An unbelievable journey

You both have been through so much! I don't know how you did it , you m7st be a strong person and your husband is a lucky man to have you by his side. You are an inspiration to me , thank you.

Wow, you really took your vows seriously. Congratulations on maintaining your marriage and sense of humor. I sometimes wonder why some people must encounter serious health problems and others are spared. In the end, I suppose we may never know or understand the reasons. But, you sure seem to have accepted the challenge and come out on the other side with your loved one.

I haven’t dealt with anything close to what you have, though I do feel I’ve been a significant caregiver for two different family members at different times in my life. I felt it impacted my life negatively and still haven’t fully settled with it. Maybe, it’s different when the sick person is a spouse. I might have adjusted to that easier than that of my cousin and father. I hope to settle down with my feelings about it someday…..not far away.

I do relate to other caregivers though, especially for those whose loved ones are cognitively impaired. Are we a tribe? Idk…..there’s definitely empathy…….I think you have to have actually experienced it to fully understand. I’m not sure it’s made me a better person, but it has taught me to be more empathetic, appreciative and motivated.

Okay, so first of all, I wanted to thank everyone who took the time to read my blah, blah, blah !!!! and then send me a "reaction" and/or a reply. I didn't really expect hearing from anyone so soon after I took the leap this afternoon. Soooooooo . . . .

THANK YOU!!! Unfortunately, even though I may not be able to respond as soon as I would like to sometimes, I usually set aside some time each day to check in and write back to those who take the time to comment or "react". I know, better than most, how isolating and how lonely that place in front of a computer screen can be, just sitting there, hoping for a response. Believe me when I say that I will always try my best to take the time to let someone know they are NOT alone . . . EVER . . . .

I have to say that although our story is a bit "unique", I'm sure there are many, many others out there with stories that are just as trying and, most likely, a lot with horror stories that are just as horrible or worse than ours. But, what I have learned over the years is that a sense of humor, YES, is essential. As is advocating for yourself and the people you love. I, personally, don't think any of us ever walk alone in any of these sorts of things; so, reaching out to others is also essential. PLUS, even though I don't really practice religion or prayer as I used to . . . I think going to that place where we each find strength comes from somewhere. And that "place" within ourselves . . . that place where we find the strength and courage to face another day is a place where we find whatever/whomever we believe in. That, to me, is also a form of "prayer". And, if a person can't really define themselves as a believer in anything, per say, the belief in ourselves to speak and act for ourselves or the people we love is just as inspirational and 'faithful" as those who frequent a church or who may find comfort in a religious quote or book of teachings. At least that's what I've come to realize.

I have to say, over the years, I've chatted on different sites and with "believers" and "non-believers". To me, that's an extremely private place and one none of us should feel pressured to share with others. My personal "defining moment" was when, just about a week and half before our youngest daughter's wedding, my husband nearly lost his life to a system that was unsympathetic to our personal circumstances. That afternoon, sitting in a chair I was forced to sit in, in the hallway outside of his room before he was rushed to the ICU, listening to the screams of the pain he was in . . . I realized . . . I . . . ME . . . . was the only person who had witnessed the things I had at home that led us there . . . . and . . . I . . . . ME . . . had to "pull it together" and make them listen . . . walking the line I've since discovered between respect for those we had turned to for urgent care and the tears welling up in my eyes. I could have given into crying and blubbering on and on OR be as articulate and calm as I could be without showing the disgust and anger I was feeling toward those who had misdiagnosed him for months. That courage . . . that chutzpa was coming from somewhere; so, that is the place I have come to learn is where I need to go each time we are faced with that wall of indifference I sometimes feel is directed toward me . . . defined as nothing more than "THE" wife. I have learned to now trust it and move in a direction that offers us each hope and strength. Call it whatever/whomever you wish . . . but I've learned to advocate for what I know to be the direction I need to travel, rather than following someone else's protocol.

My maternal grandmother immigrated to the States in the early 1900's from Austria, just before WWI broke out in Europe. I have inherited many things from her . . . but the MOST important thing is her determination and courage to choose the direction toward hope and not look back.

Sadly, our future is uncertain with my husband's rare kidney disease which we've been told can often be associated with different cancers and serious illnesses. Over these 20+ years, we've definitely seen that happen and there could be more coming in the future; which is why we've learned to become vigilant and proactive with any changes in his health that deserve taking another look. I could share story after story where, had we not paid attention to what we were seeing, he would not have been able to walk our daughter down the aisle on her wedding day or been at our grandson's high school graduation last year. If anyone is interested in hearing more about what we've survived, I can certainly share those stories . . . offered, not looking for sympathy, but offered in the sincerest attempt to offer someone else the hope they may need to survive whatever challenges they may be facing.

Talking to someone, whether in person or by way of sites like these, someone who has lived through it . . . can give a person the insight and courage that can't sometimes be found elsewhere.

I'm here for any of you . . . if you'd like to know more about our story or to share yours.

With sincere, heartfelt gratitude for caring about us.
Dawn

@lizzyj58

You are so sweet. THANK YOU!!! Write anytime you think you could use a "pep" talk. Please use this forum, if you'd like, to share your story. Hopefully, you are on your way toward better times.

With sincere wishes for well-being,
Dawn

@celia16

YES, it (most certainly) hasn't been an easy time of it. And, still, it may not be even close to the end of it. His health is, at best, uncertain. He, being a man, with the whole gender difference between he and me has been a huge part of our problem through most of it; but YES, I DO take my vows seriously. I must say, though, that I am growing tired and uncertain if I can do half of what I have had to do. I'm going to be 68 in January and have had to set some personal limits of my own to some of the things I may have to do in the future. AND, I've learned that that's okay. Because if I can't take care of myself . . . I am of no use to him.

Please share your story as a caregiver if you feel you'd like to share. It's NEVER easy . . . . if you love someone, you just can't sit by and wait for the things you know they AND you need if you are to survive it. Talking to others about your experiences, especially with someone who's lived it, helps . . . I say no one can hear you if you don't speak out.

As many have probably figured out by now . . . . I'm a talker . . . a blah, blah, blah type of person. I talk fast and type even faster sometimes.

Best wishes,
Dawn

@suppiskey2surv It's my husband that has cancer, having pet scan on sat to see where it originated and where it has spread. I have to admit that I'm very scared. Trying to be upbeat for his sake but not easy. Hopefully this forum will give e me some hope and information. Thank you.

@lizzyj58 Wellll, POOP! That's terrible, hun. Of course you're scared. Lots of sleepless nights lie ahead, I'm sure. Like they say, "Been there. Done that."

Is he one to "share"? Most guys aren't. If he does, though, and you're one of the lucky ones . . . SHARE!!! If not, you found someone in me. Okay?

I'll try and check in often but if you don't hear from me right away, trust that I'll write when I can.

YOU ARE NOT ALONE!!

My husband survived Stage 4 and both of us can still speak in full sentences. We found our way through. So will you! Whatever your future, you will both find peace. Maybe not right away but it will find it's way to you both.

Any ideas as to what sort of cancer this is yet?

@suppiskey2surv lymph node in neck and probably lung, as he smoked. Having Pet scan on sat to find out more. And no,he's not a sharer. Yes lots of sleepless nights and a whole lot of anxiety. Thank you for your support, I need it!

@lizzyj58
Just lost the reply I was trying to send. Dang, sometimes I hate this little screen on my phone!!!!

Will try again tomorrow tomorrow. Sorry.

Sending you much ❤️

@suppiskey2surv Thank you.