Myths About Our Ageing Brains
Some Advantages of Being Old

Crabby Old Lady Writes About Her Cancer

Handwriting

You've read it here more than once – that Crabby Old Lady never wanted to become a professional patient, and in the time following her diagnosis of pancreatic cancer in June, she has fought against it mightily.

Well, phooey. It has been a futile effort from the get-go that Crabby should have known better than to try. This isn't a broken bone that will heal in a few weeks or a new knee.

So today we have another chapter in Crabby Old Lady's attempts to adjust to her new situation in life. Some in the news business would call it a thumbsucker but Crabby, as always, is helpless against E.M. Forster's dictum, “how do I know what I think until I see what I say”.

Don't take any of this too seriously yet. Some (many? a lot?) of these thoughts, complaints and feelings are new to Crabby and therefore, by definition, half-baked. No doubt there will be revisions.

In the three months since those terrifying words, pancreatic cancer, were said out loud, Crabby is only gradually realizing how much her life will be permanently different. It is much more than she expected or wanted.

Crabby will spare you the lists and just say the nuts and bolts of living with this disease and the results of the surgery average out to a couple of hours a day, every day – hours for which she had other plans. Certainly she has seen more doctors more frequently than all such previous encounters combined.

Six months of weekly chemotherapy begin a week from today and for the past 10 days or so Crabby been buried in reading matter about all the awful things it might do to her, how she can help prevent some of them and which of those side effects are medical emergencies to be addressed immediately.

Elsewhere, Crabby's life is now controlled by lists of what she can and can't eat, keeping medications straight, phone numbers she might need and more.

This stuff is exactly what she never wanted in life. But here's the thing: for all these years of studying ageing, being as healthy as she was until now, Crabby never really “got” what most old people live with. According to Kaiser Health News,

”The majority of adults 65 and over have multiple chronic conditions that contribute to frailty and disability, according to a 2013-14 report from the Centers for Disease Control and Prevention [pdf].

“The percentage of chronic conditions among people 65 and over has increased over time, too. The percentage of people reporting hypertension, asthma, cancer and diabetes was higher in 2013-14 than in 1997-98, reports the CDC...

“About 57 percent of women and 55 percent of men age 65 and up reported hypertension. Another 54 percent of women and 43 percent of men reported arthritis.”

Obviously, Crabby Old Lady was lucky for the first 76 years of her life and she never fully appreciated how much time chronic diseases and conditions steal from elders' lives nor the personal effort required day in and day out to maintain as much health and well-being as possible.

Having spent a great deal of time thinking over all this, Crabby has come up with a few new words to live by:

Get over being a professional patient. It is what you are now. Live with it.

Accept the changes the disease is placing on daily life. They are your new normal.

Focus on what is possible now, not how life was before.

Crabby suspects that many of you, dear readers, have already been there, done this and Crabby Old Lady is just now catching up with you.

Comments

But try to find a tiny bit of joy every day... if it is only listening to your kitty purr.

Your bouyant spirit speaks so clearly and engagingly through this post. You are so on target about living with a chronic disease. It is a surprise for many of us. Your perspective is such a gift. Many blessings to you on your journey. Joan Chadbourne -- Rosie's friend from Maine and Delaware.

And the good news is that your brain has not aged abit.

As someone who has lived with an "appliance" that needs attention to two or three times a day, I know what kind of a pain all of this medical stuff can be. But once you resolve yourself to the fact that : (A) Things could be worse, and (B) The alternative is not an alternative at all, than coping with everything becomes more of an assignment instead of a chore.

They cured my friend's Lymphoma, but now she has brain cancer.

I love the way you put this life. Without a hint of a whine, you say what's difficult for you and describe how it feels. You use humor, mostly about you, to lighten it up at the right moment. Your insights are practical without being 'how to'. You aren't pedantic - you're not teaching, you're sharing. And I always learn from reading this. For 38 years, I've lived with difficult health, including an appliance & implants & lots of body parts that go wrong. I'm going to share this with my readers & community because you nailed it! Get over, Accept, Focus.

Yes, I'm sure you're right that many of your readers have had the experience of being a "professional patient," having lived with an extended illness or disability. Still, everyone is different and there is no one-size fits all approach to chronic illness, although there are lessons that everyone can learn and benefit from when they are shared as you've been doing here. While I, personally, have not yet moved into the camp of professional patient, I have spent most of my adult life, living, serving and working with other adults who have lived there for much of their lives.

