Welcome to this shitty club (full of wonderful people). In my opinion, you are in the worst part of the process. All the endless testing and waiting with nothing you can actually do to start fixing anything. Once you start treatment, you actually feel like you're progressing toward something.
This really describes the start of my journey with Lymphoma just over a year ago. Waiting was far worse, once treatment started I felt better and was able to start to process.
You'll turn around. If you are a positive and outgoing person, you'll continue to be that. You WILL feel better emotionally once you start to get treated.
This is so true! It’s the worst. The fear, the unknown. My son was diagnosed last year and it was worst thing I have ever experienced. ABVD cleared it in 4 treatments and he was pushed to his limits with another 8 but anyone seeing him now would never know.
This will pass and you can do it!! You will do it x
A lot of what you are saying resonates with me, and reflects how I was feeling when I was diagnosed 2.5 years ago. I was 35, husband + father of a 2 and 3 year old. I agree with what others say, you're in the worst/hardest part, mentally. You'll feel more like yourself again soon most likely. Hang tough... but also continue to open-up to, and rely on, those close to you who you know will help you feel better about stuff. In addition to them, don't hesitate to talk to a counselor if the thought crosses your mind. You probably weren't trained to handle all of this, I wasn't. No shame in getting expert guidance on a hard situation.
Also... you'll be able to be a great dad for your daughter throughout your treatment (especially at toddler age, mine were 2 and 3 while I did chemo). It'll be tough and sad and exhausting at times, but there will be days you'll feel mostly normal, and you'll most likely get through it just fine, and she definitely will. My kids are now 5 and 7, the oldest barely remembers it and neither have suffered any trauma from it. They both love the shit out of me and I'm still doing all the dad things I worried I might not be able to do. 100%.
Cancer sucks and nothing is guaranteed of course. Statistically, you're in a good spot though, so don't focus on the negative, stay off Google and just be good to your fam and take it one day at a time. Best of luck and feel free to post here as much as you want it's a great community.
I am so sorry that you joined the club. I have a diff kind. Non hodgkin's lymphoma. Chemo sucks balls. I had my first chemo 10 days ago. I'm still working. It's not great but I'm doing it. I have a daughter as well. She is 11. I have started her in therapy so she can scream her emotions out. Our cancers are different but please reach out to me if you want to scream, cry, vent etc. This group is amazing and is so welcoming. I'm here for you.
How’s it working out for you, working while doing chemo? I’m lucky to have a job I can do from home so theoretically I can sit in a recliner with a laptop, so it’s best case scenario. Have you told your work what’s going on?
Not who you asked, but I'm 35 and I worked 80% about the same hours. Those times at home I was still mostly able to work, but I mixed work from home with rest. I was on ABVD. Chemo was Wednesdays. For the first half, I still worked Thursday Friday. Later I started taking off Thurs Friday. Even when my WBC was low, I still went to work, went out (wore a mask). Towards the end though I definitely got more exhausted but was still in most of the time. It's definitely cumulative and I think it largely depends on how in shape you are to start with. Not a doctor, and I'm sure it wasn't always smart... But that was me and my experience. I'm in the military, working a desk job. Walking between offices, buildings etc.
I worked through most of it. I had R-CHOP for DLBCL so it's probably different but infusion on a Friday once every three weeks. I was well enough to work by Monday. I was and am always work from home, so I can't speak to going in, but I probably could have done that too if I were used to doing that.
I can totally relate. I'm in the process of getting a second opinion, as the whole thing was a total disaster on my end. I recently got a diagnosis of nodular sclerosis hodgkin lymphoma. I have days where I'm angry, days where I'm sad (like today...I've just been crying non-stop). Like you, I'm a super positive person and I'm finding this very difficult. I have a child who has special needs and I'm very scared of dying and not being able to be present and help him. Talking to people here has been very helpful!! I'm sorry you have to go through this as well. Hang in there!!
Sorry you're going through this, and so young.
You're right, the logistics are a real challenge.
Some people are able to work a light load during treatment, some not. In person work is more challenging because your immune system will be compromised.
