Two rules you NEED to know...

In addition to my personal passion for working with cancer patients, I also work as a Nurse Practitioner for a palliative care team. One of our goals on this team is to work with patients in the home setting to prevent (re)hospitalization. I explain during my in-home visit that I am more than willing to help the patient in any given situation, as long as it is safe and appropriate. I review that I have two rules (or requests) if my assistance will be effective. 

I am going to share these rules today on the blog. While these rules are of the utmost importance for anyone battling an illness or disease, they also hold true for the majority of us in our day-to-day lives with our partners, co-workers, children, etc. You may be surprised at the simplicity of them... But I encourage you not to rush through and say 'duh,' but more so reflect if you are actually following them. 

Rule #1

It is difficult for your care team* to help you if you are not letting them know what is going on...

I usually restate this as "the squeaky wheel gets the grease." There may be times in life to 'grin and bear it' but during illness or treatment for your condition is not one of them. If you are not communicating your needs or how you feel,  no one will be able to help you. I am not, your spouse is not, your doctor is not a mind reader. As hard as we would like to understand, we place the power back on you. You need to speak up if you are not feeling well, experiencing a symptom, or do not understand your plan. 

Rule #2

The phone call about your change, problem, and/or concern needs to come on day 1 or 2 of the problem, not day 10 or 14. It is far more difficult for your care team* to assist you 2 weeks into a problem, much more likely it can easily be resolved 2 hours in to it. Now I know what you are going to say. No really. I have *literally* heard every reply possible to this rule. So I will answer the most common responses below:

• I don't get a warning, it just comes on fast when I have a problem. This may be true to an extent (depending on your illness), but 90+% of the time you do have symptoms, you have just gotten REALLY GOOD at ignoring them.
• I don't want to call with every little thing. Call. I promise, your care team* would rather know what is going on, even if it turns out to be 'nothing' than if it was something and you decided it wasn't worth it to call/check in.
• I'm afraid if I call, they will send me to the ER. This is where early symptom recognition is key. I like explaining this that our brain is wired to 'alarm' us when our body needs something. "I have to go to the bathroom."; "I'm thirsty." *Yawn* "Man, I am so tired." Our brain is constantly alarming us to what our body needs. The problem? You and I have gotten great at hitting snooze. "Yeah. Yeah. I'll pee when I get home; the bathroom here is gross!"; "I should have a big glass of water, but that Diet Pepsi is calling my name."; "I know I should go to bed, but one more episode won't hurt..." Snooze. Snooze. Snooze. We live in a world of putting our body's needs to the back-burner. Please do not do this when you have an illness and especially if you are on treatment. You have to listen to what your mind-body connection is saying. 
• Usually I just feel bad for a day or two and then it gets better. This, again, may be true, but tempting fate with your health and wellness is not a game I urge you to play. Just because you report an issue to your care team*, it does not mean that massive changes will be made. It means your care team* will be ready and better able to get you what you need as soon as you need it.

What if this is the time it doesn't get better? I hear it all the time, "I felt bad for a few days and then I didn't get worse, but I didn't really get better for another few days and now all of the sudden it's really bad." Okay, well, first of all, it is not all-of-the-sudden. You have felt off or poor for over a week. You just waited until misery set in to seek intervention. Not the best philosophy... Just let your care team* know.

Have I convinced you yet? These two rules really can make or break the way you feel and how your body responds to symptoms. It is SO important to communicate.

Now... just for one last twist, did you notice that any time I mentioned your care team, there was an asterisks* placed after it? Do me a favor and go back through and re-read this blog post...  But this time when you see care team*, insert the name of your spouse, roommate, parent, etc. Whomever the person is that is the closest to you in your healing journey... Go ahead and re-read it. It will only taken you an extra couple minutes.

The same goes for those around you. If you are not communicating your needs, emotions, or concerns, those around you are clueless. It can be very challenging for your loved ones to know how to best support you. Some days you might want to be touched, hugged, loved on. Other days you may want to be left well-enough alone. The challenge is, what if your partner doesn't understand which day is which? That can leave both of you feeling alone, frustrated, and confused...

The squeaky wheel gets the grease. Squeak when necessary my friends.

Strength and healing, 

Erin