Aging Ungracefully

Posted on: August 27th, 2015 by
26

Pre-cancer, I was sturdy, strong, resilient. I reached far into the sky, living the myth that mortality was far, far away, especially since I took excellent care of my body. Like many young people, I believed I wouldn’t have to confront death for a long time.

I had incredible amounts of energy and an amazing memory, and I was in excellent physical shape, being an avid runner and walker.

Until cancer made me realize long-term health was a pipe dream.

Understandably, I’ve never been the same since diagnosis. After all, who is?

During treatment I felt exceedingly old, lacking energy, suffering from extreme fatigue and major cognitive impairment. Medical staff told me that I’d bounce back after treatment. But a funny thing happened on the way to post-cancer: I didn’t bounce back well.

The body and the mind never forget a hurt. And cancer and its treatments are a major hurt.

The multiple surgeries have taken their toll on my physical and mental health. I have body image issues. I’ve had bone fractures, part of the collateral damage of treatments.

And I still have chemobrain — 14 years after chemo ended. My rewired brain has gone haywire.

I struggle with short-term memory. In desperation to brush back the chemo fog, I desperately play Lumosity brain games, but I get frustrated easily. Reading is more difficult, as my attention span has diminished. But I keep reading; I refuse to give up on literature, which I love, and I refuse to completely give in to chemobrain.

But, let’s face it, since cancer, I feel older than I am.

I have felt old since the very first chemotherapy treatment and since radiation.

And to add insult to injury, some medical professionals use diversion tactics to deny that cancer treatments have aged me.

Like the specialist who told me that a stress fracture was because my body wasn’t sufficiently conditioned, rather than the truth about my compromised bone health. Or the physician who wondered if other fractures were due to me accidentally sustaining a recent injury rather than wonder about my poor bone density.

Or the doctor who flippantly told me that my short-term memory problems were not due to chemobrain at all, but due to the natural process of aging.

Or the doctor who blamed my brain problems on aging rather than chemobrain. How could this be, when I noticed a decline in cognitive abilities after my very first chemo treatment? My brain power didn’t coincidentally diminish on its own as soon as chemo was administered.

Or the physician who told me the effects of chemobrain were short-term and I shouldn’t have symptoms of cognitive impairment more than a year after treatment. Well, I know my brain fog is permanent.

Or the doctor who believes my medications are the short-term-memory culprits.

Some physicians simply dismiss my true concerns and feelings about cancer treatments’ collateral toll on the body, mind, and spirit.

If I weren’t so level-headed, I might think there is a medical conspiracy to keep mum about treatment’s looooong-lasting effects.

I’m not trying to be ungrateful here. I’m grateful to be alive, NED (no evidence of disease), and to be able to swim and walk. Not everyone is this lucky. I love my doctors and medical staff. But sometimes I just feel dismissed.

Patients house too many truths to be dismissed.

Empire State Building

Have you ever felt dismissed by medical professionals?

Do you feel cancer and/or its treatments have aged you?


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26 Responses to Aging Ungracefully

  1. Scott Johnson had this to say about that:

    I’ve given up on doctors. Except for momentary encounters, they just don’t have time to do any follow through. Seeing them for a few minutes of generic support each year is hardly supportive of any relationship I know of.

    As ships passing in the dark how would we know each other anyway? Also, from what I’ve been reading, the damage is done to us and WE have to learn to live with it.

    This doesn’t dismiss our feelings or excuse the medical system for its self-importance which is so blind to our needs. Thing is, these people have nothing to give back to replace what went missing in us. So we shouldn’t be looking care from them. We should look to each other.

    Sorry if this seems unhelpful Beth and I don’t mean to imply you “get over it.” Only I have minimal access to medical services and what I do get is the prevention of death–no small thing but not the same as the supporting of life.

    I’m reading this, its helpful.

