Hello, Sarah. >> Hi. >> Good to meet you. >> You too. >> My name is Kelly Bugos. I'm a nurse practitioner and I specialize in cancer survivorship care. >> Okay. And my understanding is that Dr Ram Chandran referred you to this clinic following your colon cancer treatment. Is that correct? >> Yes, that's correct. >> So to help shape our discussion today, I wondered if you would tell me what cancer survivorship means to you. >> Good question. [LAUGH] Wow, I don't know. I mean, it's weird to think of myself as a cancer survivor. I think I've just been trying to get used to the idea of being someone who has cancer. I don't think I've been able to start processing the idea of being someone who had cancer yet, if that makes sense. >> Yes, it does. Yes, it does and that in terms of tense. And it turns out actually you've been surviving cancer for quite some time. Really from the day of diagnosis. >> That's true, I guess. >> What's different now is that from diagnosis to treatment you had quite a team taking care of you. And while the team may be shifting a little bit in terms of how often you see them, there's another set of unique services that are here to support you. And Cancer Survivorship Clinic is one of them. >> Okay. >> So really glad you're here. >> Thank you. >> And I'm wondering how you're feeling today. >> Pretty good physically, I guess. Yeah, I mean honestly, I'm a bit overwhelmed. >> It's understandable. You've been going through a lot. >> Yeah, I think, it just feels weird because I just assumed I would have this full sense of relief when the treatment was over and I got that clean bill of health for a while. And I don't feel that that sense of relief. And I think it's hard because I'm still exhausted. I'm still feeling physically and emotionally wonky from the treatment. So I just find myself feeling kind of lost. Well, I hope our discussion today will help you feel like you've got a basic at least routine or perspective that can help you take the next step forward. One of the ways we do that in cancer survivorship is to look at what we call symptoms or things that people are feeling both physically and mentally. And that's why we sent you a form that asked you to rate actually whether you have it and if so, how severe is it? So it looks like you completed it. Thank you. And as I start to look over this, I'm wondering if there's anything else you want to talk about today that was not asked or is not written on this form? Yeah, I feel like it's actually reflected in all of the things that I marked off. But it wasn't listed specifically. Just from when treatment first started, ever since then I have not felt like myself. In fact, it's almost like I'm a photo negative of myself in that I feel like I've been neglectful as a wife and as a mother. And that is something that I want to focus on moving forward, for sure. Okay, so first of all, it's just really good to know that your sense of yourself has shifted during at least during the therapy and early recovery. And that it's very important to you to start to resume what you would consider your normal roles. And it's often our motivation that helps us create change that betters us moving forward or helps us to heal. So what I see here is that you actually have marked quite a few changes. And energy I heard you mention. And certainly noe see that here on your form and then sexual health, sleep, issues with thinking. And then I've already heard you touch on your feelings that there's this not sense of relief, but actually a sense of sadness and or uncertainty and perhaps some fear. >> Yes. >> So why don't we start with going back to what's most important to you, which is resuming your roles with both your son and your husband. Why don't you tell me a little more about about that. >> Yeah, I just want to be able to be there for them more and care for them and more actively love them. >> Okay. >> I feel like I've been spending so much time thinking about myself and taking care of myself and dealing with all of my emotional and physical issues that there's just been so little of myself left for them. And yeah, I also have not exactly been the easiest to deal with and I also realized I'm not as patients as I used to be. >> Well that can change, I expect it will. Your job has been to take care of yourself and now it sounds like you're starting to go through a transition. And is there anything specific that you want to talk about as far as your son goes or your husband? Or should we just focus on the symptoms you have marked here? >> I think that's sort of how I'm feeling about my son. I think with Tim, how do I put this? Okay, I'll just put it bluntly. We don't have sex and never. And that is totally on me and I haven't wanted to in a while. I don't even want to which bothers me. And I worry and we haven't been married for very long. And so I worry that Tim would feel well, I mean, he's shown no signs of this. He's so, so supportive and so amazingly patient about all of this. The sex piece included, but I just worry that he regrets. >> Regrets what? >> Me, marrying me. I just feel like I have a lot to make up for. And even though I'm feeling very eager to just get started on all of this. As I mentioned, I'm still exhausted and I still feel just mentally out of it sometimes. So I really don't know where to start. >> Okay, well, let's start there. because it sounds like it's safe to say that your changes of energy and perhaps sleep quality may be affecting your intimate relationship with Tim. >> Yes. >> Is that