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."
Wednesday, April 13, 2011
EPatience with Recovery: even you Patient.FYI: I wrote this prior ro my current setback when I was lying around, feeling lazy and useless, unable to handle my daily duties since my body had tubes all over and my energ was revolting. Here is how that felt. Even in today's ultra-transparent world, I'm still met with misconceptions about recovering from physical set backs, and I don't think I'm alone. Whether youre a cancer patient who has had their kidney's fail, or any patient who is suddenly disabled, for all those who have sudden bypass surgeries or even car accidents with rehab, returning to normal is an uphill battle. Recovery is often misconstrued as a relaxing event, full of improvement, like a spa treatment. Trust me, it's not. It's like boot camp. It'd be great if recovery was like the vacation lots of people envision, where we relax, read books, take naps. But No, that's not what happens. That'd be ideal. What people forget is that Everything has changed, physically and you've suffered an emotional setback that has to be confronted before healing begins. For every day as an in-patient in the hospital, it's estimated it takes 3 days to a week of recovery at home. On your average 4 day stay, expect at least 12 days to 3 weeks of healing at home. Those days need to be taken seriously! Rest time is huge, and rest doesn't include reading, writing, etc. Truth is, I haven't been healing, reading and studying, I've been healing by sleeping, some exercise, trying to limit activities, but who can do that at home. I hop back into activities and exhaust myself. X had a virus. laundry needs to be done. There are birthdays to attend to. Life doesn't stop. So how can anybody help the healing process? Caregivers, be understanding or empathetic. Just bc your loved one has left the hospital doesn't mean their normal. Know they need rest, nutritious food, a stress free environment as much as possible. Patients, listen to your body. Sleep when you're told to sleep. Park on the couch and watch tv. Now, I can't even read. I can't watch movies. It's too much attention I don't have. I'm tired. I wish I was reading in a hammock sipping lemonade, instead I'm trying to chug 3 liters daily to stimukate my kidneys and can't think my way out of a bag. Please remember to be patient with us and patients remember to be patient with your loved ones.