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When you’re done with treatment, when you’re hopefully done with cancer, you don’t want to put yourself under too much pressure. You want to have realistic expectations and look after yourself emotionally, physically and socially and connect with the people you care about. That’s really what we’re talking about today with Alene:
- Knowing your rights as a patient
- Approaching survivorship as a wellness opportunity
- The importance of connecting with other cancer patients and survivors
- Find the right physical activity after cancer
- How to take the recovery process into your hands
- and much, much more!
Navigating the C: A Nurse Charts the Course for Cancer Survivorship Care
Episode 025: How To Stop Cancer From Running Your Life
Joe: Alene, listen, you’ve been an oncology nurse, you’ve seen a lot of folks go through treatment. In your experience, what are the biggest myths and misconceptions that people have around cancer?
Alene: Well, one of the biggest misconceptions on the part of patients, people who go through treatment is that they think that as soon as treatment is done, that they’re going to feel better. They don’t really have any idea of what the recovery process is going to be like. What happens is, they’ll get done with treatment and after a few weeks, they think, “Well, when am I going to start to feel better?” Then this drags on for months. They do start to recover in some ways, but in other ways, there’s still a lot of fatigue, there are a lot of things that need to heal.
The thing is that people don’t understand that when treatment is over, and the cancer is gone, it doesn’t mean that you’re done. I think people focus so hard on getting right of the cancer because that’s what you think. It’s like, get this out of me, I want to be cancer-free. In the process of doing that, it uses a lot of your body’s resources going through treatment and healing from whatever they do in the treatment. Also, a lot of people, especially people who have not had cancer will equate cancer with death.
There’s that burden, that mental burden of fear. Which is a legitimate fear, but it’s not necessarily – more people survive much longer now and it’s not the same as it used to be. I think in general there are misconceptions on the part of people going through cancer and cancer treatment and then the people around them. They have their own set of misconceptions, too.
Joe: Cool. If we look at people around them, what sort of false beliefs, yes, or maybe misconceptions people have around cancer that maybe their caregivers or maybe their friends or family or co-workers? I know that in a way from experience, you feel like you’re almost branded with something. That you’re treated in a different way.
Alene: Yes. I think to back up for a second, I think that there’s this cancer literacy. This idea that knowing enough about cancer to have a working knowledge of it when you have to encounter it. Whether it’s in yourself or it’s someone you know, there’s so much misinformation out there. I think a lot of people think that once the person is done with treatment that they’re going to just bounce right back and go back to doing what they did before. They don’t realise that the person might have a completely different outlook on life.
It changes people in so many ways. I think that people who don’t have cancer but they’re watching someone else go through it, they have no idea of the transformation that’s going on inside the person. Mentally, physically, emotionally. All these other things that have changed. I think that for the people who don’t have cancer, what they really need to do is ask the person who does or did have cancer and not assume anything. Their assumptions are most likely going to be wrong.
Joe: I think this transformation, this metamorphosis that people go through when they get cancer, it probably really starts at the point of the diagnosis. It’s such an incredible shock, you feel helpless, you feel lost. How does someone regain some resemblance of control over their life?
Alene: I think there’s a real tendency for people when they hear, “You have cancer”, when they hear that diagnosis, that they withdraw because they’re so overwhelmed. They don’t even know how to handle it. What they really need is to not hide and to reach out and especially to other people who have been through it. Unfortunately, that’s not something that people are told to do at first. It’s just all overwhelming with all the workups, the medical workup and the beginning treatment and everything that needs to be done in preparation for that. One of the most important things that a person can do is seek out other people who have been through it, or even are going through it at that moment.
There needs to be a way for medical professionals, people on the treatment team to help the patient reach out to those people, so that they don’t feel alone. If you’re going through that, if you have a doctor or a nurse tell you details about it, they’re seeing it from their perspective, but unless they’ve been through it themselves, they can’t possibly really tell you what you’re going to experience. You need to hear it from someone who’s been through it.
Joe: Yes, exactly. It’s like I’ve had the girls at reception recommend me a particular doctor because he’s great, and then I talk to him and he’s completely clueless, but I understand that he’s great from their perspective because he’s a doctor or whatever. From a patient’s perspective, it’s really different. I couldn’t agree with you more about, of course, finding people who are in the same situation. I think this goes not just for cancer, Alene, but I think this goes for everything single situation we’ve got. If you’ve served in the army, if you’ve been to the war, when you get back, you want people who have been through the same thing.