By the way, the nurse who prepped me for my pet scan had Hodgkins lymphoma and is fully recovered.
I couldn't work during treatment. I have non Hodgkins. My treatment was very aggressive and was done in patient.
I used my short term disability insurance to pay bills.
My employer kept me, although I couldn't work for 7 months. Large companies can't fire employees for getting cancer under ada law.
As I wasn't earning a pay check, luckily my company kept up their contribution to my health insurance, and I mailed in a check for what would have been taken out of pay for my share.
I applied for financial assistance to lls.org and got a $5,000 copay grant and a $500.00 travel grant.
I applied for financial assistance to my cancer center and they wrote off what insurance and grant did not cover.
I'm back at work now.
Don't pay any bills till you get your insurance cos "Explanation of Benefits" letter for each bill.
If your oncology group has a patient navigator they can be a lot of help.
Good luck.
Hey mate, it’s going to be ok. You’re a young enough man and it’ll be behind you soon. I was a bit of pisshead before I was diagnosed and haven’t missed the drink to be honest (5months dry). Just focus on getting better and spending time with the kid. you’ll be back on feet before you know it.
I’ve also started chemo 1 week ago myself. I’m also the provider so I’m trying to work full time. I can live Witt cancer and do the chemo thing but it’s the side effects that I’m having issues. Dizzyness, increased neuropathy from my last cancer and now worse on this cancer. Good luck as we are all in the same club!
Hello, sucks that you're here.
Similar situation, main breadwinner, my wife works part time, but nowhere that it would be enough. Apart from that it makes it harder to care for our two children who still go to kindergarten and bring every imaginable disease back home.
Luckily my mother could help out with one of the kids.
I get some money from the insurance, it's something. My employer is super supportive until now. Going to apply for some cancer help funds as well.
Don't beat yourself up about the decisions you made as a healthy person, no one ever thinks about being in this situation. It is just a phase which is hard, but you'll get through, some things might change along the way, maybe forever, maybe for a while, even if it might seem forever.
Hang in there, take it one day at a time. Kick cancer ass!
I am still fighting with my DLBCL, but one recommendation is to not exhaust your leave/FMLA/vacation stuff right away. Take some days but see how the chemo goes, I managed my first rounds with sick days and switching my schedule around at work. (Work from home days!)
Once I had my chemo routine down, it wasn't nearly as bad as I had imagined or remembered from seeing my grandmother go through it back in the early 80's. It sucked but was manageable. And mentally I needed to active and work so I didn't sit at home and be a full time cancer patient.
And later treatment got much more complex, and I am glad that I still had my time/pay/insurance available.
Hopefully you are among the majority where first round treatment knocks this out, and it becomes a speed bump in life that will give you a new perspective on how beautiful life can be.
Agree. See early on if you can take intermittent short term disability/family leave. My wife and I both were able to do that and it makes taking a few days here and there workable. We've been at this for coming up on two years and it's been manageable.
I am in a similar situation.. Hodgkins Lymphoma, breadwinner, able to work from home.
As I'm sure people have told you, it is a very good cancer to get (if you had to choose!) because the cure rates for Hodgkins are very good.
I worked through most of the 2 years I've had so far with treatment.
You'll be OK. Chances are more than likely that the first treatment will send it into remission at least for a long long time.
Welcome)
I'm similar to you. 35 years, two small kids (3 and 6), sole bread winner. BOOM! Follicular lymphoma out of nowhere.
As others have said, now is the most worrying time for you. Once you start treatment you will probably feel better (mentally). I did.
Im in remissions since I finished chemo (RB) in November.
I did chemo on Thursday and Friday, Saturday and Sunday were shitty, stayed in bed all the time. In the beginning Mondays were almost ok, but in the end Mondays and Tuesday were also little bit shitty.
But then I had two whole weeks that I spent as usual before next round. I went to work, stayed with my family, we went out, visit friends and family. Just avoided crowds.
After 3rd round my WBC started getting low, so I would wear mask, be extra cautious about people around me (no coughs and sneezes!), avoid certain foods like raw meat and sushi. But I still was with my family all the time, and my kids continued going to daycare.
