Handling Cancer Appointments
As you, my loyal readers know, Pop survived several different cancers through his later years. He was extremely strong and stoic throughout all of the physical ailments he suffered, and faced every twist and turn with a positive attitude and a strong constitution. Yup, Pop was a superhero. And even someone like that, we still need to help manage the cancer.
Every time cancer reared its ugly head, however, it catapulted us into that vicious cycle of appointments, treatment, additional appointments, potentially more treatments, and (thankfully) the remission diagnosis. It was a crazy ride that I don’t wish my worst enemy, but the rides got easier for us. Knowledge and experience truly are powerful, so I share our roller coaster with cancer to you today, in the hopes it helps you be mentally and emotionally prepared for this beast.
What To Do When Things Seem “Off”
Life is not a Hollywood movie. We never once had a “shocking” cancer diagnosis sitting across the desk from a specialist. Truthfully, most of the time it was us approaching our primary care physician with the feeling that something was just not right, and asking if the cancer could be back. That is one of the greatest benefits to being Mayor of Crazytown—that sixth sense about my parents’ health that helped us get a quick jump on the enemy.
With the kidney and the bone, I diagnosed Pop well before the doctors gave us the news. It was pretty funny, actually, when the kidney doctor gave us the news we were like “Yeah, no shit. Let’s get to treatment,” and he was the one taken by surprise!
So the title of this section says it all: Trust your instincts.
The bone cancer was repeatedly misdiagnosed by specialists, but we kept pushing and forcing tests, because I just knew it had jumped to another part of his body. Frankly, with your loved one, nobody is more of a “specialist” and expert than you. Remember, that’s why YOU manage the person with cancer.
Interviewing Oncologists
This section is a hard reminder for you that YOU are still in control of the outer body experience known as cancer treatment. It is your loved one who is the patient, and they deserve to be serviced by someone they can respect and trust. Also helps if it is somebody they can actually like! It all starts, of course, with your primary care physician. Ours is fierce. FIERCE. She is five feet two inches of pure power—every specialist we went to through the years commented on how thorough she is, and we agree.
There were several times, however, where my parents just didn’t connect with her recommended specialist. If that happens to you—and it probably will—ASK FOR ANOTHER REFERRAL. There are no hard feelings when you do this, and the only person who is “put out” is you, because you need to schedule another appointment! That’s how we manage cancer for people we care about!
Pop had an excellent oncologist—someone with excellent education and training, many years in our community, a fabulous assistant, an excellent personality, and—most importantly—was accessible without waiting months for an appointment. Those are the qualities I suggest you look for in an oncologist. Particularly the fabulous assistant, because that was who we dealt with more frequently.
Equally important was Dr. G’s respect for my position. Since I was an integral part of the care team as Mayor, I built a strong and HONEST relationship with all of Pop’s doctors. I made it quite clear that knowledge is a powerful currency in caregiving, and that I could handle any diagnosis or information just as professionally as a colleague.
So, to conclude this section quite easily: You are interviewing them at the first appointment. It is up to you to decide if they are worthy of caring for your loved one.
Choosing The Right Course Of Treatment
Mom is 92 and extremely healthy (physically). No matter what comes down the road, there will be no invasive treatment. None. Pop was 84 at the time of the last cancer diagnosis. We operated and I have no regrets. It’s up to you to decide when the hands of time have won the battle and you will refuse treatment. If that is where you are as a family right now, move to palliative care and help them face the future with dignity. But if you want to fight, you’ve got some decisions to make.
Radiation First
Often the first stop on the cancer railroad, radiation is the least invasive of the treatments that might be available to your loved one. If it is warranted, consider it fully and carefully, with the knowledge that current medical rules indicate that radiation is only allowed twice in your life. So, if your loved one is fairly young, this is a difficult decision.
From the perspective of Pop, radiation was offered for the first cancer in the mid-60’s, and was quite effective.
Trying Chemotherapy
Pop went through chemo at two different junctions: once before and once after surgery.
I’ve repeatedly stated that Pop was extremely strong, and did not give in to complaining. The chemotherapy treatments Pop had were quite invasive, but he had few side effects. Modern medicine has traveled many miles to create chemo that doesn’t necessarily leave the patient bedridden and physically ill after treatment. Your mileage may vary wildly from our experience. Based on what I witnessed with Pop on multiple occasions, however, I will absolutely agree to chemo for myself or Sweet Husband if it is prescribed to us.
Surgery Is Required
This is the “Patti treatment” version of how to manage cancer: Cut that bitch out!!!
If it is available to me at some point in the future, I will absolutely agree to surgery to remove that killer from my body. Now, it’s easy for me to cavalierly agree to cancer surgery, but it is important to understand that not only will you face a long and difficult recovery, but that you still might need to have chemotherapy or radiation to “clean the margins” of the area that was infected.
How Much Time Are We Really Talking?
A long time.
Having to manage cancer is not for the faint of heart. It’s a process that is slow and methodical and frustrating. Every day I had to wait, I was sure the cancer was getting bigger, stronger, and was winning. It’s a hard process to navigate. This is particularly true when cancer isn’t the first diagnosis. For example, with the shoulder, they thought arthritis, cracked clavicle, frozen shoulder, etc., until they narrowed it down to bone cancer. Frustrating.
This is another plug for you to keep very extensive, detailed records of what is happening medically with your loved one. I was able to look back on previous cancer treatments to remind myself how long each step takes, and it did help me not feel quite so anxious. From the initial visit with the primary care physician, the clock starts ticking, and you need to pack your patience and trust the system to work in your favor.
Follow-Up Is Exhausting, Too
As you know from Mom’s battles, I hired a full-time person to stay with Mom, and escort her to follow-up appointments. With Pop it was all Patti all the time. I had to take an incredible amount of time off from work for all of the follow-up appointments and treatments. Chemo after the kidney was every Thursday for absolutely ever, not including all of the oncology and primary care visits. It is exhausting to you emotionally and mentally, and it is an incredible amount of time you need to cover appointments.
Looking back, having the benefit of my Mom’s journey, I should have hired someone to handle some things with Pop. He would have hated it, but it really wasn’t necessary for the driver to and from chemo to be me—I was literally just a chauffeur service. Consider passing off some of that driving to your unpaid or paid team, if only to give you a break from the relentless appointments.
Celebrating Success
So they removed the cancer, or radiated it out, or chemo-ed it into silence. No matter how it happens, you’ve won!!! Congratulations!!!
Be prepared for the next round. I personally believe that once cancer finds you, it will find you again, so get ready. You are now more experienced, and better equipped to handle the next round. You’ve kept detailed notes, and, most importantly, have a cancer care team that you know and like—that is extremely important.
So celebrate, for sure. Lift a glass and curse the beast that is cancer. Smile and laugh and party.
Then go into your private space and prepare for the next battle, Mayor.
THANK YOU FOR READING THIS FAR
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