Nicole Scott Is A Kidney Cancer Patient Caregiver | Partial Nephrectomy | Caregiver Burnout | Hernia

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Nicole Scott and her husband, Keith, worked at the same Ohio hospital.  When Keith noticed abdominal pain in his left side, he thought it was muscle-related because of the physical nature of his job.  The pain radiated to his groin, then what had been random occurrences of the pain became more frequent.

Nicole urged Keith to seek urgent care.  An emergency room doctor called for a CT scan, thinking Keith had at worst, a hernia.  However, the CT scan revealed a mass on Keith’s kidney.  An MRI and partial nephrectomy resulted in a diagnosis of papillary renal cell carcinoma, a form of kidney.

Nicole and Keith were shocked by this diagnosis, but after she got over the shock, Nicole assumed the role of Keith’s caregiver.

She said without question, the toughest part of her caregiver experience was the emotional piece.  At first, there was a tremendous amount of fear and depression, as she thought Keith might not survive, but all the while she told herself she was caring for the love of her life, had to put up a positive front and be a source of encouragement for her husband.

Nicole said there was some at-home care involved, but much of her duties consisted of making sure that Keith made it to all of his doctor visits, most notably the successful surgical procedure and post-treatment care.

Caregiving can be a round-the-clock challenge, and Nicole said she came close to suffering from caregiver burnout, but she always did what needed to be done, at all times

realizing hers was a high-stakes task.

By way of advice, Nicole Scott says to anyone suddenly finding themselves in the role of caregiver to take a deep breath and never lose hope.  She says a caregiver needs to take of themselves.  She says it is “not selfish” to ask a friend to pitch in or to make time for some ‘me time,’ as that will make a caregiver a better caregiver.

Additional Resources:

The Kidney Cancer Association: https://www.kidneycancer.org

TRANSCRIPT

Bruce Morton: This is the @CancerInterviews podcast.  Thanks for joining us.  I’m your host, Bruce Morton.  The majority of our guests are cancer survivors, and we have learned just how daunting their journeys can be.  But there is also a formidable set of challenges for those who spearhead the care for those diagnosed.  Our guest on this episode was the primary caregiver for her husband, who was diagnosed with kidney cancer.  She is Nicole Scott of Circleville, Ohio, and now’s the time to hear to hear her story.  So, Nicole, welcome to Cancer Interviews.

Nicole Scott: Thank you, I appreciate it.

BM: Before we hear your story, Nicole, we would like to learn a bit about you.  If you would, tell us a bit about where you are from, what you have done for work and what you do for fun.

NS: I am from Circleville, Ohio.  We’re just south of Columbus.  It’s a small town.  For a living, I work for Ohio Health as an office specialist.  Before that, I was a stay-at-home mom.  We have a son who is 22, married and I have a grandson.  For my free time, I like to read.  I do volunteer work, go to church and spend time with the family.

BM: As for your husband, Keith, when did you two start to notice something abnormal with his health?

NS: He was diagnosed in 2023, but a couple years before that, he had side pain that would radiate to the groin area.  His job is very physical, so he thought it was muscular because it would come and go, you couldn’t find a pattern to it.  Probably about April of 2023, it became more persistent.  I had a hard time talking Keith into going to the doctor because he also works for the hospital, he is very well known there and seeing a doctor was embarrassing to him; but I talked him into scheduling an appointment.  It was a Friday.  The side pain was the only symptom he had was the side pain that radiated into the groin.

BM: What is the exact name of his diagnosis, and what led up to it?

NS: He is Stage I Papillary Renal Cell Carcinoma, Grade II.  What led to the diagnosis was the persistence of the pain and it was becoming closer between his side and his groin.  It turned from occasional to every single day and became debilitating.  I came home on the Wednesday before the Friday appointment and I noticed he had a difficult time just bending over to pick something up.  He was wincing.  I told him I cannot go to bed knowing he was in that much pain.  He is not a complainer about pain, but I talked him into going into the emergency room.  The ER physician told Keith he might have a hernia, and called for a CT scan, thinking Keith would soon be discharged.  The doctor did the CT scan and it seemed like time stopped.  Our wait for results took really long and we were starting to get annoyed.  Then the doctor came in and he said Keith had a renal mass that they were pretty sure is kidney cancer, and that started our journey.

