Six Suggestions from a Cancer Patient

Thoughts about managing cancer from Tina Castañares, as told to One Community Health

 Blanketed by love during a chemotherapy treatment.

Blanketed by love during a chemotherapy treatment.

When I was diagnosed with Stage III ovarian cancer in June 2017, it was certainly a hard pill to swallow. But having been a longtime medical provider and knowing something of what was to likely to come–surgery, chemotherapy treatments, episodes of recovery and more—I knew that my best allies would be my family and friends, my health care team, and my attitude and personal philosophy.

Life had changed. Dramatically. But that didn’t mean it had to end. For me, how I accepted and appreciated the experience made a big difference in my quality of life and, I believe, my health outcome so far.

Nearly one year later, I’m not cured but elated to be in remission. I’m also feeling very grateful to get to share a bit about what I’ve personally learned on this journey—suggestions that might support you or your loved ones in the event of a cancer diagnosis.

Be your own best advocate. Having cancer and going through treatment is challenging on many levels. It definitely reminds us that we’re not in control of things. But at the same time, cancer is your chance to really advocate for yourself and your needs. The best way to do that is to research what you’re facing—the diagnosis, the treatment options, ways to get support physically, emotionally, spiritually, socially. Don’t hold back when it comes to asking good questions. Connect with your providers and all those on your health care team to find out what you need and want to know.

Also, reach out to other cancer patients to get their insights and “best practices” for cancer management and healing. They are a treasure trove of information, experience, wisdom, advice and, usually, encouragement. I was considering not taking treatment, but it was other cancer patients and their family members who persuaded me—and I’m so glad they did. Others had great tips about chemotherapy, losing my hair, eating well, getting exercise, spiritual and psychological support, and much more.

Communicate your experience in ways that feel right to you. Some people prefer to remain private and keep quiet about their cancer diagnosis, treatment and prognosis. Others feel more comfortable being public about it. Regardless of whether you decide to talk about or share your experience with others, know that whatever you decide is ok. It’s your life, your decision.  Don’t let others’ judgments or opinions convince you to go against your authentic wishes and needs.

Personally, I used Facebook whenever I’d had a chemo treatment. It was the easiest and fastest way to get out updates about what was going on with me. It turned out to be very effective because then I didn’t have to update people every time I bumped into them at the grocery store. Many of my friends and family were following me on Facebook and so they knew the latest information. I didn’t have to keep retelling the story, which can get a little tiring.

Even earlier, I started used Caring Bridge, which is a wonderful resource and blog site for cancer patients and others managing illness or disease. Some people share their news about treatment or diagnosis by sending group e-mails, using phone trees, or having a designated friend or family member do the communications.   Do whatever is best for you.

Try to let the experience open you up. Cancer doesn’t have to be about giving up, going it alone, or withdrawing from the world. In fact, many people come through their cancer experience feeling more engaged, more focused, even more enriched from all the learning, love, forgiveness, noticing, and gifts of service, friendship and support.

 Tina Castañares, along with One Community Health's CEO David Edwards, at the 2016 Northwest Cherry Festival 5K/10K walk/run.

Tina Castañares, along with One Community Health's CEO David Edwards, at the 2016 Northwest Cherry Festival 5K/10K walk/run.

Even small efforts matter and can help a lot. For example, the chemotherapy drugs hit me hardest in the mornings. Instead of staying miserable in bed just waiting to feel better, I adopted a practice of spending those mornings looking at beautiful pictures on my cell phone. Or, I’d read a poem or two, focusing on those words instead of how queasy I felt. The point was to get my mind on something calming. And it worked.

So this was a little “trick” I did. Other people take walks at the hard times, or read, or write, or meditate. What you choose will, again, be personal to you. Recognize the value of doing something proactive to resist shrinking inside or closing down.

Give your helpers guidance. When you get cancer, people usually step forward and ask if they can help. It could be coordinating a “Meal Train” to bring food to you and your family. It could be driving you to medical appointments. It could simply be sitting beside you, sharing stories of life, work, whatever.  Sometimes you’ll want to say no to visits or invitations because you need rest. The best thing you can do is to let people know what you want and when you want it.

Feeling too weak, shy or overwhelmed to figure all this out with everyone? Consider asking a close friend or family member to organize it for you, tasking that person with this one specific role. There’s no shame in stating what you need (and don’t need). It’s been said that there can be no giver without a receiver of the gift. And it is truly a gift to to let people help you. One more thing: It’s been shown that cancer patients do much better with treatments and even outcomes (life expectancy) if they have a network of good friends and family

If you’re finding you aren’t getting some much-needed support from others, most major health care organizations and cancer centers have programs that can help. For example, Volunteers in Action at Providence Hood River Memorial Hospital is all about galvanizing the talents and skills of volunteers, matching them to patients in need.

Talk about the big “what if.” By this, I’m referring to the chance that your cancer might take your life—a topic that’s really tough for most of us to tackle. Many of us are scared of death or dying. And our society doesn’t make our perceptions of it any easier. These aren’t topics that most people really chat about, plan for, or contemplate for long. Meanwhile, lots of money and energy go toward trying to convince people that death can somehow be avoided or postponed indefinitely. Of course, it can’t.

This can all be quite hard for anyone with a serious illness and the likelihood of a lifespan much shorter than they’d expected. My advice? Let your loved ones know your perspectives and beliefs around death. Talk with them about your advanced directive (be sure you have one!), appoint a health care representative to help make decisions when you no longer can, and share any other wishes about the end of your life (wills, financial arrangements, memorials, etc.). Make sure everything important is in writing, and that people know what you want. And hey, getting practical about the death doesn’t have to mean you give up hope of cure or long-term remission.

Keep in touch with your primary care provider. The wisdom and support of a great health care team, including spiritual care, certainly matters in the cancer experience. I’ve found it’s also important to stay in touch with your primary care provider. Often they aren’t involved as closely as before, once a patient receives a serious diagnosis – simply because the patient now has so many appointments with specialists.

If you have a patient care team at OCH, one great way to remain more engaged and connected with your team and provider is through the MyChart patient portal. Here, you can send messages, convey concerns, ask questions, share great news, give updates and more. Given that this tool is free and available on the OCH webpage, MyChart is one of the fastest ways to remain in touch with your provider, keep your care team in the loop, and get access to the care and support you need.


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AUTHORED BY:

Tina Castañares, MD
Guest Blogger, One Community Health