Father Time and Me
About the Next Generation and the Next and the Next and

What Cancer Patients Don't Tell You - Part 2

Part 1 is here

One of the hardest parts of life since I was diagnosed with pancreatic cancer two-and-a-quarter years ago and now, COPD, is just how long it takes to do ordinary things that were so easy as to go almost unnoticed during the decades of my pre-cancer life.

Add to that the new medical chores – buying, counting out, tracking prescription drugs and refills; doctor appointments and travel time; forms to fill out prior to every appointment; tests; and so on.

Now I have a new responsibility: I've been prescribed oxygen and last week the technician came to drop off the paraphernalia and teach me how to use it.

If, like me, you have been extraordinarily healthy throughout your life, even being tethered to an oxygen concentrator feels like a burden – except that I need it. I'm still training myself to always watch so I don't trip over the tubing in the two places where I can't hide it out of the way.

It is not clear to me yet how useful the small, portable tanks are. They weigh so much that I can't imagine walking more than a few feet with one hanging from my shoulder but I suppose I'll need to figure that out, (she sighed).

As I explained in Part 1 of this two-part series, everything is hard for the first two hours of my day while I wait for body and joint pains to dissipate. I usually can manage making breakfast and, most of the time, washing up the dishes afterwards although the latter depends on how much my hands and arms hurt.

Also, I can get a lot of news reading, email and research/writing work done for the blog as long as I remember to stand up and walk around for a couple of minutes now and then to keep my knees from getting stiff.

I've switched my main meal of the day to lunch when I still have the energy to prepare something more elaborate than I do in the evening. Sometimes in midday, I cook a couple of meals ahead for future dinners.

Timing is more important in my life now. I choose the time when my breathing seems best to take out trash or pick up the mail. This is mostly during the late morning or early afternoon. Maybe when I figure out the mobile oxygen tanks I'll be more flexible. But I will be hiring a cleaning service within the next week or so – the vacuum cleaner is just one new difficulty for me nowadays.

I also need to get grocery shopping done in the same period of time. I had no idea before now that pushing a supermarket basket – even the small size – could leave anyone short of breath.

For most of my adult life, certainly many years before cancer and COPD, I ran out of mental steam by mid-afternoon. In fact, in a planning meeting back then, my boss once said to my colleagues, “If you need Ronni's help on any of this be sure to ask her before 2:30PM or 3PM; she's useless after then.”

She wasn't wrong and now it's physical fatigue too. I'm pretty much done for the day by 3PM, and after three or four more hours of low-impact, low intellectual puttering and then dinner, I'm in bed with a book or a movie. Even when I sometimes take a nap for an hour, my day is over by 7PM and an hour earlier is not unheard of.

If you've been counting on your fingers while reading the above, you've probably figured out that after accounting for pain, medical chores and the normal, daily tasks of life, I don't have a lot of free time left over.

Nobody tells you that if you get a serious disease in old age, you will be busier than you've ever been – or, at least, it will feel that way because you are so much slower.

Until about a year ago, a friend sometimes asked me to slow down when we were going somewhere together – I hadn't shed my New York City speed-walk. Nowadays I need to ask her to slow down, and I have even greater sympathy for the old woman in this video than when I first encountered her on the web about 10 years ago.



Comments

Oh my, Ronni, I assumed you were already having help with household cleaning. Think it's past time you had a house cleaner. Also, may be time to use those mobile scooters at the store and a shopping buddy perhaps. For all your giving to this blog, I bet there are readers who'd gladly help fund a kitty if needed. We value your time! I realize you're a giver and not a taker, but sometimes it's nice to let others feel like they are helping in some small way.

I know that's not why you shared this with us, but...think about it.

This post, more than any others I've read here, was a bittersweet reminder of my dad's five years living with the help of Hospice and my brother and I alternating our time to keep him at home.

He was on oxygen the last two years and he would often gather up the tube like a lasso and joke about being a cowboy. One time we were going some place and I accidentally sat on one of his spare portable tanks as I crawled in the back seat of our vehicle. I wouldn't recommend doing that! I hit the value just right and the noise scared the heck out of us all.

Thank you for keeping your blog real as you document your journey.

ok, first I URGE you to call Meals on Wheels. When I broke my hip in Palm Desert, I used them for several months. Very helpful!!! Plus, I suspect the meals here actually are tastier (I've visited their kitchen).

