In this episode, I interviewed Gladys (Renee) Scott. Renee and I discussed her role as caregiver for her husband, Scott and how she managed her grief after he passed away.
Lee: Hi Renee! Welcome to the Colon Cancer Podcast. How are you?
Renee: I’m doing well, how are you?
Lee: I’m great, thank you so much for spending time and agreeing to speak with me today. You’ve got an important topic to share with us, it’s not one that we’ve spent a whole lot of time with. The last time we talked about the whole process of grief was with Tom Zuba, who is the author of “Permission to Mourn: A New Way to do Grief” but you know you’ve been very out there on Facebook and Jeannie Moore was kind enough to connect the two of us and if you wouldn’t mind for our listeners just take us back to your journey and you know life as a caregiver and let’s just start there
Renee: Okay, I met Scott in 2001 and we met on a dating service and when we met we hit it off immediately. We met in April married in July!
Lee: Oh my goodness, wow!
Renee: And so I just know it was in God’s plan because the very next year in 2002 he was diagnosed with stage 1 colon cancer. It was very small at that time and they did a laparoscopic and I remember I always went to his doctors appointments with him and you know they said it was, you know if when removed it it would be okay and then small and things of that nature and so they removed it at that time and of course I used colon cancer lines quite often with Jeannie. I called several times with the 800 number and asked questions and educated myself on how to care for him and what it was. This was 2002 I believe and so we moved on from that, and I believe it reoccured again, I believe around 2005 we never worried about it too much in between. We just had faith that everything was okay and we lived and so it reoccured and this time I believe it was stage 2, I believe or, it was maybe stage 2 something I don’t remember exactly what it was but it did reoccur right at almost exactly the 5 year mark and again this time he had the surgery no chemo yet because according to the recommendations for that particular diagnosis you didn’t have to have chemo at that time you could if you wanted to. And he had complications, I think that was the problem, with the reason it came back the third time is during that particular surgery there were complications– his bladder was punctured and they repaired it in amidst the operation and I believe surgeons sort of wanted to, without saying, to do the chemo but he didn’t really have to and it wasn’t recommended so we, and I have no regrets don’t get me wrong, it was okay and we lived life went on vacations did what we did and he was a minister and minister the word, and it came back again, closer to I think 2010. And it had came back 2-3 times, it always lasted out almost the 5 year mark he had just barely made it and the last time it reoccured was in 2010 and at that point he did have his treatment I remember specifically he did his radiation he rang the bell and he did some chemo peels he did all of that before the surgery but unfortunately when he did go through the surgery the cancer had sort of broken up and it was like inoperable they said because it was, and I don’t know how the doctor terms, but they couldn’t just remove the cancer with removing his bladder and his you know colon and everything because it had spread-ed out and that was 2010. And so they you know they sent him home and they said that, you know, nothing can be done, but we still had hope and that was 2010 and fast forward a little bit we went to a different hospital and we started chemo and he was NED for almost 5 years
Lee: Wow and then it came back 1 more time?
Renee: 1 more time after the 2010, this is the last time when he had gotten sick it was 20… beginning of 2015 well maybe the end of 2014 he started the chemo again, up again, cos he had done it in 2010 and it had worked and he was NED and we go through the 3 month process and everything and he was fine and in 2014 his CEA levels started creeping and even though the scans they still didn’t indicate they
didn’t see anything too much going on but the doctor always sorta suspected that it was some re-occurence but he went through a lot of different things but we always had hope and we always moved forward and I always encouraged him even sometimes, and he did have times, when he was you know scared and I would work to, especially going to the doctor you know going to see the oncologist can be very scary-
Renee: especially after a scan, and sometimes he would you know Scott could be sorta you know uneasy and I would talk to him and make him easy and I’d go to all his appointments that I could and but we still in between we still found time to live for example he had the pump and if you’re on the pump and then you don’t you have it removed and you have like two weeks, you have a break.
Renee: And we’d always commit we won’t think about no chemo or doctors or anything that was our break to just do what we wanted to do we would look forward to our breaks, or his breaks
Lee: we yeah we always–
Renee: Our like our like I was you know
Lee: Our is right
Renee: I’m talking like I was doing the chemo too but it’s not a you know–
Lee: but you were by his side
Renee: by his side
Lee: And my wife always corrects me too because I’m still dealing with the disease myself and anytime I say me she stops me and says “sweetheart it’s both of us, it’s our” yes, I said “yes you’re right” so yeah you’re right, and at what point, Renee, did you realize that, you know, that the end was coming?
