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An unbelievable journey
Most people can't grasp the gravity of our situation or simply don't want to take the time to fully understand it. But I'm hoping I'll find the support and understanding I've been searching for these past 20+ years of assuming the role of my husband's on and off again "caregiver". I'm not necessarily looking for sympathy, just helpful tips and suggestions from those who are or who have been in similar situations.
My husband was diagnosed with a rare kidney disease (MGN) in 2008 and ever since has had one serious illness after another. Three pulmonary embolii episodes, Hepatitis C, and Stage 4 Non-Hodgkins Large B-Cell Lymphoma being among them. Obviously, he's been through a great many physical health challenges and, thankfully, has been in remission after 6 rounds of RCHOP chemotherapy in 2018.
Obviously, we've both been through a great deal. His challenges have been of a more physical nature than my emotional ones but we have both suffered a great deal, just in different ways. I've administered stomach injections, packed surgical wounds, spent sleepless nights doing research while trying to hold a full-time job, changed bed linens multiple times during the night, driven him back and forth to Emergency Rooms, gone with him for scans and doctor appointments and so much more than I can possibly articulate here; but, because he still undergoes yearly MRI scans to monitor cysts on vital organs, largely due to the one they've discovered on his pancreas a couple of years ago . . . we are still finding ourselves challenged by the medical profession and all that goes along with that.
We are both retired now and have been married for over 47 years but 20 of those years, unfortunately, have been riddled with unimaginable health challenges few have ever taken the time to understand . . . friends, family and health care professionals alike.
I am not an overly religious person . . . faithful, just not religious per say and have had to reach deep inside for the strength necessary to do the things I have had to do. Even he, at times, fails to grasp how difficult it is to face the challenges of a person who has had to play the myriad of roles I have had to face over the years.
I've found that an amusing story or the written or spoken words of encouragement from someone in a similar situation to be invaluable. I'm hoping that someone in this forum will be able to offer the support and understanding I still search for. Hopefully, I too may be able to offer someone else the same.
Thank you for listening!
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@suppiskey2surv Not sure if previous message went through. I would love for you to keep in touch when you have some time! My husband has a cancerous lymph node and cancer on 1 tonsil. Biopsies next Wednesday in msk ny then 6 weeks radiation and possibly 3 chemo sessions to kill his cancer. My thinking is that by Christmas we will be in a better place!
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3 Reactions@lizzyj58, you'll notice that I removed your personal email. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.
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2 Reactions@JustinMcClanahan ok,thank you.
@suppiskey2surv I know all too well the weight you are carrying. I wish I could wrap my arms around you and ease your burden, even if only for a day. It is not eloquence I have, its scars. But, I have to acknowledge that each scar left me better prepared to help the next. The villians in my story are diabetes, heart disease, Alzheimer’s, Glioblastoma, and Chrons disease. Each had an unnecessarily long painful passing. They taught me so much about the human body, our medical system, our society, and of course myself. I wish those lessons on no one.
Sorry, after the last I was so depleted, I retreated into avoidance and darkness for 2 years. So now I’m regaining my energy and seem to be all chatty blah blah blah.
My point is you are not alone. This is a great place to release our quiet fears, vent our rages, and ultimately our acceptance that some things are out of our control. Nothing can really prepare us for all of this. Take care of yourself (yeah, I know, eye roll). Let others in to help, they mean well and you need any rest you can get. Allow plenty of time for yourself to heal when you are no longer on 24/7 hyper alert. And I hate to admit that I found the cliche is true…. Whatever doesn’t kill you DOES make you stronger. Another eye roll. It also makes you more grateful, more empathetic, more fearless, and swifter to step in and raise your tempered steel, or your sheltering arms as need dictates. I wish you both love and peace.
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4 Reactions@janna2
Thank you, most sincerely, for such a sweet message of support. It helps, so much, to have those in my life who get it.
I must say, though, that I've felt a little guilty this past week in sharing our story here. Even though we've lived through hell in the past, we are doing pretty good now, "only" living from one (thankfully, "stable") test result to the next . . . So, I guess I'm not in as such a precarious position as others are. To be honest, though, I have to say that, up until now, I wasn't able to laugh at much of it OR find the time to articulate most of it; so part of me DOES feel like I've found a place here in this forum. I hope our/my story WILL be one that can help someone else. AND, God forbid, if we are faced with dire circumstances again, I certainly know where to come for support. Until that day . . . Hope it doesn't happen again . . . At least, I guess, I may be able to ease all this "watching and waiting" by posting things that may help others.
I wish only the best for everyone out there who is living with some of what we've lived through or who are , hopefully, here on the "other side", being told to be "vigilant" after the storm has passed. None of it is ever going to ever be truly in the rear view mirror. But, I am, WE, are living proof that it can sometimes be overcome to at least a survivable level.
💞
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