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Support for Spouses/Partners

Re: Support for Spouses/Partners

Posted by Brighty on Jul 19, 2018 3:34 pm

Elizabeth06‍  thank you for your response.   I guess I was making my assumption  based on my fiances experience and  i apologize.    He had zero quality of life but that is not the case in every situation  and I'm so glad it's not the case in yours.   I would like to hear from more people who DO have quality  of life while going through  treatment! !

Re: Support for Spouses/Partners

Posted by Wifey on Jul 26, 2018 11:34 am

Hi I have not been on for awhile. My husband has been battling NCSLC since we found out the end of October. He did his chemo and radiation and had a left upper lobe lobectomy in April. He seemed to be doing well but started having some issues with his hand perception which we thought was due to nerve damage from the surgery. We found out the end of May that he had a single metastasis to the brain. He had neurosurgery the end of June and we have found out there is still a small spot left which they hope radiation will take care of which he starts friday. However he is have arm weakness and some weakness with his walking which he did not have after the neurosurgery.  I am finding it hard to continue to have hope and it is so hard seeing him go through this.  I know statistically his prognosis is not great but we were so hopeful.

Re: Support for Spouses/Partners

Posted by Elsie13 on Jul 27, 2018 5:17 pm

Wifey‍ Sorry to here that your husband needed neurosurgey.  I don't have any medical training, but that sounds kind of scary. Anyway, considering that the surgery was at the end of June, and healing takes time, maybe things will improve. Did they say how many radiation treatments he would have? 

Let us know how how things are going. 

Re: Support for Spouses/Partners

Posted by Aly on Jul 28, 2018 3:16 pm

Wifey, I can only imaging what you are going through right now. It’s hard not to lose faith watching a loved one battle such a difficult disease. Where about a are you located? Depending on where you are there is always The Wellspring program you can look into to get some reprieve and just talk to someone (both of you) that understands what is going on. Do you have extra help for caregiving? Unfortunately I am not a doctor and am unable to give you any advice on whether the weakness would be deemed part of the recovery process. I would definitely recommend getting in touch with yours to find this out.

Re: Support for Spouses/Partners

Posted by Wifey on Jul 30, 2018 1:31 pm

The radiation doctor hopes it is just inflammation and has started him on steroids. Each doctor has a different opinion about causes so we just have to wait and see. Hopefully the steroids help.  We are in southwestern ontario.  There are programs we can access for assistance when needed. Right now he just wants me which I can handle.  The ups and downs are definitely taking their toll.  Each down is hard to witness and harder to climb up from.

Re: Support for Spouses/Partners

Posted by Aly on Jul 30, 2018 2:32 pm

Wifey‍ , I hope that the steroids lend some relief!

There are many wellspring communities in Ontario it seems (https://wellspring.ca/locations/), I found them very helpful during my stint as caregiver and also after. There are classes and groups for both patients and caregivers alike. Don't be afraid to ask for help from friends and family also, when possible, trying to do everything yourself is draining emotionally and physically. Make sure to make time for yourself when possible too.

Re: Support for Spouses/Partners

Posted by Lacey_adminCCS on Sep 28, 2018 4:25 pm

Wifey‍ 

How are things going have the steroids helped?

and...how are you?

Thinking of you,
Lacey

 

Re: Support for Spouses/Partners

Posted by changes on Apr 15, 2019 7:37 am

Hi everyone.

I haven't posted in awhile as I've been consumed with the journey.  I wanted to reach out today to seek insight on an area that I've been struggling with recently.  I'm hopeful Spouses and Partners are able to share some of their experiences and suggestions on this topic.

Quick background: My wife has stage 3/4 (her and I decided there's no point getting a thorough scan to see where the cancer has exactly spread as it only causes more anxiety and stress. She has cancer and it's not contained to 1 organ anymore.) cervical cancer and has chosen not to do conventional treatment. This has taken her to Germany and India for treatments and in between the research and self-analysis has overtaken her attention.  We have two young kids.

What I have noticed over the past 6 months to a year (can't pint point exactly), our conversations have deteriorated to topic only if it is about her treatments, condition, diet, etc. ANYTHING unrelated to that is met with blank stares or comments like "you still think that's important?". I can understand. When faced with mortality, who cares about a crazy story from work or the latest sports scores.  But what about me? Who do I talk to?  Yes - some can be fulfilled by friends, coworkers, peers, but there used to be topics/comments that I shared with her, that seemed only appropriate for a spouse/partner - where can these conversations be redirected to?

