Log in or Register to participate in these discussions

In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Rlh178 on Dec 10, 2019 12:15 am

My love of my life, my husband is battling stage 4 esophageal cancer.  I work part time and go to every appointment if I am able to!  I refuse to let my husband fight this alone.  It is OUR fight.  We are a team and we are a force that refuses to give up!  

At times I am living a very lonely life, few people are willing to reach out to me, to just sit and talk, to laugh and just listen when I cry... my husband has always been that person and that role... who do I go to now?  People dont seem to have time for me... they dont want to drown in my sadness... heck, I dont want to drown in it either!!!

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by WestCoastSailor on Dec 10, 2019 1:16 am

Rlh178‍ 

Then don't say goodbye.

My wife died a year ago. She had six weeks from diagnosis to death of pancreatic cancer. I didn't want to let her go either. And to top it all off I too am living with Stage 4 lung cancer.

Together we found ways to make memories in those last days, a drive to the beach to watch the sailboats, a painful trip to the grocery store to buy something she could actually eat, a mandala that we coloured together, celebrating our twelfth wedding anniversary three days before she died, bringing dogs into hospice cause she loved them even though hers was gone, listening to her playlist of favourite jazz tunes.

Have the hard conversations. You know where this is going to end up. But then enjoy and celebrate every moment of every day. Somewhere there is a balance between realistic and hopeful. In some other place on this vast site I quoted Emily Dickinson "Hope is a many feathered thing." Probably find it if you use the search function.

I came across a little story that brought me great comfort the other day as I spent the anniversary of my wife's death thinking about her and her legacy.
 
"What would you say to a close friend who is about to die?" Jiddu Krishnamurti asked a small group of listeners. Their answers dealt with assurances, words about beginnings and endings, and various gestures of compassion. Krishnamurti stopped them  short. "There is only one thing that you can say to give the deepest comfort," he said. "Tell them that in his death a part of you dies and goes with him. Wherever he goes, you go also; he will not be alone."

The funny thing was that I realized that I'm not alone either. In some strange way my memories of my wife keep her alive.

Thank you for coming and sharing your honest emotions. There will be others that chime in here and you will feel heard. I would encourage you though to find and speak to others in real life. Create a support group for yourself whether that is family or friends.

Angus
My story: http://journey.anguspratt.ca

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Aries on Dec 10, 2019 3:32 am

Rlh178‍ - reach out to us any time - we are all here for you and understand how you feel.

WestCoastSailor‍ - such a lovely post, I couldn't think of what else to add as I think your beautiful words accomplished the exact message that was needed. I love the quote you noted by Krishnamurti. I am going to quote that to the letter I am going to write to my hubby for when I am gone one day.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Cynthia Mac on Dec 10, 2019 8:07 am

Rlh178‍ , Aries‍ Is right: WestCoastSailor‍ Said it best. Yesterday, I attended the celebration of life for a dear friend’s son. He was just 41 years old, and it was cancer that took him. His widow gave a beautiful eulogy. I don’t know her well, but admired the courage she had to stand in front of all those family and friends, and speak about their relationship and all the things she was grateful for - even the things that happened in the last year of their lives together. Her heartfelt speech was a reminder to find gratitude in every day.

I’m caregiver for my Dad, who has metastatic lung cancer, and I appreciate your comments about how caregiving can be a lonely “job.” I’ve learned that sometimes the loneliness is because we don’t want to burden people with “our sadness,” but sometimes it’s because other people want us to have our privacy, and they’re quietly waiting in the wings for us to say, “Could you come over for a coffee,” or “I need to get out for an afternoon (or whatever timeframe is possible).” We advocate often here on Cancer Connection about the importance of self-care for caregivers. And taking a half hour out for a coffee, or making a “manicure date” with a girlfriend can go a long way to rejuvenate you to continue the fight. After all, employees get coffee breaks for a reason.

As always, I am sorry to hear about the reason that has brought you to the site. Welcome, and may you find solace here.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Rlh178 on Dec 10, 2019 9:02 pm

WestCoastSailor , Aries‍ , Cynthia Mac‍ thank you all for your kind words.  I find myself very frustrated and scared most of the time.  To be honest I have typed something and deleted it in fear of being judged, that my feelings are not necessarily important... it is really stressful trying to manage my composure and also dealing with my 2 adult children that live at home still.  I know they are hiding their feelings and experiences emotional outbursts by them.  Stress is something that makes my husband more sick and that makes me worry so much more! It's an ever revolving door! 