Professionally, I worked for many years with adults with serious and persistent mental illness. These were not the "worried well," but adults of all ages who had spent much of their lives in institutions of one sort or another, but who had been able to move into community housing programs, with ongoing supervision and support. One person I helped on a weekly basis for a few years, mostly with getting groceries, managing medication, making sure she had decent clothes, was generally safe, etc., was a woman in her mid-forties, with moderate autism, along with anxiety and OCD. With support, she was able to live in her own apartment and hold a job in a sheltered workshop. This woman was a marvel to me. She had a work ethic that would put most of us to shame, getting up very early to get herself dressed, fed and to the bus stop and work, regardless of what the weather conditions, or how she felt. She was a bit of a savant and could tell you what day of the week any given date was on, and much of what, during her adult lifetime, had happened on that date. She also reminded me, repeatedly, that, "God is no respecter of person, and neither is mental illness." I learned a lot from her, not the least of which is that nothing is any respecter of person. What happens to someone can happen to anyone, and usually does, over and over again.

Over the years, I have felt very down, at times, about how my husband's chronic illness has impacted our lives. At 31, his pancreas gave out on him too, or at least the part that had previously produced insulin. Over a remarkably short period of time, he developed all the classic symptoms of Type 1 diabetes -- severe and sudden weight loss and thirst, frequent urination, decline in eyesight, and others. He was hospitalized for a week, diagnosed and the journey of being an insulin-dependent diabetic began. We had no idea where this came from. We could find no family history of anyone with diagnosed diabetes, although there was a great-grandmother with one leg with whom my husband's father and high school chums used to play poker. No one ever seemed to know what had happened to that other leg, but we have our suspicions.

My husband was very fortunate to have been born into an era where insulin could be replaced, and not only with that from a pig, but from refined, better accepted, human insulin, now with forms both rapid and long acting, which can be better adapted to individual needs Also, much finer syringes have been engineered to deliver the insulin much less painfully. Still, his life changed immediately and drastically and has remained so for longer now than the number of years he had lived prior to that change. Several hours every day are devoted to meal and medication management, and over the past couple of years his ability to get out and be active has declined sharply, and he requires a nap most afternoons, especially if he's gone out at all earlier in the day. My husband has been a marvel to me, also. Mostly he doesn't complain, and he attends to his regimen very strictly, for which I am thankful. I am also very thankful that he has been able to give himself his multiple daily injections thus far. I have been trained to do this, but I have a terrible time with needles and have welcomed the deferment I've had so far from this duty.

I think being alone would have made my husband's life much more of a challenge, and it would have made that of the woman's I mentioned impossible. This is what I and others here may be the most concerned about as we read your blog posts. I hope that you are still getting adequate support to relieve as much of your burden as possible.

Your words of advice on how to address being a professional patient are right on target. However, that doesn't make them easy and adopting and following them doesn't preclude having days of crabbiness. Being human comes with lots of baggage, and it's hard work to be a smiling poster child for anything every day. What ever you feel, it's okay. We're happy to just hear from you.

Keep on keeping on.

Thanks for your crabby post. At 82 I still have not heard what my friends had been going through when struck by a serious illness
. There is such reluctance and fear to communicate and share these feelings. Your posts make it easier to talk about these changes.
rina

I so admire your "telling it like it is". I think it may be a far better tutorial than all the reading matter in the world. I admire you enormously and am pulling for you every step of the way. Just like all your readers.

Have probably said this before, but I see such healthfulness in your working with where you find yourself. Focus on the now is a dictum we could all benefit by. Often we're surrounded by fearful, confounding circumstances, yet this very moment here and now is okay, or maybe even peaceful, restful, pleasant, beautiful. It's something I have to practice, because I was taught more the "stress and obsess" school of being in the world.

May you have many, many beautiful moments, always.

Previous comments have covered it all! I love your attitude. Just sayin'. 😘

My mother's maiden name was Elizabeth (Betty) Davis. She frequently repeated her name twin's famous declaration, " Growing old is not for sissies" during the time I cared for her before her death at 94. But she was luckier than you or me in that she had no chronic ailments other than macular degeneration, which took most of her eyesight and all of her independence.

As I strode active and healthy into my 75th year, I was basically like her with minimal medical issues. Then, wham-o! Everything changed and I found myself doctoring more and more and coping with diminished energy, mobility and vision for the past 6 yrs.

Confession: sometimes when I would read one of your posts that mentioned or implied satisfaction with your healthy status, I'd think to myself, "just wait until you're 75 or so". I never wished poor health on you, of course, but I felt that a part of you could not relate to those of us struggling with chronic health problems. I'm glad you've recognized this but I'm so sorry it took one of the worst diagnoses imaginable to bring you to this awareness. Way, way, way too big a wake up call.

