Jump to content

Wrote Some Letters


Recommended Posts

I'm a caregiver. My wife has Stage IV LC with multiple metastatic brain tumors. Very sudden. She had a seizure last Monday, and my son rushed her to the hospital via a quick call to 911.

They stabilized her. They explained to us what happened, and we are facing a long dark road into the unknown. Statistically, I understand the odds. I know what we might face, and I've promised her that I will fight for every second. I will try to care for myself in all of this, but she is my focus. She is the one that matters. I think I'm out of the denial stage, ready to face reality of all of this.

Anyway, I wrote letters to her, myself and my son. They explain my feelings, my plan and what I believe the future holds. When I read them to myself, its like my pain doubles. I can't care for her, if all I do is sit and cry, THIS HURTS SO MUCH. I know she wants to fight. She has plans. I want her to keep them.

One thing that keeps coming to me is the odd behavior of everyone else on the planet. It genuinely seems weird that the rest of the world is just going on with their lives as if the kindest and most understanding person that ever lived is in danger. How can they go on like that?

There is an army of people ready to care for her. She wants to work this out, then call in the cavalry. It will be epic.

How do you caregivers get through the day?

Link to comment
Share on other sites


I was the patient; my wife the long suffering caregiver. She carted me to daily radiation and weekly chemotherapy prior to surgery, remained at my side during my year long bout with multiple thoracic surgeries, then attended to two years of Taxol Carboplatin nightmare.  At the end of all of this, I still had cancer and were it not for the emergence of CyberKnife SBRT technology for lung cancer patients, I wouldn't be writing this now.

Martha didn't get through every day.  Many were nightmares.  During her tour of duty, there were no places like this where she could reach out for solace. She sought comfort from our families, some who found it difficult to maintain a close connection because of the lethal nature of my disease. But, having said all of that, I wouldn't be here if Martha had not engaged my doctors probing for ideas and techniques. She simply didn't give up!

True, there are an army of folks ready to care for your wife but they need effective leadership. Lead the cavalry.

Stay the course.


Link to comment
Share on other sites

You can DO this.  You're still dealing with the shock of a recent diagnosis.  As things become clearer (and apparently with this stuff it never becomes TOTALLY clear), you will adapt to a "new normal."  I was the support person/caregiver to partners with liver disease and with testicular cancer.  I did a lot of research and reading so I knew what would help them and what questions to ask the doctors.  I also connected with communities like this one to talk with other people dealing with the same stuff.  All of that made me feel like I had a modicum of control--not over the disease, but over what I WAS able to control.  In talking with other caregivers and survivors I learned what is and isn't helpful (both for you and for the person you're caring for), remembering that everyone is also a little bit different in what they need/want.  

Some of my own tips, based on my own experience:

Get organized--make up file folders (physical, and/or on your computer) to hold copies of lab/test results, reports, etc.  Take good notes at meetings with doctors, and if you can't remember something, call back.  Make sure your wife has the appropriate consents and advance directives on file (you can find something for your state online), to ensure you have access to all her medical info and to ensure the doctors are free to talk with you.  You might also want to have her execute a Power of Attorney that would allow you to manage any of her affairs if she is unable to keep up with it for a while.  (I'm a lawyer, myself, and there are forms online, but hiring a lawyer is the best way to make sure everything is done right). Keep a current list of contact info for all medical professionals helping your wife, a list of all prescribed medications, and a running narrative of what happens at each appointment or test.  You'd be surprised how handy it can come in to have that info available at all times.  I keep my folders with all my important medical info in a DropBox folder--that way I can access it from my phone if I don't have my physical folder with me.  Read up on treatment protocols, options, considerations that may be applicable to her diagnosis.  You can help plan/prepare good, nutritious meals that will promote her health and overall well-being.  You can find out what side effects her treatment might have and prepare to help minimize some of it or make her more comfortable.

I know what you mean about its feeling surreal that the rest of the world goes on.  Actually, though, that's how it should be.  The world doesn't stop for us and our problems or our grief.  Be patient with yourself, and as much as you can try to be patient with others (my own patience has been stretched a bit thin the last few days).  

All of this will help you be the most effective caregiver/advocate that you can to help Dawn during her fight.  And yes to what Tom said--you can lead the cavalry! :)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...

Important Information

By using this site, you agree to our Terms of Use. We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.