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Getting Through the Cancer Journey – Words from Survivors and Caregivers

On March 20, a panel of Cancer Support Community alumni will gather to share the most valuable lessons they’ve learned in their cancer journey. The panelists include survivors, spouses and caregivers who are willing to answer your questions and talk about what they wish someone had told them when they were starting their journey.

We are pleased to share a few of their tips here as a “preview” of the upcoming event. (If you’re reading this after the event and have questions, please feel free to contact us by leaving a comment or calling 805.379.4777 during Pacific Time business hours.)

Thanks to our Alumni Panelists for allowing everyone to benefit from their knowledge and experience!

Lynn Buchanan, two-time breast cancer survivor

Lynn Buchanan March 2014It’s important to get your informational needs met in order to feel a sense of real control with your recovery. Here are some tips for making the most out of your doctor visits:

  • Prepare a set of questions ahead of time. Get some help if you feel stuck.
  • Next, plan your approach to encourage your doctor to sit down and help you.
  • Sometimes telling the truth about your struggle to communicate is just the ticket.
  • Take notes and you’ll feel in a lot more control.

Evette McAlister, breast cancer survivor

  • Evette-Mark-McAlisterMany patients make the assumption that, because they’ve filled out stacks of paperwork answering various questions, the doctor will already have an idea of who is sitting in front of them. This couldn’t be further from the truth.  Don’t be afraid to express concerns and feel free to ask as many questions as possible.
  • Don’t let your doctor leave your room until ALL your questions have been answered.
  • Being involved with a support group just three days after my diagnosis, instead of waiting until later, gave me loads of insight leading to an arsenal of questions I could ask the doctor.  All were very helpful too!  Many of the doctors were impressed with my questions.  They were all surprised that I’d just been diagnosed. The medical terminology I used and knowledge I displayed, led them to believe I had been researching for months.  When one doctor smiled and shook his head, I asked…”what is it, am I asking too many questions?”  And he answered, “No, you’re just asking all the right questions.”  This was the greatest feeling of empowerment I’d felt since my diagnosis and it gave me the fuel I needed to deal with my cancer from a place of strength!
  • Remember, you are hiring these doctors to work for YOU.

Mark McAlister, spouse and caregiver

From my perspective as a parent and spouse the most important 3 things are:

  • Remaining in regular contact with people who help you maintain positive perspective while you deal with so many unknowns.
  • Whether you want to or not, the journey helps you truly prioritize and appreciate the present moment. Demonstrating this focus helps the kids feel less threatened and the spouse feel less edgy. Your ears and eyes are very important as all the new information comes in.
  • Learn the difference between healing and treatment, they are tightly intertwined…for a while, but they diverge in profound ways and should be managed independently.
  • I know I said that there were three things, but there’s one more: Listening to yourself, to your kids, your supportive friends, your loved one and their doctors; with humility and suspended judgment is, perhaps the most important and challenging skill to learn, and definitely the most helpful thing you can contribute.

Together, among all the things I tried, these were the most helpful combatants to caregiver burn-out, fear and the sense of helplessness; because they feed your strength as a stabilizing force in a turbulent time.

Lianne Ingalla, Breast Cancer Survivor

  • Jesse-Liane IngallaOne of the best things you can do is to seek a second, and even third, opinion about your diagnosis.  By the time you arrange for them, you’ve had some time to calm down and think more clearly about what additional questions to ask.  You start to gain perspective on what’s important to you, like what treatment options do you have?  What are the risks and benefits of each? Having options starts to give you back some measure of control.  Loss of control can be almost as frightening as the diagnosis and treatment.
  • Another tip I swear by is to talk with others who’ve been through something similar.  I had a Buddy Book Buddy who was very open in sharing her experiences, strength and hope.  Very powerful. [The Buddy Book is a CSCVVSB resource that allows people to connect with others who have their same diagnosis. Contact CSCVVSB for more information.]
  • My support group members truly understood what I was going through.  That was like hope in a bottle!  Having a safe place to share my fears and stressors was an outlet for communication that was strongly needed.  The bonds that formed with those going through the cancer journey brought a richness to our lives, and spurred on deeper communications and connections.

Jesse Ingalla, Spouse, Caregiver, and Prostate Cancer Survivor

  • I encourage people to approach this with an open mind. Be open and observant.
  • You never know what will hit you at a moment you do not expect.
  • When we first started attending the Cancer Support Community (then called The Wellness Community), I was struck to see and meet people 10 and 15 years down the road from their original diagnosis. Living a normal life!!! What it meant to me is that this cancer is beatable – something that eluded my thought process at that point in time. It was this beginning that put us in the right direction to recovery. Hope is an elusive state of mind. That is what the Cancer Support Community is all about: HOPE.
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