4 Tips on What I Wish I Did After My Cancer Diagnosis

Article

Because I am a lifelong learner and an educator at heart, I always feel the compelling need to share in case someone else out there might benefit from the fires I've walked through.

I am happy to share that I am now 18 months cancer-free! Wahoo! Yes, I am celebrating...yes, I am grateful...yes, I stop and smell the roses every three months after my blood work and PET scans come back cancer-free. But, I realize in this process (no, it's not a journey, that would be fun and by choice) that there are many areas where I could have done better for myself and my family.

Because I am a lifelong learner and an educator at heart, I always feel the compelling need to share in case someone else out there might benefit from the fires I've walked through. These are just a few tips I wish I had done better during my diagnosis, treatment and recovery.

1. Help: Accept it and keep it coming long after the sutures are removed. I was very fortunate to have a community of friends who delivered meals and offered to grab my three active girls and take them any place while I rested. I was so determined to prove that I was going to be OK, I cut all the help I truly needed short. I told everyone I was all set, and continued on my way, hobbling along trying to make dinners and keep my family entertained over the summer, even though I couldn't participate in our usual summer activities.

2. Time off: If you can take the time off from work, more than just your "vacation week" or if you can survive financially with an extended leave, you should. I missed just eight days of work, including the day of my surgery. This was a huge mistake. I held my head high with my drains hidden and limped my way into work while I fought back tears of pain. No one should have to go through this. My surgeries to remove all the cancer were extensive enough physically. On top of that, emotionally, I was a wreck, seeing my oncologist every week and not knowing when and if I would be told that they didn't get all the cancer, it had spread even further, etc. I should have been working on my healing physically and emotionally.

3. See a therapist/social worker/etc: That being said, my daughter was just recently diagnosed with a chronic lifelong disease. As part of the program that we parents were emerged into to learn how to care for our daughter, we had to meet with a social worker twice: once at diagnosis in the hospital and then just recently to see how things were going now that we were home in "real life." Why this isn't required with a cancer diagnosis is baffling! My first phone call from a doctor was, "Yes, it's cancer...it appears to have spread and we don't know how far. You need to make an appointment with an oncologist and oncology surgeon."

At that point, I knew I was at least stage 3. Talking with someone to deal with all these overwhelming emotions and the technical side of this diagnosis (where should I start my care, who do I need to make appointments with, what does this mean, am I going to die, what do I tell my children) would have helped tremendously.

4. Turn lemons into margaritas: Once you have your own treatment and care plan managed, figure out how you are going to turn this sh*** diagnosis into a positive. Do you write? Tell your story. Do you paint? Put your fears onto canvas. Take this diagnosis and figure out how you can help someone else who might be going through the same as you.

We all just do the best that we can when in stress and turmoil. Don't be too hard on yourself and remember that you are not alone.

Related Videos
For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
Yuliya P.L Linhares, MD, an expert on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Image of a man with a beard.
Image of a man with gray facial hair and a navy blue suit with a light orange tie.
Image of a woman with black hair.
Related Content