COVID changed how so many hospitals, cancer centers, patients, and their families have to approach treatment and procedures. A year and a half later, and most facilities are either strictly limiting or not allowing visitors at all under any circumstance. This has been incredibly hard for cancer fighters as they now go into long treatment days, difficult surgeries, and complex appointments without the benefit of their support system.
Bladder cancer treatment through COVID
I was one of the cancer patients that found themselves crossing the divide of cancer treatment pre-COVID and in the middle of a pandemic. I was diagnosed in July 2019 and I consider myself very lucky that the hardest part of my cancer journey was before the pandemic had taken hold.
Throughout difficult surgeries, multiple procedures, and countless hospital stays, I was able to have everyone and anyone I wanted there with me. I couldn't imagine going into my radical cystectomy without my husband and mom both by my side.
Whispers of a new viral infection
As I was starting maintenance treatment in late 2019 we heard the whispers of a new viral infection making the rounds, but didn't think much of it. I was only able to have my mom at 5 of my treatments before my cancer center went on lockdown in March 2020. Since then I've been doing all of my treatments and procedures 100 percent solo.
I have now navigated 24 treatments, scans, difficult scan result conversations, procedures, and changing cancer centers all on my own. Although doable, it has never been easy.
Before cancer centers had to lockdown for patient safety they were places of warmth and activity. At my cancer center, there were therapy dogs, music, volunteers, families with cancer patients, and a general feeling of positivity. But then for safety, the visitors were prohibited, the therapy dogs no longer allowed in, chairs spaced apart, magazines and books removed. For some reason, even the TVs and music in waiting rooms were turned off. From spaces where patients would converse and support each other to mask-covered faces and a general understanding of staying far away for safety - the entire mood of the cancer center has changed.
Prioritizing safety and adjusting
I'm sure every single cancer patient, including myself, understands that this is all for the safety of a very vulnerable community when it comes to COVID. We do what we have to do and power through visits as best we can. But the toll it has taken on everyone cannot be denied. There are some visits when I would give anything to have my husband there with me to help me make decisions rather than frantically texting back and forth while I talk to my doctor.
I do have to admit that I'm almost thankful that I was forced very early in my treatment to handle my appointments on my own. I've had to quickly develop confidence and understanding to navigate referrals, requesting second opinions, and advocating for my care.
I'm also thankful at times that my husband and mom don't have to live in this cancer world with me 24/7. Even pre-COVID, hospitals and cancer centers will always have an undertone of sadness. Being there is a reminder of my reality.
Treatment through COVID - no easy feat
I have noticed not being at all of my appointments has allowed my mom and husband to have a degree of separation from cancer and I think that has been incredibly beneficial for them. I hope very soon that we will get COVID under control and cancer patients will have the choice to bring their support system with them.
Personally, I think I will continue doing these on my own, but that is the important part, having the choice to bring your family to these hard appointments instead of being forced to go solo. Tell us about your experience in the comments below, or share your story with the community.
Have your views towards bladder removal changed since you were diagnosed?