Not mentally well- how to deal with the stress

You are absolutely not alone. I didn’t cry at my last infusion but the one before I cried the entire time all afternoon. I kept telling them that I’m just tired! I’m tired of doing this!

There is one nurse practitioner that I see and nobody is really that pleasant, TBH but twice I’ve talked to her recently and said look what about hospice care or palliative care or something because I can’t get the medication that I need, I’m in pain and I’m sick and tired of doing this.

Both times she told me that it wasn’t yet time and that I was cutting myself short, so to speak. I’m here at wow almost 6 AM feeling nauseous and nervous and in pain so it’s difficult to say this right now but I thanked her the last time I saw her.

Right now I don’t really know what I thanked her for but I think it’s because I don’t know anything well except that I can die at any moment which is a tremendous burden. It is so easy for people to say live like you’re dying, heh. Yeah enjoy every last minute. WTF!! Seriously, WTF! I don’t even know what to say to that.

I will say it’s really tough when people accidentally guilt us because when I found out I needed brain surgery and my surgical oncologist had told me that as long as it’s not in the brain bones or the blood, we can cut it out - but if it reaches those places then you are screwed. I recall well, I shut my phone off for eight months after I insisted upon getting some kind of timeline of how long I would live with or without surgery. I got a call and was told by a nurse that without surgery I wouldn’t make it three months and with surgery they had a really good feeling about me that I would make it six or maybe even seven months. This was several years ago.

What I mean about guilting us is that I talked to my father who lives eight hours away before I shut my phone off completely convinced that there wasn’t any difference at that time in three or six months and that I was going to just sit there and die. When I talked to him I said that I wasn’t going to have brain surgery and he started crying. You know, he’s a tough guy who never apologizes and never cries ever at least that I’ve ever seen or heard. He cried because he said I was quitting. I felt like - I have tears in my eyes right now - that was so unfair - to make me feel guilty about my dying.

He has said some really callous things and I’m not sure he even realizes it. He has said much worse than that because that I guess, is understandable from someone else’s point of view. I mean he has said things that make me feel like will he be able to get money back after I die like from my vehicle… These are things that I need to deal with because I still don’t know how to feel about some of that stuff.

I don’t think anyone can relate to that exact feeling of being made to feel guilty about being sick or especially about dying. By that I mean I think only we - as people in thi situation - can even begin to relate. Gosh I feel so sick right now.

I apologize that I don’t have something more positive to say. I feel like I should say something positive but I don’t feel it. I would think some kind of relief would be great like some verbal reassurance and I wish I could give it to you. I definitely understand.