I sincerely hope that your experience with chemo is as easy as it can possibly be and that your eventual return to more robust health becomes your ongoing reality. You are definitely not a sissy.

Ronni, this is exactly what I hoped you would talk about. When people hear about someone's illness in conversation, they generally rush them on through to the anxiety-relieving bottom line, "But you're going to be OK, right?"

In reality, none of us know if we're going to be OK even five minutes from now!

Add to that the mechanics of illness--getting to and from the doctor and the pharmacy and the place where they do More Tests and ... and ... and

My mother had a massive stroke and died in a day and a half. At her funeral, her friends, also in their 80s, were all but high-fiving me and each other at her "lucky escape"! Even then, at a relatively young 49, I thought, "If death-as-victory is what lies ahead, uh-oh."

In our "but it'll be OK, right?" culture, the land of the professional patient is another country. We all join the minute we pick up our first daily prescription, do our first regular exercise routine that will prevent or cure an illness, make sure we have the doctor's number in our contact list, and wait for the next (and the next) test results.

You are describing it so well--please keep going.

During my lengthy cancer treatment I didn't think of myself as a "professional patient" but rather, someone with a new job. My phone's GPS even has two specific destinations on it, "home" and "work." ("Okay Google, drive to work.") When I got overwhelmed by the idea of 6 weeks of daily radiation treatments (an hour from home), I reminded myself that it was not much different than commuting to a regular job. And like you, I became a student of the disease, reading everything I could find. But, most important, read only reputable stuff from medical sources and clinics. Don't go into forums and read about Sally Ann's awful experience or Mary Beth's sister's decline. You gain nothing but anxiety from reading lay stories of awful side effects. Stick to the factual stuff from medical professionals. And remember, you won't be a patient forever. This is not your new life norm. This is a short-term interruption.

I finally took a living with chronic disease series of workshops which helped cure my magical thinking. Thanks for this post Ronni.

My biggest barrier to well being now is depressive thoughts of my own mortality. And frustration. And deliberate isolation.

XO
WWW

Susan R: Just to keep us on track, many patients live with chronic conditions/diseases that require daily attention and limit their possibilities in varieties of ways. That is one of many reasons to keep in mind that even people with the same diagnosis are affected in widely different ways.

One example: I met a woman at chemo school with the same diagnosis as mine, whose same kind of surgery was performed by the same surgical team as mine but who is being treated with entirely different chemo than I am.

As noted above in the quotation from the CDC, the majority of people 65 and older have multiple conditions or diseases that limit their lives to lesser or greater extents. For all but the the lucky few, these are not a short-term interruption.

Oh my. Your post and these responses have so hit home. I am 77, and suddenly, and I do mean suddenly, I had a gimpy knee. It got worse, and an x ray showed arthritis--which I'd never even known I had. This is not cancer or diabetes. But it sure has slowed me down and reminded me of the vulnerabilities of aging. I took the prescribed high doses of ibuprofen, which didn't seem to touch it, and my blood pressure shot up. I'd never given any of all this a thought before, took a kind of macho pride in it. I especially appreciate all the counsel on accepting the new normal. After all, I don't have a lot of time left to spend stewing! :-). Meanwhile, thank you so, so much for letting us in on your experience as it develops. It is, among other things, so very helpful, and I wish you, as always, a smooth (as smooth as possible) trip through chemo and ultimate full recovery. For my own sake as well as yours!

I just happened onto your blog and adore it. I am a retirement life coach always searching for insights and you have among the best I have read. I only hope to be as pithy when I start my own writing. I did as I call it "the cancer thing" about 10 years ago complete with chemo and radiation. I was lucky and continue to feel so. I read a lot too but caution you to choose wisely what you allow yourself to see because no matter what, it has an effect, even if we don't think so. Also, that "chemo brains" stuff I rejected out of hand. If we think we'll fog up, if everyone else fogged up after chemo, then we'll no doubt fog up. I simply rejected the notion for myself and believe it served me well. You are a gift to us all and we are rooting for you. Blessings, Donna

"how much time chronic diseases and conditions steal from elders' lives nor the personal effort required day in and day out to maintain as much health and well-being as possible"
This says so much about how many seniors including myself go about our daily business with quiet courage and fortitude. Even our families don't know the burdens we bravely carry.
Best Wishes Ronnie, you are truly brave.

