Surprise! Nothing to See Here Today
INTERESTING STUFF – 31 August 2019

What Cancer Patients Don't Tell You – Part 1

I don't mean JUST cancer patients. I am also including people in general who live with a deadly disease and some elders who may not have a scary diagnosis but whose bodies are letting them down in old age.

And oh, how bodies can do that.

These thoughts came to mind Monday when a couple of reader comments about Supreme Court Justice Ruth Bader Ginsburg's cancer caught my attention. From Darlene Costner:

”Logically she must have suffered terribly during her struggle with cancer (not to mention broken bones). In spite of it, she just keeps going on like the energizer bunny.”

Reader Carol Leskin (who contributes to the Tuesday Reader Story feature of this blog), left this note on Facebook:

”I have often wondered what it is that keeps you moving forward. On days when I struggle and just want to give up, I think of you. It helps me and I say, 'what the hell' to myself and get on with the day as best I can. I am glad you look to RGB for inspiration...”

I know exactly what Carol Leskin is talking about. But even though I resolved early on to write as clearly and honestly as possible about my cancer predicament and, now, COPD, I've shied away from the day-to-day difficulties which in shorthand are this: it's hard. It's really hard sometimes.

Mostly, old people don't talk about these things – the difficulty of just getting through a day. Part of that is succumbing to long-term, societal prohibitions against old folks' “organ recitals.” We're not supposed to mention our health troubles because younger people don't want to know.

Another part for me is to avoid sounding whiny but both of those reasons are stupid. It's what is happening to us and if it comes as a surprise, it's because nobody talks about it.

So let me take a stab at what an average day has become. It can apply – often unexpectedly and with differing particulars - to pretty much anyone in the age group we are concerned with here.

That said, let me tell you about my mornings.

When I wake at about 5:30AM each day, I feel terrific. The bed is warm and cozy and my comfort level is near 100 percent, not a twinge of pain and I cannot imagine that I hurt anywhere.

Then I try to throw back the covers and realize that no, the body and muscle pains have not gone away since yesterday. How is it that an arm, a hand and fingers can hurt that much, I ask myself.

I wince as I turn on the light, fingers screaming to me, “don't do that”. I do it anyway and then I try to stand. Depending on how much my left or right (never both at once) ankle hurts, I slowly crab walk to the bathroom for morning ablutions (isn't that a fine word?).

Or, on a good day, I can walk almost normally.

I do a mental check of what else hurts. For the past month it has been some combination of fingers, ankles, an elbow and/or knee and back of my neck. Have you tried brushing your teeth when you can't close your hand around the toothbrush handle? Hint: Holding your hands under hot water helps loosen them up.

In the kitchen while the coffee is brewing, I grab some ibuprofen for the pains and sit down to wrangle the newest inhaler into submission.

I've been using the new one only since Tuesday but it seems to be improving my breathing.

Sometimes I think the coffee might be what does the most good but either way, it will be two hours before the pain killer fully kicks in. I use that time to meditate, read the news online with TV news droning in the background, answer overnight email, plan the day or the next blog post or whatever else is on my mind that doesn't involve physical exertion. Like walking. Or showering. Or dressing.

It is astonishing how precise the timing is. Within 15 minutes one side or the other of two hours, I am close to pain-free. So – breakfast, shower and dress which seem to take forever compared to pre-cancer life.

And then, about 9AM my day begins. Before cancer and COPD, I could shower, dress, have breakfast and be out the door by 6:30AM.

Here's a little secret: if I don't need to shop or see a doctor or meet a friend or some other outside activity, I've been known to skip showering and sometimes I stay in my jammies all day because it's not unheard of around here to lose my breath just dressing or undressing.

Part 2 is here



Comments

I don't have a life threatening disease but in so many ways my mornings are exactly like yours. The hardest part is waking up all comfy and cozy as you describe, and then putting my feet over the bed and feeling the first stabs of pain! The immobility! I hobble to the bathroom, look in the mirror and am stunned at the image...an exhausted old woman...and the day has just begun. And yet, even though this has been going on for over a year and my illnesses worsening, I am surprised and bitterly disappointed. For those first lovely few pain free minutes I forget about what is in store - what my day will be like as I struggle to get on with it. How bizarre it is that this scenario repeats daily! The few moments of happy delusion that I am well and strong followed by the harsh reality of what is. I wonder if it ever goes away? That beautiful expectation. The longing for it is still so painful!

Walking-- who knew---

Yesterday, as I was walking along with pain trying to remain up right and concentrate on moving my legs and feet forward smoothly as they should, I looked around.

All the young people gliding along, never giving a thought to each step. They have no idea how things will change. I know I never did.

I envied them, until I looked around and noticed many older people bent over and walking with the help of a cane.

I feel thankful for still being able to function as well as I can, for now..
Looking forward is a bit scary to contemplate.

This is where I live at times right now...aging is certainly livable but scary...scary, things changing at many different levels. These past three years since my pancreatic diagnosis and becoming 71 I've come to believe ....it takes a lot of effort to live even when things are good.

