I am a 9-year survivor of stage IV anal cancer. I have endured surgeries and various rounds of treatment that included chemotherapy and radiation on two separate occasions. Those treatments ravaged my body and my mind. They applied stressors to my caregivers, my family and all those who care about me in ways that words usually fail to encompass. What happens to patients throughout and after their ordeal with life-altering diseases? It’s different for everybody. But I do know this to be true: There is an enormous need for palliative care.

Many think that palliative care is only for the dying and simply a synonym for hospice care. The two are almost always mentioned in the same context and in the same breath. Say it with me, “palliative care and hospice.” The two have been mentioned together so often that many people believe they are one in the same. These words must be untangled as the first and most important step in a world where palliative care is offered to all who need it. I say palliative care is for the living. It should be incorporated on the day of diagnosis at any age and any stage of cancer.

Palliative care uses an interdisciplinary approach to address the symptoms and psychosocial stress for people who are living with life-limiting illnesses at any stage. The goal is to improve quality of life, and the care team usually involves physicians, nurses, physical and occupational therapists, speech-language pathologists, and more.

As described, it seems easy enough. Assemble the team of experts, work with the primary care physician, consult physician specialists as needed and there you have it — palliative care. If only it were that simple.

As I have found through my advocacy work, nothing requiring a paradigm shift is ever easy. To me, it seems as if oncology is comfortable with the current definition of palliative care and the ensuing end-of-life routine. A patient’s cancer progresses, they exhaust all means of treatment, they face a difficult truth, and hospice is consulted in their final days to make them as comfortable as possible so they can enjoy what small window of time they have left.

Enter me and thousands of other patients, stage left. I’m still standing well beyond my predicted demise. I didn’t die “on cue” and my window of time left to enjoy my life has eclipsed all expectations. While I was in active treatment, I received some palliation: pain management, wound care, a dietary consult while hospitalized. But most of the last nine years of my life have been spent outside of hospital walls and with no formal palliative care at all. My care consisted of periodic scans to check for cancer recurrence and brief physical exams. I was never really evaluated for side effects, and the “wait-and-see” approach was utilized. I never filled out a quality-of-life survey for oncology.

After about three years of suffering, I took charge of my own symptoms and became somewhat of a self-advocate. However, my ability to “see around corners” as to what was and is in store for me as far long-term side effects is limited. I often find myself in front of a specialist wishing I had gotten there so much sooner, if only I had known. I am a registered nurse and one might think that it would be a huge advantage. I am here to tell you that it’s not, and for those cancer patients with no medical background, or family members with such, I expect they struggle a little bit more, but the struggle is real for us all. And I feel bold enough to say that not only has cancer been life altering, it has potential, in itself, to be life shortening. So, when I state, “These long-term side effects are killing me.” There may be a sad truth in those words.

You might be asking yourselves, “How bad can it all be? After all, you are alive.” I can only speak for my cancer type, as each have their own bevy of side effects, both short and long range. My physical effects have been concentrated in my pelvis and primarily a result of the radiation treatments. In the beginning it was sexual dysfunction, chronic UTIs, painful diarrhea, and an overwhelming fatigue. But over time, it has progressed to pelvic floor insufficiency which has led to incontinence and chronic weakness. I was diagnosed with bilateral avascular necrotic hips for which one hip has been replaced and the other is pending. I have chronic sciatica and low back pain. I have had serial bouts of pneumonia due to radiation treatment given for a recurrence in my lung 5 years ago.

