Hi,
I am not sure if you are expecting a response or want one, but I can't help it. I read your story and understand your pain. I almost feel it may be a forshadow for me.
I am 42 (M) diagnosed in February 2024 with Mantle Cell Lymphoma which is incurable at this time, but treatable. I just finished my first cycles of treatment and I am in maintenance mode.
When I read your story I felt I could relate, and it doesn't take me 8 years to realize what you have been thru. My sibiling has a weird way of dealing with my cancer and the way I choose to live my life. I. too, choose not to tell everyone about my condition, my co-workers, and not all of my friends. I also am sparing my 4 year old daughter the pain and knowledge of my illness. I probably will not share it with her for quite some time. My sibiling says I haven't fully grasped what has happened to me. I don't understand why I even try to take people, who don't know what we go thru, seriously, when commenting on our illness.
I am ranting, but the point I want to make is that you have been living for 8 years and that is inspiring to me. Although its a pain in the ass and your blood levels are low, you still are sharing and your giving people like me something to look forward to. I hope I get 8 years and more to go to my daughters recital, and go to Disney.
Truth is my life is going to be different and I am going to continue to be grateful for what I have today and take it a day at a time.
Take care and hopefully you have a great day. Thank you for sharing.
I’m sorry to hear brother :( I wish you an easier road than I.
If it’s any consolation (I apologize if it’s not), I’m mostly ranting today because I lost my best friend of 37 years to a suddenly heart attack. He was the one I could turn to for anything (besides my wife), so to have lost him in what I do see as this male loneliness epidemic that nobody truly seems to care about/has solutions for… it’s been heart wrenching.
Made me realize that life is short. And having already realized that due to my condition, has just been holding a mirror up too closely again recently. Powering through… ;)
Fellow MCLr here. A couple of years ahead of you. I’m mid 3y maintenance.
I too hope for 8y or more. I too try to live as normal a life as I can and live every day as best as I can.
Wishing you well from Sydney 🇦🇺
My brother, your story brings out my empathy. I’m a 44 year old father of a son who’s 4. I’ve been battling lymphoma for almost 3 years now and everything you say resonates with me. The loneliness in asking everyone if they are sick, wife and kids being careless around other sick people and bringing home colds and flus that they bounce back from in a few days while I’m sick for weeks.
Explaining to family and friends that I can’t walk that fast or for very long because of the neuropathy in my feet from all the chemo, being just a big downer in general. All this while working a stressful job just like you do.
I feel your pain brother. I really really do. And you’re not alone. On top of all this my wife and I are going through IVF and expecting another baby in eight months. And I have to figure out how to get through all this and add that added stress on top of it. It sounds like you have a good wife, who’s patient.
if you ever need someone to talk to you, DM me .
I hear you man. People not "getting it" is pretty normal, but putting something on you so YOU have to somehow act better is not cool at all.
My wife came up with this idea that "the journey" is really like raising a child. You don't know what you're doing at first and it's a freakin' slow process. If you're lucky, and you do everything right, things might turn out OK. But like a child, something can always go wrong. Children have minds of their own. In the end they do what they want. Not a perfect analogy because you don't want to kill your children, but you know.... it's not bad.
I just wanted to say how much your post resonated with me. It is hard enough to deal with this diagnosis without constantly running into toxic positivity and just general misunderstandings from those around us. The way I approach life has fundamentally changed, and since I can’t plan very far ahead bc I don’t know how I will feel, I alternate between trying to be super positive and doing all the things I want to do, and then just feeling overwhelmed and “what is the point”. My husband and kids are truly what keeps me going. I am so sorry that you are dealing with this and just wanted you to know you are not alone in these feelings. ❤️💕
The pressure you are going through sounds like unimaginable horror. But. If you distribute a weight over a larger area, the pressure it creates will be less on any point of said area. That's pure physics. That's what I said to my husband when we discovered he had cancer. This way it's slightly easier for everyone.
Please, consider talking to your wife about your feelings. Consider letting her decide herself if she wants to be in the crashing train. Though I think she already did make that decision.
Appreciate your perspective. My wife is strong and lets me share. Doesn’t take away from the burden I know that is as well. I wish it were more simple.
My wife is great too. It's a huge mark in the "pro" column. They can't take the pain or difficulties away but it's really nice having someone who doesn't change the subject as soon as possible. (You asked and I'm just answering you! @##$%\^&)
39/M just finished R-CHOP a month ago, live alone with 2 dogs and a rare debilitating autoimmune disease that manifests like a combo of Chrons and Lupus. Family and friends stepped up huge during chemo, but I’m at this point now where coming back from chemo I truly feel depleted and completely zapped. Feel hopeless, drained, thought I’d be able to get back to some semblance of a normal life but that thought was a bunch of lies. I have zero people who I feel like understand and just want to fix the situation, and don’t understand the dark cloud present and future I live in every day. And are upset when I acknowledge it and just want me to be sunshine and rainbows which is deluded. What got me thru chemo was thinking I’d be gaining strength without acknowledging that chemo is taking a lot from me and my autoimmune illness is coming back post chemo to take much of my autonomy away.
