"I wish it had been a stroke..."

I'm still anxious about mum...she is more alert now but still getting the glazed eyes and nausea if she tries to swallow anything. Need something to keep my mind from exploding.

Isn't if funny how brain tumors can make you wish for some pretty horrible things? Here are some of the thoughts that have gone through my head since mum's diagnosis:

- I wish it had been a stroke

- I wish it had been another cancer...you can't cut off a cancerous brain

- I wish it had been stage III

- I wish we had been part of the US medical system (I used to be a staunch supporter of the Canadian healthcare system...no longer...it cannot handle GBM at all)

Please let me know what other seemingly "horrible" things you have wished for since diagnosis.

Also, I don't mean to minimalize other cancers or stroke. But this was definitely my mindset during the first month of mum's diagnosis (during the darker times, like now, these feelings come out full force again).

From initial symptoms -> confirmed diagnosis and people talking about their own cancer experiences -> navigating the Canadian healthcare system.

It is natural reponse , we all do it,. We can beat this, constant searching for mew information, yes, we're doing fine, the decline, the not so good scans.  Other treatments, more in the face head on seeing it and taking it in, they are not getting better, they are worse, nothing is working, than the acceptance of what is really happening, they are dying, and nothing you can do will stop it.  No more treatments, death is near, your only thought is I have to help them get ready to pass, put your greif aside, you will have plenty of time after they are gone, for the one's left behind are the next in line for the other part of this cancer journey.  The other suffering side of Cancer, you yourself don't have it, but you suffer from it also,  because you been in the battle right along with the true sufferer, killing you to see your loved one hurting inside and out.  Cancer truly is evil...  Then one day it  is over.... finished.  You have to say good bye.

Hi Fight56:

I'm Canadian too and all too intimate with our healthcare system.  It's not perfect but the trick is working with what we've got.

It's kind of like a U.S. HMO but with only one limit.  You can see as many specialists as you like, as often as you like.  Cost is not an issue.  The one limitation is geography - you have to stay in the country.  HOWEVER, a good doctor will refer you to the BEST specialist anywhere in the world and your provincial provider will pay the bill.  It's up to us to find those practitioners and the Canuck specialists for referral.  It's not that we can't deal with GBMs or don't have good doctors.  We just have such a small population that the good ones are few and far between.

I recommend Toronto Western Hospital, St. Mike's or Sunnybrook.  In Montréal, Royal Victoria.  If you're out west, I'm not sure but call Dr. Gregory Cairncross at University of Calgary for a suggestion.  He is a world leader in GBMs and histological markers for chemo effacy.

Wishing you and your mum the best!
Suz222

I wish I was on a tropical island with my wife (in her tiny Bikini) drinking a beer, soaking up the sun and never heard of brain cancer or cancercompass.

Sorry know its not what your re going for but If I am going to wish, I am going BIG..

Hux....

Go Hux!!!  : )  That made me smile all over!

O.K. Hux.  Good one!!!  On a very difficult day, you made me smile.

Suz

@psouthfla - Wow, you hit the nail on the head with the emotions we are going through. We are still on the journey but I am sure we will hit all those stages too. I remember when she was first diagnosed, I was so angry and thought "my mum is not a statistic." But everyone is a statistic - that does not make us any less human or individual. It's just with GBM, we are always praying that we are at the better end of the bell curve.

@suz222 - Thank you for the recs on doctors. Mum is actually a patient at Foothills (hospital affiliated with UofC), so I will try to contact Dr. Cairncross. The radiation techs were awesome, and her home care palliative team has also been great too. But the doctors seem too scared to do anything more than the most conservative treatment (which my mum is not even offered) - even avastin, which seems so commonly used south of the border, seems like it is hell to get prescribed. When mum came back from Australia, her neuro-onc said the surgeon did an absolutely brilliant job, and oh-by-the-way, if that surgery was done in Canada we could have sued for malpractice. That really soured me.

@huxley2006 - LMAO yes that is the much more positive version of what I'm talking about! For me, I wish I was in Japan, relaxing in an onsen, chilling with some snow monkeys XD

On Aug 22, 2012 1:27 PM huxley2006 wrote:

I wish I was on a tropical island with my wife (in her tiny Bikini) drinking a beer, soaking up the sun and never heard of brain cancer or cancercompass.

Sorry know its not what your re going for but If I am going to wish, I am going BIG..

Hux....

 

 

 

 

Amen to this!