Thursday, October 13, 2016

Pre-Treatment Education

So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.

This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.

The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.

This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.

Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.

This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.

1 comment:

Lillian Kim said...

Hi Caroline,

I hope you're doing well! My name is Lillian Kim. I came across your blog and thought you might be interested in helping us send out notes of encouragement to the many women (including yourself!) out there struggling with breast cancer who need to know they're loved.

I work with Pixinote, which is like the offline version of Instagram. You can create a simple photo and message note, and we mail the real thing to the recipient's address. And like Instagram, if you know someone's *pixiname (like your Instagram handle), then you can send a Pixinote to them without having to know their address.

Since October is Breast Cancer Awareness Month, I'm reaching out to as many breast cancer bloggers to get the word out about how to sign up the mailing addresses of women who are struggling with breast cancer to receive Pixinotes from anyone. These addresses will be added to a *PinkWords mail list (all names and addresses are private), so that anyone who sends a Pixinote to *PinkWords, it will be mailed to one of those addresses. I've written a blog post on our Pixinote site to explain this more.

Please let me know if you'd like to join us to encourage all the women who might need to hear some words of love. All we ask is for you to let your readers know that we're doing this and just help us get the word out so we can reach as many of these women as possible so they can start receiving Pixinotes. We're not asking people to download the app or anything, this is just our way to enable people to send some encouragement over mail. You can share our blog post, Facebook post, Instagram post, Twitter post, or all of them if you wish!

Thanks and hope to hear from you soon!