Ronni thank you for sharing what honestly life can be like....even when we remain to be positive .......may you feel the rewards from what your blogs accomplish and bring to others.

Hope your day you can find some relief....I appreciate your efforts.

If I'm right about this, thanks for the chance to let me air my unhappy feelings with close to 50 years of daily dealings with adhesions. If I dared air my distress with anyone, it really would not go well in polite company . I must spend much, or most of each day in the powder room. With that being a daily pattern and a necessity, I stay home yearning for the socialization I read is so important for we seniors. Depression has always been a big part of my life and these years it especially adds to my physical failings. Venting here helps me feel not so alone.

I think my husband at age 75 is someone without the scary diagnosis whose body is letting him down in old age. He has always been a Type A doer. Over the past year, he has been diagnosed with lumbar spinal stenosis and vascular narrowing in his legs (peripheral vascular disease), although perhaps something else is going on....

While he can still walk short distances on most days, he can only stand for a brief period and has pretty much lost leg strength. The only time he is comfortable is in bed. He has spent 15 to 16 hours flat on his back doing nothing every day for the past year. He is still himself and lucid but in pain all the time and not too happy.

He doesn't want to "complain" or "whine" so, being 7 years younger, I must divine what's really going on. Our life has taken such a strange turn. Thank you Ronni and the rest of you kind people for the insights.

I'm glad you were so honest, Ronni. I don't suffer from a terminal illness (as far as I know), but I am arthritic - and it hurts. I recently did something to my knee while stopping myself falling, and that hurts a lot. As I was crabbing down the 2 stairs to my garage, I felt like I was about 90, especially now that I am using a cane because of my knee. I get some kind of vertigo now so I have to be careful how I bend my head etc. etc. etc.

I've really slowed down. I even accepted the grocery bagger's offer to take the groceries out to the car for me yesterday. All this is so irritating and tiring!

A friend of mine from Glasgow says in Scotland they say "Old age doesn't come by itself". That's for sure.

Thank you for your honesty.

I appreciate your honesty. We will all likely go through this before we do final exit. And you are right; people who have not gone through this have no idea.

May you have a good day today.

Yes, thank you for telling it like it is. I'm lucky not to have cancer (that I know of) or another terminal illness--except, of course, old age itself! I anticipated having some aches and pains as I aged, but nothing can prepare you for being in real pain, every day and sometimes all night as well.

My medical issues may not be non-life threatening at this point, but they most certainly are life-LIMITING. Pain saps one's energy (a lot) and effectively hits the delete key on most of the joy in life. Just accomplishing what must be done every day can be difficult--and I'm relatively "healthy". I used to be a high-energy person.

Unfortunately for me and millions of others, serious chronic pain is no longer considered a problem by the medical community, which has been consumed by the "opioid crisis". Older adults who use prescribed pain medication responsibly had nothing to do with creating the opioid crisis, but we are collateral damage, for sure. We are often erroneously dumped in with, and misclassified as, drug addicts. We are often reluctant to seek medical or dental care when new health issues arise because we simply cannot tolerate additional pain; we know there will be no help and that we will be treated with disdain and condescension if we ask for it. Welcome to the "Golden Years"!

I am unable to take NSAIDs (they destroy my digestive system) and plain Tylenol is totally ineffective. I've tried MANY other medications and approaches. I am currently allowed a low dose of a mild opiate, and in today's world I must be grateful for that. It is what it is. . .

One reason I was so unprepared for all this ... my parents were the only "old" people in my life, and I never heard them complain about anything. Both lived into their 80s. I used to wonder why Mom always sat in the wood upright chair when the comfy sofa was just a few feet away. I think of her now every time I struggle to get up off the couch. "Nose over toes" is hard to do when you can't get your feet under you (but it's some of the most helpful advice I've gotten).

A very helpful post for me. I also get those wandering pain attacks out of sky blue-the elbow one, I find quite strange. What would we do without our ibuprofen? It helps me so very much.

Thank you for this post. I do my best to allow my 88-year old father to speak openly about his pains and struggles. And then earlier this year I tore my Achilles and was nearly immobile for months. It changed my being. I am finally walking again, although only at maybe 75% of capacity, and finally feeling spontaneous happiness on occasions, something I hardly realized I'd been missing.

Not being able to share makes almost any distress harder to bear - society needs to embrace old age, it's life as much as is juicy youth and full-bore middle age.

Yes it is hard. And gets harder. I have severe COPD that will kill me in the near future, and it effects my every waking breath. But there is one other thing I hadn't counted on: My heart has grown. I don't mean physically. I mean my heart has grown to embrace things I never even noticed before! A stranger's helping hand finding the artichokes in the grocery store will bring a lump to my throat. The ugly black flying bug (I live in Texas) that thinks it is a butterfly as it flits from flower to flower gives me a laugh. I feel a strong kinship to all the old people just trying to make it through the day, everyday. I marvel at my aging cat, Roxanne, who still purrs on my lap.