It has taken me years and a bit of courage, but I have assembled my own team of experts, leaning on my PCP to help me get the consults I need. He doesn’t know what’s around the corner for me either and often shrugs his shoulders when I ask him what to expect next. I have been in physical therapy for over a year in hopes of regaining some pelvic floor strength to improve my walking endurance, fecal incontinence, and restore some sexual function. I have a GI doctor now to help me with my bowels. He has warned me that bowel obstructions could be in my future and has placed me on a diet to help mitigate the risk and a daily fiber regime to help me become more predictable. I have an orthopedic doctor looking after my necrotic hips. There is a pulmonologist to care for my radiation damaged lungs and thwart off pneumonia with steroids and an antibiotic when a seemingly mild cold begins to settle in my chest. I have a pain management physician that injects my back to keep my sciatic and low back pain at tolerable levels. This last year, I have added a post-traumatic stress disorder (PTSD) counselor to help me cope with it all. After knowing all this, does that alter any thought that I should simply be happy to be alive? I, and the many silenced survivors that I speak for, think not. We all should be able to enjoy the best day we possibly can. Palliative care provides an infrastructure to do just that. It’s not a cure all for what ails the survivor, but it does provide the support needed to minimize or perhaps mitigate both short- and long-term side effects experienced by them.

I think education of both the medical community and the public is vital. Untangling the word hospice from palliative care is at the core of this education. Healthcare facilities could organize palliative care clinics that can provide services for both the in patients and out patients in their communities. The idea would not be to replace primary oncology care, but to become part of the support team for the patients that receive it. Patients need a place with caregivers trained to know what’s around corners; a place to ask vital questions; a place where questions will be asked of them concerning their wellbeing; place where their wellbeing is addressed and supported in a centralized way. Palliative care provides just such a touchstone.

The goal of palliative care is to improve quality of life. I believe that each day should be the best day it possibly can for people diagnosed with cancer, whether it be three days, three months, three years, or three decades patients deserve to feel the best they possibly can. Again, I say palliative care is for the living. May I have some please?

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Palliative Care: May I Have Some Please?

I love patient advocacy. I was diagnosed with stage IV anal cancer almost 9 years ago. I was given a pretty bleak prognosis of 3 years with treatment for palliation. So, when my 3-year “expiration date” came and went in the spring of 2013, I decided my orphan cancer deserved a voice and since I was still on the planet, it might as well be mine. Perhaps it is preordained or simply destiny. No matter, there I was, and still remain, despite recurrence in my lungs that involved both surgery and then further chemo and radiation.

As I connected myself through various organizations, particularly the HPV and Anal Cancer Foundation, I found their peer-to-peer program appealing and fulfilling. I have met and supported many women like myself in very similar circumstances. The familiarity of each road to diagnosis, the struggles with treatment and long-term side effects, and disease advancement made me comfortable and proficient in the role as a mentor, for lack of better a better term.

My training as a registered nurse helped me as I developed long-distance relationships with several women. I call them my “virtual sorority sisters” offering them support day or night, providing insights or just a listening ear. It feels so good to be able to give back and also to really advocate for the lived experience that patients with anal cancer share when working with research organizations or simply raising awareness via radio, television, or social media.

I was about a year in when I experienced my first loss of a sister. I felt shocked and sad, followed by an intense wave of survivor’s guilt. There I was, alive and doing well, and my friend was gone. She succumbed, and I was helpless to stop it. I was not deterred. If anything, I felt angry at the unfairness of it all and it drove me to support my sisters even more fiercely. I put aside my sorrow and guilt and pressed on, gaining more and more sisters along the way.

It wasn’t until the loss of one sister that I had become particularly close to that I took the time to stop and take a breath. It was the day before Thanksgiving in 2016 when my phone rang with the news that my friend had passed away in her sleep just a few hours before. I let myself feel the full burden of the grief and devastation.

I really could feel the weight of her loss on my heart and in my soul. As I cried tears for her that seemed to not want to end I realized I was weeping for all the sisters I had lost over the previous years. Every tear suppressed, and all the guilt pushed aside arose in me. I cried for them all. I was angry on behalf of each of their beautiful lives ended too soon. I mourned for their families whose lives had been altered forever. I grieved my way to acceptance and then to reflection about how meaning can be found.

I’ve learned a few things through my experiences as an advocate and peer supporter that can give valuable insight to caregivers of patients like me. Yes, I am strong, but not as strong as you think. I am driven by the loneliness and fear I felt when I was diagnosed with a rare and stigmatized cancer. I don’t want anybody to ever feel that they are alone or that hope doesn’t exist, or that miracles don’t happen.

