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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Thursday, August 11, 2011

If I may be so bold: Can you help me, please?

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 too needy. I don't want to be rude but I want to talk about our true needs. I want to write about the helping utopia I am imaging, saying if everything was perfect this is what I'd get. We all know life is far from perfect. I'm going to the down dirty basics of healthcare/ nursing/ etc., to what are the true needs/wants of the patients are. With any cause or improvement, There has to be a goal and who knows, maybe happy patients with good outcomes 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 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. 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. 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. Feel free to send comments as a way to help. Now you know some words of encouragement to keep me fighting. Remember, you are all the heroes and inspiration in my life.

1 comment:

stonepost said...

Hillary, I am alive and working, cheating this very same horrible desease that has a grip on you. I wish I could tell you the secret but I don't know it. I don't do paypal and credit cards over the internet, so here is the deal: email me your street address and i will send you cash! I am not rich so it will only be $100.
IF I could choose where this money goes it wouldn't be towards getting lost in the health care system. My first preference would be on an evening when you are feeling good enough, take yourself and "X" or "Y" out to dinner, not somecrapplace, anice one where there will be no change after a tip. It is extravagent, yes, I know, that is why I want you to do this. One evening, a dance maybe, a song in your heart and a good meal, quiet with your "other", that is what life is about and cancer hates it. Not for bills Hillary, just for fun! I am serious! Jerry Carlin