Cancer: Nothing about this is normal.

Posted by kevinakear @kevinakear, Jan 30, 2022

A year and a half after my pancreatic cancer diagnosis and subsequent treatment, I am frequently asked if my life is getting back to normal, or worse yet, some sort of new normal. After cancer, there is not normal, new normal, or anything even closely resembling normal, not for me. I tire easily, sleep a lot, am quick to anger, always feel awful, and trust no one.
Seven weeks in the hospital from complications, six months of aggressive chemo, four insulin shots daily, and a CGM disc on the back of my arm later, nothing is normal. Even the pandemic seems mundane to me.
My four-decade career as a truck driver is over, as I cannot control my blood sugars yet and my feet have neuropathy making it difficult to "feel" the pedals. Very important in controlling 40 tons of big rig. All this happened so fast, it was unreal.
In addition to diagnosed PTSD, the survivor guilt set in as most everyone believes pancreatic cancer is a death sentence and the load of guilt many people laid on me when I told them I had pancreatic cancer is still weighing heavily on me: they all expected me to die and take their guilt with them. Sorry to disappoint! And why does everyone think hiccups are funny. I don't!
I tell everyone whom I encounter going through chemo this seems like a punishment when in fact it is a gift, or at least it was for me. That gift is clarity: I now see everyone for who and what they really are and that is not usually a good thing. This was the worst thing that ever happened to me, but I would not trade the experience for anything!
Us cancer survivors are different from everyone else; they will never understand it and hopefully never have to. I proudly wore my BioFlo Passiv Valve port gum band during chemo and now refer to the port scar on my chest as my Red Badge of Courage and encourage all others to do the same. Nothing normal about any of this
My second scan was clear: the cancer survivors I know just kind of nod approval while everyone else acts all crazy as if this is all over and life can go back to normal. I don't mean to sound unappreciative, but to me, it's just a six month stay of execution.
Maybe that will feel normal after five or six more scans, but I hope not.

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

paddyo | @paddyo | Jan 31, 2022

Thanks for saying it out loud.

Becky, Volunteer Mentor | @becsbuddy | Jan 31, 2022

Thank you, @kevinakear . You’ve said everything I’ve wanted to say and something most people need to hear. I don’t have cancer, though. I got an autoimmune disease that affected my brain. My life has not returned to “normal.” It’s a mental and physical struggle everyday. After i left my job as a nurse, i got involved in lots of community volunteering, but i cant do any of it anymore. Guess I’ll stop now before I really get down in the dumps again. Thanks again for expressing yourself so well. Becky.

nae | @nae | Feb 1, 2022

I’m praying to be a survivor.

Lori, Volunteer Mentor | @loribmt | Feb 1, 2022

Good morning, @nae I’ll join you in that prayer. I see you’ve been a member in the Connect forum for several months and is the first time you’ve written. I’m so happy to see that you’re joining in a conversation. But sadly, I know this comes with story. Would you like to share it with me?

nae | @nae | Feb 1, 2022

In reply to @loribmt "Good morning, @nae I’ll join you in that prayer. I see you’ve been a member in..." + (show)

I’m in chemo right now. I’ll share a little later.

Lori, Volunteer Mentor | @loribmt | Feb 1, 2022

In reply to @nae "I’m in chemo right now. I’ll share a little later." + (show)

That’s never an easy journey. I hope you realize you’re not alone. I’m here for you whenever you’re ready to share. Many of us in the Connect forum have gone on a cancer journey where the odds weren’t in our favor and we’re on the other side, alive and having a second chance at life.

Are you tolerating the chemo ok?

nae | @nae | Feb 1, 2022

I’m doing ok on the chemo.

kevinakear | @kevinakear | Feb 1, 2022

When I was going through chemo, I “enjoyed” it as it was four hours every other week where I was taken care of and there was no interruption from the outside world. I rocked out to heavy metal on my Prime account which kept my mind off the deadly chemicals pumping into my body. Nurses reminded repeatedly it is cumulative so the cold sensitivity in my hands and feet would get progressively worse. That went away about a month after chemo ended as did the tightness in my throat. That tightness and cold sensitivity forced me to drink regular Coke warm and believe it or not, I still do.
The chemo set I was on included a substantial amount of steroids, so I was ravenously hungry and gained most of the 23 pounds back that I lost from the Whipple surgery. I was already losing some of my hair, so the possibility of losing what was left didn’t bother me, although I did joke with everyone who brought it up I was going to get a Farrah Faucet wig.
Just remember this about cancer and chemo: you have to find something to laugh about, because if you don’t, you’ll cry!

bb21 | @bb21 | Feb 1, 2022

In reply to @kevinakear "When I was going through chemo, I “enjoyed” it as it was four hours every other..." + (show)

You are so right. Find something positive like how caring the nursing team in chemo is; the fact thaat you have meds you can try to help manage your disease; the fact that your friends and family support you and are on the trip with you. Laugh for sure. Cry if you need to but go back yo smiles and enjoying life.

dakotarunner | @dakotarunner | Feb 1, 2022

In reply to @kevinakear "When I was going through chemo, I “enjoyed” it as it was four hours every other..." + (show)

I know I did some crying during chemo and wanted to quit at session 5 of 12. But with the strong urging of my wife, I went through the whole thing. I tried to get control of my mind, something I had not been doing. I quit sitting in a certain chemo chair, as it seemed that I always got nauseous in that chair - that was a mind game that I finally got over. The nurses gave me a big pep talk when I wanted to quit, not an ass chewing, but a pep talk. Some things got better, and some (not sleeping) got worse. but I got thru it, and things got rapidly better. I had dropped 55 pounds when I was sick, then surgery, and chemo. But at the end of chemo I had a good appetite and could eat like horse, and still do.
I also began to feel better mentally, and have gained back 31 pounds. I pushed as hard as I could physically both during chemo and after. I came to realize I am in a lot better boat than many I had seen at Mayo, and in the infusion room. I had three friend who were in the infusion room at the same time. I say "had", as they have all passed on - which is another point to ponder. I am 3 years out from Whipple, so God has more plans for me, and what ever they are, I will gladly face them.
Not everyone has the same results after Whipple and chemo, so there is no one story fits all. What advice I will offer is to not keep everything to yourself. You are not alone! Talk to your nurses, spouse, friends, even enemies if you are really in a crappy mood! 🙂
Before chemo, all I had heard about it was the nausea and other not nice side effects. Yes, I did run into that, but when people ask me about it, I tell them the main culprits that are not mentioned is how it beats you up mentally and emotionally. I am presently have a recurrence from another type of cancer than the pancreatic. This timer I am emotionally, mentally and spiritually ready for what ever comes - be it chemo or some thing else. And I will find something to laugh about.
Blessings to everyone.