I am not even remotely brave. I have courage. There is no storehouse of bravery that exists within me. To me, there is a vast difference between courage and bravery. My courage is what I have to call on when I say yes to taking a new sister under my wing. Bravery is produced when a situation calls for inner strength to endure it. It takes courage to make the choice and bravery to endure it. And finally, patients that are advocates require emotional support from the caregiving community because we experience loss frequently and continue to make ourselves vulnerable to that loss. If you find yourself in the position of caring for an advocate, be cognizant that they could be in a perpetual state of loss over the years of their survivorship and they may need your support to withstand it.

My training as a registered nurse helped me as I developed long-distance relationships with several women who have anal cancer--I call them my “virtual sorority sisters.”

 The Patient Advocate Experience

I will never tire of writing the story of me and my experiences as an 8 year survivor of stage IV anal cancer. A lot of my life these days is consumed with maintaining or improving my well being. I think I have something akin to PTSD only mine is caused by cancer not war. I understand that people are tired of my cancer and perhaps even my essays. I need to just "get over it" for God's sake already. Just. Shut. Up. But, for me, talking about it helps. Writing about it helps more. I need to write. Sometimes, even when I don't want to, if I sit and try I feel a sweet catharsis when I finish the struggle with diction. I don't expect that anyone understands my need to write to feel OK inside. Let me try to explain it here.

Most days I feel safe and secure. Sometimes I am petrified. Even as well as things are going right now; things could change in a second and that cough that won't go away, that pain in my side, that blood on my toilet paper, those could be my cancer coming back to lord over my days, my nights and my life.This musters up a cold sweat that words cannot explain. I don't want to go back there. Writing helps.

Most days I feel care free. Sometimes I am anxious. The cough, the pain, the blood I described above that could appear at anytime cause a hum in the background of my life and across my mind everyday. This creates anxiety occasionally. It makes others uncomfortable when I express it verbally out loud, but it needs to be said. Writing helps.

Most days I am happy. Sometimes I am sad. I have networked the hell out of social media and met many women like me in very similar situations. I witness the joys and the pain they experience as well. Many do not fair as well as I and many have passed away from this life. This stirs up survivors guilt and can create melancholy from time to time. Those around me want me to cheer up. Writing helps.

Most days I am physically able. Some days I am fatigued beyond words. I live in constant pain. I am in no way looking for pity for this. I'm in pain and that's just a fact. I do all I can to minimize it and have no interest in narcotic use. Discomfort is my norm and I can't remember what's it's like to be pain free. Some days it is a forethought to every single thing I do. Believe it or not, writing helps.

So I turn to my blog. A place I can openly and freely express my hope, my joy, and my happiness along with my fear, my anxiety, and my grief. Recovery from cancer can be a struggle that will forever be part of my life and lucky for me writing helps.

A look at how writing is a means of self expression and stress relief for a nurse who is also cancer survivor.

Writing Helps Relieve Stress from Cancer Concerns

When I was diagnosed over six years ago with stage IV anal cancer I loved my job. Very quickly, my work and career took a back seat in my life. But ten months later there I was easing myself back into my job.

Today I work full time and am able to perform all my previous job duty requirements. I am by no means the working girl I once was, but with some adjustments and planning I am able to perform, and even enjoy again, the requirements my demanding career in Cardiac Rhythm Management as a device field representative.

Each survivor’s experience is unique in regard to desire and ability to return to work. Some survivors may have no ability or desire to return to work, while others financially may have no choice. Some employers, like mine, will allow individuals to ease back into work, while others may insist on enforcing disability leave policies.

One thing is for sure, with 1 in 3 people being diagnosed with cancer in their lifetime, it has a lasting impact on the workforce and the survivor’s career.

What has been your experience with returning to work during and after cancer treatment? What would make the transition easier? Do you have advice to share with patients and survivors?