Renee: Well it was really at the very very end he went to and well the doctor came in it was in 2015 cos he passed away in July in was more at the beginning maybe May or April somewhere like that and he had to go back to the doctor because he had a complication and they found that something was going on I don’t know the doctor terms that couldn’t be corrected and so the doctor came into the room along with his team of doctors there’s like 8-10 of them surrounding his bed and said that she had done all that they could do with this treatment and so he did a little profound thing he said “You’re taking away my hope?” And he said “No it’s just what we can do” and he said that “Man cannot take away hope you know God is the god of hope and it’s up to, all if humanly possible that’s all that you can do but God can do all things. Basically, I wish I had taped what he said because it was really profound and he more or less said this speech I guess about hope and everything and he prayed for the team.
Lee: The doctor did?
Renee: No Scott prayed-
Lee: Oh Scott prayed I understand
Renee: Scott prayed for the doctor and the team and you know he just said a prayer and prayed for …I don’t remember it but I know that it was a moment, you know
Renee: And we did break down and which I believe this is because Scott was such a praying guy and we were so prayed up over 14 years of going through this that it just we just moved through it and from there we went to rehab cos I still had hope I didn’t stop having hope cos I was saying okay we’ll go through rehab and after, cos he was weak I said we’ll go through rehab and you’ll get strong enough and we’ll have one surgery at a time cos it was two different surgeries cos we’ll have this done and then we’ll have the other thing done and so it would be okay. So we went to rehab and bless his heart he tried and he would walk and I would watch him, he was so thin and I would be so excited, oh he walked with the therapist’s helping him a little bit and what he did at rehab and I would really cheer him on but I could see that he was really getting tired and I remember accepting that maybe, you know, he needed to go to the hospice program and I called a hospice nurse and I talked to her and then we both went to Scott in the rehab to talk to him and when we sat down and she said where she was from she said she was a hospice nurse, and he said “I wanna talk to her alone” and wanted me to leave the room. So I said “I wonder whats all this about” cos he was very weak but he’s you know you’re able to hear him and so the nurse, just he and the nurse talked in the room for about 30-40 minutes and then when the nurse came out he had told her “do I need to know about this” he was trying to protect me it’s like he didn’t want me to know so I when I went back in and I told him “Baby I know whats going on” and he said “You just surprise me so much” and so consequently we went to the hospice and because he had lived the first week I’m thinking well I’m still hoping, I’m thinking he’s not gonna pass away and we can get him back to the other hospital cos he was so thin and we can get him back to another hospital and we can give him this IV food and get him to gain some wait so he can get stronger and have the surgeries he needs, this is all in my mind, and I even got the paperwork talked to a doctor and told him the situation cos im thinking “hospice a week! You’re not gonna pass away.” So you know that was in my mind and I told Scott about it and I said you know I got an idea you know we’ll take you to this hospital and they feed you through the tube and get you, get you gaining weight and strong so you can have your surgery and I said “So what do you think about that?” and then he said this he said, “Whatever the lord say” and whenever he said that thats at the point I knew that this was the end. When he said he just surrendered, whatever the lord said in his whisper
Lee: Because he knew
Renee: He knew, he knew and then all along I was holding onto to hope all the way you know my sisters and my family would ask how he’s doing and everything, about arrangements and I would say, “What arrangements you know he’s gonna fine we’re gonna beat this it’s gonna be good”
Lee: So, let me ask you this Renee and I need to point this out because this was a surprise to me too. So people who are listening that are very involved in the Blue Hope Nation Facebook group they don’t know you as Renee they know you as Gladys
Renee: Gladys yes Gladys
Lee: And when I got the email from Jeannie saying you really should interview Renee for the podcast it took me a minute to put 2 and 2 together. So if people are listening and they’re like “we don’t know who Renee is” you probably know her as Gladys Scott on Facebook but what I wanted to ask you, is you were very open on Facebook about everything that was happening between you and Scott, you put yourself out there, why?
Renee: Well I wanted to be used to encourage others because I know I’ve gone through this journey I know how to take care of a person with colon cancer you know and you know where the colon is so it’s not a clean job okay. And so I know what they’re going through I know from experience and I believe that when God puts experiences in our lives it’s for the purpose of sharing and encouraging others you know. So I encourage everyone every care giver to stand firm and always have hope until you can’t have hope again you know, hope until there’s not hope because the time you’re having hope is a time you’re able to be with your spouse, a loved one and enjoy the life that they have left, that they’re still here. For example, Scott passed away, this is a story, we got married July 28 but for some reason I, we started celebrating it on the 25th every year as soon as it was the 25th we’d do our cards or go out or whatever we did and in the process of looking and making arrangements I found our old program and I said we were actually married July 28th and that’s the day that he passed away and so he was in hospice and said well we’re gonna still celebrate and he was pretty alert I had no idea he was gonna pass on the 28th I was just saying that since we’d been celebrating on the 25th let’s continue to celebrate on the 25th like we’ve always done so what we did was I had gotten a little smart tv cause he loved watching gunsmoke—
Lee: Really, Wow?
