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."

Get a playlist! Standalone player Get Ringtones

Tuesday, March 29, 2011

The Recovery Reality

Not for the faint of heart,
my nephrostomy tube and bag

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 you're 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 on top of that, you've suffered an emotional setback that has to be confronted before healing completely 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 by reading and studying, I've been healing by sleeping, some exercise, trying to limit activities, but who can do that at home?
Tubing is connected to a stent in my kidney,
 allowing urine to bypass the bladder and
rest the kidney.
Of course I'm sleeping all the time!
 I hopped back into activities and exhausted myself, again.
 X had a virus. Laundry needs to be done. Who can rest in a cluttered household?
 There are birthdays to attend to.
 Life doesn't stop.
 So how can anybody help the healing process? 
Caregivers, be understanding or empathetic. 
Just because your loved one has left the hospital doesn't mean they're back to normal. It will take a while to resume daily activities. Let them take baby steps.
 Know they need rest, nutritious food, and 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. 
Right Now, I can't even read. I can't watch movies. It's too much attention I don't have.
 I'm tired. I have no attention span. I flit uselessly between projects, failing to accomplish anything.
 I wish I was reading in a hammock sipping lemonade, instead I'm trying to chug 3 liters daily to stimulate my kidneys, unable to think my way out of a bag.

So please, caregivers, when we're sick we're not ourselves. Remember to be patient with us patients and patients, remember to be patient with your loved ones.

No comments: