Feelings of a caretaker..

[I]I know a lot of you may not be a care taker or caregiver of a person with cancer but just felt I needed to vent in order to get it off my chest. My boyfriend has Hodgkin's Lymphoma and it's been the toughest thing for us to go through in our relationship, more so than other things. People act towards me like everything is fine and dandy and that I'm always ok. No one ever asks has to how I'm doing (especially at work). When he isn't there, they ask, "So how's josh doing?"..Half of the time I just want to say, "I'm doing ok thanks for asking". I just feel invisible towards others because I'm not the one with cancer. Sometimes I feel dead tired, other times I feel drained, other times I'm sad or worried when I'm at work and not at home and being able to be with him. But don't get me wrong, I have good days and am happy when things are going good or at least decent. The only people that seem to understand that I've talked to are people who their mother had cancer, or their spouse had cancer. Not even my parents seem to understand as to what I'm going through, especially when an event is coming up with the family and him or I can't make it for what's going on at the time. It just irritates me sometimes because it feels like no one (other than my boyfriend) gives a sh*t about me.

Thanks for listening & hope other people at least know or understand as to what I feel
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Comments

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  • Hi, I haven't gotten on here in a long time. My son has cancer. I don't know what it's like to feel as you do from others but I do know what it's like to feel these feelings from my son. Yes. He rarely asks me how I am (doesn't live w/ me so he wouldn't know) or even exchange pleasantries like people who love or like each other. But that's not why I'm writing. I want to offer solutions for you: 1. Imerman Angels - this is an amazing thing. You go online or call and they take your profile and match you with someone who has gone through it who is very similar to you and that person becomes your Angel. They are there for you 24/7 (via text, email, phone, etc) and you will never find anyone like them. Lifelong relationship/bond. 2. Wellness Community or Gilda's Club (same) - they are unbelievably great. It's not about being mired in the cancer thing with other people. It's about having people who genuinely care about you, not afraid to ask how you are and authentically listening to your reply and all sorts of resources there - free.3. Last but not least, I'm a huge advocate of telling people what you need/don't need and writing letters or emails to do this. Most of the time people suffer from either a lack of the empathy chip OR they suffer from a fear of making a mistake. I think it could help for you to reach out to your friends, family, colleagues, etc by writing them an email that says something along the lines of : Hi, I'm writing to you because you are my support in my life. You all know that Josh has cancer. So many of you have been so wonderful about helping us and I am so grateful for all of it. It's been a while since I reached out to anyone re: myself and how I'm doing with all this. People ask me what they can do to help and I need to say it. The biggest thing you can do is (pray, sending loving energy, light, fill in the blank w/ whatever it is that is the biggest thing they can do). Because I am his caregiver, I suffer from something lots of caregivers suffer from (so I hear) which is having people ask me how Josh is without asking how I am - feeling invisible to a certain extent. I know that often times people just don't know what to say or are afraid of saying the wrong thing. For me the best thing you can do for me is to just ask how I am and listen authentically for the reply so I know you care. I will try not to bend your ear complaining, but just to hear you ask will do my heart good. Will boost my spirits. Which makes me that much better a caregiver. If you don't hear from me it isn't because things are bad. It's just that I have so much on my plate. Ive heard some people tell their network this (which sounds kind of good): I would love to get your txts and emails wishing me well and asking how I'm doing and hope you understand if I don't reply. Doesn't mean I don't want you asking, just means I can't get to it and will when I can but very much appreciate just hearing from you and knowing you care" Something like that. People for the most part just need instructions. I hope something in here resonates and is helpful. I hope you reach out and get support that is better for you and you start to feel counted. You are such a blessing to your boyfriend. P.s. you could include something in there re: if we don't show for things or respond to invites, please keep inviting us so we aren't isolated when we can get out but understand if we are no shows or have to reject an invite it isn't because we don't want to be there. would love to have the free will to do so but this stupid cancer gets in the way sometimes. Good luck. HOPE.
  • I can't say that I know how you feel, as I'm the one with stupid freaking cancer. But I can say that after reading this, I contemplated what to tell you to try and give you some uplifting. I ended up running an errand with my best friend who for all intents and purposes has been my caregiver for about three months. Although he'd never tell me I'm sure he feels the same way you do sometimes. We ran into some friends at the store and knowing my recent-ish diagnosis they naturally asked how I was. I smiled, looked and Ian and said "Well, we're hungry! So you can ask him how he's doing while I look for lunch." I haven't seen the smile he gave in a long time. So thank you for that. I guess we often kind of forget how taxing this is on our caregivers. Unfortunately, just like someone with cancer no one understands unless they've been in your shoes. The whole cancer journey is unique and never really understood from the outside. Just know that you're appreciated. I appreciate you! And what you do. I mean, yes cancer is a pain and it's a horrid thing to go through but watching someone go through treatments and doctors and meds, all while not being able to do anything must be just as bad. I hope a sunshine-y day comes to you soon. Ever wanna vent to a cancer patient about how lame we can be I'm around ;) Peace and calm to you RedCheshire.