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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Friday, August 12, 2011

If I May Be So Bold: Can You Help Me?

If I may be so bold, I'm in a time of crisis. Times don't get much worse than the time when your diagnosed and running around searching for the hospital/doctor/treatment/trial that may or may not save you but will definately make me sick, increase expenses and turn my life into chaos. 

During these times, I am inspired by the offers of support in so many areas. Knowing so many people love me and will take time out of their lives to ensure my family and I are taken care of touches and melts my heart even during the deepest depression, after the worst news. Love is how I can fight all these battles, keeping a smile on my face. It's all you people!! I feel like I'm being lifted up on your shoulders. 

Miss manners never covered the etiquette of asking for help during crisis. I don't want to be needy. I don't want to be rude but I need help. I want to talk about our true needs. 

I'm going to the down dirty basics of healthcare/ nursing/ etc., to the true needs/wants of the patients. With any cause or improvement, There has to be a goal and who knows, maybe happy patients with good outcomes will not only make a great goal but will help fix a broken system? 

Who knows, but I hope this needs list can be useful and relevant for others. 

First and foremost: Rides are needed. These are always the most difficult because the trip is 35mi and the appts are often long during work time hours. Sometimes you will see me get sick, but you do get to spend a quality day with me :) getting an up front experience, and usually, free massages! Yay who wants to sign up for this! 

There's also room for a whole community to group together and rally, forming a consistent carpool schedule that people can join, pay into maybe with rural transit. 

Also always, I need help getting organized at home and staying organized! When I get sick my energy levels change and stuff needs to be moved to make my life easier. I need assistance with my closet and jewelry area so I can keep dressing and creating while disabled.

 Closet chaos is awful with cancer. It's tiring to shower and change. I want to be able to find clothes without exhausting myself. 

Being available to watch/play with Xander is always so important.We've all spoken and want to stay being as happy and "normal" as possible. We want him to be happy and having fun while I am away sick.

 Some lifelong family friends, who were ages 4, junior high and high school when their mom died of leukemia, say they only remember the happy times. I want to keep the good times coming.

 Also, FYI, if I offer a play date, it's because I feel well enough to enjoy it or j or someone is with us. If you still feel uncomfortable, don't make the date or communicate (love open communication) and we'll make an easy exit plan. 

Offering to cook is always appreciated. It's even better if it's something the family likes and eats like chicken fingers,roasted chicken, chop suey, spaghhetti, meat loaf, mac 'n cheese. 

Aluminum dishes are great so no return needs to be done. It'd be perfect if someone could organize all the offers of what people offer to cook so we can know we'll eat well without having to throw away.

 Sending us meals/foods ready to be frozen would be a gift that keeps on giving. Sending fresh food from the garden would be great. I love cucumbers, but don't have the energy to access the grow a row program. I can't even cut them myself.

Realistically, there is a flutter of assistance when the diagnosis is (re)new then it fades. Help with organizing my health care contacts support systems with name, numbers, emails and what they can do when would be amazing. 

I'm still trying to find an app for that. 

And yes, we always need money. We have a financial Plan Z and we're on it. Mortgage the house vs. keep going claim bankruptcy? I'm out of the financial planning. If you're able, send a donation. If you're uncomfortable with cash, gas cards are great, walmart cards, food cards anything that will help provide us with our needs while we figure out how to move forward.

Every little gesture in helping is meaningful, a phone call, email, or comment helps remind me why I fight. I need reminding that I do good and contribute to the world. I need to know I'm more of a benefit to society than a drain. One of my favorite helpful activities cost nothing: Feel free to send comments as a way to help. I love words of encouragement to keep me fighting.

Thanks so much to everybody.


Katie said...

Hillary, our moms group in OH sometimes used the site to organize meals for a new mom. It is easy to set up and sends reminder emails to people about what day they sign up for meals (people can even write in what they are planning to make so you dont get too many repeat meals in a row!).To set it up you would need email addresses for everyone who might want to make a meal for you....I would be happy to do it for unless you think it might be easier to do with someone closer to home (CT is closer to OH but not as close as Claremont!) Just let me know! As always you are in our prayers

Katie said...

oops...I meant to say CT is closer THAN OH but not as close as Claremont!

Anonymous said...

Hillary, there is a website where a calendar is set up with your needs written in each day, ie. ride to DH hospital, pick up X at soccer, etc. It also can list when meals are needed, and on a separate page you can list preferred meals. Someone like your Mom would be listed as coordinator, with several others as helpers, and then people would "apply" to be part of the site, so only people known to you (or them) would be involved. It has worked very well with several families I know that have used it.
Eileen Bohigian

Anonymous said...

The American Cancer Society offers rides. You can check if they can help you.