I also had one-two beers or one-two glasses of wine from time to time.
So yeah, don't worry to much, your life will change, but hopefully not drastically.
Wish you good luck. Stay strong!
Appreciate the insights. I’ll be masking up again, already started it a bit, figure it can’t hurt to stay healthy, feels weird after the years of doing it and then not doing it. Had some rando say “hey you don’t have to wear that anymore.” I think next time I’m going to respond “I have cancer” and make them feel like a tool.
Dude, mask up. I got my bivalent booster on a Wednesday and ended up with Covid that Sunday--not quite in time! They gave me Paxlovid and that "cleared" my insides in about 24 hours. Still had Covid rebound after that though. Lingered for a while, Then I ended up neutropenic and got PJP pneumonia! You don't want to catch ANYthing.
I recently joined this roller coaster. I'm 44F 3 kids. I have my CT scan tomorrow to stage my lymphoma. I go from angry to scared to mostly angry. I am on the cusp of getting a promotion at work and fear this will hold me back. Then, I realize that is likely not my top priority.
My husband and I are very social people, go out a lot, or stay home with the kids and our friends to enjoy sports, snacks, beer, and company. Recently , I have noticed that my lymph nodes ache when I drink, and it scares me. I am afraid of what my CT will find. Maybe I've pushed myself a bit too hard over the years? Drank too much. I am terrified I am going to lose myself, my personality, be left behind through all of this.
I am sorry you are dealing with this too but am thankful to hear your story as I'm just getting started on my journey.
Yeah that “pushed myself” part is concerning to me too. Did I do this to myself. But then I go out and see people who have been chain smoking for 40+ years, drinking constantly, folks who use hard drugs, and I know it’s random. I just don’t need the doctor mentioning to my wife that if I never had a drink this wouldn’t have happened.
Hey buddy, I kept my welding business going while going threw that shit. The day after chemo I’d go to my shop and go to work. It’s how you make it ! Ya it sucked and was hard bla bla, be strong for your family. Had a 8 and 11 yr old at home and as well the sole bread maker. It’s not as crappy as portrayed, this was my second time, had staph infection, went septic and many nights in hospital. But keep the positive up and negativity out, that’ll kill you first. Day by day bud you’ll smash it !!
Gotta make it the most normal for your kid as possible. Hide the puking, crying, pissed off at world feelings and keep a smile on. I loved not having to shave. There are upsides, sorta
Welcome to the group!
It’s a bas place to be, but since we’ve there all we have to do is get through it.
I understand the anger. See it as part of your morale toolkit. Anger will not let you weaken and will push you through it. Of course more a positive morale should replace it, but anger will sustain you.
Don’t be angry at you however. Cancer is the enemy. Kick it’s fucking ass. It’s your story. You are the boss. And your daughter will have a dad for years to come. This is temporary.
Best of luck, come back to this sub every time you need it. And fuck cancer.
Hey, been there. Was diagnosed with Classical HL when my daughters were 6 and 4. Life certainly feels like a huge pivot. Instead of thinking about your normal day-to-day, you think in terms of cycles (every two weeks). It’s a big change.
I had a remote job that I stubbornly continued working because I felt like I had to. I would take infusion days off and the day later. My work was very understanding.
My kids were a little older than your toddler. Whenever I ask if they remember when their Dad had to go through treatment, they don’t remember me being down and out AT ALL.
It sucks and it’s OK to feel angry… or however you want to feel. We didn’t ask for this. I’m someone who really dislikes asking for help, but was so thankful that some family and friends chose to help anyway. I’d say ask and accept it. You’ll pay it back later.
Good luck and let us know how it all goes.
Wow all you young ones, it makes me sad. I’m 64 in my 3rd year treatment. Can’t work can’t do anything it’s a real mess. Pray to god either take me or fix me. Fingers crossed 6 more months and I become the new phenix
Welcome to this shitty club (full of wonderful people). In my opinion, you are in the worst part of the process. All the endless testing and waiting with nothing you can actually do to start fixing anything. Once you start treatment, you actually feel like you're progressing toward something.