    Loss of self: a fundamental form of suffering in the chronically ill
    Cathy Charmaz
    http://www.aleciashepherd.com/writings/articles/other/Loss%20of%20self%20A%20fundamental%20form%20of%20suffering.pdf

    • Beth L. Gainer had this to say about that:

      Hi Scott,

      Your comment is certainly not unhelpful. I totally get what you’re saying, and you are not implying that we “get over it.” In the grand scheme of things, perhaps we patients do have to rely on each other instead of us relying so heavily on the medical professionals to “fix” what is wrong with us.

      At the same time, it’s normal to expect medical professionals to be empathetic to our needs. After all, we depend on them to help us through medical crises, and we don’t need a bunch of denial. Most medical professionals have acknowledged the collateral damage that have happened to me. For me, this is a crucial part of care: to be acknowledged and validated.

  2. Rebecca had this to say about that:

    Beth, Tamoxifen has aged me. I have joint pains, awful dryness (down), I get moody, feel tired often. By 10PM all I want to do is sleep.

    I’ve felt dismissed by my doctors a lot, especially when it comes to my quality of life. When I tell my onco about side effects she always says, “you know treatments can do that so you will live with pains for the rest of your life.” I appreciate her honestly, but I wish she could offer some type of solution.

    When I talk about having a child, she suggests I rent a belly. I don’t have that kind of money. I understand she worries about my well-being but I need to find meaning too.

    I wish I had the option to stop tamoxifen without feeling scared.

    In a way, I feel like I skipped 10 yeas of my life. I was dx at 32 so now I feel like I am in my 40’s. All the “normal” things 30-year-old women do, I haven’t done, really. It isn’t fun. But I love to exist even if I feel miserable sometimes. I too feel grateful to be alive.

    There are great days too. I hope you have many of those.

    • Beth L. Gainer had this to say about that:

      Rebecca, I’m sorry you suffer so much from the effects of Tamoxifen. And I’m sorry you have felt dismissed by your doctors. Cancer and its treatments are awful.

      The whole rent-a-belly comment seems rather flippant. I know I asked about children after treatment, and it turned out I adopted a child. It can be costly, but there are also grants available sometimes.

      I’m so sorry you feel as if you aged so much. It’s a horrible thing.

      I do have more great days than bad days, and I’m glad you have really great days too. I am grateful for the wonderful days I experience.

  3. Nancy's Point had this to say about that:

    Hi Beth,
    Oh gosh, the collateral damage I have has indeed been attributed to normal aging and I always hate it when things are dismissed that way. Of course, some issues I have are probably due to normal aging, but some most definitely are not. I know my body best and I know when things went a-muck. It’s not that hard to put 2 + 2 together. Great post on a topic I’ve been meaning to cover for a long time too. Thank you.

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      I’m sorry about your collateral damage, and you said it so well: “I know my body best….” You do. Like you, I do have issues due to normal aging and it’s so darn hard to distinguish between these effects and the effects of treatment.

      Still, nevertheless, I also know my body well, and I know what went awry and why: and it’s because of the collateral damage.

      Thank you for your comment. I so appreciate it.

  4. Elizabeth J. had this to say about that:

    I know I have aged faster than I should have. I know too many women my age and older who are still active and energetic. Heck, I know a lady in her 90s who just went on an overseas mission trip, while I struggle to get through daily activities.

    I have fatigue. I have neuropathy in my feet. I have joint damage. I have lymphedema.
    I’m grateful to be alive, but they definitely downplay collateral damage and side effects.

    • Beth L. Gainer had this to say about that:

      Hi Elizabeth,

      Thank you for sharing your experience with the collateral damage of treatment. I find myself envying people much older than myself who can do all the things I cannot do.

      I’m sorry you are going through this aging process prematurely. Being grateful to be alive is a great thing, but I do think, as you say, collateral damage is downplayed in the medical arena.

  5. Kathy Cook had this to say about that:

    Well said! I’ve been on Arimidex or Femara for 3 years and although I was a marathon runner previously, I can barely walk some days from the joint pain. The doctors are in major denial about the effects of these treatments (most, not all – Patricia Ganz of UCLA is doing great research on chemo brain).

