I’m having a cancer patient day. I’m tired, and not tired like I need a two minute breather and a cup of coffee. A lot of people think they understand what it’s like to have cancer related fatigue. You probably have no idea.
I woke up this morning at 7 am for my clinic appointment at 8. I got took a shower, got dressed, and walked over to Dana Farber (about a block and a half). I got my blood drawn. My platalets look like they’re heading down. They need to be redrawn on Sat. just in case I need a transfusion.
Then, I fell asleep for another 3 hours. So I got up at 7, went to the clinic for 8, and slept until 11. I had to be woken up for my hickman line dressing change and to be sent to my room.
It’s a diffuse ache. My legs feel like lead. To see how I feel walking, jack up your stationary bike to its hardest level and try to peddle. It will wear you out pretty quickly.
This is how it feels to be in my body today.
Not surprisingly, I’m feeling a little down today. I’m angry my body is behaving life this. I want to cry.
I’m going to watch Step Brothers with Will Farrell to counteract this funk that’s creeping in my life. I don’t think Will Farrell will cure all my problems, but maybe, it will help a little bit.
I didn’t expect how the isolation would grate on my emotions. I’m a loving, touching person. I snuggle with my son nightly. I haven’t even seen him since the third. It’s heart breaking. I’m not supposed to give my friends hugs when they visit. We’re supposed to site apart. It goes against who I am.
I was always adjusting my body language, my smile, and my eyes in according with conversation. I’m too tired to have these aspects of my self integrated into conversations. I’m starting to feel very lonely, somewhat because of the limitations I have to enforce on visitors, but mostly because of the limitations I have to put on myself to maintain my health.
This message has been typed up at a snail’s pace. I think I’m going to lay down and close my eyes again.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."