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glioblastoma and coping
SandiG
23 Posts
need help with the sver changing mood swings and unanswered feeling 
14 Replies
Whitelilies
2272 Posts
SandiG‍ Hello Sandi and welcome to our caring community....mood swings and emotions are all over the map......it is "normal".....there are concerns and worries and fear too....we all do understand.  I will tag 2 other members, to hopefully share a bit, of their journey, and offer support and ideas.
Thank you to:
Cynthia Mac‍ 
Brighty‍ 
Much appreciation, for our new member.

Regards
Whitelilies 
SandiG
23 Posts
thank you the emotions are his and mine , but the mood swings i understand he cant control but hard some days to accept . Not Dementia or anything just cranky and talks in circle 
 
Cynthia Mac
3872 Posts
Hi, SandiG‍ , I love your photo: it depicts caregiving in a very small amount of space!

I’m glad you’ve found this site, and hope it brings you the same kind of support it has me.

Do you have any supports for yourself? For example, have you reached out to your husband’s cancer centre to talk to a social worker, or do you have family helping out to give you a break?

I take it from what you’ve written that his mood swings are related to his cancer, and that while you understand that, it doesn’t make it any easier for you to manage it.

I’m going to leave this here for now, but ask any questions you need to ask, and someone here will try to answer them.

Thanks for the tag, Whitelilies‍ .
SandiG
23 Posts
thx i found it last feb or just after when hubby was in hospital and wasnt allowed to see him 
 
Brighty
8442 Posts
Thank you for tbe tag Whitelilies‍ .
Hello therei SandiG‍ .   I have experienced  what you are going through  and its very common.    I cared for my fiance who had stage 4 esophageal cancer.   I watched him morph into a shadow of his former  self.    He was funny, laid back, easy go lucky and when cancer struck he became  a very angry person and very hard to deal with.    
     change in personality  can be for so many reasons.    Could be from depression,  treatment side effects,  anger, body's hormones due to treatment.       My guy became depressed, anxious,irritable, confused and numb.    These are very real feelings and are common.     The most important  thing to do is to always keep  the health care team aware of this.    My fiance  was given ativan to calm his nerves.     He was also offered to see the oncology  social worker  but refused.    My mistake  was pushing,  nagging and not taking his lead when he wanted to be left in peace.    You can't force someone  to get help if they don't want it.   So I got the help.    I went to tbe social worker  and poured my heart out.   I leaned on family  and friends  and the good folks on the site here.     I backed off  and let him know I loved him no matter  what .     I reminded him of the great times we had together  and the reason I loved him so much and that I still did and always would.  Is he willing to talk to anyone?  If not, you do it.    Like @cynthia mac said,lean on others .   Don't try and go through  this all alone because  you are not alone in this .  We understand  and we will support  you.   
SandiG
23 Posts
thanks , yes im starting to reach out , He does talk about it but next day is like groundhog day and we start again  I feel like slight dementia type of symptoms . He always feels bad and says will try better . . He has hardest time making a thought that isnt a 10 min story with no real end or point , then says never mind . Im a pretty patient person but blunt at same time , Do you guys feel bad when you cant keep your emotions or thoughts from hurting your partners ? 
 
Brighty
8442 Posts
SandiG‍  Ya that sounds about right.   Guilt should be my middle name.    I feel guilty  for breathing sometimes lol.     We all say stuff we don't mean when we are frustrated.    The main thing is to let them know you love them.   I know he knows you love him.       What your are going  through  is not easy so cut yourself slack.  Glad you are reaching  out and please continue to do so.   
SandiG
23 Posts
think just hearing others stories and same issues is comforting 
Brighty
8442 Posts
I'm glad you are getting  comfort.   You are not alone.       Please keep reaching out.     SandiG‍ .
SandiG‍ 

I am popping in to say hello and welcome. I am glad you have connected with some of our caregiver members already . Caregiving is a tough job and is made all the more so with the current pandemic restrictions.

Besides the benefits of this community, I also wanted to give you the Ontario Caregiver Organization link https://ontariocaregiver.ca/

Continue to reach out here for support, resources or just to get your feelings out or even to laugh cry or vent. We are listening


Lianne
Elsie13
1545 Posts
Hi SandiG‍ , I saw on your wall that you were asking about that word 'remission' - when is that word actually used?   I don't know if you got an answer.  I feel that it's easier to discuss things here in the discussion forums. So:

https://www.cancer.ca/en/cancer-information/living-with-cancer/after-treatment-ends/cancer-as-a-chronic-disease/?region=bc 
"remission

A decrease in or the disappearance of signs and symptoms of a disease (such as cancer).

Complete remission means the disappearance of all signs or symptoms. Partial remission means a decrease in or disappearance of some, but not all, signs and symptoms. Spontaneous remission is an unexpected improvement that occurs with little or no treatment."
"One of the hardest things about living with chronic cancer is knowing that your healthcare team can’t predict how long the cancer will stay stable or in remission."

Unfortunately, remission doesn't mean 'cured.'   https://www.webmd.com/cancer/remission-what-does-it-mean

  1. Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” That doesn’t mean you are cured.

 


 
SandiG
23 Posts
thx everyone , I know all cases different but hope is scary 
think i stay to protect from further heart break 
hard to let the feelings back in just to get kicked again 
 
Angelal
8 Posts
SandiG

It's so hard to look after a GBM patient. Sometimes I just want to have one day off and stay by myself.

It's even harder if if affects the patient's cognitive function.

The time left for GBM patients is not that long especially when it's late stage.


Under current medical status, even doctors, scientists have no idea how to treat this disease, not to say us , the patient, the loved one.

So the patient's own mind, strength and the loved one's care and strength count more than doctors, medicals, scientists.

When I lost my mind sometimes, shocked and no idea what I could do, what I should do, that only made things worse.

Everyday I search for information related to treatments, clinical trials, nutrients etc. Every night I pray that God help us, give us strength, let us stay calm, lead us to find a solution.
SandiG
23 Posts
nice to talk to someone that gets it , I dont want to run away just all blends together and I feel numb most of the time. We never know how long or what will happen , Mood changes are the worst , when he wakes , will he be happy , sad or angry , Will he remember what we talked about before his nap , Will he punish himself for what he sad to me or be confused about why we are getting ready to go out , cause he doesnt remember decided and now doesnt want to ,.

we have good days but less and less
we are at 15 months and next MRI April , we wait...
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