Survivorship: Not out of the woods

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).