Katie & Briscoe

Katie & Briscoe

Saturday, September 18, 2010

Helpful Resources... Long Time Overdue

I should have gotten around to doing this a long time ago. I've mentioned some of the sites that have been useful to me in my journey so far, but I haven't taken the time to put them all down in one place. I'm going to start with the place I started myself. It's where anyone with cancer or anyone who knows someone with cancer should go right off the bat because they obviously have tons of information. My first link: The American Cancer Society. Their goal is to provide information and they do it well. Perhaps a bit too well for some, I guess, as they offer a depth and breadth of information that can actually be a little intimidating and/or overwhelming, especially for the newly diagnosed. Still, I'd recommend anyone seeking info on any kind of cancer start with them.

Related to the ACS - in fact a part of their organization - is the Cancer Survivors Network. As much as I appreciate all the sites out there dedicated to helping cancer patients and those who care for them to educate themselves, this site has probably been one of the most important to me. It is a place for patients, family, friends, and survivors to gather to share advice, encouragement, or tears and to ask any question and know that someone - probably MANY someones - will have an answer for you. It is broken down into boards dedicated to many specific kinds of cancer as well as some more generalized areas for encouragement or memorials, etc. Having Breast Cancer, I spend pretty much all my time on that board. I have met too many wonderful women to mention them all. I have been immeasurably comforted knowing that there is someone out there who I can go to when I have a question and know that they've been there before me. I searched the site and found countless suggestions for ways to ease potential symptoms, more than a few of which I have put into practice and found helpful. They also warned me of possible symptoms that might not be mentioned by doctors or nurses. Some things are fairly rare, but if they were to happen with no warning it would be very frightening. Having the wisdom and experience of these other survivors makes this whole journey far less intimidating to face.

I know everyone isn't the same. Some folks out there don't really want to know all the details about their treatment, or possibly even their disease. I am NOT one of those people. I am, and always have been, an avid researcher, believing that knowledge and understanding is a tool that can help me fight. When confronted with any illness or unfamiliar situation within my family, one of my very first actions is to sit down at my laptop and start doing research. The ACS is the obvious choice for this when it comes to cancer, but there are some other places that I've found helpful as well. One of them is a site put up by Scott Hamilton, the figure skater who beat cancer himself. His site may have much of the same info as the ACS, but I believe it is laid out in a somewhat more "user friendly" manner. In particular, I like the way they have set up their pages of info on chemotherapy drugs. It is easy to read, easy to understand, and laid out in a straightforward manner that I find appealing. It is less about explaining the cancer itself and more about the chemo treatment and how to deal with it. Hence the name: Chemocare.com.

Another site that I have visited, though not spent a tremendous amount of time at is BreastCancer.org. It is another site geared toward education. I visited it early on, but have not been back all that often because I have just been content with the CSN for the most part.

Perhaps this is odd, but I honestly cannot say I have spent much time at all at the Susan G. Komen site. It might be because I am at heart a rebel and for some inexplicable reason, visiting THE site responsible for the whole breast cancer movement, pink ribbons and all, was a little... cliche for me. Sounds crazy, I know, but that's just who I am. Basically, I found pretty much everything I was looking for before I made it to the site and so have not spent time there doing research. I have no doubt at all that others would go there first. Maybe if I take the time to have a look around, I might wish I'd done so as well.

The thing is, one of the things I read on the CSN site soon after my diagnosis was a topic about how sick everyone was getting of all the pink stuff. At that time, I didn't get it. I still don't have a personal issue with it myself, but then I am pretty early on in my battle. After a while, I suppose every pink ribbon, or BC shirt, or cap, or scarf starts to feel like some kind of label instead of what it is intended to be. As one woman said - who got so fed up that she shredded all her pink ribbon stuff - cancer is not who she is, it is what she has. She did not want to be some kind of walking billboard for it. There were a lot of others who shared that sentiment. So, while the Susan G. Komen site undoubtedly provides a profoundly valuable resource, and is on the forefront of helping women to learn about the disease and to take steps to catch it early (all obviously worthy actions) I suppose I just don't want to feel like I'm jumping on some kind of bandwagon with a bunch of other pink clothed zealots. And having said all this, I would still recommend anyone visit the site, just for their own education. Not to mention that if you're looking for somewhere to donate, this would obviously be a good choice.

My cancer diagnosis has fallen in something of a down time for the Relay For Life, meaning that the race is over for this year and I am not personally aware of any other cancer, or breast cancer specific, activities that are coming up. I live in a small town, though. Larger cities likely have many more events and/or resources for local patients. I suppose I will get involved with the Relay next year. I honestly don't know, yet. I know when my sister had lung cancer she had some friends walk for her in her local Relay and she said it meant a lot to her.

I won't even pretend that this is anything close to an exhaustive list of resources. The Web is a vast place, full of practically infinite sources of information on almost any topic. But these sites are the ones that I have either found helpful or at least knew of BEFORE I was even diagnosed. I have another list of sites that provide hats, scarves, wigs, etc. for cancer patients. I mentioned the Lydia Project in an earlier post, but when I do a post for patient help, I'll mention them again. My best advice for anyone facing cancer, or any other major health issue, is to educate yourself first. Don't just blindly trust a doctor, even one you think you know. They are, like all the rest of us, fallible and can be wrong. And sometimes, they're just bad at the their jobs. Seems hard to believe, but I've witnessed it first hand more than once in my life. When it comes to your health or the health of anyone you care about, YOU MUST BE AN ADVOCATE! Do not be intimidated, or  scared of hurting the feelings of some doctor. It isn't their life that might be hanging in the balance. Do the research, ask questions, take notes if you need to and then ask more questions. Never let yourself go into something as profoundly difficult as cancer treatment without knowing exactly what will happen, what you should experience, and what to do if something goes awry.

Last but not least I must mention, as always, that I would never in a million years know how to face this thing without God. He gives me strength and purpose. He lifts me up when I feel like the best I can manage is a crawl. While I'm a firm believer in education and knowledge, I also know that ultimately it is God Himself that is in control of all things and no amount of book learning is going to override that fact. I mean this to be encouraging. Doctors have told many people out there that there is no hope for them, that they are practically already dead. They're smart people who spend their lives learning to take care of others, but they are not God. He alone knows when your time will come and no man, however smart he may be, can trump that. So if you're going through this or any other seemingly impossible battle, look to God for support and power. There is no foe He cannot defeat, even death itself.

1 comment:

  1. so much info. just told a friend about your blog and this one especially should help her and her family. keep up the good work. you are a blessing