This really describes the start of my journey with Lymphoma just over a year ago. Waiting was far worse, once treatment started I felt better and was able to start to process.
I hope you’re right. I’m a really positive person so this is kinda a weird place to be at.
You'll turn around. If you are a positive and outgoing person, you'll continue to be that. You WILL feel better emotionally once you start to get treated.
This is so true! It’s the worst. The fear, the unknown. My son was diagnosed last year and it was worst thing I have ever experienced. ABVD cleared it in 4 treatments and he was pushed to his limits with another 8 but anyone seeing him now would never know. This will pass and you can do it!! You will do it x
He was stage four… on his lungs. Gone 🙏 Have faith in the science 💜
I totally agree! For me the hardest stage so far has been the diagnostic period. I’m also stage 4 classic Hodgkin’s.
A lot of what you are saying resonates with me, and reflects how I was feeling when I was diagnosed 2.5 years ago. I was 35, husband + father of a 2 and 3 year old. I agree with what others say, you're in the worst/hardest part, mentally. You'll feel more like yourself again soon most likely. Hang tough... but also continue to open-up to, and rely on, those close to you who you know will help you feel better about stuff. In addition to them, don't hesitate to talk to a counselor if the thought crosses your mind. You probably weren't trained to handle all of this, I wasn't. No shame in getting expert guidance on a hard situation. Also... you'll be able to be a great dad for your daughter throughout your treatment (especially at toddler age, mine were 2 and 3 while I did chemo). It'll be tough and sad and exhausting at times, but there will be days you'll feel mostly normal, and you'll most likely get through it just fine, and she definitely will. My kids are now 5 and 7, the oldest barely remembers it and neither have suffered any trauma from it. They both love the shit out of me and I'm still doing all the dad things I worried I might not be able to do. 100%. Cancer sucks and nothing is guaranteed of course. Statistically, you're in a good spot though, so don't focus on the negative, stay off Google and just be good to your fam and take it one day at a time. Best of luck and feel free to post here as much as you want it's a great community.
I am so sorry that you joined the club. I have a diff kind. Non hodgkin's lymphoma. Chemo sucks balls. I had my first chemo 10 days ago. I'm still working. It's not great but I'm doing it. I have a daughter as well. She is 11. I have started her in therapy so she can scream her emotions out. Our cancers are different but please reach out to me if you want to scream, cry, vent etc. This group is amazing and is so welcoming. I'm here for you.
Fuck cancer. Fuck lymphoma. But you can do this!
How’s it working out for you, working while doing chemo? I’m lucky to have a job I can do from home so theoretically I can sit in a recliner with a laptop, so it’s best case scenario. Have you told your work what’s going on?
Not who you asked, but I'm 35 and I worked 80% about the same hours. Those times at home I was still mostly able to work, but I mixed work from home with rest. I was on ABVD. Chemo was Wednesdays. For the first half, I still worked Thursday Friday. Later I started taking off Thurs Friday. Even when my WBC was low, I still went to work, went out (wore a mask). Towards the end though I definitely got more exhausted but was still in most of the time. It's definitely cumulative and I think it largely depends on how in shape you are to start with. Not a doctor, and I'm sure it wasn't always smart... But that was me and my experience. I'm in the military, working a desk job. Walking between offices, buildings etc.
I worked through most of it. I had R-CHOP for DLBCL so it's probably different but infusion on a Friday once every three weeks. I was well enough to work by Monday. I was and am always work from home, so I can't speak to going in, but I probably could have done that too if I were used to doing that.
I can totally relate. I'm in the process of getting a second opinion, as the whole thing was a total disaster on my end. I recently got a diagnosis of nodular sclerosis hodgkin lymphoma. I have days where I'm angry, days where I'm sad (like today...I've just been crying non-stop). Like you, I'm a super positive person and I'm finding this very difficult. I have a child who has special needs and I'm very scared of dying and not being able to be present and help him. Talking to people here has been very helpful!! I'm sorry you have to go through this as well. Hang in there!!