Thanks for listening.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Brighty on Dec 10, 2019 9:06 pm

Rlh178‍  type what ever you need to type here.   You will never be judged.   My fiancé had stage 4 Esophegeal cancer so I have some idea of what you are experiencing now.     
Help is out there. All you have to do is reach out.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by jorola on Dec 10, 2019 9:36 pm

Rlh178‍ all comments are welcome here, never fear. It is good to get things off your chest. Even the stuff we fear most to say. Your husband knows how much you love him and we call can see it too. Love like that knows no bounds. Makes memories like WestCoastSailor‍ says. I agree he said it best.
Live, Laugh, Love

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Cynthia Mac on Dec 10, 2019 11:31 pm

Rlh178‍ , this is a safe place to vent. Chances are, whatever is going through your mind has gone through one of ours at one point!

Your feelings are VERY important, and clearly your husband’s illness is not the only source of your stress.

Something that you might consider is contacting your local cancer centre. They can put you in touch with a social worker who can help you work with strategies to deal with some of your stressors. If your adult children are having trouble coping, they may be able to help them, too.

Do you have any activities you can do at home that you enjoy and would provide you some gratification? Sewing? Knitting? Even video games on your phone can give you a diversion that might take your mind off the stress, even for just a few moments.

Some of the things I do to combat stress are listening to audio books, including books about meditation, a weekly yoga class (which I’ve missed the last two weeks in a row - and it shows!), and my crafts. I’ve also learned that if I can work in a 20 minute walk, it really makes a difference in my sleep pattern, especially in the cold weather.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by CentralAB on Dec 11, 2019 1:18 pm

Rlh178:
My love of my life, my husband is battling stage 4 esophageal cancer.  I work part time and go to every appointment if I am able to!  I refuse to let my husband fight this alone.  It is OUR fight.  We are a team and we are a force that refuses to give up!  

At times I am living a very lonely life, few people are willing to reach out to me, to just sit and talk, to laugh and just listen when I cry... my husband has always been that person and that role... who do I go to now?  People dont seem to have time for me... they dont want to drown in my sadness... heck, I dont want to drown in it either!!!

 
Thank you so much for having the courage to share this with us here. I am pretty sure that no one here would ever judge you for what you say here, thats the purpose of this online community to give a voice to those of us who otherwise would have no voice. I could have written the exact same words about myself this last while.It is definitely a very real problem that caregivers face. The isolation can get very discouraging. One thought that ocurred to me the other day was that sometimes, although I often would like to have someone sit and talk with me, as you described here, I actually don't need, what I think I do. A caregiver came over the other day, and I had planned an outing to the forest. But I was so tired, I just couldnt go once she got here. Perhaps, with some of us, that isolation" is a cushion of sorts, to help us better deal with things, in our time, and our speed?. At least thats what I thought of for myself. I think most provinces have Social Workers who work out of or for the doctor's office. They are usually paid for by the public purse. I found for myself, that several times a year, just seeing someone like that really helps.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Brighty on Dec 11, 2019 2:18 pm

CentralAB‍ ... I'm actually  just pondering  what you said about isolaton as a sort of cushion.     That is an interesting way to look at it.    Never thought of it that way.... but much of the time lately it is myself doing the isolating.    For me it is a bit of a cushion like you said.   When I'm home by myself I can just kick back and  relax.. deal with things my way, in my time. . Not go by others schedules of when I should be doing this or doing that.     When I'm with others I do end up having a good time but there's also a pressure to always be ok, or put on a front that I'm ok when I'm not.... so when I isolate, it gets lonely  at times, but it is also somewhat easier than dealing with others expectations .       It's not good to always be isolated though.   We do need to be with others.  We need friends  and we need  support.     But we also need to feel ok with just being by ourselves.    We can never get away from ourselves so we have to feel comfortable  being in our own skin.      We can't always rely on others to beef us up at all times either.   People are busy.. or keep their distance..for whatever reason .     Although having great  support system  is one way of a coping while being a caregiver,  we also have to have a few different  strategies  under our belts...  if for whatever reason  you can't always count on others for support .       We need to come up with lots of different  strategies  in case one falls through.       There's  hobbies, exercise,   distractions..  and if anyone  can come with other coping strategies  please feel free to add what you did to cope.    
Help is out there. All you have to do is reach out.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by CentralAB on Dec 11, 2019 3:23 pm

