Log in or Register to participate in these discussions

Glioblastoma

Glioblastoma

Posted by Sewing Girl on Nov 3, 2019 7:14 am

I have just been diagnosed with Glioblastoma.  Outlook does NOT look good.  I am 59 years old.  Surgery is Nov. 5.  Is there ANYONE with a survival story?  They are few and hard to find.  I really need to hear a survival story. 

Re: Glioblastoma

Posted by Lianne_adminCCS on Nov 4, 2019 1:21 pm

Hello Sewing Girl‍ 
I am sorry to hear of your diagnosis but glad that you posted.
I want to introduce you to  JCor403‍  and Rachel - DM‍  who may not have an exact diagnosis as you but have had a similar diagnosis.
Hopefully they can help give you some insight into their experience.
I want to wish you well with your surgery tomorrow.  What have the doctors told you about any treatments post surgery?
I imagine you are somewhat anxious on the eve of your surgery. Any surgery  has that effect on me.

Thinking of you

Lianne

Re: Glioblastoma

Posted by Sewing Girl on Nov 14, 2019 5:25 pm

I hAD SURGERY.  Left side is affecdted  I hAVe so much pain.  My husband help me.  i need to see doctor next week/  dpm't know what next.  I'm so afraid for husband. he he so tired and rundown  i can't brliev i do this to him  i so sorrry

Re: Glioblastoma

Posted by Elsie13 on Nov 15, 2019 5:27 pm

Sewing Girl‍ I'm so sorry you are going through this.  Also, I think your husband may need to get help with caregiving. He can't do it all - he may get sick. Do you have family, or neighbours who can pick up groceries, or make casseroles?  Cynthia Mac‍ , Brighty‍ , jorola‍ do you have suggestions for SewingGirl's husband? 

Re: Glioblastoma

Posted by Cynthia Mac on Nov 15, 2019 7:20 pm

Hi, Sewing Girl‍ , it sounds as though your husband is trying to do it all. Many caregivers try it, but we simply cannot do it all.

You’re in recovery now, and you’ll feel poorly for a few more days, but please understand that you did not “do” this to him! You could no more prevent this than you can avoid getting a cold or avoid having your hair grow!

Your husband need to take a bit of time to care for himself. Does he have a friend he could go and visit for an hour or two once you’re resting for a bit? Even if he can take a nap while you’re resting, it will help him recharge his batteries.

If he’s struggling with housework or errands, and you can afford it, you can bring in a cleaning service, or use a grocery service so he doesn’t have to go through the whole store.

I hope you feel better soon, and that your husband finds a way to de-stress.

Re: Glioblastoma

Posted by Brighty on Nov 15, 2019 8:53 pm

Sewing Girl‍  Hi there..............Thanks for the tag Elsie13‍ .       Like Cynthia Mac‍  says, NEVER blame yourself.   You had no control over the situation.     It is just a really crummy set of circumstances.      Your hubby may just feel overwhelmed right now, so this is the time to ask for help.    Don't be proud at this time.    Can you think of anyone, family, friends, community members, religious organizations, anyone who can help hubby with the chores or daily tasks?    The more help he gets, the less overwhelmed you will both feel.     He will have time for self care and you will both feel better about things when you have a support system to lean on.      Just tell people what you need and you will be surprised how people will come through for you.        Keep us posted on how things are going!   

Re: Glioblastoma

Posted by jorola on Nov 17, 2019 7:20 am

Maybe Lacey_adminCCS‍ could make some suggestions to help your husband? Maybe https://cleaningforareason.org/ ?

Re: Glioblastoma

Posted by Sewing Girl on Nov 17, 2019 11:32 am

so afraid for husband so afraid.  Will he get yhtough.  zo sorry  so sorry so sorry

Re: Glioblastoma

Posted by Wendy Tea on Nov 17, 2019 4:13 pm

Sewing Girl‍  thank you for posting even though I can see it is difficult.

Please know your husband is strong and that he will be able to cope. If you can, talk about the options of how you need help and what type of help he thinks he needs. Then make sure he makes those phone calls or sends emails with specific requests to those who want to step up.

When I needed help, I was surprised by who helped. Helping others makes you feel better. Let people help you now.

Best wishes
Wendy Tea 

Re: Glioblastoma

Posted by Ten77 on Nov 18, 2019 9:34 am

I can’t speak as a survivor, I can speak as a new caregiver.  Your hubby will get through this, he will grow and adapt and find strength he didn’t know he had.  If you have a friend who you can reach out to, put her ( or him) in charge of organizing other friends to help with daily tasks including a visiting schedule to give hubby respite.