I no longer really think about how the awful bodily stress and strain on my muscles, joints, and tendons from a bad fall 5 years ago slowed me down for a whole year with terrible pain and feeling off kilter when going down steps, or out in a crowd. The pain lasted longer than a year but the worst left...then the arthritis pain took over in my hips and knees, but all that is manageable with exercise from yard work, walking and yoga.
Have had arthritis in my hands forever....but I operate with the slogan "use it or lose it"

All that's been manageable, but last year I had to have a torn meniscus repair on left knee which still remains swollen (after 14 months). Yes, this is due to aging but I am soon to be 78, and I only take 1 pill a week for osteoporosis (I know the risks but so far, no side effects, after taking it for 10 years, off it for 2 years, now for 2 years). I do take over the counter anti inflamatory pill when I suffer or am cranky. Curcumin concentrate recommended by an RN friend helps too, and vitamins.

My glaucoma is controlled with 3 different daily eye drops but guess I am lucky genetically as most of my younger friends are taking many RX meds. I had to hire a cleaning lady 5 years ago with the injury and still have her 2 X a month....it's a Godsend as I no longer have the energy to do it all...reading murder mysteries, socializing, cooking, and daily cleaning up after cats, spouse and me plus my bonsai, my flower garden, and my art work keep me plenty busy.

Wishing you smooth sailing through the chemo, Ronni, and thanks for your honesty blogging about this time of your shocking medical diagnosis, and surgery.

Okay, COL, you're absolutely at the top of your form with this one. SOOO right! I hope you recognize what a huge help it is to others to read about all this!

I myself, just turned 80, have two ten-year-old fake knees, quite a few fused vertebrae, and longstanding osteoarthritis and hypertension. The hypertension seems to be fairly steady--thank you, pills!--but the arthritis keeps doing one or two things new on an ongoing basis. I take ibuprofen, opium, and a few always-in-trial supplements. I do yoga. My latest symptom is a trigger thumb. But my experience has been those come and go. So far, it's not preventing me from playing the piano.

I should probably think of the violent-ward show in Washington as a welcome distraction from the constantly falling hailstones of age-related stuff.

As always, COL, you are a priceless resource.

Lots of wisdom here from Ronni and all commenters. Thank you again.

Crabby Old Lady is on the case.

Stick with her, Ronni.

Also sending Cathy J a hug from London, U.K.

Nothing to add, just to say I'm thinking of you. If surgery was Phase I, then you are getting ready to embark on Phase II, maybe? Think of us as your invisible support team, ready to cheer you on and eager to hear your experiences through the filter, as usual, of your wisdom. Blessings.

On the case is right--I love COL! I'm not facing life-threatening conditions or disabilities yet, but at 80 I'm no longer cruising along like I was even 2 years ago. I didn't sign up for the significant chronic back pain I now have, which can sometimes make continued longevity hold less appeal than it once did. It also limits my activity levels somewhat, and I don't like that. The 3 back surgeries I had I my 20s were successful, and I'm absolutely grateful for the decades of functionality and manageable discomfort that resulted, but I think the "warranty" has now expired after almost 55 years.

I admire the fortitude and courage of COL and of the many TGB readers whose lives have been altered in entirely unpleasant ways by illness and infirmity. You set such stellar examples--I doubt that I can live up to them.

I may have related this before - if so, bear with me. About 5 years ago an MD gave me 6 to 12 months to live. After the usual anxiety and the beginning of 'giving away stuff' I decided to heck with this (not my real words) and changed MDs. I'm still here, dang.

However, it was a wake up call and I decided to live day to day, moment to moment, etc.

Frankly, I'm not sure I can say this right, but here goes: If it's not getting in my way right now, then I forget about it and enjoy the "now". And I put myself in a position where the 'now' IS enjoyable. (Play with the cat or the computer, read a book, take a drive, visit with friends...etc.)

Meanwhile, yes, of course, perform the medical tasks that make our lives easier. for some of us it's chemo, for others, it's something else.

So, I just hang in there, and enjoy what I have. And that's a lot.

Crabby old lady, thank you for sharing your journey with us, internal and external, and that every word you share is so real and relatable and not tripe! The new reality...and then this and then this...you're spirit is indomitable.

