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newbie here...husband has terminal cancer 
Started by BevB
22 Oct 2013, 2:24 PM

Hi All! My husband has stage 4 colon that has metatatized to other organs including liver. It's been 13 months of trying everything. Chemo isn't working; he was in a trial program that didn't work. Now he is taking stivarga - who knows what the side effects will be. I don't know what to expect next? He insists on  working  - I think this is keeping him going. The doc told us yesterday others in his condition have less then 6 months. We have been together 25 years. Does anyone have any advice for me? 

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Reply by marstin
22 Oct 2013, 3:40 PM

Hi BevB,

Welcome. You have found one of the greatest places to share your fears. Many of us have walked down similar paths to the one that you are on and hopefully we can give you some support.

The fact that your husband is wanting to work just shows his fighting spirit. I remember my partner going for a job interview just a month before he passed away. We both knew that he wouldn't be able to do it but I was so proud of his determination and how he kept on wanting to take care of his family right up until the end. His diagnosis of terminal bladder cancer did not stop him from believing that sometimes miracles happen. Possibly your husband just wants to keep busy so that he doesn't dwell on what is happening to him.

Tell us a little more about yourself. Do you have children? Family nearby to help you? This is a tough road to travel and all of the support you can get will be beneficial. Have you talked to your husband about what he wants to do as time goes on? Although it is a very sensitive subject, it is very important. My partner chose to pass away at home and we did all that we could to make it happen. It was extremely difficult and is not always the best option. It all comes down to what you can handle.

Please continue to share with us and we will do our best to help you cope with all of the twists and turns that face you.

Hugs,
Tracie
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Reply by NatR
22 Oct 2013, 4:02 PM

Hello BevB,

welcome to the forum.
its a terrifying to face such a diagnosis.  You have found a place of support - much easier to handle the unknown with a few others standing by to listen and help where possible.

every situation is different, everyone handles challenges in their own way.  Here you can be sure of support and the freedom to say exactly what's on your mind.

my heart goes out to you as you face this difficult time.  
You are not alone,
sending hugs 
NatR
 
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Reply by Mark99
22 Oct 2013, 4:10 PM

BevB 

As Tracie says welcome to a great place to share, learn, and have firends walk with during this time in your life. We are here with individual and collective wisdom, help, and love. And do share when you can. For me I find what I share helps me clarify and focus my emotions and my thoughts. 

My wife died two years ago from NSCLC. Three years earlier she was told she had 6 months to live but our oncologist told her not so fast. He slowed it down and give her a good quality of life. For me that period in our 28 years together was important. I became the caregiver she turned her disease over to me. As hard as that was it became my joy and learned more about both of us and what resides within me. So as you move forward consider your role as a caregiver hard but filled with love and hope.

I have written about Caregiving. I've linked to it below

"Are we born caregivers? Do we surrender to caregiving? Where do we learn to be a caregiver? How do we measure caregiving?"

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Reply by BevB
22 Oct 2013, 8:16 PM

Thank you folks for the warm welcome. I am glad to have found you. 

I am a very strong woman but yesterday's news crushed me. I hid at home today & spent most of it crying. Not sure if it's for him or me at this point. Not sure if it's for what we have that will be lost or if it's for what will never be. Maybe it's all of the above.

We both have family nearby but they are dysfunctional at best. My family avoids us as if the cancer will infect them. His sister is malicious. She is not welcome here. When he first got sick she asked me if I was going to 'put him out' now that he was sick. She had no basis for that statement as I have been nothing but supportive & caring the whole while we have been together. She then told his family that they could not call here. I couldn't understand why he wasn't receiving any calls or visits from his family. I spoke with one of his other sisters & she informed me what had been said.  I have always been made to look like a villian by this particular sister. It is best she is kept at a distance. Her type is not needed at this time.

My son is nearby. He is always willing to lend a hand or hang out to keep Charlie (hubby) company. Charlie is not his biological father but is his Dad. He is a little lost too.  We do have some happiness  to look forward to - our first grandchild is due in April. That's in six months. Kinda bittersweet.
 
There are so many unknowns at this point - it's really unsettling. The meds are maintaining his quality of life but at what cost? He feels the doctors are 'guessing'; that they don't know. He is in denial to some extent. Yesterday was the first time I saw him defeated. 

I am lucky in that I work from home & can work when I want. I am able to schedule & attend appts, scans, treatments & anything else that is needed. It's us against the world!!

Thank you Mark for the link. I read it several times & understand what you are saying. I do understand being broken & scared.

Throughout this ordeal our motto has been one day at  a time. This will be the way we continue........ 
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Reply by eKIM
22 Oct 2013, 8:20 PM

Hello Bev

Welcome to this oasis of compassion.  I hope that doesn’t sound hyperbolic, this figurative expression has a literal truth to it.  I really do think that Virtual Hospice can provide a resting place when our current experiences make it seem as though we are trudging through desert sands.

