by Carolyn Thomas ♥ Heart Sisters (on Blue Sky)
After reading my recent Heart Sisters post called Finally – Some Good News, my longtime reader Kathleen left this reassuring response for me:
“I am so happy for you! Not out of the woods, but many, many more clearings and the light is brighter every day.”
Kathleen’s woodland analogy perfectly fits how I would also describe this post-chemotherapy/ post-mastectomy period of my life. Following month after month of suffering dreadful chemo-induced side effects, I’m not yet out of the woods – but I’m starting to recognize what “normal” might feel like again one day.
There is no way I can sugar-coat the debilitating emotional and physical toll the diagnosis of invasive ductal carcinoma has had on my life, but Kathleen was correct. There are now indeed parts of each new day that do feel brighter, little by little. My post-surgery pathology report was all good news. My shiny red walker (on loan from the Red Cross) now allows me to get around our little village despite the painful effects of chemo-induced nerve damage to my feet. Last week, I cooked dinner for my family! And with springtime sunshine on its way, it’s also true that I can feel sparks of joy among those “clearings” even with the tiniest inspiration – like each green bud I discover every morning sprouting along the delicate branches of my Little Quick Fire hydrangeas out on my balcony.
Feeling better after cancer treatment is a relief, but not a surprise if you consider what can magically happen when we no longer have toxic poisons drip-drip-dripping into our veins every three weeks in the Cancer Clinic’s Chemotherapy Room.
The hard truth about chemo, of course, is that these drugs are not only effective at killing off cancer cells, but equally effective at killing off my own healthy cells, too – hence the brutal side effects I’ve been suffering. Many cancer patients I’ve met describe how that reality can affect their quality of life – even after treatments end. It’s common to feel both hopeful and grateful when oncologists assure us that our treatment plan is working, while at the same time feeling sicker than we could ever imagine. We become “survivors.”
I’ve also learned about something called “late effects of cancer treatments”. Mayo Clinic oncologists explain how this happens:
“Cancer treatment may be over, but the side effects of treatment can continue. The treatments that may have saved your life may also cause severe side effects going forward. And as more people live longer after cancer treatment, more is being found out about late side effects. Cancer survivors might have late effects of cancer treatment years later – which may be permanent. It isn’t clear that late effects can be prevented, or why some people might experience late effects while others don’t.”
So are Mayo cancer specialists actually telling patients: “We do not know if our treatment plans are going to seriously harm our patients longterm even after we have stopped their treatments, but we’re going to keep recommending those treatments anyway”?
Bloody hell!?!
Back in 1985, The New England Journal of Medicine published Dr. Fitzhugh Mullan‘s account of his own cancer diagnosis and treatment. In that article, Dr. Mullan defined what he called the primary seasons of cancer survivorship:
- ♥ Acute Survivorship: “The stage of acute survivorship begins at the moment of diagnosis and extends throughout treatment.”
- ♥ Transitional Survivorship: “Once the initial phase of diagnosis and treatment has ended, the transition back to ‘normal’ or a ‘new normal’ begins. The medical team is less involved now. The relief and celebration felt by the patient might be mixed with feelings of isolation and depression.”
- ♥ Extended Survivorship: “Many cancer survivors who are disease-free following treatment are living with the anxiety of varying risks for recurrence.”
- ♥ Chronic Survivorship: “A growing number of cancer survivors are living with cancer as a chronic disease. For chronic survivors, day-to-day life may have many normal aspects, but the fear of recurrence or disease progression is often an ever-present concern.”
Dr. Mullan’s list of cancer “seasons” makes sense to me because it seems real to me. It’s not telling us “You’re fine!” It’s not trying to cheer us up. It’s not offering trite platitudes.
Meanwhile, thank you Kathleen for your thoughtful woodland analogy that so beautifully matches my own experience so far.
Q: What season of “survivorship” are you in?
♥
NOTE FROM CAROLYN: I wrote more about becoming a patient (no matter the diagnosis!) in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop ( please support your independent booksellers) or order it online (paperback, hardcover or e-book) at Amazon– or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Heart Sisters 
Full of admiration for your willingness to write about your story with such honesty. I am with you every step of the way, Carolyn.