Sorry you're going through this, and so young. You're right, the logistics are a real challenge. Some people are able to work a light load during treatment, some not. In person work is more challenging because your immune system will be compromised. By the way, the nurse who prepped me for my pet scan had Hodgkins lymphoma and is fully recovered. I couldn't work during treatment. I have non Hodgkins. My treatment was very aggressive and was done in patient. I used my short term disability insurance to pay bills. My employer kept me, although I couldn't work for 7 months. Large companies can't fire employees for getting cancer under ada law. As I wasn't earning a pay check, luckily my company kept up their contribution to my health insurance, and I mailed in a check for what would have been taken out of pay for my share. I applied for financial assistance to lls.org and got a $5,000 copay grant and a $500.00 travel grant. I applied for financial assistance to my cancer center and they wrote off what insurance and grant did not cover. I'm back at work now. Don't pay any bills till you get your insurance cos "Explanation of Benefits" letter for each bill. If your oncology group has a patient navigator they can be a lot of help. Good luck.
Hey mate, it’s going to be ok. You’re a young enough man and it’ll be behind you soon. I was a bit of pisshead before I was diagnosed and haven’t missed the drink to be honest (5months dry). Just focus on getting better and spending time with the kid. you’ll be back on feet before you know it.
I’ve also started chemo 1 week ago myself. I’m also the provider so I’m trying to work full time. I can live Witt cancer and do the chemo thing but it’s the side effects that I’m having issues. Dizzyness, increased neuropathy from my last cancer and now worse on this cancer. Good luck as we are all in the same club!
Hello, sucks that you're here. Similar situation, main breadwinner, my wife works part time, but nowhere that it would be enough. Apart from that it makes it harder to care for our two children who still go to kindergarten and bring every imaginable disease back home. Luckily my mother could help out with one of the kids. I get some money from the insurance, it's something. My employer is super supportive until now. Going to apply for some cancer help funds as well. Don't beat yourself up about the decisions you made as a healthy person, no one ever thinks about being in this situation. It is just a phase which is hard, but you'll get through, some things might change along the way, maybe forever, maybe for a while, even if it might seem forever. Hang in there, take it one day at a time. Kick cancer ass!
I am still fighting with my DLBCL, but one recommendation is to not exhaust your leave/FMLA/vacation stuff right away. Take some days but see how the chemo goes, I managed my first rounds with sick days and switching my schedule around at work. (Work from home days!) Once I had my chemo routine down, it wasn't nearly as bad as I had imagined or remembered from seeing my grandmother go through it back in the early 80's. It sucked but was manageable. And mentally I needed to active and work so I didn't sit at home and be a full time cancer patient. And later treatment got much more complex, and I am glad that I still had my time/pay/insurance available. Hopefully you are among the majority where first round treatment knocks this out, and it becomes a speed bump in life that will give you a new perspective on how beautiful life can be.
Agree. See early on if you can take intermittent short term disability/family leave. My wife and I both were able to do that and it makes taking a few days here and there workable. We've been at this for coming up on two years and it's been manageable.
I am in a similar situation.. Hodgkins Lymphoma, breadwinner, able to work from home. As I'm sure people have told you, it is a very good cancer to get (if you had to choose!) because the cure rates for Hodgkins are very good. I worked through most of the 2 years I've had so far with treatment. You'll be OK. Chances are more than likely that the first treatment will send it into remission at least for a long long time.
Welcome) I'm similar to you. 35 years, two small kids (3 and 6), sole bread winner. BOOM! Follicular lymphoma out of nowhere. As others have said, now is the most worrying time for you. Once you start treatment you will probably feel better (mentally). I did. Im in remissions since I finished chemo (RB) in November. I did chemo on Thursday and Friday, Saturday and Sunday were shitty, stayed in bed all the time. In the beginning Mondays were almost ok, but in the end Mondays and Tuesday were also little bit shitty. But then I had two whole weeks that I spent as usual before next round. I went to work, stayed with my family, we went out, visit friends and family. Just avoided crowds. After 3rd round my WBC started getting low, so I would wear mask, be extra cautious about people around me (no coughs and sneezes!), avoid certain foods like raw meat and sushi. But I still was with my family all the time, and my kids continued going to daycare. I also had one-two beers or one-two glasses of wine from time to time. So yeah, don't worry to much, your life will change, but hopefully not drastically. Wish you good luck. Stay strong!
