In 2015, we received the most shocking news of our lives: our vibrant mother - a deacon’s wife, piano player at church, 30-year state employee, tireless caretaker and laundry folder - was diagnosed with stage 4 non-small cell lung cancer which had spread to the brain. Only 1 out of 100 (1%) people diagnosed with NSCLC that has spread to the brain are alive 5 years after diagnosis is made.
Our family did the best we could to care for and support each other, but cancer is relentless. It steals small parts of the person one tiny bit at a time, and to us it felt less like a “fight” and more like a dance. Five years later, we have sadly lost the bright joy of our lives and we navigated the painful journey together, with many pitfalls along the way. As our family continues on this journey, we have learned some key things that we wish we had known before.
1. Get A Second Opinion
When life is on the line, getting a second opinion should be standard. Many of us won’t buy a coffee maker without reading reviews and comparing several models. We crowdsource knowledge all the time, but when it comes to medical care, we are shy and afraid to “shop around.” This may be due to an underlying societal expectation of “politeness” or acquiescing, or may be because we’re socialized to trust our doctors at their word.
In truth, many second opinions may yield the same result/prognosis/treatment plan, and that is OK! Won’t you feel even more secure in the face of cancer knowing you have done your due diligence? Any medical professional worth their salt will not hold this against you.
Occasionally, that second opinion may differ from the first. When this happens, your two providers will need to confer with each other. This is why it may be most helpful to ask your provider to recommend someone to give a second opinion. That way, you know you are being referred to someone in whom your provider has trust AND, in the event of differing opinions, your provider already has a line of communication or awareness of the other provider to whom you were referred.
2. Explore ALL options from the BEGINNING
Even when your family or loved one has resolved to “fight” the cancer with everything they’ve got, few of us understand what that takes or what the potential result of the treatment may be. It might be information they/you don’t want to hear, but knowing all the options, including what your loved one’s life might look like with each, helps you consider aspects of life that you wouldn’t otherwise.
There are questions you don’t know to ask yet. And when you arrive at a place you didn’t expect, it may be too late to make meaningful decisions. For the person with cancer and their family, every decision and conversation you put off or avoid now will have to be addressed later - possibly by the caregiver alone, which can lead to tremendous guilt.
3. Make decisions while you can and determine a decision for every scenario
When should we stop treatment? When should a nursing home be considered? What if I can’t eat? What if I can’t control my bowel or bladder? What if I stop speaking or communicating? At what point will life not be worth living? These aren’t pleasant things to discuss, but they are necessary. It’s interesting that, while death is the only certainty in life, we treat it as if it's taboo.
For some, as long as they are not in pain and can watch TV, they want to live. For some, the idea of strangers changing their diaper is appalling and not a life worth living. For others, “being a burden” is what is said, but your family needs to clearly define what that means, requiring some probing questions be asked. Having a clear understanding of what is and is not an acceptable quality of life is critical.
4. Make moments and memories, even if it seems forced
As your loved one falls ill or weaker or less like themselves, it is tempting to go into survival mode: set out pills, take pills, try to eat, clean up vomit after eating, clean up after unsuccessful attempts to make it to the bathroom; however, minimizing your interactions can result in what seems like lost time. Yes, you are caring for them and surviving, but months go by with no pictures, no jokes, no visits to the salon, no meals with friends. All the things that make a life whole go by the wayside in an effort to survive.
Even if your house is a mess, invite people over to visit. Even if your loved one may soil themselves, take them to the park, even if it means more hassle and planning for you. Take a friend up on their offer to do your loved one’s nails. Find moments to be silly and take pictures for others to see your loved one still engaged in life.
5. Accept help
No one is equipped to handle a loved one’s decline alone. We are biologically designed for community and this is even more important in times of trial. It can be hard to ask for help, but it is so very necessary. And definitely accept any and all help that is offered to you without embarrassment.
6. Be honest
There is no glory in pretending things are fine. While we naturally don’t want to drag others down or make them uncomfortable, there is a way to be honest about the situation without falling apart. In fact, I’ve found it helpful to be open and honest when asked about mom’s current state so that I’m not harboring that inside. Putting on a front is too exhausting, especially in trying times like these. Like so many other important issues of our day, like mental illness, the more we talk about the realities of cancer and other life-limiting diseases, the more we can normalize others’ suffering and help them to not feel so isolated in their situation.
7. If possible, spend time as a family IMMEDIATELY
By circumstance, we had a family vacation a month prior to my mom’s diagnosis, complete with beach photos and some amazing family memories. We all look back at that and feel so fortunate that we had that time before things changed. This is especially meaningful if you have young children in the family who might not remember their loved one in their current vibrant state; this gives them tangible evidence of the person the ill loved one has been and the love shared between them.
8. Establish Roles
Everyone has their own unique talents, so a family can maximize care and minimize stress by delegating certain duties or aspects of caretaking. If someone in the family is in the medical field, it may be helpful for them to take charge of attending and documenting what is said at appointments and summarizing for the remainder of the family. If someone is an expert organizer, let them navigate the calendar and arrange the flurry of activities that a cancer diagnosis requires. If someone is a logical, pragmatic person, let them lay out options and choices for the patient/caregiver. If someone is a personable/empathetic communicator, let them mediate monthly family meetings.
Too often, the primary caregiver fills all roles and may have blind spots or may feel the need to forego certain things due to overwhelm. That is where family members can provide assistance. Some of us have time, some of us can take notes at appointments, some of us can cook well, some of us can organize, and some of us can be shoulders to cry on.
9. Do as much in advance as you can to prepare for the inevitable
When it becomes clear that your loved one won’t survive their diagnosis, no matter what the timeline looks like, try to make as many arrangements now as you can. This includes the obvious, such as determining funeral arrangements, but could also include writing your loved one’s obituary or picking the outfit they will wear for the funeral/burial. If you have young children, it’s important to decide if you want them to attend the funeral or not and to also start working through how you will explain your loved one’s death to them; it’s wise to seek the help of a counselor or pastor who can provide some guidance in this area. It will feel strange, but it’s recommended to do as much as you can now to remove some of the stress when the day eventually comes.
10. Become the friend you need
I shudder to think of how frequently I responded to a friend’s plight with a mere Facebook post of “Prayers” [insert emoji heart and praying hands]. Now, I realize how much more meaningful a personal message can be. Someone’s favorite memory of your mother, someone’s heartfelt experience with a similar issue, someone’s’ expression of how important your family is to them. And for heaven’s sake, someone reminding you that you’re doing a good job! These words have bolstered our family and reoriented us in times of sadness and struggle.
Prayers are always wonderful, but sometimes action is what is needed. There are, frankly, times that prayers do not feel helpful, but a ride to the doctor or someone volunteering to sit with my mom so I can go for a run or to a movie is. Thoughts and prayers are not bad things, but knowing what I know now, I will be acting and reaching out in more real ways for others in their times of need.
We hope that our journey through this process can help light the way for others embarking on the same path. These conversations are difficult, and you may find it necessary to pace yourselves as you consider and address some of these issues.
Don't navigate lung cancer caregiving alone. Check out our Caregiver Resource Center for tips, tools, and support.