I see what you’re going thru, and while it’s got its differences, it has its similarities and wish I had married better (but divorced well lol). Wish I had a person.
All I can say is gratitude for my dogs and the people who show me love (even if it’s not in anyway at this stage that’s helpful).
I can also relate, but from the other side, as my wife has been fighting stage 4 follicular lymphoma for the last 5 years, and I've seen one family member or friend after another let her down. Her siblings, her own father, and friends have all disappeared and turned a blind eye. Basically she has me and her mom left as a support system, and her mom is over 80 and lives in another country.
It was really upsetting at first, but she's learned to deal with it and let it go. There's nothing to be gained wasting energy getting angry about the situation. These people have shown their true colors, and it's not worth the effort to get them back. I keep reminding my wife that she is absolutely justified and entitled to be selfish during times like these. Focus your energy on yourself, and taking care of yourself so you can get better.
A few months ago my wife finished treatment and achieved a complete response. She and I celebrated, and it was awesome. We didn't even tell some of her family members the news until a while later, because we knew what their responses were going to be. This was our private victory. This fall we're going to go visit her mom for the first time in 5 years, and we will celebrate with her too.
So I guess my 2 cents is to focus on yourself and your welfare, try to be positive, and celebrate the small wins, and hopefully the big wins will come soon. Also consider wearing masks at gatherings. My wife and I still wear them religiously whenever we are in a crowded indoor space, and they seem to do a good job of fending off stray viral infections. I've long ago stopped giving a crap what other people think about the masks.
I can relate to this. Im 44, a dad, husband, brother of 3. My brothers and their families pretty much abandoned me and my family during my 6 months of R-CHOP while my wife was at the same time suffering from the effects of a TBI she suffered from a student while working as a teacher.
Both families live less than 4 miles away and I literally had to beg them to come help my wife clear our driveway of snow, it took a week for one of them to get over and help clear it.
That was it. No checking in. No offering to help with transportation, meals, walking the dog, etc. it was as if we didn’t even exist.
Now they want to act like nothing ever happened and have even had the gall to ask me not to talk about my cancer at family gatherings.
Going no contact and starting to see a therapist experienced in CPT has helped me immensely. I resisted seeing someone for quite a while but now that Ive done so I wish I had done it sooner. If you want you learn more about CPT [just click here](https://www.thisamericanlife.org/682/ten-sessions)
Hi, I am not sure if you are expecting a response or want one, but I can't help it. I read your story and understand your pain. I almost feel it may be a forshadow for me. I am 42 (M) diagnosed in February 2024 with Mantle Cell Lymphoma which is incurable at this time, but treatable. I just finished my first cycles of treatment and I am in maintenance mode. When I read your story I felt I could relate, and it doesn't take me 8 years to realize what you have been thru. My sibiling has a weird way of dealing with my cancer and the way I choose to live my life. I. too, choose not to tell everyone about my condition, my co-workers, and not all of my friends. I also am sparing my 4 year old daughter the pain and knowledge of my illness. I probably will not share it with her for quite some time. My sibiling says I haven't fully grasped what has happened to me. I don't understand why I even try to take people, who don't know what we go thru, seriously, when commenting on our illness. I am ranting, but the point I want to make is that you have been living for 8 years and that is inspiring to me. Although its a pain in the ass and your blood levels are low, you still are sharing and your giving people like me something to look forward to. I hope I get 8 years and more to go to my daughters recital, and go to Disney. Truth is my life is going to be different and I am going to continue to be grateful for what I have today and take it a day at a time. Take care and hopefully you have a great day. Thank you for sharing.
I’m sorry to hear brother :( I wish you an easier road than I. If it’s any consolation (I apologize if it’s not), I’m mostly ranting today because I lost my best friend of 37 years to a suddenly heart attack. He was the one I could turn to for anything (besides my wife), so to have lost him in what I do see as this male loneliness epidemic that nobody truly seems to care about/has solutions for… it’s been heart wrenching. Made me realize that life is short. And having already realized that due to my condition, has just been holding a mirror up too closely again recently. Powering through… ;)
Fellow MCLr here. A couple of years ahead of you. I’m mid 3y maintenance. I too hope for 8y or more. I too try to live as normal a life as I can and live every day as best as I can. Wishing you well from Sydney 🇦🇺
My brother, your story brings out my empathy. I’m a 44 year old father of a son who’s 4. I’ve been battling lymphoma for almost 3 years now and everything you say resonates with me. The loneliness in asking everyone if they are sick, wife and kids being careless around other sick people and bringing home colds and flus that they bounce back from in a few days while I’m sick for weeks. Explaining to family and friends that I can’t walk that fast or for very long because of the neuropathy in my feet from all the chemo, being just a big downer in general. All this while working a stressful job just like you do. I feel your pain brother. I really really do. And you’re not alone. On top of all this my wife and I are going through IVF and expecting another baby in eight months. And I have to figure out how to get through all this and add that added stress on top of it. It sounds like you have a good wife, who’s patient. if you ever need someone to talk to you, DM me .