Another area that has drastically changed is the parenting responsibilities. I can understand she wants to leave a positive impression on the kids, but that leaves me to be the "bad cop". Also, dealing with the day-to-day responsibilities of ushering them to and from their daily activities falls on me. It's tiring. She's physically not as capable anymore and the fact that she's using this time to research or heal makes it really challenging for me to handle. Part of me feels so guilty for being frustrated with how she's spending her time (instead of helping) but the other part's energy is draining way too fast.  I've brought up the "bad cop" concern and that has been somewhat addressed, but the other part - well, she made the comment (which is valid): "when I'm gone, it's only going to be you".

Any thoughts/insight/advice?  Thanks in advance.

Re: Support for Spouses/Partners

Posted by Cynthia Mac on Apr 16, 2019 8:29 am

“When I’m gone, it’s only going to be you.” Hmm. But, she’s still there. Helping with those tasks offers her time to make memories with the kids. Does she really want you to start living your life as if she’s no longer in it?  

While her comment could simply be a sign of depression, or even resignation, the fact of the matter is, you are parents, and partners in raising your children as long as you are together. And, you have stepped up to take on the additional parenting duties while caring for her.

I can see that you understand how her focus would be on her health, but to shut out any other form of conversation or activity indicates that she may be feeling that you don’t deserve a life, either, which is patently not fair. It almost sounds as though she has an underlying anger (a normal emotion in her situation) that is being aimed at you. 

Of course you can come here and vent, as you have, but it might be time for you to do a little self-care and look up some counselling through your local cancer centre. They will be able to assure you that feeling guilty for feeling frustrated is normal, and they may offer you some strategies for conversing with your wife.

 

Re: Support for Spouses/Partners

Posted by Essjay on Apr 16, 2019 12:06 pm

changes‍ I echo Cynthia Mac‍ Suggestion about counselling for you. Having someone to talk to about your concerns, may help you work out a way to deal with it, or just give you a venting outlet. And for normal conversation, if you can’t have that with your partner just now, I encourage you to see friends - invite them round if you don’t want to leave your wife, or make plans to go do something.

Through my cancer journey I have encouraged my partner to get away with his friends from time to time. Camping and hiking are his stress reducing outlets and he’s got out every few weeks. This has helped me not to feel I am a burden, and then I can ask him how his trip went which gives us something other than cancer to talk about...

Re: Support for Spouses/Partners

Posted by Sharon F on Apr 16, 2019 9:42 pm

I have been reading a lot and learning a lot from my peers on here. Marty had no symptoms when he was diagnosed, he was given a prognosis of no treatment( 3- 12 months). I am thinking now, Living this way, isn't living. The last 9 months have been hell. Things don't look promising because more stuff keeps happening. Wondering if we made the right choice. I guess time will tell. Onward ho!

Re: Support for Spouses/Partners

Posted by Winterkill on Apr 17, 2019 1:42 am

My husband is suffering from depression and anxiety since his diagnosis that much I know. When he asked the oncologist how long he had and she told him six months it was like he just jumped forward to those six months. I wished he wouldn’t have asked.

Re: Support for Spouses/Partners

Posted by changes on Apr 17, 2019 7:59 am

Winterkill‍ how is your relationship with your husband? does it feel like you're walking on egg-shells?

Cynthia MacEssjay‍ I have been attending a support group and seeing a social worker. I am getting support, but it still doesn't make our day-to-day situation any better. I asked the same question to my support group and a few other husbands shared they've also seen the same types of changes in their relationships.  It makes each day that little bit more difficult because I don't have the same outlets as before. Obviously I have to find new outlets, but who else am I going to send silly photos of my 3 year old son running around naked after the bath? 

I can make changes in myself, but I cannot enforce changes on her - especially with her condition. She always holds the trump card.