For all of us, it is bravery to proceed in living day after day the best way we can even when dealing with twists and turns of fate not of our own choosing. You are giving a master class in the how to’s.
You are informing and teaching us all. It is a worthy service that you are doing. Thank you very much.
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Thanks Maxine for your very kind words of encouragement. You’re so right – life will always throw those ‘twists and turns of fate’ at us (if only life would take turns once in a while by throwing fewer of those twists and turns all at the same time!
Take care. . . ❤️
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Carolyn! Oh my goodness gracious sakes alive. I’ve not been blogging (doing a monthly newsletter instead) nor reading blogs. Your title caught my eye. You have been to hell and back too many times in your life.
I don’t have any comforting words, or inspiration. All I have is admiration for how you always turn life-threatening health “challenges” into helping others.
Few people do that, much less on the scale you’ve achieved.
Sending love,
judy
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Hello Judy-Judith! So great to hear from you! I agree – I do feel like I have been to hell and back (I did not like it one bit!) My friends and family insist on calling me “brave” or “strong” but honestly, all I do is show up for appointments and treatments and surgery. It’s like a conveyor belt. I just jump on and try not to fall off. No bravery or strength required.
After my mastectomy in November, I had to sleep sitting upright for a while (helps the surgical drains stay vertical apparently) and I used to wake up in the middle of the night feeling weird because both my cheeks were wet with tears – tears pouring down my face. I was just crying and crying. But I didn’t seem to have a specific reason for weeping. I wasn’t in pain. No bad dreams. At first, I thought it was because I was sitting up?!? I now think it was because I was suffering. Everywhere. Body, Mind, Spirit. Cancer is pervasive.
But it’s not only the suffering that makes me a world-class crier now. I spent an entire appointment crying in front of the wonderful Urgent Care Clinic doctor because he was being so kind to me. There’s nothing wrong with crying, of course. In between, there are those moments of pure joy.
Take care – thanks for sending all that love. . .❤️
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Carolyn,
I too was crying (still am) because of health “stuff” . . . like crying at Tampax commercials . . . I thought I was wacko. Did some research (yay AI) and was relieved to find this (which you might already know . . I didn’t even though my monthly newsletter focuses on neurochemical research – duh):
“Crying is a natural and effective way to relieve stress by releasing stress hormones like cortisol, triggering feel-good endorphins and oxytocin, activating the body’s calming parasympathetic nervous system, and helping to restore emotional balance, leading to a sense of relief and improved mood. It acts as a safety valve for overwhelming emotions, helping you process difficult feelings rather than bottling them up, which can be detrimental to health”
Can’t say my crying releases enough endorphins or oxytocin for what I’d like but at least I remind myself I’m not completely wacko . . .
VO (virtual hug).
J.
P.S. I actually get annoyed when others say I’m brave and/or strong.
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Hi again, Judy-Judith. That quote makes sense. I’m learning that I do feel better (although exhausted) after a good cry (that must be the ‘safety valve’ at work). But when I was a little girl, being a “cry baby” was simply not tolerated, resulting in parental warnings like: “I’ll give you something to cry about!!” I’ve cried more in the nine months since my breast cancer diagnosis than I have in years. . .
❤️
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OH my GOODNESS – Carolyn, we were raised by the same mother! That very warning, not even veiled, has followed me my whole life. The fear that there was something unknown even more ominous in store for me stopped the tears fast. Not now . . . 81 and 11 months worth of crying has been unleashed. . .
P.S. you don’t need to respond to this – I was just blown away by hearing you too were warned: “I’ll give you something to cry about!!”. Maybe I’ll start telling myself “Ill give you something to smile about” . . .
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Even worse, Judy-Judith, was the fact that my Ukrainian parents used to yell that warning IN UKRAINIAN – which somehow sounded way louder than English… And one day I informed my Dad that my friend Linda received 50 cents from her parents for every A in her school report card. Guess what my Dad replied? “I’ll give you something if you DON’T get A’s!!! I found those threats highly motivational. . . ;-(
And I love your alternative suggestion: I’ll give you something to SMILE about! So much kinder. . .
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To write out “ai yii yii” phonetically in Ukrainian, you would use:
Її, її, її (pronounced yi-yi, yi-yi, yi-yi).
