Helping a Lymphoma Survivor with Guilt

botanicallover

Hi. So I know this discussion forum is mostly for survivors themselves but to be honest I'm quite desperate.

My boyfriend is a non hodgkins survivor. He's now 22 and has been in remission for almost 2 years. I didn't know him when he was going through all of this which makes it even more difficult for me to know how to help him today.

He deals with severe depression and lately has had extremely bad survivor's guilt. He found out that a young boy he knows who also had lymphoma and was in remission just got rediagnosed and will likely not make it this time. He feels extremely guilty, as if he should be the one who dies and not the boy, and that he has been given a second chance but is wasting it (he's not, he's in college getting his BA). I knew he dealt with guilt prior to this, but never like this. He also has a friend who was going through chemo at the same time he did who got rediagnosed and is now going through chemo again, and she's been posting about it a lot which reminds him of how awful he feels about being able to live his life cancer free when she doesn't get to do the same. He was depressed for some time before he was diagnosed but it went away until his diagnosis. I don't know how to help him, he can't sleep at night thinking about the young boy and says he has had thoughts of suicide. The only thing he does to try to help himself is he smokes a lot of weed, which bothers me because I know he's just using it to cope and isn't resolving anything but if that's what he needs to do to get out of bed in the morning, so be it. I know he needs to seek help, that's a different story but if anyone knows how I can be of help to him, you have no idea how much I would appreciate it.

Yesterday he was crying about how awful he feels and how he can't stop thinking about it and also about his fear of recurrence and how that would affect me and his family. It's killing me seeing him in so much pain and I have no idea how I can help him, there is no way for me to understand the pain he's in so I feel like nothing I say/do will be able to help without some kind of insight.

How have you dealt with depression after treatment? What are some ways to cope with survivor's guilt? If you've had a significant other go through something like this, what did you do to try to help that worked?

 

Thank you in advance,

You are all very brave

ShadyGuy

Mixed emotions

Such a young person confronting the grim realities of life and death is subject to a whole range of often confusing emotions - fear, guilt etc. Time will help but staying busy and off the topic may help as much as anything. Helping others, not necessarily cancer patients, is a good way to stay off topic. Its a hard situation to deal with. Hopefully some of the people on here can help with suggestions. I tend to say "suck it up and carry on" which is sometimes considered insensitive. However In the southern mountains where I come from, life was sometimes very hard. People there like to say "the more you stir a cow pie the worse it stinks". Thats why I think staying occupied with other things may help. But alas we are all different. Hope you find what works for him. All my very best wishes. He is so lucky to have you in his life!

Rocquie

Botanicallover

I'm glad you have decided to join our group and I hope we can help you. I'm so sorry your boyfriend's emotions are all over the place and I honor you for wanting to help him.

I agree with you that he really needs to talk to someone, in a professional setting. Maybe he could start with his family doctor or his oncologist? Does his oncology office have a Oncology Social Worker? Is there a member of his family or a trusted friend you could talk to? I do know that when a person talks about suicide, they should be taken seriously.

My advice to you is to educate yourself about lymphoma, especially since you weren't around when he was going through treatment. There are a number of excellent websites. It will really help if you know what type of lymphoma he had. There are many, many types of lymphoma, some are curable and some are not. All are treatable. The lymphoma I have--follicular--is not curable. Many people with it have many recurrances and it is treated as a chronic disease (not unlike diabetes). 

I wonder why he thinks the boy he knows that is experiencing a reccurrance is not going to make it this time? The fact is that we are all going to die. Receiving a cancer diagnosis puts it right in our face and it gives us a chance to realize what is really important in life and to live life to the fullest. There is much sadness in the world but there is also much beauty and joy. 

I wish you the best and please keep us posted on how things are going.

Hugs,

Rocquie

 

 

botanicallover

Rocquie said:

Botanicallover

I'm glad you have decided to join our group and I hope we can help you. I'm so sorry your boyfriend's emotions are all over the place and I honor you for wanting to help him.

I agree with you that he really needs to talk to someone, in a professional setting. Maybe he could start with his family doctor or his oncologist? Does his oncology office have a Oncology Social Worker? Is there a member of his family or a trusted friend you could talk to? I do know that when a person talks about suicide, they should be taken seriously.

My advice to you is to educate yourself about lymphoma, especially since you weren't around when he was going through treatment. There are a number of excellent websites. It will really help if you know what type of lymphoma he had. There are many, many types of lymphoma, some are curable and some are not. All are treatable. The lymphoma I have--follicular--is not curable. Many people with it have many recurrances and it is treated as a chronic disease (not unlike diabetes). 

I wonder why he thinks the boy he knows that is experiencing a reccurrance is not going to make it this time? The fact is that we are all going to die. Receiving a cancer diagnosis puts it right in our face and it gives us a chance to realize what is really important in life and to live life to the fullest. There is much sadness in the world but there is also much beauty and joy. 

I wish you the best and please keep us posted on how things are going.

Hugs,

Rocquie

 

 

Rocquie

Thank you so much for your response.