BM: We’re confident you’ll be able to learn some tips and tools to help you through your caregiving journey, but first we would like to invite you to please give us a like, leave a comment or review below and share this story with your friends.  Kindly click on the Subscribe button below and click on the bell icon, so you’ll be notified the next time we release a cancer interview.  And we want to remind you that on Cancer Interviews, we do not dispense medical advice.  If you seek medical advice, please contact a license health care professional.

At this point, Keith had been diagnosed, and once that happened, what did you find yourself doing?

NS: Initially, complete and absolute devastation.  A diagnosis was the last thing we would ever have expected.  Usually, I am the question asked, but I couldn’t say a single word.  I found myself trying to gather myself really quickly just to get us out of the hospital. We knew everybody there and as soon as we got to the car, I just started sobbing.  Keith was very quiet.  He didn’t really say anything.  He just kept looking over at me, and he helped me walk out to the car.  Then once we got to the car, I started sobbing like I had cried before.  Then I started calling my family.

BM: The whole notion of caregiving is a skill.  This hit you suddenly and it’s not like you had a manual to consult.  With no experience, how did you take on this gigantic task?

NS: That type of caregiving was very difficult because just like Keith, I was in a state of shock and devastated myself.  To see him receive this news was very difficult.  I will tell you that after about three days of crying, I acknowledged this was a terrible situation I cannot control, but I can control how I respond to it and what I do to help him get through it.  That started a campaign of me just trying to get the word out and doing a lot of stuff to get awareness out that Keith had this and for people to start praying for him.

BM: Two-part question, Nicole.  To some degree you have answered this because you have addressed your initial reaction to Keith’s diagnosis, but once that awful news settled in, from an emotional perspective, how tough was it being a caregiver?

NS: It’s very difficult emotionally. There’s depression, there’s fear.  The fear is terrible, with the what-ifs. We knew nothing about kidney cancer when he was first diagnosed, so my mind started to immediately think he was going to pass away.  It was very difficult because I am also trying to encourage this person that you love and you don’t want them to feel hopeless or to give up, and that was really a driving force for me to change how I was dealing with it.

BM: The second part of this question is more physical in nature.  We know from interviewing caregivers in the past that in some instances, they have to provide some manner of health care.  To what degree did you as a caregiver become a de facto nurse?

NS: Absolutely, especially after he had his partial nephrectomy, I helped getting him to his appointments.  He still continued to work full time, so he had to get MRIs done, a lot of pre-admission testing done, all those things, so I really helped him to coordinate that, and then after his surgery, I had to do a lot of care for him.

BM: And out of all that, the emotional, the physical, what was the toughest part of your caregiver experience?

NS: For me, the emotional.  I am a doer, so kicking into action is just very natural for me.  I come from a long line of people in the medical field, so that came very naturally to me.  The emotional aspect, I didn’t realize it would be so difficult and honestly, so long-lasting to have to work through. 

BM: Now, I am going to trot out a term I am sure you didn’t know about when Keith was diagnosed, but I am sure you know about now, and that is caregiver burnout.  Did you come close to suffering from caregiver burnout or did things get so bad that burnout really asserted itself?

NS: I can’t say that I went into caregiver burnout other than at times, pure exhaustion, which I guess we could call caregiver burnout.  When that happens, it is very difficult because you are needed, and I always try to focus on who am I caring for.  I remember I am doing this for the love of my life.  He is not a number, he is not a statistic, he is not another test result, and he is worth all of this.  It changed my focus to make me realize why I am doing this.  It really helps me through those difficult times of caregiving. 

BM: Keith has achieved survivorship and to get to that stage, both of you had to realize that he was turning a corner, that he was getting the upper hand on cancer.  For both of you, how exciting was that?

NS: It was so exciting.  I actually have a video that I took of him walking out of the hospital.  After the partial nephrectomy that was supposed to be just an overnight stay and wound up being almost a week due to complications and watch him walk out that door and give me a smile and give me a thumbs up, was really the best feeling in the world. 

BM: I suspect that you had support from friends and family, but also had support from a national organization, the Kidney Cancer Association.  If you would, tell us KCA did for you and what it can do for others.

