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Terminal brain cancer. Glioblastoma Multiforme IV 
Créé par Moll
18 juil. 2017, 3 h 42
The journey is isolating. I am in anticipatory grief...fearing the loss of my husband. The anxiety is overwhelming.. It ruins the previous time I have left with him. Friends don't know what to say.  Family is either out of town or not particularly available for support.  So I  reach out to strangers.
How do you cope with the fear of losing your loved one?
 
Réponse de Wingman
19 juil. 2017, 3 h 06
Hi Moll.
It is  the unthinkable.
It is bigger than we are- it trumps every other thing in our world.
It becomes the new existence.... not what we know, not what we want, not where we thought we would be.
My friend, you survive on instinct. On my knowing the things you will do and the person you will become are far more than perhaps you give yourself credit for.
Your days become consumed by what he needs....by the appointments, the advice, the invasion of your peaceful world.

In my experience, these things come naturally when they need to...with jaded cost.

Break it down. A week of thought becomes a day or thought.
A day of the becomes a moment in time.
These small pieces, they mean everything. 
When you find a moment to share together, share.
If it is a moment to cry, then cry.
When there is a quiet minute without words.....for yourself or for you together- don't dismiss this but take it with gratitude, there is a storm around the corner.
Moll, for me, I heard the word *terminal. I understood what it meant, but I did not go through the day with its code.
I also had great anticipatory grief.....how can that be....how will this be.....why do the words bring me to my knees while my friend fights fierce.
And yet when I look back now on the last year, the hardest time, I see that I became someone I did not recognize.
My best friend had a brain tumour- the third metastasize. 
All I can offer is an understanding of where you are. We all adapt differently, we find strength in unlikely places. This place here, it is one of great compassion, empathy and understanding.
Sometimes it is this that makes all the difference.
I will sent to you my strength, my strong, my understanding.
WM
 
Réponse de KathCull_admin
05 août 2017, 3 h 51
Moll, it's been a while since you and Wingman spoke on this thread. How are you? How has your husband been? 

A new member Buckwheat started the thread Partner has brain cancer this afternoon.  

Thinking of you both as you navigate life - that can be very lonely.
Katherine
 
Réponse de Moll
05 août 2017, 22 h 34

Dear WM,


I'm soory I have not replied befpre now.  It takes me a while to process new things these days.  Your compassion and kind words truly touched my heart.  You hit the nail on the head and I get that you understand the journey.  It's ugly.  Watching a great man slowly deteriorate, losing his ability to speak, sometimes reason is devastating and hearthbreaking to watch.  Sometimes I wished something catastrophic would take him, so he doesn't suffer....and then the guilt I feel for even thinking this way is crushing.  I cherish every moment I have with him, but already I mourn the loss of the relationship we once shared.


It's always a quandry.  Always anxiety ridden...never peace.


I hope this finds you coping and well, my new friend.  Thank yo for reaching out to me.  I appreciate you.


 


Dear Katherine,


Thank you for contacting me.  I couldn't find a way to respond directly to Wingman, so I hope he's able to view my reply to him here.


My husband was told 2 weeks ago that there is no more treatment they can offer.  So we know what that means.  He is deteriorating, particularly with speech and on occasion, reasoning.  Most days he feels well and is able to enjoy life.  Golfing, fishing, walking the dog.  We just got back from a trip to the Sunshine Coast.  I took him and his Sister to visit their folks.  But it was obviously draining at times...especially the conversational parts.  I do my best to advocate on his behalf, explaining to people to no ask questions, instead, just talk...and my husband will join in when he's able.  But people don't always get it.


I remain in a constant state of anxiety.  Perpetual fight or flight mode.  I can't sleep, if I eat, I vomit.  It's been a helluva weightloss program.  Good job I was fat to begin with cuz I'm now a size 3.


I found a private grief counsellor who is amazing.  I have also been practicing EFT Tapping, and find that useful at times too.  I'm doing my best.  I will be here for my husband for as long as needed.  I just pray we meet again in another life...because we have sooo much unfinished business, and so little time.


