Young.. and very guilty - what can I do now?

lostlamb

Hi all,

I wish I found this site earlier, it would have helped me realize that many of the emotions I've been feeling are normal and things perhaps wouldnt have gotten to the stage they are right now. I'm sorry this might be a long story, but I would really like to vent to people who can understand. 

I'm 26 and my boyfriend (27, ex now) was diagnosed with stage 3b non-hogkins lymphoma in july last year. It was all very sudden, we were on the best holiday of our lives when he discovered a lump behind his right ear, and we went from thinking it's just a salivary gland infection to a finding out it's an incurable cancer in just a matter of weeks. We've known each other for 1.5 years, he's not the kind of person to open up much because he was always afraid of getting hurt, but I do know he loved me when he was diagnosed. He was also just offered his dream job (which he unfortunately then had to turn down because of the cancer), so you can imagine how crushing the news was to him.

When he was first diagnosed, he offered me an 'out', saying it's not something I signed up for and it would hurt much more if I left later. I constantly resassured him I would not leave, because the thought has simply not crossed my mind. I want to be with him for this journey and I'm 100% sure about that. After his CHOP-E chemotherapy started, he broke up with me several times, the first few times because he couldnt understand why I was still staying with him (he's a very prideful person) and later because he didn't love me anymore and I was wasting his time. I didn't know what the truth was, but I decided I wanted to be with him anyway so he asked if I could just be a friend. I was upset, but I said yes - even if he doesn't love me I still love him. He has no help from family - his mom flew to take care of him but he chased her away quickly - and I wanted to cook meals with him at least so he'd eat a little healthier. Else it would just be pizza delivery everyday.

For the past year, I went over to his place 5 days a week (3 days after work, and the entire weekend) to have meals and spend time with him. I live with my parents an hour away so that put a lot of strain on my family. My family gave me hell for months, my mom's stance was to leave him 'because he is dying anyway' and even till now I resent her for that. I rejected all social interactions - because I just couldnt leave him alone. He was such an outgoing person and seeing him confined at home for months alone just broke my heart. I just wanted to be there with him. He also told me how he feels guilty for feeling that way, but seeing his friends go on holidays and lead their normal lives just reminds him of how different he is. I can completely understand that. 

But as the months passed, my presence became more and more unwelcome to him. We barely talked. I texted every single day to ask "Can I come over today?", if the answer is yes, I do. If not then I don't. I've tried not to take it personally, he said he's not in the mood for texting anymore but sometimes it's just hard when I see how nice he is to his friends. On some days when his friends come over, I become completely invisible. He makes plans with them, and then conveniently leaves me out even when I'm sitting in the room. I felt less than a friend, if I ever said anything he would just say, 'that's why I told you we should break up'. He also started telling me things like, 'I think you should not hang out with my friends, you bring the morale down.' This is completely not true, I've known them for more than a year and I know they like me a lot. Once, my mom attempted suicide and I was stressed about it. He looked at me blankly and said, 'Maybe it's better if she did.' Something in me died that day.  The only thing that really kept me going was the solace that I was helping him in some bit, if anything. Many nights I would wake up to him suddenly hugging me and crying because he thinks he does not have time left. I am the only one that he shows any vulnerability to, and actually talks to him about his cancer. It made me feel a little useful in that way.

I am guilty because with all that pushing away and emotional distancing, I caved. When his chemo ended, he started being cheerful and nice to everyone (but me) and I felt like I was truly wasting his time and being selfish. I volunteered to leave and he told me he liked seeing me but I should have a long time ago, and that he was being distant because he didnt want me to get the wrong idea. He had a break of 1.5 months before embarking on his stem cell transplant in Feb. During his break, his friends told me he was subsisting on pizzas for almost every meal - but by then he didnt let me back in anymore. I offered to help again but he was adamant in keeping me out of his life. He went through a very optimistic phase nearing the end and welcomed all visitors at the hospital during his transplant - everyone but me. I went everyday to the hospital on my own, never inside the ward, but just to check up with the nurses, because even though all his friends had grand plans to visit at the start, few of them kept to it. There were stretch of days when he would be completely alone. If anything critical happens, no one would even know. He made sure not to leave any emergency contact number - that is how independent and strong he wants to come across. Fortunately despite some fever scares, he is now discharged and back at home, mostly alone of course. Two of his housemates/friends are on holidays. He's rejected my offer to help with meals, in fact, he's stopped replying me completely. Once again, his friends can all visit, just not me. I'm not even worthy as a friend to him now. I've not seen him in weeks, he doesn't let me.

I've been crying every day for months, sometimes I don't even know the reason why. And I often feel guilty for doing so - if the patient himself is not complaining, what right do I do? I'm not the one facing death, undergoing chemotherapy, losing my self-identity, image and strength. Maybe I'm just not strong enough? And I was becoming a burden to the patient? And I constantly wished I could be stronger, so I could be of some use to him.

