Palliative Care...Can I Have Some Please?

I am a nine 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 that 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. They are always mentioned in the same context and in the same breath. Say it with me; “Palliative Care and Hospice”. It’s been said together so long that people believe it is 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.

Defined on Wikipedia: “Palliative care is an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness. The goal is to improve quality of life for both the person and their family. 

It goes on to further describe it and clearly define it as follows: “Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists and other health professionals who work together with the primary care physician and referred specialists and other hospital or hospice staff to provide additional support. It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care or along with curative treatment. Although it is an important part of end-of-life care, it is not limited to that stage. Palliative care can be provided across multiple settings including in hospitals, at home, as part of community palliative care programs, and in skilled nursing facilities. Interdisciplinary palliative care teams work with people and their families to clarify goals of care and provide symptom management, psycho-social, and spiritual support.”

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 that requires a paradigm shift is ever easy. 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. It shouldn’t surprise you though that 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 have 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 to watch for 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 an huge advantage. I am here to tell you 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 it 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 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 five 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 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. 

So what can be done? I think a better question is; what should be done? First 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. There is actually headway being made by the government passing palliative care legislation in order to provide funding for this. 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 care givers 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. A place were 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?

 

Carol threw a punch at your cancer.
Carol sent you a prayer.
5 people sent you a hug.
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I want some of that too!
Michele, Thomas like this comment
Amen! Yes,yes,a million times yes...may I have some too please?! Very touching and extremely relatable Michele, thank you for sharing. ❤️
3 people like this comment
Wow, Michele! Several things stand out here - first of all, you have been through so much, and secondly, you are a wonderful writer. ( but we all knew that already - thank you!) It’s unfortunate that you’ve had to experience so much adversity, but it couldn’t have happened to a better person to do research and bring it all together into a proposal that is welcomed by so many. And thirdly, I’m noticing that as the years go by, while some of my problems have improved, others are noticeably deteriorating, specifically my hip strength and flexibility and my energy level. And like you, I find most people, friends and physicians included, have an attitude that it’s a small price to pay for being alive. But why shouldn’t we want more? Thanks again for the time and thought you have put into this, and I hope your vision comes to fruition some day!
5 people like this comment
That you for the kind words!
Cheryl likes this comment
I love this post. It's always been blurry for many people as to the difference between the two. I totally agree that palliative care needs to be a huge part of the journey. Very well conveyed, Michele! Love ya!
3 people like this comment
WOW. Can only hope that your excellent piece gets wide distribution...let's give it some legs!

I would say that my own experience indicates that post-treatment care is very random, and even with a good and caring oncologist not much is offered as he or she is too busy with the new patients undergoing treatment.

Hope you can use this link...
https://www.cancertodaymag.org/Pages/Fall2018/Moving-Ahead.aspx
4 people like this comment
I want to share this as it’s so well written! I assume you mean this for people that are not in remission ? No way is big pharma going to pay for my 8 years cured palliative care! I agree that those in the wait and see cancer phase with side effects desperately need and deserve multidisciplinary support. Wonderful post !
4 people like this comment
This is for any patient in any stage of treatment. Active or NED or remission. Side effects treatment whenever they are encountered should be addressed for anybody!
4 people like this comment
HEY YOU!!! Where have you been 😘?
What a great and thought-provoking post, Michele. As Thomas travelled through his cancer journey, his oncologist vet, his GP vet and I had his quality of life at the foremost of our thoughts and actions. Between us we covered everything we could think of - lack of appetite, tummy upsets, the extra stress his body had to cope with from being tripawd, his state of mind - and we introduced measures to help him cope before any negative effect arose (as much as we could). I made a comment to his oncology vet once that it was a pity human patients often didn't have the care and forethought vets/caregivers bestowed on our animals. Your post hits the nail on the head. Hugs :*)
3 people like this comment
We’ve always treated pets so well since they have no voice, we give them ours. I feel like I am giving a voice to those that may not even know they have lost it....
Thomas likes this comment
Hugs!!
Thomas, Michele like this comment
Thank you for taking the time to post such an important message for the world. You are a wonderful writer and I couldn't agree with you more. We have to end up being our own champion and coordinator of care.
3 people like this comment
Michele, you are very right with this post. During Roger's first hospitalization he was also assigned a palliative care physician. I remember thinking, is't it too soon to assume he was going to die. She was very helpful and explained what she could ad to his care. Of course this was almost 2 years ago and since then he has had no one address palliative care.


Many patients have an areay of complications that it seems could be prevented or relieved much earlier. I'm too overwhelmed at this moment to try to improve the system but would be so supportive if this could become a movement. Please, keep up your momentum.
Michele likes this comment
Hugs to you and all you have gone through. Know that I am fighting on any front I can to get care for ALL.
Deborah, Carol like this comment
Michele, just amazing to me to read how much you have been through, yet kind enough to want to share with us how we could receive better care. Thank you.


I've been a Hospice RN for 20 years, 3 different Hospices, and if other Hospices operate the same, they are one of the door openings to Palliative Care. I would suggest calling a Hospice in ones area and asking to be connected to Palliative care. Since they aren't able to bill insurance companies for much, their services I've found are quite limited, but at least it is an added service. Hoping this helps someone.