The world, outside of my physical limitations, has become so FULL. When I see cruelty and greed, I'm starting to say to myself "this too" instead of denying it or wishing it away. When I read this blog and all the comments I just want to shout "WE'VE GOT THIS" because we can speak the truth, no matter how sick or how old.

Ronni, I expect I deserve more than a slap on the hand as I fear I may be going off topic here but life is short and here I go. I have been hearing more and more lately about the mind-body connection (all it entails) and it compliments what I am learning about handling my chronic back pain . I weaned myself off opioids at a certain point (it was not easy) and now I am dealing with my pain under new circumstances and with a new outlook.

Well darn. I wrote a long comment and when I tried to post it I got a little box that said: "www.TimeGoesBy
We're sorry but your time has expired. We are unable to post your comment. Try again later."

So you will just have to miss the thrilling comment of my fall (one of more than I can count) the night before last.

I will just sum it up by saying that it doesn't get better.

Thank you so much for your honesty and your optimism which is so motivating. I have recently been diagnosed with chronic migraines and rarely go for 2 consecutive days without one striking. Every time I read one of your posts it stops me feeling sorry for myself.

Coincidence. Earlier this week I wrote an essay to people I love called "Kvetching." Just got tired of bucking up, being cheerful in spite of it all. So I had a terrible-twos tantrum and let it all hang out. Then yesterday I got an essay from Aeon called Against Cheerfulness. Love all this. Thank you.

Thanks, once again, for your honesty, Ronni. I am sorry it's that rough for you. Even though my situation is no where near as difficult, I've realized I keep mostly mum about the difficulties I face for fear of being seen as a complainer, an OLD complainer. When really, it's just part of the truth.
Blessings to us all.

What a winner of an entry. Yes, I am fine in the mornings until I sit up. Once I am up, I just sit there. Feet...no one told me about feet, or hands. My lower back is long gone. I walk in short spurts now. I'm able to laugh. LOL

Ronni, your words motivate me to be better, do better.


XOXO

Long ago I knew a dear woman who became my 'best' friend. She was like a mother to me... only better... because I could talk to her on a 'one-to-one' basis, as I was never able to do with my own mother, and she understood.

In the small house she called "Just a mere cottage". she had these letters on her fireplace:

LIDGTGTFTATIM

Of course I tried to pronounce it, and couldn't. So, I asked what it meant. She replied,

"LORD, I DO GIVE THE GRATEFUL THANKS FOR THE ABUNDANCE THAT IS MINE".

It became my mantra. I created a needlepoint piece for her wall, and she took it from place to place, finally in her room at a memory care location. After her death, her daughter returned it to me, for my bedroom wall where I see it every morning.

It reminds me to concentrate on "What's good about it" in every situation, because I can, nearly always, find something good. Even when I am in pain, or feeling low for whatever reason, I can find something.... and that is what makes life and living easier for me.

It is so uplifting to read all these comments as well as your blog. We are all in this together. It sure helps to hear others experiencing the same things I am. Thank you 😊

A friend has proposed a T-shirt that says "I'm Fine" on the front and says "Everybody Lies" on the back.

I have just found your blog via Amid Privilege. This was riveting; thank you so much for your clarity and truth. My own mother, who also has COPD, lives in a very similar way. I have not been sympathetic, or empathetic enough, it seems to me. Now I can imagine what she will not tell me. When next we meet, I will recall this before I open my big, fat mouth.

I feel very lucky as I read these comments. I am 85 1/2 and also have COPD but aside from periodic exacerbations [horrible - throat filled with mucus that wants to stay there and I usually get pneumonia which leaves me very tired for several weeks] I have no serious pain. I doubt I would have the courage to keep living if I had serious daily pain. I take no medication whatsoever but usually walk at least 2 miles + per day. The front door to front window of my apartment is 50 steps! Believe it or not my COPD is getting better rather than worse. Walk as much as you can as often as you can. My sympathies.

I would love to speak here, but ,the information needed below is something I don't really understand. So I will continue here. My husband died 3years ago of cancer,I was with him for 40 days and nights at the hospital. I then was diagnosed with stage 3 cancer. Almost bled to death before the diagnosis. Did all the chemo, radiation stuff, I am with out cancer at this time. But my body went through so much that 2 years later, I suffer with pain more now than before and during treatment. But being alone, I must in a minute by minute demand , to keep my head up. I tell myself every day , out loud,, it's just you, your life is still available , and someone may still need my help to get through!!! Thank you for letting me write!!

I haven't been to this site in quite awhile. I knew about your cancer but not the COPD. I was diagnosed with the latter almost 20 years ago. I finally quit smoking and that helped. I've been lucky, it only flares up when smoke from fires are in the air, or in cold weather. Knock wood. I expect it'll kill me someday. (I'm 73).

What I really want to say is this: I love the way you're writing about the daily difficulties of cancer, poor breathing, pain, and aging. So direct, without self-pity and, even more important to me, without phony cheer and/or "the compensations" of getting old. We need this, all of us. Please please keep it up. I'm gonna try to come here and read more often now.

Feel as well as you can.

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