I know what you mean...today is a good example, for me, of the real life of a caregiver. The caregiver that comes in once in a while to give me a break, backed out last minute, AGAIN - just 15 minutes notice. Thats really irritating, Ill try not to grumble too much. Its such a beautiful day for photography too and I was really looking forward to it.
I have an analogy about clouds that helps me. It occurred to me one time when I was out doing landscape photography There is light in every cloud. Sometimes, its actually above the clouds, and we cant see it when its there, but its always there. It helps me for times when I cant see it to look up and see the light in clouds when I am out with my camera. Sun, moon, stars, all kinds of things. I think its a good symbol of how we all receive/see light we need, in different ways. The "cushion" effect I was talking about is an idea that would apply to almost everyone, in different ways.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by LANDSCAPERNF on Dec 11, 2019 11:38 pm

it takes courage to type out your emotions and feelings and  hit send.... you sound very couragous and a great person.  i relate to your feelings as most do on these sites... i am  married to my wife of 22 years who is battling stage 4 MBC and i feel,like you, that this wasn't supposed to be how our story went.  Cancer is just a complete bomb with so much colateral damage.  I rely on  prayer, my church friends, Wellspring Cancer Support Groups,  family and friends.  but unless you are going thru this it is very difficult to explain the behind the scenes, dark of night, moments.  I hope you can find some support, maybe a counsellor or pastor, maybe someone on this site... you need support and encouragement or you will get deflated and drained.  Till death do us part celebrates your  commitment to each other and your relationship..  don't say goodbye... love never ends.
 

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Cynthia Mac on Dec 12, 2019 10:00 am

LANDSCAPERNF‍ , the phrase that jumped out of your post is “this wasn’t supposed to be how our story went.” It’s true, but have you ever noticed that this is the type of phrase that tends to happen only in times of hardship?  It’s rare to hear someone who just won a lottery say, “this wasn’t how things were supposed to turn out.”

One of the things I like about Buddhism is that there is no belief about other possibilities: it is simply, “this is how our story is.” 

Allowing ourselves to think of “supposed to bes” gives us room to think about the things we may (or may not) have missed out on and that, in turn, takes time away from addressing / dealing with the “story that is.”

I’m not affixed to any particular religion, partly due to my travels to various parts of the world, but I find it interesting that a lot of the sources I’ve found for coping with the stress of being a caregiver (meditation, yoga, etc.) stem from the Far East.

This post is merely intended to share the thoughts I had around the phrase in your post. Thanks for listening while I process.

I admire you and CentralAB‍ For having the devotion you have to your partners. 

 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Rlh178 on Dec 13, 2019 2:17 pm

I wont say goodbye... this I can do for sure.  This has been the only type of support that I can find.  My city has zero support groups outside of people going through BC.  Saskatoon seems to be really lacking.  Even getting support from social workers is very tough.  It is draining looking for emotional support... and I think that is what my whole family needs at a time like this.  I want to cry, I want to hide, i just want someone to hug me and tell me they are here for it all... no judgement. .. but it has been very difficult getting that.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Lacey_adminCCS on Dec 13, 2019 2:24 pm

Rlh178‍ 

I'm sorry you are having trouble finding support. 

It sounds like you have looked high and low. But I wanted to mention we have a Community Service Locator where you can search using your postal code for programs and services or you can call our Cancer Information Service and they can help you look. They are also great listeners you can reach them at 1-888-939-3333. I hope you call.

Take Care,
Lacey

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Aries on Dec 13, 2019 9:43 pm

Rlh178‍ sending you a virtual hug - not the same as the real thing I know, but I hope the thought of one helps a little 🤗

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Rlh178 on Dec 15, 2019 2:28 pm

Lacey_adminCCS‍ I reached out to all of those things and there are no support groups in my city.  I was told that support groups are shrinking quickly, which saddens me.  I could use a place to go when I have the energy... seeing a friendly face would be extremely helpful at this time of year.  I used to love socializing with Christmas parties, I have not been to one in several years... I'm always excluded for some reason or other and this year is no exception.  People had them through my work but i had to work.  I have had little social anything...  I just feel so unliked for so long.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Brighty on Dec 15, 2019 2:54 pm