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Hello Judy-Judith -thanks for that phonetic translation! Її, її, її ! ❤️
P.S. I quoted you in tomorrow’s blog post called “The Patient Dilemma: To Cry or Not to Cry”
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PS It seems that my Heart Sisters site (and other WordPress sites) are experiencing weird glitches today – I’m unable to publish or edit. So I’m off to make coffee while hoping these these glitches are temporary. . . ❤️
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PS It seems that my Heart Sisters site (and other WordPress sites) are experiencing weird glitches today – I’m unable to publish or edit. So I’m off to make coffee while hoping these glitches are temporary. . . ❤️
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Dear Carolyn,
I have been meaning to write for so long, ever since you were diagnosed with breast cancer. I feel so bad that you are enduring all this, especially after the misdiagnosis of your heart disease and all that followed.
We readers have all been fortunate to learn from all your wisdom and research follow your “medical misadventures” and I for one found your blog while in the CCU after my heart attack in 2013. It has helped me immeasurably over the years and I have reached out to you in the past with my questions. I have never had cancer but unfortunately, my dear husband did – rare, aggressive, difficult to find and very quickly fatal. I hope and pray that your pain eases, that the cancer stays away and that you will recover. God bless you!
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Thank you for your kind words – they mean so much to me.
I’m so sorry about the tragic loss of your husband. What a nightmare that must have been for your entire family. You may have never been diagnosed with cancer yourself, but when you have a spouse or other close family member diagnosed, it’s a shared burden that none of us feel able to bear.
When I was first diagnosed (on April 1st!) I couldn’t help comparing my breast cancer diagnosis to my 2008 heart attack diagnosis. The first and most overwhelming difference is that when you and I had our heart attacks, we felt horrible because something (a blockage, a spasm, a wonky heart valve, something!) was preventing blood flow to our struggling heart muscle cells. Our scary symptoms, no matter how excruciating, are almost always lightened once those blocked coronary arteries are “revascularized” as our cardiologists say. When blood circulation is restored, the heart muscle cells perk up, oxygenated blood flows through the body’s blood vessels, and we almost always start to feel better.
But with cancer, I didn’t start to feel horrible until AFTER my treatments started. It was those relentless treatments that have tormented me (and some continue their torment even after the worst of the chemotherapy is done!) I’m grateful for modern research that’s come up with cancer therapies that can save lives – but couldn’t researchers look at how to address those debilitating side effects while we’re living those lives?
Take care. . . ❤️
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Thank you for all that you do in this blog; its been super helpful for me over the years. I was happy to read that things are improving for you.
Thanks for sharing this model. I’m not a cancer survivor, so can’t apply the model from that perspective.
However the model really resonated with me vis-a-vis the CMD portion of my heart journey. Four and a half years into that journey, I feel like I’m now in the chronic survivorship season.
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Hello Simona – I was thinking the same thing when I first found that “seasons of survivorship” article: although that list was aimed at cancer patients, it can also apply to so many other diagnoses. The descriptions of each ‘season’ reminded me of my post-heart attack recuperation, too – especially the part about anxiety about recurrence. Back then, I was often scared that any tiny bubble or squeak in my chest was for sure another heart attack coming on!
Thanks for your thoughtful comment today. . .❤️
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I remember how disorienting that survivorship phase felt, Carolyn – when treatment was over, everyone expected relief, but my body and mind were still very much finding their way. Your ‘clearings in the woods’ framing captures that in-between space so aptly.
Wishing you continued healing on this next phase of your journey.
Marie Ennis-O’Connor
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Hello Marie – that word “disorienting” truly captures that in-between space. The first disorienting moment hit when I noticed that my calendar suddenly had so many blank dates for the first time since last spring. I’d been accustomed for many months to every date on every calendar being filled with at least one cancer-related appointment (and often more than one on the same day!) or a new scan, or a lab or nuclear medicine or other tests. I suddenly had no clue if I still needed to go in for my blood tests anymore, for example. It was as if as soon as I was ‘handed over’ to the surgeon, my oncologist disappeared – or had he? Looking back, I now wish I had confirmed all those details during my final oncologist appointment – although I did not know then that it would be my last appointment! I had to call his office to find out that I’m booked for a follow-up appointment with him every six months – I think!
Take care Marie – thanks for your kind words. . .❤️
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