right? >> Yes. >> Okay, so Tim has certainly been through a lot as a caregiver himself and how about if and so I'm sure it's affecting him as well. So how about we start with sleep? >> Okay. >> So why don't you tell me a little bit about how well you fall asleep at night, whether you're waking up frequently. If you wake up can you go back to sleep? Tell me a little bit more about that. >> Yeah, so I'm exhausted at night. But when I lie down my mind just starts racing. And that alone just perpetuates the problem, right? I can't sleep. So then I worry about that. And I'm waking up in the middle of the night to go to the bathroom. So it's not a very restful night and then the next day I'm not rested. So I'm irritable and being short with Tim and Jesse which makes me feel bad about that. And then when I lay down I start worrying about that and the mind starts racing and it's just a big messy cycle. >> Okay, so just with some very practical tips. I'm hearing that mind racing seems to be an issue. So the first and a very simple thing to do is actually to have a pad of paper and pen at the bedside. And to actually write down all those thoughts as they're racing through and literally tell yourself they'll be waiting for you in the morning. And you just try to let go of them. Then I'm also hearing that you're getting up to use the bathroom. >> Yes. >> When you go, are you urinating or are you passing a stool? Well both, but it's the stool that's leaving me with a restless night. >> Okay, how often is that happening? Several times and Dr Ram Chandran said that this could happen. >> Okay. >> But it happened so fast that it makes it hard to rest. >> It must be difficult to rest that way. Does it happen to you during the day? >> Somewhat, but I'll often take Imodium or something during the day if I'm leaving the house just as a preventative measures. >> Have you tried it at night? >> No. >> So that's one strategy you could try. >> Okay. >> And see how how well it works and for how long. >> Okay. >> So that's the kind of step one for the question of the digestion. Okay. >> Then there's some other practical things that you can do and it has to do with when you stop eating and drinking in the evening and the time you go to sleep. >> Okay. >> So what time do you usually have dinner? >> Usually about 6:00 or 7:00 depending on when Tim gets home? >> Okay, and when do you usually go to bed? >> About 9:00, yeah. >> About 9:00. So usually, what can work well is if people stop eating about four hours before they go to sleep. >> Okay. >> So you have to put that in the context of your life and your family's schedule. But the concept is to allow your body to digest the food that you've eaten enough that if there needs to be a passage that there's time for that to happen before you go to sleep. And with fluids, it's actually similar, but it's about two hours from the time you finish drinking something to the time that you let it out in urine. >> Okay. >> So with that shift, do you think there's any room in changing the family evening routine. >> Possibly, yeah, we could play around with that. >> Okay. >> Yeah. >> When does your son go to bed? >> He usually goes to bed about 8:00. >> Or so, so it sounds like there's some down time or some potentially quiet time that goes on between when he goes to sleep and when yeah, you attempt to go to sleep. >> Yeah. >> [LAUGH] What do you do during that time? My bedtime? >> What do you do during that time between 8:00 and 9:00? >> Clean up [LAUGH] very slowly by that point in the day, yeah. So yeah, usually just sort of putting the day to bed. And then once I get in bed, I'll flip through the channels a bit till I'm good and tired. And then as soon as I turn off the TV my brain turns on. >> So your brain becomes active again. >> Yeah. >> So some of the strategies for being able to move into a restful sleep is actually to power down. So meaning less screen time and more me time. >> Okay. >> And in your case, it could become s time. >> Yeah. >> So where it's picking some activities that are don't take much energy, but that you find restorative, that you find relaxing. And often that's a time especially if the children are in bed. If your son's in bed, that's often a time where couples can have a little bit of intimacy. I heard what you said that energy's pretty low at the end of the day and that's typical. There's many steps to intimacy. And sometimes just having that scheduled time where you can shut the door and you know it's just you and Tim to just appreciate each other. And even if it's only for a few minutes, it's just being in each other's presence. It's an opportunity for you to appreciate him. And with time, the physical intimacy can start. So much of healing after cancer therapy is about routine. It's about being able to fit in what's important to you in the day. And being able to find ways to let go of the other jobs or tasks that may not be valuable to you right now. And I have some tips that I will provide for you in your folder that outline that more clearly and they're very practical. You may find them helpful. >> Okay, thank you. >> You're welcome. So as far as sleep goes, let's just recap. Is that it sounds like there's a couple of factors some is your thoughts. Some is basic physical elimination. And some of it is just having a transition time from being very active to being very restful. >> Yeah. >> So I will put that in your plan of care so that you have that to review and to start. And just know that it's a stepwise process. >> Okay.
