GBM4 that chews us up and spits us out

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It is a difficult thing to say that we've been hurting but I want to write about this because I don't think we are the only ones.  The cancer seems to amplify any relationship problems we've had over the years - things which used to be manageable and makes it much harder to deal with now.  It hasn't been easy going through treatment for gbm4 since January.  Physically it has taken its toll and emotionally, too. 

My husband has been depressed and I have been feeling down, even though I try to look on the bright side.  I guess so much has happened that has gone against us that I've developed a negative bias.  Last month my husband was depressed about the place we've moved into.  He feels like I rushed us into moving in, but we  needed to find somewhere to live that would let us keep our dog.  He struggles with the stairs, in and out of the bath and told me he completely hates it here.  The landlord isn't open to modifications either, even though the adult social services would;ve handled all that..  He, wasn't eating properly, had been trying to reduce steroids on advice from CNS team, lost energy and strength, and was horrible to me for 2 weeks until he had a seizure and was admitted to hospital, where he had a second seizure.  He was in for a couple weeks and they put him on some different medication to prevent the seizures reoccurring. 

For the depression, he left hospital with a referral to the GP who booked him shortly after coming home to get him onto anti depressants and set up referrals for counseling.  He didn't take the anti depressants because of concerns over side-effects.  His mood at the start of the week was OK but gradually went downhill.  His drinking might have contributed, but he was being nasty even when sober, which never used to be the case.  The verbal abuse and threats were too much to bear and it came to a head.  I left my husband and grown kids for 24 hours to give him and me a chance to calm down.  It was hard I didn't want to go but felt that it was what I had to do.  He thinks I over-reacted but I am not a punching bag and I haven't done anything wrong.  He is so sensitive now I try to be careful to put things gently to him, but I do get it wrong from time to time - probably because I lose patience or because sometimes it is very difficult to not be blunt.  I hadn't been getting time for myself and that also took a toll.  At that point in time my options were to stay and put up with his behavior or go.  A palliative care nurse increased his steroids and he talked to other people who eventually helped him calm down.

I came back home to support my husband.  His energy levels improved and so did his mood.  The last thing i want to do now is make major decisions, but we started looking at places to rent.  We found something we both like although I have my reservations about it being more expensive.  We were accepted pending an online credit check application process.  We should find out in a few days - even though it means leaving our current tenancy early.  Yesterday he asked me why I am still down when things are looking up.  It is because I can't be settled until after we've moved again and I'm still worried for what else may go wrong.  I'm still hurt from everything that has happened and I'm also worried that his moods will change again.  There is so much to be said for the stress of not knowing what to expect from all of this.  I imagine there are lots of relationships that can't weather the storm.  I still hope we can.

  • Oh Shebelieves, you're right. This GBM4 journey does chew us up and spit us out...repeatedly. 

    it's not easy. I totally get it. But as you say, now is not the time for major decisions. Please remember that the medication as well that the impact of the tumour itself could be contributing to the personality changes/mood swings. Steroids especially seem to impact mood and not for the better.

    Taking time for yourself is crucial here. Trust me! I've ridden this emotional rollercoaster for just shy of 3 years and quickly learned how vital it was to take time for yourself. Even 10 minutes out of the house can make a huge difference.

    Journaling has been one of my key coping mechanisms. It doesn't need to be anything fancy- a notebook and pen are all you need and no one other than you need ever read it. Write down all the frustrations and things you want to say but can't or choose not to. It gets it out of your system. I've filled many notebooks! seeing the words down on the page take the power out of them and they seem less scary and intimidating. I will confess that there is one entry from a particularly rough day where the page is just covered in the F- word. It got it out my system!

    My son (now 25) gave me a brilliant piece of advice one say when I was stressing about something. He simply asked "will it matter in 5 years? If not, let it go". That pulled me up short but he was right. I've asked myself that question many times over the past 3 years and I am getting better at not sweating the small stuff, the day to day stuff but I'm far from perfect! I also repeatedly remind myself that the version of my husband we have had for the past 3 years is a broken one and try to console myself that he no longer understands the impact of his words. 

    It's ok to feel hurt and angry. We've been flung onto this journey with no warning, no training, limited support , no idea how long its going to last and no road map for the route. This is a tough gig but we'll get through it then we can take all the time we need to heal.

    We'll have been married for 28 years come Sept (if he's still with me by then). We've been together for 35 years all in and trust me, many of these years have been far from plain sailing! No relationship is perfect - ours certainly hasn't been for a very long time - but all storms pass in time.

    Hang in there. Remember you can reach out and vent here anytime too. We get it and we're here for you. The help desk is also there for you if you need them

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • It's nice to know other people swear when they get frustrated about all this stuff.  Also that we are not alone when it comes to arguments and relationship conflict.  And the changes I see in my husband where some days he seems like himself, and other days he is withdrawn or angry.  He is also vulnerable and scared at times but who wants to admit to that?  Rational thinking sometimes goes out the window.  Rules don't always apply to him.  Or he gets a bit foggy and forgets what he is doing.  Or he can be very sensitive and get really sad about something.  If I notice any more distinct changes I will try to note them down in case it helps anyone else.

  • Hi SheBelieves,

    You articulated the emotions someone can go through with this very well, which resonates with me. I’m feeling those emotions right now, Im 35 male and have a Oilglodromona grade 3, and I have been experiencing those exact emotions on and off for a while now.

    They put me on anti-depressants, but like your husband, the side effects were horrific. Anger levels were brutal. I’m also on anti seizure meds which cause me no end of side effects. And I'm lucky in that I haven't got the pressures in life that you have.

    Steroids have always been a double edged sword with  me. In some ways they make me feel great, but again, the side effects are terrible.

    Right now my last MRI said “sound and stable” and I’m only taking Brivaracatam for seizures, along with some supplements. But my mood is all over the place. As I type this, I had to go upstairs and get away from my family because I could feel the anger rising within me. And as you said about your husband, I do feel very sensitive to criticism, no one taking notice, nonone helping etc. And I know it’s not rational, even now as I type, but I can’t control the feeling. And like your husband, I can’t work out if it’s the tumour, side effects from medication, etc. it’s incredibly frustrating, as you guys know.

    My mental faculties not being as strong as they were, also become a problem. My critical thinking, focus and patience have completely gone out the window. For me, everyday tasks, small talk conversations etc,  feel like distractions and annoyances, but ten times more annoying than they should be. But as you say, the next day I can be completely depressed, sentimental and melancholic. 

    I probably wake up tomorrow and wonder why I posted all this lol.

    but I really hope things get better for you and your husband. And know that you two are certainly not alone.

    Aaron.