NS: I am so proud of the fact that I partner with the Kidney Cancer Association.  Shortly after Keith went through his cancer battle, we started our own charity.  When we started it, I called the Kidney Cancer Association and asked them for pamphlets and information that I could get out to spread awareness in our area.  They immediately gave me everything I needed, and more.  They educated me and they have supported my awareness campaign in our community to get awareness out.  Their website is absolutely amazing.  There are so many patient and caregiver tools that are on the website.  You can also call.  There are patient navigators that can help you find a provider in your area that meets their standards.  I work for them doing fundraising and advocacy, so I work on their council, so we are kind of that middle person between patients and caregivers and the Kidney Cancer Association because they really do care about the patients’ needs and the caregiver needs are, and they want to supply that.  The website address is https://www.kidneycancer.org 

BM: Our guest is Nicole Scott of Circleville, Ohio.  She was and is the caregiver for her husband, Keith, who survived a diagnosis of kidney cancer.  We are going to wrap up right about now, but we want to ask you a very important question.  There are people watching and listening who suddenly find themselves in the role of caregiver, the same way you suddenly found yourself in that position.  By way of advice, knowing what you know, what would you say to them?

NS: My advice would be that when you hear those words, don’t give up hope, don’t think it is hopeless.  It does not have to be a death sentence.  There is so much out there, the treatments are amazing, we are always getting new treatments.  It is very easy to focus, and I just want to encourage everyone that it is not hopeless.  They have options, and also as a caregiver, just to keep focused on the person and the task at hand.  When you get lost and feel exhausted and there are test results, that’s really when caregiver fatigue comes in and discouragement, and just remember you are doing this for a good reason for somebody you love.  Also, remember to take care of yourself.  You can’t care of someone else if you are not taking care of yourself.  It is not selfish to have a friend to help you work through it.  It is not selfish for you to need to go to a doctor’s appointment or to go out for a lunch date.  Those are not selfish things,  They are actually gonna help you to become a better caregiver. 

BM: Outstanding.  Nicole Scott, Circleville, Ohio, thank you so much for a story that is going to help anyone finding themself in the position of caregiver.  So, Nicole, thanks so much for being with us on Cancer Interviews.

NS: Thank you. Thank you for having me.

BM: And that will conclude this episode of Cancer Interviews.  We want to remind as we always do when we wrap up, that if you or a loved one are on a cancer journey, you are not alone.  There are people like Nicole Scott, organizations like the Kidney Cancer Association that can provide a great deal of help.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group:

The Kidney Cancer Association    https://www.kidneycancer.org

SHOW NOTES

TITLE: Nicole Scott, Kidney Cancer Patient Caregiver – Circleville, Ohio, USA

Nicole Scott and her husband, Keith, thought left-side abdominal pain he felt was due to his work, which was physically demanding.  However, the pain worsened, radiated to his groin and became more frequent.  A visit to an emergency room prompted a CT scan and MRI revealed a mass in his kidney that led to a diagnosis of kidney cancer, after a partial nephrectomy.  After getting over the shock of this horrible news, Nicole became Keith’s caregiver.  This entailed emotional support as well as managing his many appointments, including surgery and a long line of post-treatment visits.  As difficult as caregiving was, Nicole maintained her focus by remembering at all times that she was caring for the love of her life.  Keith achieved survivorship, but Nicole that because a cancer journey never ends, neither does her work as her husband’s caregiver.

Additional Resources:

The Kidney Cancer Association: https://www.kidneycancer.org

Time Stamps:

05:13 Nicole’s reaction to learning her husband had cancer.

06:31 Dealing with caregiving, something with which she had no experience.

07:50 Describes the emotional challenges that come with caregiving.

08:54 Asked if any of her duties resembled nursing.

09:28 Nicole shares the toughest part of her caregiving journey.

10:19 Asked if she suffered from caregiver burnout.

11:25 Reaction to learning Keith was progressing toward survivorship.

14:39 Advice to new caregivers.

KEYWORDS (tags):

kidney cancer

ct scan

partial nephrectomy

nicole scott

pappilary renal cell carcinoma

hernia

caregiver burnout

bruce morton

caregiver fatigue

Nicole and Keith