Real Life Cancer Caregiving

Advocacy Series: #5 – Adjust As Needed

In my professional life, I lean on a strategy I call “test, measure and adjust”. What I like about it is that it encourages experimentation, it creates space to identify what’s working and not working, and it invites creative alternatives.

The more I’m exposed to caregiving, the more I believe “test, measure and adjust” is a relevant strategy to help navigate the changing demands of cancer. There are a lot of things we cannot control related to cancer – yet there are many things we can experiment with, take note of what we’re doing (or not doing) and note the response and subsequently, adjust. It’s a strategy we’ve found to be helpful in getting Jeff and me closer to his quality of life goals and it creates the connection we both desire.

It doesn’t remove all the worry, anger or sadness. What it offers up is a steady foundation or framework that helps Jeff and I address and adjust to issues as they come up.

And issues always come up.

For someone living with metastatic cancer, each day brings a different experience that impacts the mind, body, and spirit.

Yesterday, it was a bone pain flare.

Today, we had an impromptu ultrasound on Jeff’s leg. A consult with a vascular surgeon is the next step.

Tomorrow, we’ll take it day by day.

All cancer caregivers and cancer warriors know this…

Cancer is the gift that keeps on giving. Every treatment has short-term and long-term consequences (a.k.a. surprise, side effect, curveball, new challenge). What you learn as you go through the ‘journey’ is how to manage each surprise with grace (a.k.a. new normal).

Adjust, As Needed.

Our loved ones are the decision-makers of their lives. They know what is important to them and what they need to get through each day. Most days they may have it handled, they will be on top of questions and can articulate what they need. Other days, they may be cloudy, fatigued, or in pain and may ask for extra support during appointments or daily activities.

Every day I ask Jeff: “How can I support you today?

I ask because I’m not a mind reader. I listen and adjust.

  • Maybe he asks me to remind him of a question or topic he wants to address with the doctor.
  • Sometimes he asks for help with a few PT exercises as he works hard to get stronger.
  • Most of the time wants a hug and we tell each other that we love one another.
  • Once in a while, we’ll both lie in bed and have a real-life pity party.

Afterward, we find the strength within, adjust as needed, and pull together an experiment to tackle the next adventure.

Every day I ask myself: “How can I support me today?

I ask because I want to keep my self-care a priority. I listen and adjust.

  • Maybe I need to run an errand and have some me-time outside of the house.
  • Sometimes I like to work with Jeff on a project together.
  • Most of the time I remind myself that what I’m feeling is reasonable, that some days are much easier than others and I focus on one day at a time.

This is our strategy – we test, measure and adjust.

It wasn’t always this way. It’s taken a lot of honest communication, experimentation, and negotiation to create what works for us.

What Jeff has to say…

“It’s not unusual for us to get tossed a curveball from some direction. Something comes up whether it be a test, a scan, something – and then realizing we have to adjust.

There are also days when I don’t feel that great and as much as I try to not let it affect my mood – it can. The last thing I want to be is cranky to Jen or to my medical team when they are trying to help me. So when Jen asks how she can support me, I feel comfortable letting her know I’m having a bad pain day. I let her know how she can help and sometimes it’s shielding me from the things that will make me more cranky. For example – sometimes what helps the most is her stepping in to talk with the care team so that I can get an extra hour of sleep. That helps my piece of mind and helps to reduce stress.

There are so many unknowns that I have to be ready to adjust – regardless of how knowledgeable my medical team is – there’s only so much we know about the disease. One minute everything can be fine, we can be on a path, a direction and the next day, we get scan results and have to rethink everything.

I’ve learned that I can’t count on things being set in stone. I need to be able to adjust.”

Now it’s your turn.

 

How do you adjust as needed when facing the daily demands and ‘surprises’ of cancer? Share in the comments 🙂