I am also very angry. I am sick of his friends saying that they care, that they will do stuffs, but never really getting down to it. I've read about every medical journal there is out there about his cancer, compiled summaries of it and his treatments and sent them to all his friends but they don't even read it. They don't know anything about his cancer at all. In the end, everyone came to me for updates on his stem cell transplant because they found out I was secretly going on my own and asking the nurses. I am sick of his housemates saying they will be there for him, but 80% of the time when I'm over I barely see anyone at home, and they're always on their holidays. I am sick of them asking 'how are you, i really admire you' but not really meaning it. I don't need their admiration, I just want them to do something for him. And I'm angry that they have the opportunity to help him, because he allows them to, but they're not. I wish so badly I could be in their shoes. I know that they do care for him, but how much? I dont really know.

I'm also angry because.... as much as I dont want to take things personally, I don't understand his behavior. I keep going back to figure out if I've done things wrongly, if I wasn't accepting enough, if I was simply meant to be strong and a positive influence? If I was plain happy around him all the time, then he would have let me stay like he let his friends. I've really.... tried. I know this sounds selfish but sometimes I wonder how he could be so heartless to just keep me out. I am happy everytime there is good news surrounding his treatments but I'm also selfishly sad that I am irrelevant to him in all this. I do not regret anything I've done for him, I truly care, but sometimes I just wish it can amount to something. Just something.

It is so tough because everytime I tell my friends, they just tell me to leave him and move on but they cannot see why I simply just can't. They think I'm just a clingy ex-girlfriend to someone who's not worth it. But I know deep down he's not that kind of person, it's not his fault that cancer just came and took so much away from him - and I know he's just as confused and lost as I am, if not more. I am afraid that he's pushing me away for the wrong reasons - because he doesnt want me to watch him die and have to grieve through that. He said that many times. But on other days, I also feel like he has genuinely lost feelings and simply does not want to be associated with me anymore. I am afraid that he will die anytime soon, and that in his last days no one will be there for him. Even if he acts all strong and happy, I know that it's also just a defense mechanism and he's just afraid to admit that he's scared too.

I've reached the limits of what I can possibly do, as an ex-girlfriend, friend or someone who just cares for him. 
I wish I've never left, it would hurt to carry on, but that would be nothing compared to the guilt I feel now for leaving him alone, and that constant worrying and sadness that he might also die any moment, though I hope not. The transplant gives him a 50% chance of living 5 years, but with his dietary habits I'm not so sure. I also know that if he relapses, he will not seek any more treatments. He has been clear on this from the start. I don't know what to do - if moving on is what he wants for me, do I just give up and surrender to this cancer that has taken so much away from us? I am so afraid the next time I hear from him is about his death.

 

Noellesmom

And it may be, Sweetie

I've learned the one thing you can't save people from is themselves.

There was another poster not long ago with much the same story. Some seriously ill people make decisions that are not comprehensible. 

The only thing you can do is respect his wishes, lamb.

And take care of yourself. Remember you are grieving. Be gentle with yourself.

lostlamb

Noellesmom said:

And it may be, Sweetie

I've learned the one thing you can't save people from is themselves.

There was another poster not long ago with much the same story. Some seriously ill people make decisions that are not comprehensible. 

The only thing you can do is respect his wishes, lamb.

And take care of yourself. Remember you are grieving. Be gentle with yourself.

hello

Thanks for replying, Noellesmom.

I am trying to recognize that there is nothing I can do anymore, except to back off. If he wants me away, then I guess he won't really be happy if I hang around too. I get angry sometimes, because why me? why me when I've consistently been there while all his friends watched on. Why is it that I am being targeted for actually putting in effort and now he welcomes all of them in his life so happily? It's one thing to push me away because I was close to him, but to treat everyone but me nicely. And then I start thinking of how he's facing death and feel guilty for my anger. No matter how you look at it, he doesn't win.

How do I deal with knowing that he might die anytime soon? It could be weeks, months, years. I hope it will be years, of course. But just knowing that it might be anytime soon, and that I could have done something in the meantime instead of staying away trying to heal myself....

lostlamb

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Catholic

The comment:

The comment:

"I've learned the one thing you can't save people from is themselves."

is completely spot-on.  I couldnt have said it better.

You say "But I know deep down he's not that kind of person" and I agree with that statement.  Then you say "But on other days, I also feel like he has genuinely lost feelings and simply does not want to be associated with me anymore."  The back-forth will drive you nuts and as the cancer progress, there will be more times that you feel like "he has genuinely lost feelings" then "deep down he's not that kind of person".  Lets say its 50%/50% right now; 50% of the time he is decent and 50% he lost feelings.  Eventually, it will be 99.9% lost feelings and a rare, out-of-the-blue comment of appreciation.

My advice is to take a break for yourself.  Take a vacation; any type of break.  You are taking on the role of a caregiver and it's not an easy job and you have to take care of yourself.