If you’ve been through a breakup, then you’ve got to talk to your friends or your mates or just people who have been through that. I think it’s just so important to connect with the people who went down that road before, who’s experienced what you’ve experienced, maybe through the exact same thing or maybe they’re just one step before. Even alcoholics anonymous, it’s all about going through the same things that’s someone has gone before and connecting with their experience and being able to go, hey, do you know what? I’m not alone in this.
Alene: I couldn’t agree more. The connection. When you used the word, “Connection”, that is so important, and you have to find people who can relate to that experience because doctors and medical professionals, they’re great at treating the cancer, they’re great at helping you get that disease out of your body, but they don’t go through what a patient goes through. Just like you’re saying anybody, it doesn’t matter if it’s cancer or any experience in life, when you have something traumatic happen to you, you need other people who understand and who have been there.
Reaching out to others is the most important thing. I think we could save ourselves so much trauma and so much difficulty if when a person is initially diagnosed with cancer, if part of what they are told by their doctors is, look, we’re going to plan out your treatment, but what you need to do right now is connect with this group or these people, you need to talk to people who have been through it. Maybe they have other patients who’ve been through it who are willing to talk to future patients. There has to be a consideration of the experience of the patient in their everyday life.
Joe: What do you think? What can someone do right now? Let’s say someone is diagnosed and they’ve seen their oncologist or another specialist for the first time and they do want to connect with others, what is the best way of finding those people?
Alene: There are support groups everywhere. If you live in a big city, most likely, you’re going to find some through wherever you’re being treated. If you go to a hospital or you go to a healthcare facility, they will have information. Usually, they have information about support groups. You can also look online, you can look on social media, there are all kinds of different things. You can even just Google on cancer support groups in your locality. You might find one.
There might be many different support groups, but you have to find a good one. You have to find one that resonates with you and that is going to be helpful for you. There are some groups that are less helpful than others, some will sit around, and it becomes complaining, feeling sorry for yourself. Which is okay, there’s a place for that, too, in this whole process, but there needs to be some kind of practical help for the person who’s going through it, so that they can take some position steps and get through it with less difficulty.
Joe: Do you know what, Alene? I’m a big fan of online support groups because really, it’s like they are communities and it’s just people who are really willing to spend their time and share their experience and help others and give advice. What I really love about it, it’s also completely anonymous. You don’t have to filter anything out. You just say whatever comes to your mind and it’s okay and people get it. You know?
Alene: Yes, online support groups are great. Plus, you have so many more people to reach out to. If you’re only dealing with a local area, you’re not going to have as much diversity of experience and the depth and all the different people who are out there who’ve experienced something. You get a lot more opportunities to connect with someone who’s been through what you have been, when you’ve got a support group that reaches out all over the world.
Joe: Yes, for sure. I remember we talked about the initial diagnosis and I remember that it stays with you, you get over it, and you move on, but still, you get the shock, the sense of being scared, like a rabbit in the headlights and you’re in this system, the medical system, and you don’t really understand what’s happening. You don’t understand what all of these people do, how am I supposed to behave? You’ve been in that world, so as an oncology nurse, what sort of things do you think that people – should they be comfortable asking questions and talking to you and talking to their specialist? What sort of advice do you have on that front?
Alene: I would say don’t expect to find everything you need from your medical treatment team. like I said before, they are great at treating the disease until the disease is gone? Once the disease is gone, once the cancer is gone from your body, hopefully, or in remission, you’re still a patient, you’re still part of that medical process. You need help restoring your life as a person again. It’s really important to reach out to the community out there that can help you. There are so many resources out there.
There are just so many people and practitioners and experts outside of the clinical setting who can help you. Like we said, support groups, activity groups, people who teach, people who coach, educators, special interest groups and clubs, even political action groups. There are all kinds of ways to get involved and reach out to others when you have the energy to do that, or as you’re regaining your energy. Again, there’s nothing better than talking to other cancer survivors.
Just remember that even though the medical treatment is necessary, just remember that is not all of it. There’s a lot more to it. There’s a lot more in your everyday life as a person that you need to work with. All your activities and everything you do doesn’t have to revolve around cancer once you get through treatment, it’s really good to find some supportive people who can help you move back into a more comfortable everyday existence.
Joe: Cool. Let’s say I’ve finished treatment and I’m getting the all-clear, which are the words everyone wants to hear. If you had the survivorship step-by-step manual, Alene, what would you suggest what are the things you should be doing as a cancer survivor? Why is it important to get involved in other things?