Take care,


Moll.

 
Réponse de KathCull_admin
09 août 2017, 18 h 50
Dear Moll
Yes WM will get your message that you posted. She gets a notification when anything she is subscribed to gets a post.

I am sorry about the difficult news your husband and you received. I am glad that you have connected with a counsellor - to help you be there for him as well.  
Thanks for touching base. I will check in with you again.

Katherine
 
Réponse de Wingman
09 août 2017, 20 h 17
Hi Moll.
Thinking of you today. The place between the two walls is narrow indeed. You can rely on your instincts- they are all you have to guide you through the days. I am glad you have a grief counsellor you can speak to-sharing in the most difficult times provides what I call, mental maintenance. I didn't share my fears and my everyday experiences until the final month of my best friends life, and that person to whom I shared is a friend now treasured beyond words. Support is the lifeline. 

Day at a time, foot in front of the other. Take any moment to breathe that you can find. I pray for you today a moment of peace.
On my mind.WM
 
Réponse de Moll
09 août 2017, 21 h 21

Good afternoon WM,


Thanks for writing. I hope this finds you well.


My husband, although no longer receiving treatment remains fairly stable.  Though to speech process ia the challenge, made worse when he's tired or stressed.  I took him our fishing on Sunday on the boat. And I arrange socials for him with friends, cuz he's useless at making arrangements, lol. Always was.


He saw his family doctor yesteray and I asked is it was truly necessary for us to make the 2 hour round trip to Vancouver to see the Oncologist who can no longer treat him.  Turns out, my husband's family doctor will take the reins from hereonin.  I emailed the oncologist to cancel our appointment and the nurse wrote back and said "Enjoy the next few weeks/months"  I was so mad she was so thoughtless to say this to me.  As if I need a reminder.


The grief counsellor is amazingly supportive.  She is at Living Through Loss at 1st and Commercial Drive, Vancouver.  Because I have been put below the poverty line, she see's me at no cost.  So I'm trying to get the word out and help fundraise for them as a way of giving back.  When all the dust settles, I plan to volunteeer to show my gratitude and pay it forward.


Living for today, living in the moment, grateful for any fleeting peace,


Moll.

 
Réponse de Moll
11 août 2017, 1 h 15

A new fright today....already dealing with my hubby's speech challenges, but now it is noticeable he is having the odd challenge with simple tasks that used to come easily....like how to clean up after the dog....no invert bag....but laid bag beside offending material... I am so very scared of how this will progerss...but I'm so afraid to know....prefer to cross each bridge as it comes.  Major denial or smart choice?


Thanks Moll.


 


ps: sorry it's all about me....meant to say I hope this finds you well.

 
Réponse de Wingman
11 août 2017, 2 h 46
Good evening Moll,
It is about you. Right now, right here this is your struggle.  I remember when things were at their most difficult last year, wondering " when does this become about me?"
"I'm overwhelmed, I'm holding everything together, I am being who I need to be, but I am terrified"
It takes a unique place to ask that question, and them feel resentment and guilt at the same time. 
While there is a degree of denial, I always thought being part of the process, understanding what is happening, where we need to be and what we need to do was an obvious acceptance. Not the case. We have two minds. The one that knows what's happening and the one that can't begin to believe it.
All you can do is take the days as the come and cross a bridge at a time. There is no way to know what comes next or what to expect. It will progress only in the way it does and managing this is only by doing your best. My friend's brain tumor progressed with daily changes-some small and then the frightening big ones. Living with the unknown daily is draining, challenging and at times unbearable.  
I hope you have a way to balance the day, even if the smallest thing for the smallest moment. For me, my sweet pony was my balance. Some garden, some walk-perhaps music?
Thinking of you tonight and of your tommorow. 
Take-give-adapt......breathe.
WM
 
Réponse de Shanni
20 nov. 2017, 14 h 07
My father passed of the same thing. It’s the worst and I am so very sorry you are going through this. If you have question, I will do my best to help.


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