And, if you absolutely need to go to the grocery store (such as Fred Meyers) put the phone number in your cell phone. Add the number for customer service. Then park in the handicapped section, call them to bring you an elec. scooter, and wait for it to arrive. Just tell them you can't walk. They are very helpful... carry your bags back to the car when you are done, and so many non-grocery items are also available there too. Good luck, and keep looking up. (Although I'm older than you (I am 90) I am healthier... yet problems walking, etc.

Keep the faith!

Ditto, ditto, ditto. I am a dittohead today

I've still got a mother, miraculously—she's going on 96, and remarkably healthy, but she's also gently declining (she's entitled), and very much slowed down, and she would relate to these posts. She has macular degeneration (which they can now slow way down, but which makes it a struggle to keep reading and writing as she insists on doing) and her short-term memory is unraveling (which adds to the struggle to keep on writing the family memoir she has almost finished). She uses a walker, which she might or might not need had she not had polio when she was 30. (It affected her right lower leg, yet she worked hard in rehab and PT and walked without any aid, just with a limp, till less than a decade ago.) She has had knee replacement, her bladder hiked up, a small and indolent breast cancer (over 20 years ago—radiation was enough), falls (very rare now as she's very careful). Yet her main complaint is how long it takes her to get up, shower, and get dressed in the morning. And she is one of the lucky ones.

Nearly all my traveling has become back-and-forth to see her in Chicago. (I'm editing her memoir.) I so wanted to see you, Ronni, in the spring while it would still not be a burden. Mom and an elderly, high-maintenance cat have clipped my wings. I still have a trip to the NW on my near-term bucket list (is there a word for that? sand pail list?) and if and when I can make it, I hope to have coffee with you at your convenience.

Go on line to find a grocery store that delivers. The apps are fairly easy to use. I use the Walmart app to buy all of my staples. I make an actual in-store visit to another grocery to get my organic meats and some of my veggies. But that is just my preference. Most of those items are available through the app.

I love the convenience and the time saving aspect of this service. Once you try it you’ll wonder why you ever ever went into a grocery! Plus it cuts cuts down on impulse shopping! 🙂

My supermarket now delivers, and I'm sure at some point I will avail myself of that service. (Given Caroline's observation about impulse shopping, I should start doing that right away!) Or they'll put your order together for you and you can drive by and pick it up. I think I've seen Walmart advertising the same service. And services like GrubHub, UberEats, and DoorDash could provide the occasional good hot meal.

As for the oxygen tank, I'd suggest around your waist if possible, instead of on one shoulder. You can carry weight more easily on your hips (ask any hiker) and it will leave your upper body free of incumbrance while you shop or whatever. Plus, it's your ticket to a handicap parking space. Around here you get a hang tag from your doctor or even a permanent license plate that authorizes you to use those spaces.

As someone who was in a wheelchair for a years and now uses a cane to get around, I am familiar with life in the slow lane. Over the past two years I've learned how to conserve steps by combining chores, appointments and even doctor's visits. Sometimes I wish I didn't give up my car.

Get rid of the Tanks. There is a much better and lighter way of dealing with oxygen. I have an oxygen concentrator at home, which makes quite a noise which you don't hear after a while, and a portable oxygen unit called Inogen One. Both are covered by insurance (I have Kaiser and Medicare). Also, I told "them" to take away the huge monster oxygen tank they insisted I should have in case the power went out. It's like having a bloody great bomb sitting in your living room.
My machines come from Apria. The machines cost me approximately $30 a month. With a different insurance, the machines may differ but they are available.

I have a hang tag for parking in handicap space, and I'm trying to figure out how to get a disabled parking spot in front of my house but can't find the right department. If anyone knows, please let me know.

Thank you again Ronni for your writing and sharing. You are a WONDERFUL woman.
o/

Nothing new to add Ronnie. Just wanted to through my mental support and prayers your way. Being the very smart lady you are I'm sure you've already expl;oring grocery stores that allow you to order on line and also cleaning services. My wife is 75, has severe arthritis and has FINALLY allowed us to hire a cleaning service (Yay)
I would also like to suggest, if you haven't done so already to call back the co. your getting your oxygen service and explain to them your not comfortable carting it around and need some further guidance on how to take it with you when you are mobile and DON"T let them send out whoever they did in the first place! You might want to check with a friend who has one or check and visit a retirement home where people are using them. I'm sure EVERYONE would have a good time!
Thanks for caring our torch and lighting the way Ronnie,
Jim Elliott

Well, you got a lot of pretty good sounding advice! Though I know nothing of oxygen tanks in the present. Glad you're getting a house cleaner, it sounds as though you've got more than enough choring as it is. All that food delivery sounds great too, if you're close enough to town for it.

