he really thought about who he was saying that to before he said it.) So, if he goes off in search of “fun,” can you create a plan for someone else who can see you through such things? (You mention a nephew and a niece — can I also assume that you, like me, don’t have children?)

Again, you’ve pointed out that what you want from life are the “simple” things, yet his perspective is that “you’re complicated.” That’s an important distinction.

And, now, to stray totally off topic, I LOVE Michael McIntyre. He’s brilliant and witty.

I’m really glad you’ve got to see the world. I’ve been blessed to see such things as the Colorado Rocky Mountains, the Sydney Opera House, that iceberg you mentioned in NL, Uluru in Australia, Milford Sound and Maori cultural sites in NZ, Mendenhal glacier in AK, my ancestral home areas in Scotland, and Cornwall, England. I’ve found that those memories are all the more dear since the pandemic struck our world.

Back on topic, it’s good that you can see that our purpose here isn’t to guide you or tell you what to do; that it’s to help you think this through, so, if you’re thinking, we’re doing our “job.”

I’m not aware of a support group for men who are dealing with spouses who have MBC, but that would be a GREAT question to ask your local cancer centre.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Supporters’ Fatigue

Posted by Ginbo2 on Nov 14, 2020 9:34 am

Cynthia Mac‍ 
i feel the same about cherishing my travel experiences having climbed the Great Wall of China, Clocktower in Austria and the other places like seeing a football game in New York so if I have to make a new bucket list because Bruno Mars is no longer touring then that’s what I’ll do. 

I have talked about touring The Atlantic Bubble. We had a dome booked the last weekend in March but that was canceled. I’ll see if I can get in and if he doesn’t want to go? Yes, I have loads of friends who would jump at the opportunity to travel with me. 

Good question on “who he thought he was talking to”. I think he would say the old me so that tells me he doesn’t see the opportunity in front of him. 

I think there is a support group and he has all of those contacts to reach out. 

Again, you’ve given me more to think about. Funny how my brain is so slow to come around. I will do some research, and plan the fun activities for the winter months. 

you girls rock. 

Re: Supporters’ Fatigue

Posted by Cynthia Mac on Nov 14, 2020 11:33 am

Ah, Ginbo2‍ , be kind to yourself in the “brain power” department, especially if you’ve had any chemo treatments: they take their toll on your concentration, I’m told. 

And thanks for telling us we ‘rock.’ Speaking for myself, I haven’t felt a lot like I do, lately, so it’s good to have that feedback!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Supporters’ Fatigue

Posted by Ginbo2 on Nov 14, 2020 10:04 pm

Cynthia Mac‍, I’m told by my family I don’t remember short term like I used to. 2016 was a blur. I thought 4 years later it would come back. 
Why are you feeling like you’re not rockin’ it?
GB