    • Beth L. Gainer had this to say about that:

      Kathy,

      I’m sorry you suffer so much from joint pain. I was on Aromasin, and I went from being active to crippled. It was awful. I know what you are saying about barely being able to walk. It’s an awful thing to give up an activity one is passionate about just to have so much pain.

      Thank you for the information on chemobrain research. I’m glad more is being done in this area.

  6. Linda Rochon had this to say about that:

    YES YES YES YES YES!!!!! Almost 5 years on the AI after MX, chemo, Herceptin, rads…. Instead of aging 5 years, I’m pretty sure that my body has aged at least 20 years, if not more!!!! I, thankfully, have collected a group of health care providers that listen, but have no answers, they can only offer meds. :-(

    • Beth L. Gainer had this to say about that:

      Linda, this premature aging is awful. I’m glad you do have great health care providers who do listen to you. Like you, I’m offered medications too, but I know I’ll never return to my former self.

  7. Linda Rochon had this to say about that:

    ….and (sorry chemo brain) When I was diagnosed I had a full time, very intense, multi-tasking job, by the time I was done I couldn’t read a book. I worked full time, still cooked and cleaned for my family, worked a couple of nights a week at my husbands business…. now I’m lucky if I have 4 functional hours a day, and that includes getting myself showered and dressed, I had to go on full disability (thank God my job had long term disability so that I could still get 2/3’s of my pay until I’m 65). When I think about what I could do and how that changed in just a couple of months, I just sit and cry. It helps to know that there are others out there that are having the same issues, I’m sorry that you do, but it somehow validates that what is happening with me is real, not just depression, or whatever. Thank you so much for this insightful post. God bless you, and all of you other sufferers!

    • Beth L. Gainer had this to say about that:

      Linda,

      Chemobrain is so very real. Like you, prior to cancer I could multitask incredibly. Now reading a book is challenging. I’m glad you have long term disability, which can help.

      You are definitely not alone. Comments from my readers also validates that what I’m going through is real.

      I wish you the best and hope you have more good days than bad ones. We all just need to do our best to cope.

  8. Kathi had this to say about that:

    Must be something in the zeitgeist. I’ve been working on a post about more or less the same thing. If doctors would stop lying to us or not acknowledging collateral damage from treatment, that might help us come to terms with how much cancer & its treatment have changed us. I was a ball of fire before cancer. I’m more of a wet noodle now. And it’s NOT because of the passage of time. xoxo, Kathi

    • Beth L. Gainer had this to say about that:

      Hi Kathi, I would love to read your post on collateral damage. I’m sure the post will be excellent. I agree that we know our bodies best and know when our physical/emotional state has been affected by cancer and its treatments.

      Keep writing!

  9. Renn had this to say about that:

    I can SO relate, Beth! I could go on and on! I struggle every day with the changes cancer has wrought.

    At this point in my cancer crusade (4.5 years out), the first thing I look for in a physician is EMPATHY. I have had it with dismissive doctors, busy doctors, unsympathetic doctors, got-their-own-agenda doctors, gloss-over-the-things-that-can-go-wrong doctors. Sometimes it feels like the only thing they are good for is to write a prescription! Hate to generalize but I really had a bag of bozos for a while there. Not anymore. I got my doctor act together.

    I feel your pain. Thanks for writing about this.

    • Beth L. Gainer had this to say about that:

      Renn,

      Thank you for your comment. It seems you’ve really run the doctor gauntlet, just to find the right ones — good for you for persevering to find the right doctors. Empathy is also what I look for in doctors. As you can see by my post, I’ve had my share of dismissive folks.

      I also have my doctor act together now. It took awhile, but it’s great to have wonderful doctors.

      I’m sorry that you could relate so well to this post, with all the collateral damage you’ve experienced as a result of cancer treatments.

