Fighting for Self-Care
When my husband and I first heard the words, “Stage 4 Colorectal Cancer”, I went into what I could only describe as “freak out mode.”
Any family member or friend of a cancer fighter knows exactly what this entails. It is a downward spiral that can affect every part of your health as a caregiver. It involves thinking about death, funerals, and things that we want to avoid contemplating. It also includes long-term plans, navigating insurance bills, appointments, and so much more.
What can we do to fight for self-care in the midst of the battle? The suggestions I have here are things that have helped us, but may look different for each caregiver/fighter situation. An important fact that we have learned is this: every journey is different for each person involved in the fight. So, as you read this, you may want to modify and pivot some of these ideas to fit your circumstances.
Find a safe place to be fully honest. I have several friends who I can be honest with, whether I’m emotionally overwhelmed, angry at the world, or having an okay day. At the same time, I have chosen to also be in a counseling group and meet one-on-one with a counselor. Caregivers and fighters need to speak vulnerably with people who care about them personally and support their beliefs, hopes, and dreams. Sometimes, this means not divulging information to people you do not trust or do not feel safe with but more importantly, you need to talk about things that may not be helpful to your partner as they are already in a fight against the disease. You don’t want to keep things from your partner but it may just not be the right time to bring that information to them. For example, I had a dream early on that involved me not being in the same place with my husband when he died. We were dealing with so much uncertainty and instability in our lives already but I was able to talk about how I felt when I woke up from that dream with my counselor. I was able to process it and think out all of the worst case scenarios with her, which I couldn’t share with my husband. A few weeks later, he was able to speak about his death and we were able to have that conversation but it also was a better discussion because I had it out in the open with my counselor earlier.
If someone offers help, take it! When we had 5 little girls, I was the epitome of a prideful woman who would see others’ offers to help me out as their statement that I was inadequate or that I couldn’t handle it myself. That was actually never the case and I wouldn’t allow them to feel helpful or to contribute to the improvement of my day because I wouldn’t accept the help. Often, people don’t know what to say but they can contribute to your medical bills, make a meal, run kids home from school, or just be a listening ear. Accepting the help, allows them to be a part of the solution and lifts their hearts in the difficult time they are experiencing too. If you need something done and someone who has genuinely offered to help, put pride in its place and take them up on their gracious offer.
Simplify your life. With technology today, there are a lot of advantages to ordering something ahead of time and then picking it up. I work at a software company, and working full time can limit my time with my cancer fighter. He has medical appointments, chemo treatments, meetings, and obligations too. This means anything I can do to simplify our lives and cut out steps pays huge dividends. The variable here is cost. Some convenience come at no cost, and some can add up. So, I work hard to be a good steward of what little resources we have. But, you’d be surprised at how many things can simplify your life for FREE and give you precious time back in your week.
Advocate for yourself, your family, and your fighter. If you need another round of chemo set up so you can schedule rides ahead of time, ask the cancer team administrators at infusion for it. If a medication gives your cancer fighter symptoms, ensure that they talk to the doctor about it. I have found that no request is impossible, no question is dumb, and 99% of the time people are eager to help. You should never be treated like you and your fighter’s questions or symptoms are blown off or not taken into consideration. Speaking up for your fighter can be done with the utmost kindness and respect to your health care team but they cannot read minds or know the symptoms you have unless you let them know. My husband’s first round of chemo, he had 12 hours of unnecessary and unbearable nausea because we didn’t call into the resources that were offered to us. As soon as his team knew of his symptoms, they rearranged their schedules to get him anti-nausea medicine and hydration. That meant that we came in “unscheduled” and it disrupted their plan for a Friday, but we did not hear one complaint. In fact the opposite was true, they expressed genuine care and dove right into the problem. We were scared to death that this is what chemo was going to look like. After all, this was the first round and our first experience with chemo. Finding that help, and seeing my husband restored to looking and feeling good, had a value that I cannot put into words. We’ve learned since to speak up and let our caregivers know.
When we are in a fight for HOPE, these steps and others like these can combine to enrich our mental and emotional health and give us the margin we need to keep pushing forward with joy and peace in spite of circumstances. I love you and you are NOT alone.