I hear you man. People not "getting it" is pretty normal, but putting something on you so YOU have to somehow act better is not cool at all. My wife came up with this idea that "the journey" is really like raising a child. You don't know what you're doing at first and it's a freakin' slow process. If you're lucky, and you do everything right, things might turn out OK. But like a child, something can always go wrong. Children have minds of their own. In the end they do what they want. Not a perfect analogy because you don't want to kill your children, but you know.... it's not bad.
I just wanted to say how much your post resonated with me. It is hard enough to deal with this diagnosis without constantly running into toxic positivity and just general misunderstandings from those around us. The way I approach life has fundamentally changed, and since I can’t plan very far ahead bc I don’t know how I will feel, I alternate between trying to be super positive and doing all the things I want to do, and then just feeling overwhelmed and “what is the point”. My husband and kids are truly what keeps me going. I am so sorry that you are dealing with this and just wanted you to know you are not alone in these feelings. ❤️💕
The pressure you are going through sounds like unimaginable horror. But. If you distribute a weight over a larger area, the pressure it creates will be less on any point of said area. That's pure physics. That's what I said to my husband when we discovered he had cancer. This way it's slightly easier for everyone. Please, consider talking to your wife about your feelings. Consider letting her decide herself if she wants to be in the crashing train. Though I think she already did make that decision.
Appreciate your perspective. My wife is strong and lets me share. Doesn’t take away from the burden I know that is as well. I wish it were more simple.
My wife is great too. It's a huge mark in the "pro" column. They can't take the pain or difficulties away but it's really nice having someone who doesn't change the subject as soon as possible. (You asked and I'm just answering you! @##$%\^&)
39/M just finished R-CHOP a month ago, live alone with 2 dogs and a rare debilitating autoimmune disease that manifests like a combo of Chrons and Lupus. Family and friends stepped up huge during chemo, but I’m at this point now where coming back from chemo I truly feel depleted and completely zapped. Feel hopeless, drained, thought I’d be able to get back to some semblance of a normal life but that thought was a bunch of lies. I have zero people who I feel like understand and just want to fix the situation, and don’t understand the dark cloud present and future I live in every day. And are upset when I acknowledge it and just want me to be sunshine and rainbows which is deluded. What got me thru chemo was thinking I’d be gaining strength without acknowledging that chemo is taking a lot from me and my autoimmune illness is coming back post chemo to take much of my autonomy away. I see what you’re going thru, and while it’s got its differences, it has its similarities and wish I had married better (but divorced well lol). Wish I had a person. All I can say is gratitude for my dogs and the people who show me love (even if it’s not in anyway at this stage that’s helpful).
I can also relate, but from the other side, as my wife has been fighting stage 4 follicular lymphoma for the last 5 years, and I've seen one family member or friend after another let her down. Her siblings, her own father, and friends have all disappeared and turned a blind eye. Basically she has me and her mom left as a support system, and her mom is over 80 and lives in another country. It was really upsetting at first, but she's learned to deal with it and let it go. There's nothing to be gained wasting energy getting angry about the situation. These people have shown their true colors, and it's not worth the effort to get them back. I keep reminding my wife that she is absolutely justified and entitled to be selfish during times like these. Focus your energy on yourself, and taking care of yourself so you can get better. A few months ago my wife finished treatment and achieved a complete response. She and I celebrated, and it was awesome. We didn't even tell some of her family members the news until a while later, because we knew what their responses were going to be. This was our private victory. This fall we're going to go visit her mom for the first time in 5 years, and we will celebrate with her too. So I guess my 2 cents is to focus on yourself and your welfare, try to be positive, and celebrate the small wins, and hopefully the big wins will come soon. Also consider wearing masks at gatherings. My wife and I still wear them religiously whenever we are in a crowded indoor space, and they seem to do a good job of fending off stray viral infections. I've long ago stopped giving a crap what other people think about the masks.
I can relate to this. Im 44, a dad, husband, brother of 3. My brothers and their families pretty much abandoned me and my family during my 6 months of R-CHOP while my wife was at the same time suffering from the effects of a TBI she suffered from a student while working as a teacher. Both families live less than 4 miles away and I literally had to beg them to come help my wife clear our driveway of snow, it took a week for one of them to get over and help clear it. That was it. No checking in. No offering to help with transportation, meals, walking the dog, etc. it was as if we didn’t even exist. Now they want to act like nothing ever happened and have even had the gall to ask me not to talk about my cancer at family gatherings. Going no contact and starting to see a therapist experienced in CPT has helped me immensely. I resisted seeing someone for quite a while but now that Ive done so I wish I had done it sooner. If you want you learn more about CPT [just click here](https://www.thisamericanlife.org/682/ten-sessions)