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, October 21, 2008

Cancer Paranoia

My guess is, Cancer paranoia is common. My other doctor used to tell me that “it’s not really paranoia if they’re really out to get you.”
Really though, will a simple ache ever be benign again? I can certainly be imaginative! One day I’m a step away from relapse; my perfect treatment plan, my future life is in shambles. The next, I’m planning on coaching my son’s teams and playing supermom again.
What’s a girl to do? Freak out, is generally what I do. I call my doctor, my NP, my PA. They do their obligatory soothing. They order me some tests.
Last time this happened was days before I was scheduled to start my treatment at Dana Farber. I’d been exposed to strep, but then I’d been placed on prophylactic antibiotics. I started with low grade fevers day and night. I let it go for a couple days, okay four, until the anxiety and paranoia got to me.
I called my program nurse sniffling. Definitely, not trying to cry. My doctor had told me before that positive PET scan or not, we were going forward with treatment.
I’ve assessed enough of my doctor that I knew he would probably waiver in the presence of low grade temps and a crying patient.
He’s a perfectionist. He wants me to start treatment under ideal circumstances. Having active cancer is not the optimal state for my treatment.
I had my PET scan done the next day and I was relieved of my stress by noon.
I hate when this happens. I hate when I get all worked up and make everybody nervous only to find out, “Oh, Hill is just crazy.”
At least, I think, my health care providers like me. I genuinely like them. I can relate to who they are, because they have similarities to me! Maybe, they’ll let my anxiety slide.
But clearly, I’m not the only person who has done this. There is a severe fear in patients of relapsing and “worst case scenarios.” I’ve been through a lot. I was a “worst case scenario” girl for a very long time.
I hope other health care providers are as sensitive as mine.
I feel so fragile and vulnerable in those situations. I don’t know if I’m coming or going, if it’s today or tomorrow. I just want to crawl under the covers and have someone else take care of my problems for me, but the drive to hide the details from my friends and family, compels me to make the decisions myself.
It only gets worse when I have to admit that I may be having a problem, that yet again, my plans will need to be changed. Everyone freaks out. They all call each other. I’m getting a headache right now thinking about the vocal tones I hear.
This is probably the worst part of my cancer. I have to relay bad news to those that love me, people who have trouble being flexible and whose first instinct is to start calling people and yelling.
This will never be an effective method to vent your fears. Remember to play nice. You must trust who is taking care of you.
I know the worst case scenarios. I’m blessed to know and understand how the system works, but this problem never gets easier.
I’m concerned this will happen again. I’m worried people will bank on my coming home, only to be let down. I’ve learned never to get too excited. I try not to get my hopes up, because in the end if something goes wrong, I get my game face on and take it like a woman for my family.
It’s hard for me to grieve over what I’m losing when I’m trying to look strong for other people. It is my life, but I understand that maybe others are more concerned about my losing it than I am.
I’m recommending, in front of people who suffer like I have, please keep your emotions under wraps. Get your poker face on. Try to keep it positive. Make jokes. It’s hard enough to go from a caretaker to a patient, try to help the process go as smoothly as possible.
A helpful website I've found for this situation is This specifically caters to the 18-40 cancer patient set. Patients tell their stories. They let out the truth of how they're feeling in a safe, understanding environment. Kind of like an online support group. There is also a section for friends and family. I think this would be a very good avenue for co-survivors to explore.

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