If you haven’t read these precursor posts, please do:
We can easily fix the shoulder, but…
Cancer is no longer a death sentence
Understanding the statistics you read
The importance of your attitude and feelings
Marshalling your resources
When you’re facing a harsh disease, use every tool at your disposal.
Cancer brings a hefty load of communication. Set up a support community and online journal at www.CaringBridge.org or www.CarePages.com. Each lets you post news updates 24/7, when you feel like it – even from inside my hospital, which had wireless! It saved hundreds of phone calls, hours of emails. Plus, web visitors wrote expressions of support in my "guestbook," which were heartening. (They’re all captured in the book I mentioned yesterday.)
Find a community of your peers. Google your disease plus "support," for instance "kidney cancer support". For less common cancers, www.acor.org is best.
The Internet has truckloads of garbage; learn how to filter it and find the gold. The best way to do that is, again, through your peers, who rapidly debunk the junk.
Take care of the caregiver. Get relief for the people at home who give so much. Arrange some days off, with someone else covering; if neighbors bring dinner, accept it. Your caregivers might benefit from a support group of their peers; they may be experiencing loss, too: loss of their dreams, fear of losing their future, and more. Caregivers should be straight about their emotions, too, same as you.
Learn to advocate for yourself. Expect respect from doctors and nurses, and get second opinions whenever you want. If a doctor suggests you’d be better off not asking so many questions, get a different doctor.
You can learn a lot from the free e-book E-Patients: How They Can Help Us Heal Healthcare (PDF, wiki ). I didn’t read it until my adventure was mostly over, yet it took my breath away.
E-patients are empowered, engaged, equipped and enabled. When I got my cancer diagnosis, I became one fast – and I’d never heard the term. You can be one too.
So ends my list of things I wish I’d known from the outset. How about you? Does any of this help? What did I miss, that’s helped you?
———
A parting thought:
I had no preparation at all - zero, zippo - for the life-threatening adventure I entered 19 months ago. It seems like a lifetime ago; in a sense, it was.
As positive and activist as my perspective was, please be aware, I knew all along that I really might die soon. In a sense, it was like heading down a big "flume" ride at an amusement park, with no certain control over what was going to happen. Yet I knew, even if I was going to die, I could still choose to be fully alive during the whole process.
That might seem odd, but think about this: If I’d clenched my teeth and fists, it wouldn’t have helped my cause at all, and might well have taken me out of the fight, mentally.
In a couple of posts here I’ve mentioned that the only question worth asking is, "What can I do that would make any difference?" My hope for each of you is that when a crisis arises in life, you’ll have the presence of mind to fully participate in your care.
Blessings on you and yours.
| August 8th, 2008 at 7:03 am
What is it about Cancer that strikes terror in everyone that hears or reads about it?
Dave I have enjoyed reading your posts this past week, and many points struck home with me, but the one that is at the top of the list for me is “Take care of the caregiver”
I have walked the caretaker road many times, and have watched as others struggled through this role.
From a caretakers perspective my one word of advice for a patient and the main caregiver, would be to talk about the future - have something to look forward to. Set a goal and work towards it. Have a thread to hold onto and don’t let go! That thread may be the only thing that pulls you through that very rough day!
My very best to you and yours!
| August 8th, 2008 at 9:09 am
Terrific series, Dave. Thanks for sharing your experience and wisdom.
| August 8th, 2008 at 6:27 pm
Truddle, thank you so much for the reminder of having something to look forward to. The darker days seem so far behind now that I’d not thought of that for a long time.
But you’re right: while doing everything we could in the present moment, we determinedly focused as well on the future.
As for “what is it about cancer,” I don’t know about you, but I grew up hearing horror stories of slow painful death. And, ironically, though I was a few months from death (statistically!), I never had a bit of pain. (Well, okay, when I had surgery, the incisions hurt, but the cancer itself never hurt at all.)
Okay, there’s an exception - when it got in my thigh bone, that hurt. But I never had the kind of gut-wrenching discomfort I’ve heard about.
It’s my fervent hope that everyone who enters a medical crisis will face it with eyes wide open, fully engaged in their care.
| August 9th, 2008 at 6:39 pm
Dave, I want to thank you for sharing with us. I’ve read each blog entry several times, each time thinking about something else and wanting to respond but not sure how.
You have given me a lot to think about, both about my life and my new job on the Oncology floor of the hospital.
| August 12th, 2008 at 1:41 am
Hi Dave,
I have to tell you that I have started to comment and eraced twice before this. I guess because your story gives a lot to think about and really touches home. For me, I can relate to being the caretaker.
I think as the caretaker it is important to know that it is ok to take a breather. I have been there, dealing with the unknown, and worrying that if I leave the doctor may come in and I will miss “exactly” what they had to say or worse the patient may need help or something may happen to them. It is really vital that the caretaker does go get a cup of coffee, go home and take a shower or a nap or something. In order to take the best care of the patient they need to take care of themselves too.