You would need to be in treatment to have their services, however, wouldn't hurt to call them to see what their parameters are, as they are all different.
Carol, Michele like this comment
Yes! I have been so frustrated by the lack of support following the NED diagnosis. I feel like we are on the cancer conveyor belt and if we are fortunate to survive and get off the belt, we are left wandering, alone, wondering what fresh hell our bodies will surprise us with. I boycotted doctors for a year and finally did all of my preventative care starting in October and finally finished in January with a bone density scan which determined that i have Osteopenia. I asked if that was a result of the pelvic radiation and she said it was just an age thing. I find that hard to believe since there is no family history of osteoporosis and I have always had a healthy diet high in calcium and I don't drink or smoke. Perhaps it is an "age thing" but I feel like I was brushed off. My hips have been in pain since I finished my treatment and sometimes they just "give out" on me and I have fallen twice because my hip just gave out. Is this norma? My red and white blood cell counts are not any better than when I finished treatment. One in fact is a bit lower. Is this normal? Should I be worried about this? The doctor (GP) hasn't even bothered to go over the blood work with me and I had to call three times before they even sent it to me. I called my oncologist to discuss it and I never heard back. I understand that they are super busy and i will follow up but I am no longer their priority since I am "cured". I have had issues with severe vaginal dryness and I feel like I get a "oh well" from my GYN. It took overhearing a conversation between a sales rep and a nurse in the waiting room of my doctor's office to find a non-hormonal treatment that seems to be making a difference. And thank God for the internet. I know doctors get put out when we research but without that, we would be flying totally blind. I agree that there needs to be more support for people post cancer. Our bodies have been through a tremendous battle and it has done serious damage. There needs to be help and support to navigate the new, strange, damaged bodies we live in. I have had my moments when I sit and cry wishing for my old body back - long before cancer and chemo and radiation and hysterectomy. It all sucks. I am happy to be alive however living with some of these things does make you want to die sometimes. I am a 52 year old woman and when I have "accidents" it is humiliating, infuriating and embarrassing. When I sit on the floor to work on a project (art, furniture refinishing) and I can barely get up, that's depressing. I can fully understand my 78 year old mother's fear of getting on the floor and not being able to get back up. Is this normal? Sometimes I just want to scream! Thank you for your post. I don't feel like I am going crazy when I learn that many other people are feeling the same thing and have the same frustrations. And when I comment about these things to someone if one more person tells me I am lucky to be alive, I might punch them. No shit, I get that but living in the aftermath is not a walk in the park!! Whew....I guess I needed to get that off my chest. Thank you again. I always enjoy your posts.
5 people like this comment
Beautifully said...cogent and we'll written. I was baffled after initial meetings with the palliative care team at how infrequently we saw them. Hopefully your ideas are read by some of those involved in patient care who need to read this. Thanks for advocating a sound approach for focusing on quality of life.
Cheryl, Michele like this comment
Michelle,
For me, this is the best piece you have ever written!!
I have been fighting many of the side effects that you cite; especially, from the waist down (severe, intermittent weakness of the lower extremities, is on my list as well. My legs collapse sometimes...though not as often as they used to. )
Fortunately, in the past year, I have been gifted with a GI doc who TRULY cares and has worked hard, doing different tests and treatments, to help me with my gut issues. My gut rules my life. I have an US coming up next week (consult first, I assume), to see if they can fix issues caused by anal strictures (from surgeries and frim RAD. I feel so blessed to have this doc!
I, too, am a nurse, with >20 years inpatient care. Our knowledge of what CAN GO WRONG can be a curse. On the flip side, that knowledge , also, gives us power--to help not only ourselves, but others as well.
Thank you for this great article, Michele!! Hugs!!
Carol P (who hardly writes anymore, but thinks and prays for, you all, daily.)💞🙏👍
3 people like this comment
👏👏👏👏👏👏👏👏👏👏 Sorry I don’t know the emojis for a standing ovation. Do friends ‘over the pond’ have access to BBC podcasts? There is a brilliant series ‘You me and the big c: putting the can in cancer’, they’ve recently broadcast an episode on palliative care, I’ve not listened to it all yet but if you’ve access the whole series is worth a listen.

Thank you as always Michele for being such a brilliant advocate and wordsmith, you articulate the thoughts and situations of so many of us, your beautifully written piece needs wider readership. Jill xxx
Michele likes this comment
i feel exactly the same about everything in this post. I’m almost 8 years out from my first bout of cancer, going through my second, and I feel like once they can’t seem to find anything, you’re thrown to side like there’s nothing wrong left with you when that’s not the case. I’m going to go hunt for a gi doctor, since I’m dealing with similar problems as you.
Michele, Cheryl like this comment
Good luck! I wish you all good things and physicians that listen.
Cheryl likes this comment
I'm sorry you have these residuals, you've paid more than enough dues with this disease. Agreed 'Chelle, about Palliative and Hospice being two totally separate forms of assistance. I've understood palliative to be assistance with "living"; whereas, hospice is assistance with dying. I used to want to do everything myself, but now I feel free to delegate if I need to. I have two local cousins who have always been close to Mother and have offered to take her places. I only call them when there's a conflict of appointments and they help out with rides to the hairdresser's with her, etc. So being Joe and I are not in great health (but not bad), I guess that could be called palliative?
Michele likes this comment
Amen to that. Thanks for the education. I wasn't aware of all the things that palliative care can do but we all deserve this type of care.
Michele likes this comment
Exactly!
I've been wondering how the hip replacement is going. It sounds like good enough for you to consider the second.
I think we aren't going to get after care from the medical group. I am very dependent on Cancerlifeline.org classes of which they have plenty in my area, and helps to be among peers. The classes seem to take the place of lack of medical care, and focus on self care (because that is all there is, as far as I can tell)
I hope it helps you to vent, and we always enjoy hearing from you!
Hugs
Michele likes this comment
Michele, you said it!! This should be required reading for all health professionals. I completely get what you're talking about, and I agree it only registers once you as a patient have experienced enough botched visits and missed referral opportunities. I'm sorry for all you've had to go through, and also thankful for your strength to advocate for yourself and others. xx
Michele likes this comment
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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