He told my a few minutes ago that he contacted his psychiatrist that he used to see back home and will hopefully be able to see him sometime this week, the only issue with that is that he only ever goes to see him when he feels he has no other options. I asked if he could see him on a regular basis but he said it's too expensive. I think he knows that he needs help and needs to see someone regularly too but he feels guilty about the money aspect of it because of how much money his parents already had to pay when he was in the hospital and then now with him going to university. It's hard with the whole seeing someone too because he currently lives 4 hours away from home so he'd have to either find someone here or go home which would be difficult.

I'm not sure what type of lymphoma he had, I just know it was non hodgkins and I'm not even sure what that means. I don't want to ask him about it in fear that it might make things worse, but I do think it would help me feel more comfortable knowing more about it. I've been considering reaching out to his mom lately just to talk to someone who knows him and see if she has any advice but I'm nervous about it since I've only talked to her a couple times. From what I remember him saying, he said that a lot of times the kind of cancer (not sure if he was referring to lymphoma in general or the specific type) can come back as a much more aggressive form or something.

I try to remind him that living his best life now might help him escape some of the feelings of guilt or that he's not doing anything with his second chance at life, but it doesn't seem to work because he's so paralyzed by his negative thoughts.

I can't tell you how much I appreciate your response, I've been feeling very alone with this and it's so comforting to hear back from someone who has been in a similar situation.

botanicallover

ShadyGuy said:

Mixed emotions

Such a young person confronting the grim realities of life and death is subject to a whole range of often confusing emotions - fear, guilt etc. Time will help but staying busy and off the topic may help as much as anything. Helping others, not necessarily cancer patients, is a good way to stay off topic. Its a hard situation to deal with. Hopefully some of the people on here can help with suggestions. I tend to say "suck it up and carry on" which is sometimes considered insensitive. However In the southern mountains where I come from, life was sometimes very hard. People there like to say "the more you stir a cow pie the worse it stinks". Thats why I think staying occupied with other things may help. But alas we are all different. Hope you find what works for him. All my very best wishes. He is so lucky to have you in his life!

ShadyGuy

I think that's a good idea. We only have a month left of school before we go back home for the summer so I think I might suggest that he tries volunteering somewhere to help keep him busy and give him a sense of purpose.

I'm the same way about things because it's the only way I've found to get through personal issues in my own life, but I feel like I have no right to tell him anything like that because I've never dealt with anything like that before. I'll definitely suggest some things to him to help him stay busy!

Thank you so much, I really appreciate your response.

lindary

Survivor depression

Reading about your boyfriend was like reading about a nephew of mine except there are a few differences I know it's not him.

My nephew was still in high school when he was diagnosed in 2005 with some type of cancer, early stage. Don't remember what kind but he was already dealing with depression. Another member of the family who was in his early 40's had been told he had small-cell lung a few months before. This person died about 6 months after being diagnosed. 

My nephew survived his cancer. He would constantly post comments about how bad he felt having survived when his uncle did not. Every time someone posted about a family loss due to cancer he would start his comments all over again. When I was diagnosed with FNHL (almost 10 years after his) he went through it all again.  Constantly asking how I was doing, telling me he was praying that I wouldn't die, etc. I was keeping family and friends updated on my status but not him. Of course he heard from other family members and always assumed the worse. He is on anti-depressants but I am not sure he takes them like he should. Right now he has a girlfriend who make sure he stays on his meds. Like you she has her own issues but is very upbeat and positive. I hope her attitude does rub off on him. 

ShadyGuy

You cannot wallow in it

it is what it is. It may be good if this young man would come on here in person. Guilt is a very unproductive emotion. My advice to this young man: Its very hard to move on but its the only thing that works. Animals are wonderful. Volunteer at the local animal shelter. It is very rewarding and the dogs approach to life is wonderful. Learn from it. Take the summer off and walk a section of the appalachian trail. Its free and wonderful. You will meet great people. Get a kayak. With a kayak you can find wonderful secluded natural spots even in urban areas. Even though you are financially strained, give to others in more need. It will be returned tenfold. In short enjoy this wonderful world. As Rocquie said, we all die. Thats the human condition. Enjoy your remission. Its a gift. 

Catism

Been There, Am There...

Hi botanicallover,
I'm glad your boyfriend has you to be concerned enough about him to try and help!  I understand about survivors guilt, being that I've been fighting cancer actively for almost 30 years.  First ovarian cancer, now Non-Hodgkins Lymphoma.  I often wonder why I keep living with cancer and so many other loved ones and friends don't, as a result of cancer. 
I will say at least for me, it's not as simple as "getting your mind off it".  It's always there and affects a person deeply.  It's not that you don't appreciate the life you still have, it's that you don't understand why you're given more time and others aren't.  It's such a complex thing, I truly would recommend your boyfriend seek professional help, especially since he's voiced thoughts of suicide.
Please do give him this number 1-800-227-2345.  I believe that number is an American Cancer Society 24 hr help line.  They should be able to help him find mental health resources in his area.  Sounds like he needs help at a facility which offers payment on a 'sliding scale', meaning payment would be based on his income. 
Please keep us updated?