Sorry. Just had to vent

ForMymgus

Hi fellow caregivers. Recently, I caught a thread in this, the Caregiver section of this site and simply had to offer my two cents. I realize these comments and the original poster shared their feelings a while back but sometimes reaching out into cyberspace here and there helps. If anyone is interested in catching a glimpse into my personal goings on, I shared a bit of it in my "About Me" section of my profile.

In a nutshell, my husband is in an almost 5-year remission from Non-Hodgkin's Diffuse Large B Cell Lymphoma, Stage IV. He's doing well. THANK you know who!!!!

BUT . . .

I've been having a few disturbing symptoms that no one seems interested in diagnosing . . . all "normal" "abnormal". It's beyond frustrating!

Through my husband's cancer (and for years prior, as he's had a number of really terrifying health problems), I was always the one everyone looked at whenever there was a yard that needed mowing, snow that needed shoveling, meals that needed cooking, stomach injections that needed to be administered, linens that needed layering, laundering and changing in the middle of the night . . . I'm sure most of you know the drill. Admittedly, ever since we met I was never one to speak up about a thing . . . to him, to the kids, to the doctors . . . I was always the one everyone told to be "positive" and thought I just should keep all the fear, anger, etc. under my hat as I didn't want to be labeled the "negative", always the pushy (*$%tchy) you know what.

But, when he was diagnosed in 2018 with "the beast", I just couldn't sit still and take it anymore. After years of begging, pushing and pleading for more to be done for him, I morphed into the two-headed shrew I am today. Even he seldom said a word about how he was feeling, or what he was thinking about a second of it. Not even cancer could pull any of it out of him. I thought, "Geesh! If even cancer intruding in our lives didn't do it, nothing would." So, I (once again) did all the internet surfing for relief from mouth sores, nausea . . . . and all the rest. We both were desperately trying to hang onto our full-time jobs at the time (now since retired) and had to deal with all the sad or resentful looks from everyone. It has spanned the course of almost 15 years now and I am POOPED!!!!

With all my own challenges (a forever MGUS nobody), and a number of what appears to be a few neurological, back-related issues . . . I feel even more alone than I ever have. Who is around now to ask, "Do you need anything?", "What can I do?" . . . Things are better between us, but we are struggling with the toll all these years of health-related problems have taken. There is a part of me that remains exhausted, isolated and just plain "Used" . . . "USED" by all involved and I (for whatever reason) have to all but beg for a pillow "fluff" in a procedure room or a look beside the customary "It's all in your head" look everyone around gives me whenever I all but collapse from the heat or for no other apparent reason.

If I sound resentful . . . it's because I am and there has never been an apology offered or an explanation for a second of it from any of the medical "professionals" we were sent to. Yes, our own drama added to the horror which they couldn't fix for us, but a simple "We're sorry, should have looked into that more" would have eased the burden by leaps and bounds.

I realize this is a whole lot of "blah, blah, blah" and some of you may be reading this, thinking, what a "witch", self-pitying ogre who can't think of anyone but herself. But those folks, I've come to realize, are the folks who themselves can't put themselves in my shoes and take the time it would take to understand it all.

I'll shut up for now, I guess, but not without throwing in this next sob story.

Shortly before this all began with my husband, our youngest daughter was engaged and her wedding a year later was almost spent with either no one or myself walking her down the aisle because the doctors we were seeing missed a case of Hep C in my husband that landed him in the ICU just a mere week and a half before her wedding. For nearly a year, he was misdiagnosed and his condition was completely underestimated; not to mention a repeat of that in 2017 when his lymphoma rash was explained as a fungal infection for a year before he was diagnosed with Stage IV cancer.

The point in this verbose post? Caregivers everywhere . . . DON'T GIVE UP ON THE PEOPLE YOU LOVE!!!! Fight for them with everything you have and if the person stricken with "the beast", themselves, can't or won't share a moment of it with you when you need it . . . TELL THEM TO!!!! Caregivers cannot read minds or hearts.

I once overheard one person, lying just over the paper thin cubicle wall of our station at the chemo clinic saying, "My wife just doesn't understand." I had all I could do to keep from bounding over that paper thin wall and ask, "Well, did you ever ask to?"

I shall leave it at that for now, I suppose. That's all the "gushing" I have in me this afternoon. 

🤨



luigirusty

I just found this website today after 8 months of taking care of my mother with gastric cancer. SO much of what you wrote resonates with me.

I speak medicine like a trained doctor, change bandages like a trained nurse, and manage my full time job and her full time care like the CEO of a corporation. I'm none of those things. And I'm EXHAUSTED. Mostly, from trying to get my mother to do the things that SHE can do. Mostly from hearing her wonder OUTLOUD why I'm tired all the time.

I've turned into a raging b** ** in order to get the proper care for her after her first oncologist royally f'ed up. I've moved into her home, a most isolating location, and away from MY community.

Anyway...just a little sample of my OWN gusher...to let you know that you're not alone in feeling like a witch, a complainer, a whiner....but we're not. We are FIGHTING to care for our loved ones, whether they participate or not. Anyway, you're not alone. And your post helped me today feel like I'M not alone. Thank you for sharing.

lizzy123456

Hi,

I hope you’re doing well. My father recently was diagnosed with glioblastoma(brain cancer) I take care of him full time at 26. It’s tough and it sounds like you are mentally overloaded like most of us. I have to say staff in the hospital can sometimes be not so helpful and I can understand why you are frustrated throughout your time with them. Try to take time for yourself and relax when you start feeling angry or overwhelmed throughout the day. I wish you the best!