What I Wish My Caretakers Knew
I want to preface this by saying I appreciate each and everything all of my caretakers did for me. Being sick was a new experience for me and those who took care of me. They couldn’t know everything. But this is about being honest, and honestly, there are some things that would’ve really helped during my journey.
I wish people would have listened. I mean really listened to me when I spoke. I tried to explain everything I was feeling. The loss of my hair, how tired I was, how ANGRY I was. But it was met with 'it’s just hair' and 'you should be more positive.' I was also told 'I know you said you didn’t want to talk to anyone, BUT-' and it made getting better even harder.
I just wanted to be validated. Yes, it sucked. Yes, I lost my hair and that sucked too, that was such an important part of how I saw myself. I was allowed to be angry, I didn’t have to be strong all of the time.
Don’t call me strong, I’m just trying to survive
People meant well, but I grew to loathe the word strong. I actually cut it out of my vocabulary, I refused to use it. I was trying to not die.
I wasn’t a hero, I didn’t want to be strong, I wanted the pain to end. I wanted to be myself again. That’s the other thing, my brain rewired a lot of itself to help me cope. I was a bundle of tangled strings inside, my head felt like there had been crumpled-up newspaper stuffed inside. There was so much going on people couldn’t see.
I was so lonely
This is partially my fault. I did want to be alone for a long time. I didn’t want people to see the way I looked, and I was exhausted. I didn’t have the energy to be around people and be polite and engaging. I didn’t want to invite people over and then just ignore them.
I had three roommates at the time. They did their best to take care of me. But I wish I would have been able to spend more time with them. I was a bit hesitant to ask, I didn’t want to be a burden. (You know how that goes.) I think they also didn’t know how to be there for me in that way. It probably made them uncomfortable.
I heal on my timeline, not anyone else’s
I was so angry for so long after chemotherapy and radiation. My roommates didn’t understand. I couldn’t let go of it because I was still processing everything. Why did I have to be sick again? I lost my hair and gained a lot of weight, I had to accept that. My life was set back, I had to accept that too. I could still remember and feel being bolted down by my head for treatment, I had a lot of PTSD. OF COURSE I was angry! You can’t just get rid of anger, you have to work through it. I had a lot of working and sorting through my thoughts and feelings to do.
I was also still tired, I had a lot of anxiety about work. I couldn’t hold down a job. I wasn’t lazy, I wasn’t milking anything. I needed help. I was trying to make other people understand, and they couldn’t the way I wanted them to because they had never had cancer. I was alone again, in my head. I was so afraid of leaving the house. I needed to, I was starting to get hives from the sun because I wasn’t in it enough. But I needed to hermit a bit. I was so broken inside. I felt like I was being rushed to heal because it was what people thought was normal. “You’re better now, why are you still upset?” Because I was traumatized.
It still upsets me that people just didn’t understand, and I had to smile and nod and try to be polite when all I wanted to do was scream and cry. But I hope that someone out there will learn from my story and not let it happen to someone else.
Have you met another blood cancer patient?