Given the latest prognosis, my wife has been seeking alternative treatment options since conventional options don't give a very high chance of survival for the discomfort they cause. Some of them really test my faith and scientific logic. I told her that I have some skepticism, but I do believe they're worth trying. She flipped out at me saying this is the problem between us: because I don't believe (blind faith), then there won't be results. It's a placebo effect.  I understand her point (santa claus doesn't exist unless you believe he exists), but am I to lie or be honest?  Anyway, I believe part of her lashing out is her fear of time running out. She needs to be in an environment and among people who BELIEVE.  This is where I believe Cancer has changed our relationship. I believe I have evolved spiritually, but no where to the level she has, and she now sees that gap like "we've grown apart".

This multiplies my stress as I'm facing losing my wife and losing my relationship and it's possible the relationship will fall first.  

Re: Support for Spouses/Partners

Posted by ACH2015 on Apr 17, 2019 8:45 am

changes‍ 

You seem to be coming to grips with the reality of the situation. Your wife is still clinging to hope and appears to be in denial.

My friend that died recently had the same cancer as me. She was positive, and believed and fought through all of the side effects of chemo, multiple surgeries, radiation and immunotherapy. For well over two years.

These conventional treatments bought her time, and were instituted in the belief to have controlling and curative effects on the cancer. I went through similar treatments, suffered a recurrence, had more treatments and I am still here, but she died.

Deb "never had time for cancer" and pushed through many effects that would have knocked me for a loop.When the news of no further treatments came, she realized the end was near, had trusted in the conventional treatments that bought her all that time, and in the end, accepted that all that could be done had been attempted. Her acceptance came from many sources, and like any other is a process that we all move through, move forward and come to a conclusion about. What state of mind do you think I was in, being told that I had "3 to 6 months to live - no curative treatments available or worth doing". We fired that oncologist almost 3 years ago, and I'm still here. Why?,because of faith, because of support, endurance, and enduring the treatments recommended and put into effect to control and kill my cancer.

I don't know you or your wife personally, but the insistence of her blind faith and stating "if you don't believe it won't work" lends me to think her mental health has deteriorated severely given her circumstances.

There is a fine line between believing in the power of faith, and accepting the reality of a situation, the path you have taken, and the results you are left with.

What if any level of counseling has your wife had? You have said she has shunned conventional treatments throughout her cancer diagnosis, but what about helping her to understand her situation, the reality of it, and trying to help her work through what is? It's not too late to help all concerned work through the impasse here.

The stress you, your wife and children are under right now is unmeasurable. Maximizing your lives and quality of time together as a family is a very beneficial goal for all concerned to strive for.

ACH2015 - Andy.







 

Re: Support for Spouses/Partners

Posted by Cynthia Mac on Apr 17, 2019 9:12 am

changes‍ And Winterkill‍ and Sharon F‍ : my heart goes out to all of you. Caregiving is trying to find balance in a relationship where the balance has been completely upset. It doesn’t matter if that relationship is husband-wife or mother-daughter.

It’s so hard to watch a loved one make a “my body, my choice” decision when in our own heart, we believe that if it was “our body,” we would choose differently.

As you’ve shared, there are the added responsibilities in every day you’re giving care. And, shifting views brought on by the disease and its progression. As Changes points out, being diplomatic can cross the boundary of staying true to yourself. (I’m glad that you are working with people to help you through this, Changes.)

My caregiving situation has not reached the point of any of yours. It appears as though you are doing everything you can to help your loved one through their journey and I wish there was more I could do to help each of you. Caregiving is the work of angels.

Re: Support for Spouses/Partners

Posted by Lacey_adminCCS on Apr 17, 2019 10:34 am

changes‍ 

I'm so glad that when you needed to "talk" you thought of us here. I have followed your story from the beginning and have often wondered how things are going. This is a safe place for you to vent and share your feelings.It's okay to feel all the emotions your feeling because your wife's diagnosis has very much impacted you. It's okay to want to have conversations that don't include cancer and to want someone to share those silly pictures with. It's okay to want that connection with your spouse instead of a friend, social worker, peer etc.

I witnessed my parent's relationship change when my Dad was diagnosed with cancer. When he found out he had 6 weeks to live another change happened. They both had different ideas and goals for those last 6 weeks. My Dad's included organizing his garage, personal documents, and spending time with friends and family. My Mom hoped to spend more time together as a couple sharing memories, making new memories, and talking about their feelings. My Dad just didn't have the energy or wasn't in the right place. He told us he had accepted his prognosis but I suspect he still felt some anger and guilt about leaving us all behind. His response to my Mom expressing she wanted to spend those last weeks making memories was that they had already spent he last 35+ years together making memories. I guess I tell this story because we all have different needs and capacities especially when faced with a difficult prognosis. My Mom wasn't wrong for wanting more and my Dad wasn't wrong for not being able to give more. They both were struggling and trying to find their way.

