Tuesday, May 2, 2017

Lymphoma Canada's Watch and Wait Guide

A few days ago, I came across a really nice link on Twitter about Watching and Waiting.

(Did I mention I'm on Twitter now? Yes, I did. Follow me at @Lymphomaniac if you're on Twitter, too.)

It's a pamphlet put out by Lymphoma Canada on Watching and Waiting. I have to say, I think it's the best patient-focused explanation of Watching and Waiting that I've seen. I wish I had been given something like this when I was diagnosed. I remember my first frantic internet search of "Follicular Lymphoma," trying to figure out what kind of treatment I could expect. One of the options was "watch and wait," and the idea of doing nothing seemed so ridiculous to me that I didn't bother to try to understand it.

That's why I like this pamphlet -- it explains in simple terms what the strategy is and why it's worth considering.

But what I like most is that it encourages patients to be proactive. It's easy to think that Watching and Waiting means doing nothing. That's a mistake. We really do need to watch.  The pamphlet includes a place to track your symptoms -- writing down physical changes that you can share with your doctor. (The danger, of course, is that you can become obsessed with even the smallest of changes. That gets better with time, in my experience.)

I also really like the list of lifestyle changes that you can make -- eating better, exercising, reducing stress, doing things that make you happy -- and, of course, taking the time to learn more about Follicular Lymphoma so you can make an informed choice about treatment when the time comes. (Like reading Lympho Bob). Those kinds of active changes might help you feel more in control of your life, at a time when it feels like you're not in control.

(And I really appreciate the line "There's no evidence to suggest that you can do anything to keep your FL from progressing." That's important, too -- taking care of yourself is important, and as you are reading around, learning about Follicular Lymphoma, you might find something that promises a "miracle cure" or some way of keeping your Follicular Lymphoma from getting worse. Don't believe it. Eat better, exercise, and stop smoking because it will help you feel better, physically and psychologically. But don't expect any of it to cure you.)

So if you are recently diagnosed, and been told to Watch and Wait, then consider reading the pamphlet. Even if you've been doing it for a while, take a look -- it's a good reminder to take care of yourself and be proactive.

As for the rest of you, you might want to look at some of the other publications that Lymphoma Canada offers. Good stuff, especially if you're from Canada.


Marcela, canary islands said...

Hello Bob
I especially like this publication because it coincides with my annual review. Continued with the watch and wait after five years and everything remains the same, many nodes have even disappeared. I prefer at this time to do more ultrasound than CT. The TAC emits a lot of radiation and I prefer to avoid it for the moment. My doctor trusts that all these new treatments that thanks to Lymphobob I can know them, they come to cure us Since 2010 my first ganglion appeared until 2012 I was not diagnosed, my wait has been long. I like waiting I have learned to be very patient.
A loss and a lot of health

Lymphomaniac said...

I'm so happy to hear that things are going well. I hope you can keep waiting for a lot more years!

Virginia Miller said...

Thanks for this resource, Bob! I'm going to share it at my next 6 mos. check-up, which is this week. I think it may be helpful for others to know about.

Lymphomaniac said...

Good luck with the 6 month check-up, Virginia. Let us know how it goes.