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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Saturday, November 15, 2008

Doing the best I can

*TELEPHONE TAG*
A doctor calls a patient to report on a bone scan and biopsy. The patient is out so the doctor leaves a message to call. As usual, no medical details are left.

After a day of telephone tag, the doctor and the patient finally get together on the phone. Says the doctor in a matter of fact voice, "I have good news and bad news. Which will you have first?"

"The good news." "OK. The reports say that your cancer has metastasized all over and that you have 48 hours to live." "You call that good news? It must be the bad news. What could possibly be worse?"

"Well, the bad news is that I tried to call you yesterday."

Getting close to me comes with baggage.

I do the best I can. We all do the best we can with the information we have.

It's not the nasty down right mean baggage. I am not, nor will I ever be, a drama queen.

It's the worst kind of baggage, the kind no one can control, that comes with no rhyme or reason through no fault of our own.

Everyone has baggage, just some hide it better than others. We’ll all, inevitably, have to overcome our childhoods. It’s a guarantee, like death and taxes.

For all the laughter, the fun, the energy, and hysteria I possess when I'm healthy, there is another side of the coin I can't control.

This is the side that has cancer, that may go into a coma, stop breathing, bleed to death, or have lungs that fail any time. It's a reality. I've starting to tell people I may become friends with upfront.

Nobody will really admit to passing me by due to cancer, but I don't blame them if they do.

My life is emotionally draining. Sometimes, I don't even want to hang out with myself. I’m not the only one who deals with this. This happens to cancer patients everywhere.

So many people can’t handle addressing the discomfort or have had too many experiences it’s easier just to take some space.
I do have friends who have up and disappeared, hurting me deeply, because I had nothing to contribute to the relationship. There is no quid pro quo I can give.
I can not go out to bars. I can not dance on tables.
Yes, I have changed. People say this like they’re surprised. They say it like it is bad.
Sometimes it is. I have a burden to bear and I don’t want to drag anybody down emotionally with me.
I go crawl into bed at 6:30.
At least I know who my fair weather friends were. They are long gone by now.
It took a long time, but I kissed them goodbye and I don’t look back.
Now, I’m going to admit, that I’m guilty of doing this too.
I’m guilty of not knowing how to support people I’ve known for years, lifelong family friends who have had a family member dying of cancer.
I did avoid a man I knew all my life, a longtime family friend with children my age.
I was twenty-one and I was all ready a nurse.
I think dealing with a situation like mine take experience and a comfort level with life few possess.
It’s easier to pretend a problem doesn’t exist even if the person is bald and emaciated.
They eyes just don’t see what the brain does not want to know. I’m guilty of looking but not seeing.
If anyone my age could handle that situation it was me, and I couldn’t. I shied away. I stayed away and I regret it to this day.
Worse, I couldn’t talk to his wife, his daughters, or his son, even though I have nothing but love for them.
I AM SO SORRY.
I just didn’t know what to say. I didn’t know how to address someone that was obviously dying even though I got paid to do it day in and day out.
It was selfish, it hurt me too much. I don’t want others to make this mistake. Learn from my experiences. Address the obvious gently. Think about how you would like to be approached.
Why has everybody forgotten the golden rule “do unto others as you want done unto you?”
I have looked at people, and still do, only to remember that they or someone they loved has had cancer, suffered and died.
The avoidance goes two ways. I won’t be talking to you either. Not because I’m uncomfortable, but because it hurts too damn badly.
What I’m saying is, I understand. If you can’t handle me, and I eventually get healthy, I won’t hold it against you. I just hope eventually you will understand.
If you are doing this and don’t want to, let me tell you how to broach “the subject” to a cancer patient:
DO NOT start by asking the prognosis.
DO NOT suggest they could have prevented their situation. This makes you an asshole.
Ask how the person is. Tell them they heard about their situation.
Ask if you can help but don’t push.
If all else fails, remember the golden rule, and remember, we all do the best with the information we have.

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