I'm so glad you are talking to people and getting support. I wonder if MalcolmS‍ has any suggestions for you on coping through this difficult time.

Has your wife been talking to anyone? Would you consider meeting with someone together?

We're always here to listen,
Lacey

Re: Support for Spouses/Partners

Posted by Lacey_adminCCS on Apr 17, 2019 10:40 am

Sharon F‍ and Winterkill‍ 

Thank you both for sharing, I hope it helps to know you are not alone.

Have you read our booklet Advanced Cancer? In the booklet topics like practical tips, choosing treatment, staying connected, and looking for meaning are covered. There is also a section for caregivers specifically. 

The Canadian Virtual Hospice also has a lot of helpful information like: emotional health, communication, and providing care.

I hope you find this information helpful, please keep sharing we are listening and sending virtual hugs.

Lacey

Re: Support for Spouses/Partners

Posted by changes on Apr 22, 2019 10:54 am

ACH2015:
changes‍ 

You seem to be coming to grips with the reality of the situation. Your wife is still clinging to hope and appears to be in denial.

My friend that died recently had the same cancer as me. She was positive, and believed and fought through all of the side effects of chemo, multiple surgeries, radiation and immunotherapy. For well over two years.

These conventional treatments bought her time, and were instituted in the belief to have controlling and curative effects on the cancer. I went through similar treatments, suffered a recurrence, had more treatments and I am still here, but she died.

Deb "never had time for cancer" and pushed through many effects that would have knocked me for a loop.When the news of no further treatments came, she realized the end was near, had trusted in the conventional treatments that bought her all that time, and in the end, accepted that all that could be done had been attempted. Her acceptance came from many sources, and like any other is a process that we all move through, move forward and come to a conclusion about. What state of mind do you think I was in, being told that I had "3 to 6 months to live - no curative treatments available or worth doing". We fired that oncologist almost 3 years ago, and I'm still here. Why?,because of faith, because of support, endurance, and enduring the treatments recommended and put into effect to control and kill my cancer.

I don't know you or your wife personally, but the insistence of her blind faith and stating "if you don't believe it won't work" lends me to think her mental health has deteriorated severely given her circumstances.

There is a fine line between believing in the power of faith, and accepting the reality of a situation, the path you have taken, and the results you are left with.

What if any level of counseling has your wife had? You have said she has shunned conventional treatments throughout her cancer diagnosis, but what about helping her to understand her situation, the reality of it, and trying to help her work through what is? It's not too late to help all concerned work through the impasse here.

The stress you, your wife and children are under right now is unmeasurable. Maximizing your lives and quality of time together as a family is a very beneficial goal for all concerned to strive for.

ACH2015 - Andy.







 




Thank you for your response ACH2015‍ ! 

I'm curious to hear more of your thoughts regarding your assessment of her mental state. Like you said, there's a fine line between faith and realism. She understands (and continually reminds me) that her time is limited and that she's in a non-curative state. Because of that, I don't question her grasp of the situation, but she continues to challenge my faith and belief in a manner that I feel causes stress in our relationship.

I would like to suggest she gets consistent counseling. She is speaks to different therapists but it's off and on and she jumps around a lot. She doesn't seem to stick with anyone that doesn't align with her approach. I'm saying she's surrounding herself with "yes" people, but I don't believe she's getting the right type of support for her mental state. I can appreciate she's under enormous stress planning out her treatment and instead of seeing me as a support pillar (in whatever capacity that I can provide), she's pushing me away as a detriment to her recovery.

 

Re: Support for Spouses/Partners

Posted by changes on Apr 22, 2019 10:59 am

Lacey_adminCCS:
changes‍ 

I'm so glad that when you needed to "talk" you thought of us here. I have followed your story from the beginning and have often wondered how things are going. This is a safe place for you to vent and share your feelings.It's okay to feel all the emotions your feeling because your wife's diagnosis has very much impacted you. It's okay to want to have conversations that don't include cancer and to want someone to share those silly pictures with. It's okay to want that connection with your spouse instead of a friend, social worker, peer etc.