Renee: and can get whatever you want on a smart tv you hook it up to youtube and you watch what you want so watched all these , i’ll say we had like 100 episodes of Gunsmoke we go for 1 we might be at 50 we keep going down the line and so I was in the chair and he was watching Gunsmoke and I was watching Gunsmoke and I would look and it was like 6;30 and looked at the time, in the afternoon and I would look back at him and he would be awake watching Gunsmoke and I then would fall asleep I was tired and I’d look back and when I’d wake up after about a few minutes about an hour or so and I;d look back and he’s still awake and I said I was like oh man I fell asleep and we had always liked watching tv together you know when we at home we wouldn’t want to fall asleep we’d wanna enjoy it together and I said “man I missed it I fell asleep this time are you’re awake” cos you know a lot of times he would fall asleep and I would be awake but in a way toward the end before we got ready to just turn out the lights and go to sleep I showed him a picture of our first date and I said, “Where was this taken?” and he whispered “The baseball game” and that was the first date we had at the baseball game and then I said well let’s celebrate our anniversary like we did when we got married and I had a ding dong cake and apple juice, okay I halfed the ding dong cake and gave him half and he took half and he fed me my ding dong and I fed him his and we encircled our arms and gave each other the little apple juice, so that was our little celebration of our anniversary –
Lee: How sweet
Renee: and that’s 2 days later he passed away
Lee: So after he passed you continued to, I guess the best way to say it is, grieve in public you know some people you know choose to do that in silence but you shared it all out there for all to see all of the pain and all that you were going through at the time, was that the same thought process as before he passed was just to help others or did you have another reason?
Renee: Well, it helped me I’m a writer it helped me what I was told by one chaplain and she said it’s best to write. I was so glad, even before he passed, to journal what was going on because I can read back what happened on these days and then I can really reflect how long he was in a state of being uncomfortable and in a state of going, of transitioning and I look at it and he really what he dealt with cancer for several years he didn’t deal with transitioning for more than 4 weeks and I’m real grateful you know his pain was managed I was real grateful about that and I remember the day he passed away I
was by his side and he suddenly just was just alerted just sat up in the bed and looked, looked up and I said “well what is it?” and he was trying to tell me something and at that time you cant talk you know when you’re so close and you don’t know what the people are saying and so I thought, what do you need the pain meds ,what do you need and he couldn’t tell me and I got the nurse to come in and you know you’re in pain just sit back, relax and he just laid back and looked and a few minutes later he passed away it was like he knew God was coming for him and was trying to tell me I think and he didn’t I couldn’t hear him but when I think back thats what it was he may not have say it I heard the words but it was like a goodbye cos when he didn’t want any pain medicine or he said no about that he just sat there and stared back he didn’t seem like he was uncomfortable or anything he just laid back and then I walked the nurse to the door and then when I came back he wasn’t moving and he had passed away.
Lee: So it’s been a year now, Renee, so a year has passed how do you handle when you see things that remind you of him or you hear something whats your response when that happens?
Renee: Well, I’ve always had an attitude of gratitude from the beginning even right after he passed away cos I was so grateful to God that I got 14 years of a good marriage cos I knew what a bad marriage was like cos this was my 2nd marriage I knew what that looked like I never knew what a good marriage was and just to experience a good marriage where you’re married to your friend I was just ever so grateful cos I didn’t need to have that part you know the cancer thing was just the cross we had to bear but we had a great marriage we did everything we needed to do. And so I, how I handled things because I have an attitude of gratitude and I have a peace then you know sometimes I may cry but a lot of times I’ll journal you know I’ll talk to my group you know I’ll talk to y’all on Facebook you know when I’m dealing with something or I’m wanting to share something or I’m feeling something you know I just I listen to my heart and God is saying, you know, you need to post that you need to let them know how you’re feeling, you need to let them know what’s going on and that’s what I do.
Lee: And now you’re giving back by helping out with the Colon Cancer Alliance’s weekly grief chat?