Rlh178‍ you are liked very much  here.     Have you tried the hospital  your hubby is being treated at? Most hospitals have something,  an oncology  social worker,  a 24 hour on call social worker  and phychiastrist in emergency  .     I've had to go that route a few times.   Emergency  always had a social  worker  on call.    Your family  doctor  may also be a good source of information .     I went to mine when I was in distress  and he had a lists of places to refer me to and got me in quickly to a theapy group at the hospital .   The group even had pet therapy  once a week when  a dog would come from St.  Johns ambulance  to cheer people up.     What city are  you in? I can try and look up some stuff for you.    
Help is out there. All you have to do is reach out.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by ACH2015 on Dec 15, 2019 4:22 pm

Hi Rlh178‍ 

Your profile indicates you are in Sask.

As Brighty‍ suggested, have you contacted the hospital your husband is being treated at for counseling?

In the community services locator, I found several support groups in your Province, and supplied the links:

Canadian Cancer Society Peer Match Program. Register online with the simple steps provided. You can talk 1 on 1 with someone on the phone to offer support and an ear for assistance.

Cancer Support Humboldt Call for info.

Kick'in Cancer Support Group Call for info.

Rosetown & District (Dare to Care) Cancer Support Call for info.

Saskatoon Caregiver Information and Support Call for info.

Supportive Care Program Call for info.

Cansurmount Support Group for people impacted by cancer Call for info.

Kamsack Cancer Self Help Group Call for info.

I will share that I live 100 km from the nearest cancer support group. Like so many others,  my wife and I have traveled some distance to obtain the group or 1 on 1 counseling so many of us need and benefit from.

I hope when you call the suggested groups, you find one close by - or are advised of your closest option.

It must be winter right? The reason I say this is because many recent posts and threads seem to appear re: loneliness, being disconnected, and just wanting to reach out and communicate. Sometimes we need to initiate those connections and getting together with others ourselves. Don't wait - communicate!

Sometimes we need to network for ourselves to find the best and closest fit to fill our needs.

I hope this helps you get some resources.

ACH2015








 

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Rlh178 on Dec 22, 2019 11:25 am

ACH2015‍ thank you for taking the time to find these places.  Most of them are 2 hours or more away and my husband cannot handle much time in the car.  Some are no longer around and one is for senior citizens.  When I called the Canadian Cancer Society number they confirmed there is no support services near by.  The social services group that we have has not been available and often do not follow up with calling back.  I work a fare amount and the family members living here are not being much help.  I wish I could be more positive..  it is hard when a wall meets your every attempt at reaching out.

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by ACH2015 on Dec 22, 2019 12:51 pm

Hi Rlh178‍ 

I'm sorry to hear the distances are too far to navigate for you and your husband. I'd like to again suggest the Peer Match link I sent you.

Perhaps you would be able to get some 1 on 1 talk time with someone in the same situation as you and your husband.

No social workers at the hospital where you're husband gets treatment?

And..........Lets not forget this Community right? You can post and communicate with us here. You're getting that "long distance feeling" at least.

May I suggest reading and posting in Caring for someone with cancer and The Emotional Roller Coaster forums? There is lots of good information from those that are or have been in your situation. To access dorectly, click on the Forums tab, the choose and click the forum of your choice. Sometimes I've read something someone else has posted and - poof - it just makes sense and gives me a new direction to try.

Just trying to give and find as many options for you as there are.

Give the Peer Match a shot, and keep in touch here with us. I'm going to share another good resource from the Canadian Cancer Society Taking Care of Yourself that reinforces the importance of looking out for you as  a caregiver.

Keep well, and keep your chin up.

ACH2015

 

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by Lianne_adminCCS on Jan 8, 2020 2:51 pm

Rlh178‍ 

Hello I am just checking in to see how you are doing?

Thinking of you

Lianne

Re: In sickness and in health... I will be there until the end, but I'm not ready to say goodbye

Posted by NancyA on Jan 12, 2020 9:05 am

I just read your post and am thinking of you. Both of my parents have stage 4 lung cancer. I am the daughter, busy with 2 pt jobs and 2 small kids.  I am so lucky to have supportive friends, my ex has been very helpful too. 

My Brother passed 13 yrs ago so that will be the end of my immediate family when my parents fight ends. 

It has been really surprising some if reactions from people ( people are funny).

Sorry for this long post....

I am trying to say I am to say I am grateful fof this online forum as I have just started using it and have found immense support comfort. 

I hope you will know your not alone.

N