Advice for the newly diagnosed with the dreaded "C"

Right about now, you're probably worried, in limbo, wondering what lies in front of you. People close to you are all clamoring for more information, something that you might like to have yourself.  But I can give you a little advice right off the bat, from someone who's been there.

1. Now is the time to be selfish, because you will be easily overwhelmed by the staggering amount of information & questions,that will come your way (and you'll have yourself). You will need to focus on yourself, your health and your treatment.  Soon you'll develop email/phone fatigue where you'd rather people left you alone. Don't worry about it. People will need to understand that this is about you and not them, even if some hurt feelings arise. Learn to say "no" it will get easier with practice.

2. Look forward, and take one step at the time, since each thing you do will lead to the next.  

3. Get a diary/log, and an accordion folder.  Break it up with the following sections: Treatment; tests & results; appointments; general information, contact names, numbers/emails. 

4. A great 1st step is to go into http://www.livestrong.org/ they have a treatment logbook - free (shipping charges apply) also here: http://www.livestrong.org/Get-Help for your particular options. For suggestions on getting yourself organized, see Organizing to De-stress a Major Illness.

5. Get these things in place now, before the whole ride starts. The first thing I noticed is how I should have hired a personal assistant for all the minutiae that needed to be addressed, and I needed to be reminded of.

6. Don't listen to idiots, they will come out of the woodwork now, spouting stories and advice that is idiotic or downright frightening or dangerous.  Dunno why, but they are out there... Remember they are idiots and move on.

7. Let people help you. It was very hard for me to accept that I just couldn't do everything I wanted to, or that I had no energy or brainpower available to take care of things. I let things go, gave one apology and moved on. I stopped being a people pleaser, because I had to concentrate on what I needed to do. Selfish? Maybe. Lifesaving? Hell, yeah!

8. Whenever possible, have someone go with you when you see doctors. They will be another pair of ears, since you will end up forgetting what someone said, or, what you're supposed to do, when. It's a phenomena, the moment you hear something worrisome at a doctor's office, your hearing shuts down.  Unfortunately, this doesn't happen when you need it to, like when you're being nagged by your mother or spouse. Oh well ... can't have everything.

9. Don't be afraid to ask questions of your Doctors. If they are going too fast, stop them and have them explain or repeat themselves. Remember, they went to medical school, not you; the visit is about YOU not them.

10. Update your emergency contacts. 

11. Make and keep a list of all medications, vitamins and supplements you are take.  How much and when you take them. Keep it on you, have a copy put in your medical file, and give a copy to someone else.

12. Make sure you have a Health Proxy in place, give a copy to your Doctor and keep a copy on you.

13. Lean on your friends and family when you need to. Take advantage of those connections. If you're comfortable with it, don't be secretive, you'll be surprised where the biggest help comes from. I was.

14. Sometime, it's hard to explain to people on the outside your fears, rational or not. It makes you feel vulnerable, weak and whiny. But, don't fret, you'll get through this. And oddly, there are benefits to it too. It's an unasked for metamorphosis, but one that will leave you a different person; a lighter, stronger one. A clearer focus on what is really important in life, the insignificant, falls away. There is clarity of purpose that comes with being an unfortunate member of this exclusive club; a wisdom that is hard earned and freeing.  I don't regret having gotten cancer, because I feel better about many things. I don't hold grudges, waste time on people that don't deserve it. Time is too precious.  I laugh a lot more, and enjoy everything I do, no matter how small. And when I can't, I remind myself how lucky I am.

15. Be strong and hopeful. You'll be fine.  You're on a different ride at the amusement park now, but it's a journey that will surprise you at every turn. Like in the movie Ghost, love is what you take with you, the rest is unimportant. 

16. For me, cancer was a giant boulder that fell along my trail in order to reroute me to what is really important, and to force me to change how I do things.  You will have to take care of your health now. You will have to pay attention to what you put in your body (hey! Keep it clean, now) no more crap. Your body will need good fuel to help it, although the irony is that you will be attracted to crap more than ever.

17. The best advice is to not be scared, although you will be.  I had two types of cancer at the same time - who knew? - and I'm here continuing to be as annoying as always. An over achiever in my 50s? Go figure. You're a member of an unwanted, not so exclusive, club now.

For those of you who have traveled this road, please feel free add your own advice. As the ones who have come before, we have a responsibility to those coming after us, to give all the support and advice we can - Hopefully, someday, we won't need to.

Cheers and stay strong!

Alp

(Please don't forget that the advice listed here is subjective to my own experience; you will need to determine for yourself what works for you. Hopefully something here will be of use to you, but remember that this is only advice)

©2012 Annelise Pichardo