Patient and Caregiver Resources

Navigating the Cancer Journey

Cancer is a tough and long journey. To help decipher what you or a loved one may be going through now, Delaware Palliative compiled answers from three cancer survivors to five of the most impactful questions for someone not traveling the cancer journey.

“What should we call people who are fighting cancer? How should we refer to them?”

  • K.K. — Call me by my name! Cancer may describe me, but it doesn’t define me.
  • K.W. — Call people by whatever they feel defines them in their journey…
  • E.N. — If you are surviving the fact that you have cancer, you’re a survivor, from day one when you hear the words you have cancer.

“Why do words matter to someone who is facing cancer?”

  • K.K. — I wanted everybody around me to be my cheerleader, and not my reminder of not really feeling that great that day. I felt like if I said I don’t feel well, then I would feel worse. Just be as normal as humanly possible around me and sort of just take their cues from that, so I like the regular question, “How ya doin’?”
  • K.W. — Talk normally: “What movies are you watching?” No need to dwell on it. They already know what they’re going through.
  • E.N. — The words that bothered me were, Wow you look really good! What did you think I was going to look like? What did I look like before? I know they meant well, but those were hard words to hear.

“What do you wish you had known before you were diagnosed with cancer about this journey?”

  • K.K. — Never underestimate the power of sleep… Having to sign all the papers was a sensational, overwhelming activity, which I had to read 3–4 times…There are certain things that people just cannot help you decide, and it can be very, very overwhelming.
  • K.W. — All the resources are out there. Things we never thought we would qualify for, or even thought to have that thought.
  • E.N. — …It’s not the flu, and actually once treatment is over, that’s when we start really dealing with the emotional impact, and so it’s just the beginning…follow-ups, treatments. It is now a lifelong journey, it’s not just a flu that comes and goes…After 11 years, I still get nervous every six months when I go for my bloodwork.

“What are some resources you’ve found on your journey that others may find helpful?”

  • K.K. — There are a lot of resources, and at the same time, it can feel like you don’t have the resources that you need. and For Pete’s Sake are two that were the most helpful to me.
  • K.W. — I benefited from both Cancer Support Community and For Pete’s Sake. For Pete’s Sake sent us on a wonderful trip to Orlando that we didn’t know we needed until we were there. Don’t feel like you don’t deserve it. I recommend just doing some research and finding a list of possible resources that the person might need like maid services, grocery pickup, in-home healthcare options, therapists.
  • E.N.— I found the most helpful thing for me was other patients. Getting tips and tricks, and they don’t all work for you, but at least it gives you something to try.

“How can friends and family help people in their lives who are fighting cancer?”

  • K.K. — Don’t just ask, just do it. My neighbors would call and say, “We’re going to the park, I’m going to take your kids along with us, okay? You go take a nap.” The other thing is, most cancers are not done in a month. When the diagnosis comes, you get flooded with people providing support but it is the later months that matter the most, I was still in the middle of it. That’s when I really needed something, but I felt bad for asking.
  • K.W. — Bringing foods not only helps the person going through it, but their family, who is already so spent helping the person with whatever side effects they’re having. Caregivers can’t always be there for treatments; they have to work. Offer treatment rides. No matter what you want to offer, it’s appreciated, not just by the person who’s going through it, but by their caregivers too.
  • E.N. — Do something that makes them feel normal. One friend took me to Target. I wasn’t able to do that on my own, so she took me out and it was the greatest thing when I was going through treatment. Instead of saying “Let me know if I can do something for you,” just say “I’m bringing a meal.” I appreciated that because it made me not have to ask for the help, which was hard.

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