It’s shortly after 3:00 AM. I’m sitting at the kitchen table. My neck feels like it is on fire; a result of 30+ radiation treatments. I’ve got enough grease on my neck to lubricate the wheel bearings on an 18-wheeler with some left over. Theoretically, it helps with the pain.
I unbutton my top so I can be fed through a stomach tube. The radiation destroyed my ability to swallow. I can feel scabs sticking to my collar, pulling off my neck.
I’m spending 18 hours daily in my Lazy Boy. I’m full of mucus, my salivary glands no longer work. I wake up every hour, dry and unable to breathe. Coughing, gagging and spitting are a constant. Fatigue never goes away; it’s hard to concentrate.
I look across the kitchen. My wife Jo is crushing pills to blend in with my milkshake. Much like the mother of a newborn, she too is dog-tired. She sleeps in bed, and I chose the office chair so she could sleep. She still wakes up every time I cough too loud.
She looks up, catching me staring at her; smiles and asks, “What?”
I said, “You are amazing!” Earlier today I stared at our wedding photo hanging on the wall for over 30 years. Our eyes are locked together as we committed to one another, “In sickness and in health, till death do us part.”
Here she is, middle of the night, very tired, crushing pills so she can feed me, with a smile on her face. I thought, “Did we really understand what we were committing to at the time? My gosh I am so lucky. If the situation is ever reversed, I hope and pray I can be such a loving, comforting caregiver as she has been throughout this entire ordeal.”
MarketWatch dubbed me a “Retirementor”. I take that responsibility seriously; sharing experiences with others in hopes we can all learn from this phase of life’s journey.
When I discovered I had cancer, dear friend Chuck Butler, who has dealt with cancer for over a decade, was a true mentor.
I called Chuck after the follow-up PET scan and told him the cancer was gone. He surprised me. I can now call myself a cancer survivor and have an obligation to help mentor and encourage others. OK Chuck, here is my first attempt at doing so.
Meanwhile back in the kitchen
Jo put the syringe and the liquid on the table. Before feeding, she asked, “How is the area around the tube looking?” It was beet red. I pull back the plastic tab as she sprays the peroxide.
She mixes the pills with the milkshake and pumps the liquid through the tube. She has this down to a science.
With instructions to “stay put”. She put everything in the sink and grabbed a tube of heavy goo to put on my neck. As she is applying the goo, she looks at me, smiles and says, “Your eyebrows need trimming!”
In a tone of voice, I wish I had back – I responded, “I’m not interested in winning the award for the neatest eyebrows in the chemo room.” The smile disappears; her look is stern, “They look awful; trim them!”
The next morning was the start of a big day. Not only do I go in for radiation, but I also get the chemo pump taken off for a couple of weeks. I drag out of the chair, clean up as best I can, knowing I can shower once I get that damn pump removed.
I have a cotton shirt that works best with the goo on my neck. It is much more comfortable. Jo hung it in the closet with strict instructions not to wear it until it is ironed. It’s full of wrinkles. I shook it out a couple of times and put it on. I walked into the kitchen, she raised her voice, “I TOLD YOU not to wear that shirt until I ironed it!” I responded in kind, “I don’t give a damn if it is wrinkled, it doesn’t hurt my neck!”
The shirt immediately came off, Jo grabbed the iron with tears streaming down her cheeks. When things calmed down, I realized she was crying for two reasons. She was angry and felt guilty because she was so tired, she had forgotten to iron it; feeling she wasn’t doing her job.
That flare-up caused me to totally rethink things and hopefully changed our life and marriage forever.
Don’t allow fatigue to turn your marriage into the Bickerson’s.
Fatigue makes cowards of us all. I was thinking about myself, barely able to function. I realized Jo was just as tired as I was, yet she not only looked after me, she also did all the driving, shopping, cooking, cleaning, washing, ironing, you name it – while I tried to sleep.
In the discussion that followed, I asked her why she had been closing the door to her office lately. Her response – “Because I don’t want you to see me crying!”
We have all seen examples of the Bickerson’s. Recently a couple, who we love dearly, had a seemingly trivial issue come up; a forgotten appointment. It quickly started, “I told you to write it down two weeks ago!” “No, you didn’t!” Both faces were red and veins popping out in their neck as they bickered about who’s fault it was that an appointment was forgotten. No one wins…
I’m proud to say that so far, trivial things that used to set me off are now being put in proper perspective. When I need to make room for something in the refrigerator and rearrange things (tall things on tall shelves, short things on short shelves), I just smile to myself. There are probably hundreds of small things, like cleaning the electric toothbrush when I forget, that Jo never mentions.
The bottom line is simple. Getting frustrated with each other over trivial matters does not help either the one being cared for, or the caregiver. Just don’t let it happen.
Who cares for the caregiver?
We have a regular group of friends who gather most every Friday night for dinner. As I couldn’t eat, and my constant coughing/gagging was gross, I didn’t want to go to a restaurant.
I encouraged Jo to go with our friends for dinner, get out of the house. Go get your hair done, go shopping and get your mind off of things.
I’m now able to drink a milkshake. She recently confessed, “I’m at the point I can leave the house for more than two hours without feeling guilty and worrying about you eating something.” I’m happy to report, she and her girlfriends went to a craft show last weekend and were gone most of the day. Go- enjoy! I can feed myself.
This applies to the entire family. If children are nearby, they need to pinch-hit from time to time – the caregiver needs a break too.
The captain must always know the condition of the ship.
My oldest son, a Naval Academy graduate, has preached this many times.
We had numerous discussions with doctors about the treatment and expectations that would follow. Be warned, they all start with, “every patient is different.”
One doctor told me I would be eating normally in a matter of weeks. Whether it was swallowing, time for the salivary glands to come back or when the constant fatigue would go away, the expectations they expressed were overly optimistic. I am doing well, ahead of the norm, yet the unrealistic expectations became a problem.
Another doctor told me, “You are amazing!” I asked why and was told, “Half the people your age don’t make it through the treatment.” I was flabbergasted. Why didn’t they tell me when we were discussing treatment options?
I confronted one doctor and was told, “Dennis if we told many of our cancer patients the truth, they would walk out the door and never come back!” I will yield to the doctor’s experience but the lesson to me is clear.
While you might not like what you hear, how can you make tough life decisions without all the facts?
Pay attention to your body.
In the middle of the night, when you are unable to breathe through your bone-dry nose, it’s hard to drag yourself into the bathroom to flush your nasal passages with saline solution. Ignore the message and expect a nosebleed.
When your body says its nap time, take a nap or you will pay for it later, just that simple.
When we are working, we have a tendency to ignore things. Don’t do it when you are being treated and recovering; it could slow down the process.
Doing the job
Hopefully our readers are never faced with these kinds of situations. Tough diagnosis, treatment, and recovery is stressful and challenging for all concerned. By sharing our life lessons, I’m hoping to make the process easier for others. Chuck would say, “I’m just doing my job.”
Take those marriage vows seriously. Work together, minimize stress and you may find your life, and quality of life is positively affected.The #1 Secret You MUST Know Before Filing For Social Security...
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