God love ya, COL and friends commenting. So sorry for your pain, Ronni, but I love reading your blog. I have had all kinds of ailments, and have lost so many beloved friends & relatives....but life goes on. Sorry I have never had the pleasure of meeting you face to face, but your photos across the top of your blog and your words right here have been a huge gift from on high. Thanks for your warmth and common sense. I have outlived my parents and all of my siblings, though my own children, nieces & nephews, and their children--and grandchildren--are a fabulous bunch. today is my son's 49th birthday. He's the baby of my family. All of his sisters are in their 50s. Today is Thankful Thursday--but every day is wonderful, and I am so grateful for everything. I am 80 now, and that's far different from the years before. Yeah....do your best and enjoy whatever you can. And THANK YOU for being you and for writing about it!!

I decided yesterday not to comment on the current p0st, simply because I had nothing new to say. It becomes easy to comment when the Original Poster decides to post a complaint, especially about becoming a "Professional Patient."

We have all been caught up in the developing story of a cancer patient and her travails and troubles along the way -- even though we may have been involved in a similar situation prior to her diagnosis and treatment. The fact that she is documenting her experiences and treatment in a way that none of us had tried to do has involved us as never before -- it is fascinating and concerning as no other experience has been done -- EVER.

Ronni, you are opening our eyes to a hidden world of medicine. One that has previously been open only to those who have been diagnosed with active cancers. A world we hope we never have to experience, but which many of us or our acquaintances or friends or ourselves may have experienced, but which many of ours have kept quiet, due to a promise of confidentiality or friendship or simply promises of friendship or family secrets.

A few of us have been exposed to this secret world of cancer, either through familial relationships or through friendships, and we have kept those secrets, either because of family ties or confidential relationships, since our friends would rather keep their experiences secret or because they bear a feeling of guilt since their behavior brought them into exposure to carcinogens...

We all feel that we have made mistakes or have acted recklessly at one time or another and brought this disease upon ourselves -- and now we are paying the price of our missteps or sins by being sick or infected with cancer. So we feel a bit of guilt in addition to our illness.

Which is all a bunch of BS. We did not bring this upon ourselves. But we seem to feel called upon to pay for our sins.

It is inherent that we must rebel against such feelings and to realize that we are blameless and have no reason to feel guilty when we learn of our illness, but still, we must convince ourselves that we did not bring this upon ourselves and that we are blameless. Still, there is a reason that we are ill and others are not, so we try to rationalize our situation and try to place blame wherever we can -- after all, we are good people and always tried to do the good thing and to help others whenever we could.

It's inherent that we become Crabby Old Lady and try to purge ourselves of any guilt in the matter. After all, we did try to do the good whenever we could, so it must not be our fault.

We must keep our sense of humor and rise above the maudlin -- or blame it on someone else if possible. LOL

Oh, how even more precious you, Ronni, and so many of your amazing readers have become to me. I so so wish I could just transfer your posts and their comments to a folder (with index) to keep by my bedside. Some posts and comments, like this one, are just so full that one needs to read and re-read ... and mark somehow for return reads when necessary.

Like Teresa, I had hesitated about adding another comment. Unlike Teresa and others above, I have nothing of particular interest to add. But I do want to thank all of you for your generous honesty and for your insights.

I have more or less "learned" that if it's not one thing, it's another, but that as long as some days are still better than others, it's easier to keep on keepin' on.

I admire your ability to face reality head-on, from the start, in re your physical, mental and emotional health. You have thus eliminated some of the complications of being a "professional patient".

I don't know how it happened, but I failed to read this post yesterday. I'm glad I read it today.

After reading the comments of other cancer victims, and of course you Ronni, I feel inordinately fortunate to have reached my advanced age without having the worst illnesses of aging.

I can't add anything that has not already been said. It takes newfound courage to deal with the downside of aging with it's many new unwelcome diseases and accidents like broken bones. Few escape some or all of these aging issues and as each one limits us the only thing I can say is, as each ability is lost try to replace it with a new one.

Darlene, I'm trying. I just can't seem to find enough "new" abilities to replace those that are or may soon be disappearing--some of which are fairly essential, like housekeeping and kitty care.

You--and Ronni--are doing a much better job of ageing than I ever will. I honestly didn't expect to live to see 80, and I didn't "prepare" very well. My husband (soon to be 88) is doing MUCH better with it than I am.

Elizabeth, do you have a self feeder and water dish for kitty? My daughter has one that only needs to be filled periodically. She keeps it on her bathroom counter so she doesn't have to bend to fill it or change the water. I am not sure about the litter, but apparently she has litter that does not smell and the solid waste can be flushed down the toilet so the litter does not need to be changed often.

I can no longer do housework so I have a cleaning lady come in for 2 hours every other week. She cleans my tile floors, vacuums my carpet and does other needed chores.

You may already know about the mentioned things above.

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