Many blessings for you, for each day.

Wow, what great advice here...I thought of the food delivery, and good to know about other options for Oxygen.

But mostly, I want to share that I feel your dignity throughout this, that how you have adjusted to this new reality is something that inspires me daily, and how appreciative I am for your staying connected to us.

Why not give Store to Door a try? They only charge 10% of your grocery total to deliver to your house. They are also happy to put the groceries up for you.
They can call you for your order or you can simply send them an email.
That way you don't have the inflated pricing that comes with a regular delivery service.
I use them occasionally when times are hard and when I feel good I go to the store myself of course.
I highly recommend them.
Easy google search.

I wrote a fairly long e-mail but it disappeared when I was filling in the name,etc.
but the essence of it is get some help (neighbors and friends would be a good start.) It would be a blessing to them. That's what I used to tell my patients!
I do admire you so much. Thanks for staying in touch!

I live in a retirement community of 250 people. At least 5 of them come down to the dining room or go shopping. They all use a rollator and keep their tanks on them.

If you've been healthy and independent all your life, it is really hard to go from being the helper to the helpee. EGO!!!

That all sounds so exhausting. I am a widow, no kids, and think assisted living is in my future. Been taking care of everything for 13 years, and kinda tired of it all at 68. Any thoughts about assisted living vs. remaining in your home regarding declining health?

Your blog is so informative. Hang in there!

I urge you to check out instacart for grocery delivery. It has saved me a lot of time and energy! At the very least, get most groceries delivered.

I had a friend who used a portable oxygen machine. It was a lot easier for her and weighed less than the tanks.

Bless you, Ronnie.

For Cara re. assisted living: Assisted living is great as long as you don’t need much assistance. You must be mobile, able to take care of your personal needs and meds, etc. Quite a bit has been written about this industry lately, much of it cautionary.

Oh, Ronni, you are so brave!

I'm pretty brave myself, but I like to complain about my trials and tribulations, which are as NOTHING compared to your situation.

I echo everyone's recommendations.

You can also get someone to come to your house to help you with tedious medical paperwork and other energy-sapping baloney. I don't know if you have long-term care insurance, but now would be the time to look into beginning to use it for making your life a bit easier now. You certainly don't need someone around 24/7, but even a few hours a week might ease your load.

Morituri te salutamus!

I sympathize and have a great affinity. Until 10, a green O2 tank was a good friend. It was also
a form of isolation. Then, for about 60 years I've done without it. Each of the steps you mention seem to come with age. And with each we give up just one more bit of independence.
Like you, I had no time for the elderly when I was young. Different now. I'm one of them.
Oh yes, we too are done by four but we do make it to 830pm for bed. Quite a challenge!
We are up anywhere from 0530-0830, depends on the night before and physical problems.
Take care, B

Excellent suggestions, Ronni.

My senior friend M orders her dairy products from a farmer who delivers fresh everything including humorous stories about what animals her husband keeps bringing home. Mini horses, runaway cats, dogs, mini pigs. All taken care of on the farm.

Big Montreal hugs.

It's nice when you see such a great work! Continue writing

Would a grocery delivery service help? Since I do not drive anymore, I order from my local grocery store. It does take time to set up your order on the app, but after your first list, you can reorder from the list each time.This service has changed my life for the better. A little more expensive, but worth the convenience.

Instacart and Shipt as well as local grocery delivery services.

I'm late posting here, but if Odette is still reading these, where I live it's the traffic department of the city that we have to go through for the for the disabled parking markers on the street. Two of my neighbors have these and they got them fairly easily and quickly. I think it's especially easy when you already have a placard for parking in handicapped accessible areas.

I hope someone in power is reading this blog. We collectively as a society have only a cartoon in our minds, for the most part, about this stage of life. I hear so many people saying they want to stay "where they are" until they die, or they imagine death as a phase state change, rather than a long slow process that has for most of us already begun. Even when we are young.

To put together a life in the face of shortness of breath, of pain, of the resultant lack of mobility, isn't easy, and yet few want to do otherwise. I admire your honesty more than I can say. I have to believe it's making a difference, whether directly on policy people or indirectly through the lives of all of us reading. Thank you.

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