Alene: I have a program. I’m just going to talk from that. It does follow that trajectory from immediately after treatment, until you start to move through recovery. The most important thing is to not expect too much of yourself because people think they’re going to feel better sooner than they actually do. When they don’t feel good and they set expectations for themselves, then they can be disappointed when they don’t feel good enough to achieve those goals that they set for themselves. You need to set goals that are realistic and not expect too much of yourself, just accept that you’re going to need time to recover. Again, with the support groups or another survivor, you get validation from them. You need validation from other people.
You need to be patient with yourself. Then, as far as what to do, first, you’ll be thinking about your immediate post-treatment needs, yes, you’re going to need that support, you’re going to need to be patient with yourself, realise that your body takes time to recover. Then to start thinking about things that are going to relive fatigue, physical activity, good nutrition, controlling your weight, whether it means regaining weight that you lost as a result of being sick, or sometimes people gain weight as a result of the treatment.
Learning how to take care of yourself and restore your wellbeing, being able to say no and set limits, not taking on too much, paying attention to your emotions and your mental health needs. It’s very important to reach out to a professional if you’re feeling depressed or anxious, which almost everyone goes through depression or anxiety to some degree after cancer treatment. It’s very important to realise that you don’t have to go through that alone. You really should reach out for help because it makes it much smoother. Then learning what you need to learn to advocate for yourself and your follow-up care, to make sure you get the best care possible as you move away from treatment that you get your check-ups.
Also, knowing as much about good health information as possible, so boosting your own health literacy in areas that you didn’t know before. Thinking about, and this is all as you move further away from treatment, then when you’re several months to a year out, then you can start thinking about setting some goals or how you want to grow in the future. Personal growth and moving forward. It’s really important not to set any expectations or too high a goal too soon. You really need to allow yourself to have that time. It can take a year or more. You do have to be patient.
Joe: You touched on dealing with emotions and worries, so what are some of the tools that someone can use right now, just to have a better life after cancer? Even during cancer, to deal with these emotions when they inevitably come up?
Alene: Well, one of the things that I suggest to everyone is doing as much physical activity as possible. It does have a mood stabilising effect. It helps you clear your mind. That’s one thing that you can do. I talked about, again, finding support, finding other people who have been through it, finding mental health professionals, and don’t be afraid to ask for help, don’t feel that you have to go through it alone. Cancer is just not something that anyone should be expected to handle alone. In support groups, a lot of times they’ll have specific information about dealing with those feelings and mental health professionals that you can reach out to.
For example, my program: cancerharbours.com, that has some materials that you can use to deal with some of those emotions and worries. I always say that the best source is going to be someone who has been through it. First, talk to other survivors, see what they did and don’t be afraid to open up and reach out for help. Then, as far as your physical health and wellbeing, like I said, physical activity is very important. If you’re able to walk, that is the single easiest and best way to improve your health and wellbeing.
You can make it interesting. You don’t have to make it exercise, you can just make it an activity that you go out and do. You can walk around in shops or museums or parks or something, just go see things that are stimulating and that will help you either learn something or help relax your mind. Find someone who can do that with you, so that you have a friend. Just be creative about it, to the greatest extent you can. You’re going to get more benefit from the activity that way.
It won’t feel like exercise but you’re actually helping yourself physically, you’re helping your physical fitness, you’re building muscle mass, which you may have lost during treatment. It stabilises your mood, it helps your digestion, it improves your appetite, it improves your overall health and may prevent some other diseases. You just can’t beat it for an activity.
Joe: Fantastic. I guess it sounds to me like what you’re saying is the first number one priority is to really ground yourself after treatment and not really expect too much and set realistic goals? Then connect with other people who have been through the same thing before. The next thing is to really focus on your emotions and make sure that you’re handling that side of things. Maybe seeing a specialist, like a therapist. Then, also, of course, working on your physical side of things and starting where you are. Maybe walking or doing other forms of exercise.
Joe: Like you mentioned, you’ve got your own approach to exercise, right?
Joe: What does that look like?
Alene: My own approach to exercise? I recommend walking to anyone who is able to. Then there are lots of other activities that you can do that are both therapeutic and work both the mind and the body. One of the programs that I developed is called Fierce. It builds on enjoyment of physical activity and it’s in a supportive setting of cancer survivors. What I do with that is, I bring in community practitioners who are experts in different types of therapeutic movement or healing modalities that involve activity. We do yoga, tai-chi, Pilates, Reiki. We have physical therapists and occupational therapists come in. We’ve had people come in and do biofeedback.
