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."

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Tuesday, March 24, 2009

Hillville

How quickly my excitement to be out of the hospital changes back to irritation.
What a couple hours ago was a major accomplishment of being discharged from the hospital is now just another action, a completely inconsequential action.
It turns out, AGAIN, just because I was deemed healthy enough to leave the hospital I am NOT miraculously cured.
Apparently, just because I am no longer under doctors’ orders and nurses’ supervision it does not mean that they waived their magic wand and healed me back to pre-transplant, or even pre-viral, health.
You think I would know that discharge didn’t mean all was well in Hillville.
You would think, at some point, I would leave behind the naïve hope that since all sorts of people with all sorts of years of experience and education had banded together to say that I was capable enough of caring for myself at home that, not only could I care for myself, but I would FEEL GOOD doing it.
I haven’t lost that idea yet.
So clearly, I’ve been a little frustrated since I got home.
A lot of this is my frustration talking.
The ride home was tiring.
I don’t know if healthy people can understand this, but riding in a car can be exhausting.
THEN getting home and realizing I can NOT just pick up the clutter, finish cleaning the dishes, feed the animals, and still have energy to take care of X adds to the frustration.
I go from a little irritated, then to frustrated, then to downright angry.
Where is this anger supposed to go?
I’ve experienced this feeling before. . . . . A LOT.
It’s the feeling that Hooray, I am getting better! I have concrete evidence that I’m healing! But, ugh, I’m still sick.
Maybe you can imagine the kind of nasty funk of a mood this puts me in.
I can imagine others in similar situations with roller coasters of health and illness, admissions and discharges feel the same way.
It can be downright angering.
And how can you complain?
I’m getting better. I feel good. I’m improving. The end is in sight.
I’m supposed to feel good and happy. I’m supposed to feel like I’ve accomplished something, but I don’t.
Then I just get irritable.
To all those out there suffering with diseases, I hear this is normal.
That is one thing to feel good about. I’m normal.
But what I want to hear is that it’s okay to still feel sick, to take more time to heal, and to heal individually, the way I need to heal for my body, not the way that somebody else did because of the way their body responded.
Thank goodness for this trend of personalizing care.
Maybe, hopefully, sometime soon, we’ll understand that recovery is also incredibly individualized and give each other, and in my case, myself, permission to take the time to heal.
I am. I’m taking sometime to feel good about getting better. I’m taking sometime to be frustrated I’m not healthy yet.
X just got home, ran to the door, straight to the fridge, and into my room with a drink to “make me all better.” Now, I’m taking sometime to know everything will be allright.

3 comments:

Anonymous said...

Bless X who brings something to refresh you, both physically and emotionally.
I am so sorry that your voyage seems interminable, but have courage. Stay strong.
Carol

Anonymous said...

Despite your frustration about how loooong it is taking you to really feel better, you really have come a long way. You are a very determined woman - you can do it! Your fan club has all the confidence in you.
Dianne

brynn said...

You will get better. Don't forget to rest! Let Xander take care of you! :)