Patients, survivors, nurses, and employers have a lot to share on these topics. Join us for our next #CureConnect tweet chat on Tuesday, August 9, at 9 pm EST to discuss these important topics. Don’t forget to include the #CureConnect hashtag in all of your responses! Read more 

 about the #CureConnect chat and how to participate.

Cancer and Employment: Working It Out

“You have anal cancer.” Six years after hearing those very words the whole diagnosis still sounds surreal to me. I had anal cancer, and as a registered nurse with over 20 years of experience under my belt, this was unbelievable. I had never even heard of anal cancer.

I soon learned that my cancer was defined as being quite rare. In my geographic area it was quite uncommon with only approximately 10 cases diagnosed per year. Needless to say, it was something that most of the healthcare providers treating me had rarely or never dealt with. Being on the other side of the stethoscope was a new and eye-opening experience for me as well, and the learning curve was steep.

I had no idea how isolating being diagnosed with a rare cancer could be. But that pales in comparison to the “solitary confinement” that a stigmatized cancer like anal cancer can carry.

So, your patient has anal cancer. I think there are a few key things that you can do that can make a tremendous difference. These involve treatment education, research opportunities, and connecting to support groups and resources. Don’t wait for your patient to ask, because they probably won’t. I didn’t.

The treatment regimen for anal cancer is brutal, involving simultaneous chemotherapy and pelvic radiation. Understanding the treatment challenges and side effects facing the patient with anal cancer, both short and long term, are important. Knowledge is power, so helping to educate patients and caregivers on what to expect and what the plan of action will be when the side effects occur only serves to benefit all involved.

This goes far beyond the nausea and vomiting that chemotherapy brings. It extends to skin care for radiation burns, bladder and bowel control both before and after treatments have concluded, diet intolerance and nutrition, pain management, and sexual dysfunction. Pelvic floor physical therapy plays a vital role in optimal recovery for patients early after anal cancer treatments have concluded.

We all know that research plays a valuable and critical role for cancer patients. Rare cancers like anal cancer do not have large volumes of research studies available. When faced with caring for less frequently seen cancers, take the opportunity to update yourself on what’s currently available and where it is being offered. Providing reliable information on larger centers that offer research studies for anal cancer patients is beneficial.

Finding local or virtual patient and family support resources was impossible for me in 2010. Things have changed for anal cancer since I first “googled” it and thankfully so, but support on the local level remains scarce. The squeamish nature of the anus alone is enough to silence even the most outgoing individual. Add to that the stigma that anal cancer carries and you have a recipe that compounds the isolation. Providing reliable anal cancer—specific support sources with active peer-to-peer programs can positively impact your patient. Having a safe forum in which to comfortably speak is imperative.

So, your patient has anal cancer… Arm yourself with knowledge and information and then share that openly with the patient and caregivers. Don’t wait for them to ask, because I know for a fact that they probably won’t. I didn’t.

Michele Longabaugh is a wife, mother of three children, registered nurse, and small business owner in the Midwest. In February 2010, she was diagnosed with stage IV anal cancer. She hopes to shatter the stigma and fight the loneliness that accompanies this devastating type of cancer. Follow her on Twitter at @CrazyAssCancer.

) has excellent medical patient/caregiver resources and a peer-to peer-program, and 

I had anal cancer, and as a registered nurse with over 20 years of experience under my belt, this was unbelievable. 

What I Wish My Nurse Knew About Anal Cancer

Michele Longabaugh, RN, survivor of stage IV anal cancer, discusses the potential benefits for nurses to use social media to connect with patients.

Michele Longabaugh on the Benefit of Social Media for Nurses

Michele Longabaugh is a wife, a mother of three children, a registered nurse and a small business owner in the Midwest. In February 2010, she was diagnosed with stage IV anal cancer. She hopes to shatter the stigma and fight the loneliness that accompanies this devastating type of cancer. Follow her on Twitter at @CrazyAssCancer