I witnessed my parent's relationship change when my Dad was diagnosed with cancer. When he found out he had 6 weeks to live another change happened. They both had different ideas and goals for those last 6 weeks. My Dad's included organizing his garage, personal documents, and spending time with friends and family. My Mom hoped to spend more time together as a couple sharing memories, making new memories, and talking about their feelings. My Dad just didn't have the energy or wasn't in the right place. He told us he had accepted his prognosis but I suspect he still felt some anger and guilt about leaving us all behind. His response to my Mom expressing she wanted to spend those last weeks making memories was that they had already spent he last 35+ years together making memories. I guess I tell this story because we all have different needs and capacities especially when faced with a difficult prognosis. My Mom wasn't wrong for wanting more and my Dad wasn't wrong for not being able to give more. They both were struggling and trying to find their way.

I'm so glad you are talking to people and getting support. I wonder if MalcolmS‍ has any suggestions for you on coping through this difficult time.

Has your wife been talking to anyone? Would you consider meeting with someone together?

We're always here to listen,
Lacey

Thank you for sharing your experience with your parents. There are definitely those elements lurking in our relationship. 

I would definitely be open to meeting with someone together. We tried that last summer (she initiated) but it didn't lead to anything. I'm actively looking for someone that has specialty with couples/family support, cancer and an appreciation for alternative treatments of cancer (ie. the mental toll it can take on a person).  If anyone has any experience with someone they recommend, please share!

Re: Support for Spouses/Partners

Posted by ACH2015 on Apr 22, 2019 3:02 pm

Hi changes‍ 

From what you said in your post, your wife sounds like she is of the belief that her condition is not (or no longer) curable. On the other hand, you state that she continues to fill her time planing out further treatments. So I'm kind of confused here. But really, I think I understand the conflict.

I suppose that there is common ground in what I am about to say next. My friend was being taken from her hospital room for another scan. She already knew there were no further treatments for her, and she would be remaining in hospital. So, my wife and I were there and had been visiting for the afternoon. We decided to leave and I gave Deb a hug and kiss and said I'd be back in a couple of days. She said "OK have a safe trip, and you can come and see me at home". Now we all knew, Deb included, that she was not going to be returning back home. In hindsight, it must be the mind's way of dealing with the inevitable. Denial, mixed with faint hope and the desire to keep on living. Perhaps this is a parallel to your wife's current state of mind.

I have taken part in mental health therapy for quite some time. I have had the same therapist during the majority of treatment. I changed therapists only due to moving a great distance. Inconsistent therapy, especially if your wife knows she's playing that game (like you said, surrounding herself with "yes" people), truly renders progress redundant. I have had to face many truths, and make tough decisions and changes to my life. But that is the benefit of being challenged and truly wanting to move forward. I'm not judging anyone here, just making a statement on what I believe.

Anyone that is facing life threatening situations, and death certainly would benefit from constant and more importantly consistent 1 on 1 therapy with a person trained in that area of mental health. I am not a doctor, and certainly at this point, it doesn't matter what path your wife took in treatments. What matters is that she receives good mental health therapy to help her understand her situation and deal with the reality as best she can. For her sake, and you and your children.

I am curious about what your wife was told by the alternative therapy providers as to why her treatments failed, and what next steps there were to take. With my oncologists, I was told the immunotherapy treatments (during my recurrence) failed because the targeted therapy was not close enough a match to the cancer it was supposed to kill. My cancer tumor was tested and did contain the genetic matches and protein the immunotherapy drugs were designed to kill. During Round I,  my chemotherapy was not meant to be curative, only to stop progression, and shrink the tumor to get me to surgery. Then radiation was meant to clean up any left over cells. So my conventional therapies were well explained, their purposes, and the expected outcomes.

I am not dying, and I am not going to pretend to know where your mind goes when a person is told this. But this enormous strain your wife is under while bouncing from saying "I'm not curative" all while planning her next treatment needs to be assessed and addressed with someone that can get the complete story from her - from the beginning so that her and your therapy can move in the right direction.

I sincerely hope you and your wife can find some mental peace sooner than later. Good therapists can help people understand what their situation is, come to accept it and help them move through the process at hand.

Keep well

ACH2015 - Andy.