We’ve had other activities like boxing. We do so many different things, but this program is a chance for people to experience different ways to move. What works for one person might not work for the next person. You need a chance to explore that. That’s where my fierce concept comes in. You try all of these different things and then hopefully, someone will find something they enjoy.
You’re only going to do it if you enjoy it, it’s really important to find something that you like. If you’re the type of person who does not like exercise or a routine or feel like they have to stick to some kind of strict guidelines, something like this is great because you get a variety and you can try different things. Like I said before, if you can make it fun, go out for a hike or go walk around the downtown of your city. There are different things that you can do so it doesn’t feel like exercise.
Joe: Yes, it sounds great, Alene. Yes, when you get variety, you get to experience different things. Like you say, it gives you a chance to try something and find something you really like.
Alene: Yes, and physical activity is very good cognitively for clearly your mind and it improves blood flow to your entire body, including your brain. It’s just a great form of therapy, really.
Joe: Yes, absolutely. I couldn’t agree with you more. Like, this is probably the best advice my oncologist gave me was during treatment and during recovery to go for a walk every day. No matter how crappy I felt. I did it and it’s helped me so much. I developed this into a habit and I still do it to this day. Every night, I go for a walk and I love it.
Alene: That’s great, yes. That is great advice, yes.
Joe: Alene, I know you have a unique perspective on the healthcare system, you kind of have a holistic view of the system, you’ve experienced it as someone who has been an oncology nurse, but also as an advocate and a health coach. You help people through recovery. You see folks from different ends of the spectrum. What is the best advice you can give to someone who’s going through the system right now?
Alene: I think it’s important to remember that when you’re in the system, they are treating your disease, they are treating cancer. They’re not treating you, the person. No matter what they say, they’re focused on treating the caner and eradicating that. just remember that the part of you, the whole of you, you are a person. You’re not just a patient. You’re going to have to find a way to restore yourself as a person and don’t expect that to come from the clinical side of things, from the medical profession.
Unfortunately, you really are on your own with that. That’s why people like myself and other coaches want to help people because medical treatment doesn’t help address how this whole experience effects people’s everyday lives, and how it extends into their lives beyond the medical treatment of cancer. Just remember that restoring yourself as a person is a whole other part of this experience.
You won’t have a whole lot of time and energy to spend on it when you are going through treatment, but once you’re through treatment, just remember, that part is going to have to come from you and from reaching out to other people and finding your resources. Just don’t expect to find the answers from the medical community.
Joe: Cool, that makes so much sense, Alene. I know you’ve got a book out, which is great, so tell us about that and how can someone also find that book and find out more about you and what you do?
Alene: My book, it’s on Amazon, it’s called: Navigating the C, A Nurse Charts the Course for Cancer Survivorship Care. To find out more about it, go to Amazon, it’s both on Amazon UK and U.S. You should be able to get it anywhere. You can also go to my website, which is: Cancerharbors.com. I also have a Cancer Harbors page on Facebook. Navigating the C, the book, is a look at the healthcare system and how all the different stakeholders in the healthcare system can do a better job of working with people who have cancer and of helping the whole experience be less difficult and traumatic. It’s talking to all the stakeholders in the healthcare system.
Physicians, nurses, patients, caregivers, administrations, politicians, anyone who has any kind of influence on the whole process of going through cancer, cancer treatment, after treatment. Then also people who have never had cancer before. What it does it, it talks about all the different ways we can do a better job around cancer. One of the things in the book that I introduce is what I call a cancer literacy program. Where people who have never had cancer before can learn about cancer.
They have a more realistic idea of what it is and what people go through, so that if at some point in the future, either they are diagnosed or someone they love is diagnosed, they will have an idea of a few things they can do beforehand that they can have in place, it doesn’t take a lot of time or energy, but just to be a little bit more prepared for what they might face. Being a little bit more prepared to interact with the healthcare system. Having a few things in place in your life that would make it easier, like in advance of every being sick, figuring out who would you ask in your life who could help you. Who could you rely on as an advocate to go with you to doctor’s appointments, or to help you get help with things that you need help with?
Who could do the grocery shopping? Who could take care of your dog or whatever it is that you would have to figure out when you’re under the duress of having a new cancer diagnosis? If you can just figure out a few of these things in advance, and it’s not just for cancer either, it’s for anything, any health situation or any unexpected emergency. Just some things that you can do to make the whole process a little bit easier.
Joe: Fantastic. Thanks so much for your time, Alene.
Alene: Thank you, Joe. Thanks for having me.