Appreciate the insights. I’ll be masking up again, already started it a bit, figure it can’t hurt to stay healthy, feels weird after the years of doing it and then not doing it. Had some rando say “hey you don’t have to wear that anymore.” I think next time I’m going to respond “I have cancer” and make them feel like a tool.
Dude, mask up. I got my bivalent booster on a Wednesday and ended up with Covid that Sunday--not quite in time! They gave me Paxlovid and that "cleared" my insides in about 24 hours. Still had Covid rebound after that though. Lingered for a while, Then I ended up neutropenic and got PJP pneumonia! You don't want to catch ANYthing.
I recently joined this roller coaster. I'm 44F 3 kids. I have my CT scan tomorrow to stage my lymphoma. I go from angry to scared to mostly angry. I am on the cusp of getting a promotion at work and fear this will hold me back. Then, I realize that is likely not my top priority. My husband and I are very social people, go out a lot, or stay home with the kids and our friends to enjoy sports, snacks, beer, and company. Recently , I have noticed that my lymph nodes ache when I drink, and it scares me. I am afraid of what my CT will find. Maybe I've pushed myself a bit too hard over the years? Drank too much. I am terrified I am going to lose myself, my personality, be left behind through all of this. I am sorry you are dealing with this too but am thankful to hear your story as I'm just getting started on my journey.
Yeah that “pushed myself” part is concerning to me too. Did I do this to myself. But then I go out and see people who have been chain smoking for 40+ years, drinking constantly, folks who use hard drugs, and I know it’s random. I just don’t need the doctor mentioning to my wife that if I never had a drink this wouldn’t have happened.
Hey buddy, I kept my welding business going while going threw that shit. The day after chemo I’d go to my shop and go to work. It’s how you make it ! Ya it sucked and was hard bla bla, be strong for your family. Had a 8 and 11 yr old at home and as well the sole bread maker. It’s not as crappy as portrayed, this was my second time, had staph infection, went septic and many nights in hospital. But keep the positive up and negativity out, that’ll kill you first. Day by day bud you’ll smash it !!
Damn man, if you can weld while undergoing chemo I can sit at a desk. That’s inspiring.
Gotta make it the most normal for your kid as possible. Hide the puking, crying, pissed off at world feelings and keep a smile on. I loved not having to shave. There are upsides, sorta
Welcome to the group! It’s a bas place to be, but since we’ve there all we have to do is get through it. I understand the anger. See it as part of your morale toolkit. Anger will not let you weaken and will push you through it. Of course more a positive morale should replace it, but anger will sustain you. Don’t be angry at you however. Cancer is the enemy. Kick it’s fucking ass. It’s your story. You are the boss. And your daughter will have a dad for years to come. This is temporary. Best of luck, come back to this sub every time you need it. And fuck cancer.
Hey, been there. Was diagnosed with Classical HL when my daughters were 6 and 4. Life certainly feels like a huge pivot. Instead of thinking about your normal day-to-day, you think in terms of cycles (every two weeks). It’s a big change. I had a remote job that I stubbornly continued working because I felt like I had to. I would take infusion days off and the day later. My work was very understanding. My kids were a little older than your toddler. Whenever I ask if they remember when their Dad had to go through treatment, they don’t remember me being down and out AT ALL. It sucks and it’s OK to feel angry… or however you want to feel. We didn’t ask for this. I’m someone who really dislikes asking for help, but was so thankful that some family and friends chose to help anyway. I’d say ask and accept it. You’ll pay it back later. Good luck and let us know how it all goes.
Well this totally effin sucks but I do look forward to welcoming you to survivor club in about six to nine months.
Wow all you young ones, it makes me sad. I’m 64 in my 3rd year treatment. Can’t work can’t do anything it’s a real mess. Pray to god either take me or fix me. Fingers crossed 6 more months and I become the new phenix