      Thanks again for reading and commenting.

  10. Cathy had this to say about that:

    I didn’t have chemo, but had lots of complications. In the last nine months I’ve had seven surgeries, and have been in the hospital for a total of a month. Not only am I exhausted by noon (actually, make that 9 am), but I have noticed some cognitive differences and short-term memory loss. I really have a much harder time focusing. No one else seems to notice, fortunately, or if they do they’re too polite to say so. My job requires mental acuity, so I’m afraid to ask anybody. My last surgery was two weeks ago, and there are now none on the horizon, so I am hopeful that things will improve. Reading about your experience is frightening, and I am very sorry you have had to experience it.

    • Beth L. Gainer had this to say about that:

      Hi Cathy,

      I’m so sorry you’ve had to endure such surgical trauma — each surgery really is traumatic to the body. I don’t blame you for being so exhausted so early in the day.

      I think collateral damage in general is frightening and unfortunately not discussed enough. I think the tide is changing, though, although we still have a ways to go before more people acknowledge the collateral damage of treatment.

  11. Nancy M Cappello had this to say about that:

    Beth – so well said. It is remarkable how many health-CARE providers dismiss our symptoms and react in a nonchalant manner about OUR health concerns.
    Great Post!

    • Beth L. Gainer had this to say about that:

      Nancy,

      Thank you so much for your kind words. I think it’s sad how many medical providers do dismiss us. On the other hand, I have found many who have been supportive and understanding. It just bothers me that it sometimes takes awhile to find those supportive ones.

      Thank you for reading my post and commenting.

  12. alli had this to say about that:

    I don’t believe I have had a pain free day since all this began 6 years ago, Before that I would ride my bike for hours, miles at a time Now I haven’t since. My joints hurt worsened by taking all the other prescribed Med :: Arimidex, Femarra, Tamoxifen . I made the choice of quitting them all. Tamoxifen use was showing early stages of cervical change potentially being cancer. The others sucked the life out of my bones. I have severe Neuropathy in my left hand I have lost feeling in my baby finger From February I had such a serious bout of neuropathy in my left foot I can not walk without a cane or at times must use a walker to get around.Aged? My grandmother at 93 moved faster than I can now, I wouldn’t say my Drs. have been dismissive I seemed to have lucked out going on 7 years same Onc. I have a great GP my Internist just retired at 84 I will miss his wit and good doctoring! I am now dealing with something potentially very serious a direct result from Taxotere.. it never seems to stop.. one thing after another. I will say I have never had a Dr tell me these are side effects you have to learn to live with them..
    No I don’t and I will never give in to them , that attitude you may as curl up in a ball hide in a corner.. Thanks Beth A poignant topic. Please check out my new blog to and hopefully add your name.. Love Alli Xx

    • Beth L. Gainer had this to say about that:

      Hi Alli,

      I’m sorry for all the pain and suffering you are enduring, all a result of cancer treatment. Cancer treatment can be crippling; I know it did a number on my bones and joints, and I’ve felt so old.

      It’s sad that Taxotere is causing a potentially serious condition for you. I’m so glad you have a great medical team. That makes all the difference. I will check out your new blog soon.

  13. Eileen@womaninthehat had this to say about that:

    It’s so irritating when others attribute the collateral damage to aging. I’ve said too that aging is a gradual process; chemo-induced damage happens instantly after receiving treatment. But what really gets me is when doctors won’t admit the treatment that helps us damages us – permanently. I think it’s hard on their egos because they administer the poison. Beth, as always, I totally relate to your posts.

    • Beth L. Gainer had this to say about that:

      Eileen,

      Thank you for your kind words about my posts; that is how I feel when I read yours.

      All I would like is for doctors to admit that cancer treatment harms us, too. I guess many doctors are afraid of lawsuits, but all I want is validation, which I luckily get from the online community.

      You are right about aging being gradual. I felt myself grow old after the very first chemo treatment.

      Thank you for reading and commenting on my post.

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