I would like to encourage you to put your thoughts into words and share them here.  You will see that you are speaking to gentle, compassionate souls. 

I find journaling to be cathartic.  Putting into words, that which is in my heart, brings me a measure of peace and calm.  Even if the duration of this peace and calm is short, it is still welcome, especially  when that which I am experiencing brings turmoil.

As far as “opening up” to people in a forum such as this, I am reminded of the quote by Blanche DuBois in the “Streetcar Named Desire” where she says:   "I have always depended on the kindness of strangers."

There is a phenomena of life wherein, from time to time, we come upon a compassionate stranger to whom we “open up”.  It can be a healing and even life-altering moment. 

In this journey called life, we wander our paths with our little candle held before us.  However, the darkness is not so fearful, when we come upon a fellow traveler.  Even though their candle seems as dim as ours, the two together will lighten the path twice as much.

We are very fortunate to be blessed with this opportunity in our times of need.  I hope that Virtual Hospice provides you with such an opportunity.

Your husband appears to be stoic in the face of his health challenge.  How are your emotions when you have your private moments?  What are your main sources of support, Bev?

- eKim
 

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Reply by JennJilks
23 Oct 2013, 10:14 PM

Bev,

My husband was diagnosed with stage 2 prostate cancer. We drove a 3-hour round trip to the Cancer Assessment Centre. Sat with various wonderful professionals for about 4 hours doing paperwork, answering questions, getting information from the nurse, surgeon, et al.

As hubby says, it's almost easier knowing it is positive than waiting to hear.
We have further tests, a plan, A, B, C. depending upon the results.

There are many people out there to help. Lean on them.
Do not be afraid to cry.
Do not be afraid to show your grief to family and friends.
Determine what specific help you need and ask someone for that.

Just know that he need not be in pain. Know the signs of pain, and yell until someone assuages it. There are specialists to help with this. We know so much about this. They call it 'symptom management', but let's call a spade...
Write down your questions. Ask the oncologist.
Write down your fears. THen put the list away and live in the moment.

Hope is different, once a diagnosis is made. A family's focus changes. Find the diamonds on those tough days.
And keep writing and talking.
 
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Reply by moderator | modératrice
02 Nov 2013, 9:46 PM

Hi Bev,

We haven't heard from you for a few days. How are you? Did you choose to shut your doors to Halloween this year or was it a welcome break? I'm sure it was tempting to just keep the lights out and huddle inside away from the wind and rain. Nikki used Halloween to lift her spirits. She has a 16-month old and kids can bring a smile to one's face even in the darkest moments. 

What a joy to hear that you have that happiness to look forward to with the birth of a grandchild in April.

Well Bev. I just wanted to check in. If you have a minute (and if you feel like it), let us know how you're doing. We'd love to hear from you.

Take care,
Colleen

PS: The sun will be out here in Toronto tomorrow. I hope it will be the same in your area. 
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Reply by BevB
03 Nov 2013, 1:08 AM

Hi Colleen

Thanks for writing.

It's been a stressful few weeks. Charlie had to be hospitalized a week ago. He was in pain & had gastro issues. They found his sodium & potassium levels were dangerously low. He had been extremely difficult to deal & reason with prior to his admission.

The docs attributed this to his low sodium level. He is more 'normal' now. He is home & resuming his day-to-day routine. He looks so small & tired...it scares me.

I'm thinking of asking for a referral to Princess Margaret in Toronto. Several people I work with have spoken highly of it. Maybe a second opinion is good...maybe it will result in the same diagnosis.

I live on a dark country road - we don't get any little ones here. It's unfortunate because I love Hallowe'en. I'ld be ones of those folks that decorate their yard if we did. I did dress my yorkies & cat up. They weren't impressed.

I'm at a loss for words. I am trying to digest all of this & just don't know how I feel. Sometimes I can't breahte because this is so over whelming.

Thanks for being there & listening.



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Reply by moderator | modératrice
03 Nov 2013, 1:17 AM

Hi Bev,

So good to hear from you. Isn't incredible how something that seems so simple (sodium) can be behavioural changing?

You're quite right. The palliative care professionals at Princess Margaret are incredible, but I wonder about the burden of travel? I know a couple who live just 2 hours away from Toronto. They have virtually no palliative support and I have often wished they were closer to Toronto. The wife and her dying husband don't seem to be getting the comfort care necessary where they live. But still Toronto is 2 hours away from home. And being home means a lot at this stage - at least for this couple. Everyone has to choose what is right for them. 
 
Is there no palliative care team at the hospital where Charlie was admitted?
 
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