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Partner has brain cancer  
Créé par Buckwheat
04 août 2017, 19 h 00
I reached out to the social worker at palliative care as was not handling my partner's progression of brain cancer very well. We also asked for a palliative care home assessment before the crisis hits. She gave me this website as a starting point.It's been a challenge to create any strucure in the day as something always comes up. Every time the tele rings I now experience a startle reaction. I've found that if I can stay calm and in the moment my partner manages better. That's easier said than done. My partner has identified friends that she wants to see before her cognitive abilities decline too far.How have others coped  and what has proved to be a gem even momentarily?
 
Réponse de KathCull_admin
05 août 2017, 3 h 47
Welcome Buckwheat,
I am glad you reached out for support to the social worker. You are carrying a lot right now. Being a partner, caregiver, support, link between your partner and friends - and I am sure other roles as well. 

My husband died two years ago next week. Two things that stand out to me were: I was able to spend time, talking with him, telling him how much I was going to miss him, telling him I loved him; and he was able to spend time talking with our daughter - she wrote down those things he said - something I wish I had done. That time was most precious knowing that it was limited. He was also able to spend time with an old friend who flew across the country to see him. 

I hope life allows you to have time to spend with her.  Do you and she have family sho are able to support you as well?
Katherine
 
Réponse de Wingman
05 août 2017, 8 h 00
Hi Buckwheat.

It is a tough place to be and the community you find here is one of understanding. A place to share is invaluable as the days become harder to distinguish one from the other.
My best friend also developed a tumour in her brain, although as a metastisis. I understand the place of hyper alertness you describe - the progression of the disease is all consuming with an intensity that is difficult to comprehend. Knowing the next crisis is coming around the corner weighs on the moments at hand for sure.
For me, coping was largely in the tasks at hand. Helping to bring her friends to her gives may prove a more positive daily focus for awhile, being able to communicate with them and give her something to look forward to for a moment in the day can help to break up the cloud that you live under. Having her friends walk into the room and spend some time, knowing this has provided a moment of satisfaction for her - these are the gems that one needs. Even if they only consume an hour of the day, it will the this hour that will be the most memorable.

Being your best self for someone else while the world spins out of control is a most selfless condition. It is impossible at times to know where you can draw the strength from.
This community is a pillar.  Being able to share your truths when you feel isolated and alone and finding understanding can hopefully be a gem for you.
Hold tight to the best moments of the day. They are deserving.

My thoughts and my strenght to you.
WM
 
Réponse de Moll
05 août 2017, 22 h 55

Hello Buckwheat.  Moll here.


I'm so sorry to hear that you too are going through this tumultious journey.  It's ugly.  The only sucess I have had in coping is living in the moment.  That's especially difficult for me who has PTSD and relives every seizure...but I still talk to myself:  "You're okay, you've got this"  Yeah, it's a lie, cuz I'm so less than okay and I'm so stressed all of the time...but I keep talking the talk....hoping one day I will beleive myself.


The social workers at the BC Cancer Agency were useless for me.  I was bounced around to 5 different ones, all treating me like a number rather than a person who risks losing her husband. I finally found an excellent grief counsellor privately.  I do beleive she will save my life.  She is in Vancouver.  I have hope that I will survive this...although I will walk out of the storm so very differently as to when I walked into it.


You speak of the feeling of isolation.  It is so true.  We are so consumed by our thoughts that we are not reachable to those who have not shared out trauma.  So we resort to places like this.  To people who understand, withouth judgement....I'm grateful.


You are not alone, Buckwheat.  That's the sad part.  There are way too many of us.  So why are there no support groups so we can meet face to face and actually form a human connection? 


I'm here if you want to talk.


Hang in.


Moll.


 



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