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LnR
Posts: 4
Joined: May 2019

Hi, I just joined. My husband was diagnosed with stage IV Melanoma in August 2018. He was taken off treatment (Opdivo) last month due to side effects. The meds caused a bout of colitis that seems to have resolved with steroids. The treatment also caused type 1 diabetes so now he is insulin dependent and dealing with that. He is having a PET scan and MRI next week to see how his tumors are doing. At his last oncologist visit, he was told that there isn’t another treatment option so we are hoping that the scans next week are good. His last scans in February showed the tumors were remaining stable. I’m hoping that by joining here I’ll be able to find people who understand this crazy rollercoaster ride. I have family and friends but they can’t really understand because they haven’t been in this situation. I can only share a little bit here and there with them. There aren’t any caregiver support groups nearby. I’m having so many different emotions and I wonder if they are normal. In August, we didn’t even know if the treatment would work at all so we do have a lot to be thankful for. Even so, with all the fear, anxiety, worry etc it would be helpful to talk with others who can maybe understand. With all of the unknowns it feels like our lives are in limbo. Sometimes I feel really overwhelmed and need to get things out to sort through the emotions.  I don’t mean to sound like a whiner just wanted to introduce myself and I’m hoping to find others to share with. 

Catholic's picture
Catholic
Posts: 86
Joined: May 2016

Yuor not a whiner at all.  You don't sound like one either.  Post any time.  There are lots of people here who have great advice and comments.

LnR
Posts: 4
Joined: May 2019

Thank you, Catholic. 

a_oaklee
Posts: 526
Joined: Nov 2013

Limbo....it feels like a constant.  It's part of what I find the most disturbing in this process.  Actually it was quite an adjustment to have our Hope's, plans, and dreams derailed.  Sounds depressing.  Sorry.  Truth is as much as my husband and I thought we were in charge of our lives with our long term goals, we found out what we should have known all along.  It was always out of our control, we just didnt know it until a crisis hit.  I think we are both a work in progress as we go day to day with our lives.  Sometimes one day is the most I can think about.  I no longer think about the future the way I did.  It's not really a bad thing, that we live more for today.

I can definitely relate to what you have written.  I didnt detect any whining, but feel free to vent, rant or whine.  I'm sure there are people here who can relate to what you are going through.

LnR
Posts: 4
Joined: May 2019

Thanks for understanding and no need to apologize. I know what you mean about hopes, plans and dreams being derailed and about not looking at the future the same way. You are right in what you say about how there never was control but we just didn’t know it. I’m not good with dealing with the unknowns and not being able to find a way to fix things but with this I know it’s impossible. Accepting that has been hard and sometimes I have to keep reminding myself that it’s out of my control. I too find that I sometimes can only take one day at a time and I’ve found that if in my head I start jumping to all the “what ifs” I end up way too overwhelmed. The people I know mean well but they tend to suggest things that are hard to apply from where we are right now. Taking a nice long vacation together or having him make a bucket list might work for some people but right now we are just trying to try to see the little things day to day. Planning anything beyond today always comes with knowing that those plans may have to change if something comes up. I feel like I sound negative when I say that but it is the reality when you are in a situation where you’ve learned that the plans you’ve made could change in a heartbeat. I have my days where I feel like I can deal with things just fine and other days where everything is overwhelming so on those days I have to be careful who I share with or I could end up more frustrated or overwhelmed. People who have never had to live with knowing that the future really is always uncertain just cannot  really get it (And as much as I wish they could I’m glad they’ve never had to be where I am).  I’ve also had people apologize for sharing their worries about things in their life. They apologize and say it pales in comparison to what is going on in my life. I don’t want people to feel they have to filter what they share. I have to remind them that their worries aren’t minor because whatever worries we have are always big to us at the time. It’s ok for them to vent anytime to me. When people do that it’s actually helpful because if I can help them feel better I feel better too. At least I could do something for somebody. I want people to share and be as they always have been because it at least keeps things feeling normal somewhere. I would love for things to be totally normal again but I know they won’t. That’s frustrating but if at least a few things could remain as they were before that’s a good thing. I keep telling myself that maybe something good will come out of this mess. Who knows. I heard it said that “through the cracks in the sidewalk flowers grow”. I only see cracks right now but maybe one day I can look back and say to my husband  “remember when we were so afraid of everything, look at how much we have grown throughout this journey”. Again, who knows but that’s a good thought. Thank you for sharing. I’m sorry that you are going through this but it is helpful to know that the way I feel isn’t abnormal. 

JustKate63
Posts: 2
Joined: Jun 2019

and I’m so happy I found this site! Everything on this thread is what I’ve been feeling! I have nowhere to vent, nobody to really talk to that can possibly understand the feeling of being on an island of reality....nobody can possibly understand what it feels like to have your future life with your spouse that you worked your tails off for taken away in an instant, and the “new normal” is literally dat by day. 

MrsYo
Posts: 11
Joined: Apr 2017

The feelings of being overwhelmed, life on hold, emotions out of control and no one that you really can confide in and receive 100% confidentiality with your deep darkest emotion is a very lonely feeling.  But, here you can share ALL and know that we understand your experiences and journey.  We've been there (still there) and it helps to chat with folks who understand completely with no judgement.  Thank you.  It's (mood swings) completely normal based on many expressions here to feel exactly as you described. I feel it too, since 2017.  It's tough when you get the news and all of sudden your life is upside down and it seems everyone around you is clueless to the depth of your pain, struggle and FEAR and they actually don't know what to say or how to really support you.  

My husband looks better than he feels. So folks act as it everything is normal.  Partly because he doesn't share the pitfalls of his brutal treatments (CHEMO and radiation) so it comes off as if folks don't care, but I know they do, they just don't know or understand the challenges because they have no frame of reference/experience with such.  So I forgive them.  Some days my emotions are all over the place, crying, sad, lonely, mad,feel robbed of our dreams, resentful (at the cancer stealing our dreams), defeated and unappreciated....  Then they're days, most days, I feel a sense of grattitude, blessed, optimistic and hopeful.  Thank God for my steadfast faith.  Remembering to pause and take care of myself, connect with friends over lunch and just do girl-chat has been refreshing. When family and friends ask, how's your hubby, I stick to my script " Oh, he's doing okay", " he's hanigng in there like a soldier",  and "he has good days and bad days", making sure not to violate his request for details to remain private. So, no one really knows that those are code words for " he's not doing as good as we expected, not well-but moving forward or afraid and scared the other shoe will drop during the next MRI.  But, I don't can't be brutally honest out of respect for my husband, he's a private man and don't want pity from folks...compassion yes, but that's a hard one to detect where a person is operating from, out of the goodness of their hearts, no doubt, but patients don't want or need pity, I've learned and respect that.  Sorry I'm ramblling about Me and mine.  I was just hoping to let you into my thoughts and feelings to assure you, you're not alone.  There's more of us on this same journey, unfortunately and hopefully we can lift each other up when we're down.  Take care all.  Remember the light will shine again tomorrow, we must grab some. 

 

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