Renee: Yes, yes
Lee: Tell me how you’ve been able to help others, in that group
Renee: Well, well I guess just being there and you know at first, initially I did want to do chat because I don’t like to type you know it’s a lot of typing then you know what I decided to do it and work with Jeannie it wasn’t like I would think it was nice and it was okay you could type and you could read and you could type and you could read and it was a nice conversation and you could connect. And so I’d like to encourage each and everyone of y’all that was like me that don’t want to type you’d be surprised you can still connect with others and you could be helped or you could help someone that’s going through the grief. And that’s my little commercial okay we have grief chat on Wednesdays at 6 and 7 eastern time, for me it’s central time 6 central time so come and the typing is okay and since I’ve been doing it, I don’t want to miss it’s something that I look forward to sharing my strength and to learning what’s going on with them
Lee: So clearly you’re, I could just pick up from speaking with you, that you’re very thankful for those wonderful years you had with Scott. As you look back, how has that whole experience changed you Renee?
Renee: Oh it’s really helped me, he was my teacher okay, he straightened me out with a lot of stuff. And so he helped me be a better wife to him by straightening me out so and so I just appreciate that whole experience. I am so much better going through that life with him than I could even imagine and I just
am so grateful that God allowed me to learn from him and that I was able to listen and learn. You know, we have to be willing to learn you know and swallow our pride and to learn. You know learn simple things like some of the things that he had taught me as a married couple is the 3, the big 3s, and so this is how you keep your marriage going; you never argue in public, okay, and if you’re wrong you say you’re sorry and don’t bring it up again, and you respect each other and I you know I failed a lot of times, okay. You know, I failed, you know I may be a little condescending every now and then you know but he would tell me and I’d listen I’d say okay you’re right I never wanted to be wrong. I didn’t wanna be wrong I wanted to be right I wanted to win all the arguments and but now I see that he taught me that it’s okay to surrender and say okay I was wrong cos he did it so well, he was such a good example. You know I’m on the computer or whatever we do together and then he might make a mistake and say, “Oh I was wrong” you know and sometimes I’d do something and say “Maybe it shouldn’t have been like that” instead of just saying, you know, I was wrong too. So he taught me a lot and I’m grateful
Lee: So the last question I wanted to ask you Renee is if someone is listening and you know is in the middle of grieving what words of encouragement or inspiration would you share?
Renee: okay, number 1 and this is what I had to learn- everybody grieves differently and initially that aggravated me because I wanted to grieve the right way I wanted to read the book and I wanted to say okay I’m here, I’m here, I’m here and then I’ll be through but that’s not how it happens. You have to accept how you’re grieving, have to accept your grief and accept it and embrace it and it’s okay don’t let your grief try to be like someone else’s grief. Don’t let your grief be like my grief because I didn’t shed a lot of tears and I still don’t do a lot of crying but I’ve cried enough okay and so that’s just my way. You may be crying a lot you may have lots of sadness but thats the way, the way that you, everybody, it’s like a body everybody’s body is different everybody responds different to medication and treatment. Everyone of caregivers responds differently to grief so I would say embrace it, and experience it and get through it and know it will pass, and once it passes there’s peace and release on the other side, if you believe that. But if you believe that man I’m not ever gonna get through this, it’s never gonna pass, I’m never gonna get over this, I’m never gonna stop missing them and if that’s in your heart and you’re saying that that’s what it’ll be. You have to believe I will grieve I will move through this and on the other side I will go through it and experience the peace that God has intended for me
Lee: Beautifully said, thank you so much for sharing that. Renee, where can people find you online? I know that you have a wonderful blog, where you write so beautifully and if people wanna follow your journey going forward, where can they find that?
Renee: It’s at renee’s, you can google, r-e-n-e-e’s space, Renee’s space: a journey through grief. And once you google it’s one of the first, it’s the blog posts and course I’m one Facebook, my regular Facebook, my public Facebook is just Gladys Scott and I usually post the same thing, I’ll copy and paste it, on both, the private theres lots of things it’s just personal for colon cancer for my little family you know I don’t share it with the whole of social media but lots of the quotes that God gives me I will share both places and of course if you need some encouragement or you’re going through something similar be sure and message me if you’re on Facebook, and it’s Gladys Scott send me a message and I’ll speak to you
Lee: And they can also, just one more reminder, they can also typically find you in the weekly grief chat, can be found through the colon cancer alliance website it’s ccalliance.org just click on get support and you’ll find the link there for the whole online community, the grief chat specifically is Wednesday evenings at 7pm eastern time. Well, Renee thank you for spending a little bit of time with us and
sharing your words of hope and inspiration. I wish you all the best and thank you for all you’re doing to give back and help others, I’m sure Scott is looking down and is very proud of what he see
Renee: Yes, thank you so much for having me
Lee: Thank you, you have a good evening
Renee: Okay, bye bye