Recently I had a wonderful opportunity to team up with my supervisor, Dr Joanna Fardell, to give a webinar hosted by the Child Cancer Foundation in New Zealand. My supervisor and I presented on the social outcomes of children and young people with cancer, based on international research as well as some of our own work. I also spoke about what my PhD research will involve. You can watch the webinar online for free at: https://vimeo.com/339499016.
Ten years ago, I was dividing my time between long hospital stays for my cancer treatment and studying at home to keep up on all the work I was missing while I was out of school. I didn’t know if, after cancer, I’d ever have a ‘normal’ life again. But, just ten years later, life has become far better than normal. I feel incredibly lucky to be working towards my PhD over the next 3.5 years and come home every day to a loving husband. Sure, I have chronic back pain from the damage caused by the 40+ spinal taps I had between my first and second cancer experiences, I'm often forgetful and still have days where "chemo brain" plagues me, I have to take daily medication for a chronic illness caused by the treatments I received, and I grapple with uncertainty around whether or not I will be able to have children. But, at the end of the day, I try to remind myself that I'm lucky to be alive. The roulette wheel that is cancer survivorship can spin and land you with any number of challenges and I know it is lucky that all the ones I have are manageable.
What I’ve learned in my research work so far is that survivors of adolescent and young adult cancer have lower rates of educational and vocational attainment than healthy young people, meaning we don't tend to graduate from higher education or stay employed to the same extent as healthy people of our sam age. Many of us struggle to build and maintain healthy relationships. (this was something I had trouble with for a long time, especially in terms of knowing how to and feeling comfortable with developing a romantic relationship). It’s my goal in the next 4 years, and hopefully through the rest of my career, to begin to establish a clearer understanding of why AYA survivors have worse social outcomes than healthy young people. How can healthcare providers help us better manage the physical and psychological impacts of treatment so we aren't at such a disadvantage? Because we shouldn't be at such a disadvantage. We deserve to achieve our pre-cancer potential and live lives that are far better than normal. I can only hope that my next #tenyearchallenge post ten years from now will be filled with change and improvement in this space. Until then, I'm determined to work towards making that change and improvement in any ways I can.
If you are an AYA cancer survivor and you are struggling with school, work, or relationship issues, you're not alone. There are some great resources and support services out there that might be able to help. You can follow any of the links below to learn more, or you could reach out to your treating team, social worker, or a psychologist for further support.
Work, School, and Finances for Young Adults with Cancer - Leukemia and Lyphoma Society: www.lls.org/childhood-blood-cancer/about-childhood-blood-cancer/teens-and-young-adults/work-school-finances
Resources for Teens - Cancer.net: www.cancer.net/navigating-cancer-care/teens/resources-teens
Resources for Young Adults - Cancer.net: www.cancer.net/navigating-cancer-care/young-adults/resources-young-adults
If you are having trouble finding resources that are right for you, feel free to reach out to me! I might be able to suggest alternatives!
This past week, I was fortunate to attend the 3rd Global Adolescent and Young Adult Cancer Congress. The Congress was organised by the 3 biggest AYA cancer groups in the world: CanTeen from Australia, the Teenage Cancer Trust from the UK, and Teen Cancer America, from the US. I had followed the Congress and those 3 organisations for quite a few years, since they all do lots of great support, activism, and research work to improve the cancer care for and quality of life of AYA cancer patients and survivors. I got to present a research poster from my work, which is what brought me to the Congress. However, what I took away from it was much more valuable.
First, it was incredibly encouraging to see the more than 400 attendees come together and share their work, and to hear all of the ways in which they are trying to improve and extend the lives of young people affected by cancer.
Second, I learned that there is an International Charter of Rights for Young People with Cancer. Considering I’ve been reviewing resources and research around AYA cancer and survivorship for years, and now work in psycho-oncology research, I was shocked that I hadn’t seen or heard of this Charter before. More importantly, I figured if my over-involved self hadn’t heard of it, there was no way newly diagnosed AYAs would be able to find out about it.
I’d like to change that. While the Charter as it exists does have limitations, like it doesn’t cover pretty much anything about AYA cancer survivorship, which is a huge problem, I think it does have a lot of valuable information for someone who’s just been diagnosed. I feel like if 13 year old me had heard of this Charter when my relapse happened, some things could have gone much differently, and much better.
So I’ll share it now. It’s close to 10 years old, so as I said, it isn’t perfect, but it can be helpful. Take home message is: know you have rights and use them. I would have taken this whole article in with me to my first appointments and kept it with me during those first few months of treatment when I was inpatient all the time, so I had a better understanding of what I could and should ask for.
In one of the first few weeks inpatient, I told doctors I was feeling dizzy even though my latest red blood cell count seemed high enough that I wouldn’t need a transfusion, so they told me I didn’t need to get a transfusion. I subsequently passed out in the bathroom and could have cracked my head open had my mom not caught me before I hit the floor. After that fainting episode, the rapid response team informed my oncology team that, as a tall person (much larger than the tiny children they typically dealt with), the red blood cell count was actually not quite high enough for someone of my height, and that was likely why I ended up passing out. I could have avoided traumatizing my mother and having to have her call the rapid response team, had someone taken me and my report of dizziness seriously, and had I known I could have demanded to be taken seriously.
Had I known I should have been empowered by my medical team to make decisions after receiving a full and detailed explanation of options and long-term effects, someone may have been able to schedule my consult with the onco-fertility specialist at a time when I wasn’t drugged out on Benedryl and overcome by some of the worst chemo-induced nausea of my treatment. Fortunately my mother was able to make the decisions on my behalf, and so far I think I'll be ok fertility-wise, but I will always hold it against my healthcare team that they didn’t take it more seriously to have this consult and conversation weeks earlier, at a time when I could have coherently been part of it.
I could go on and on. AYA cancer and survivorship care has come a long way, but it still has a long way to go. Medical training is only just beginning to combine training of adolescent and young adult health with specialist training like oncology, so doctors can learn how to communicate with our specific age group before we are affected by any lack of such communication training in actual care interactions. Until more progress is made, know your rights and use them.
The Congress ended with a panel of 5 AYA survivors from 5 different countries, who spoke about the importance of this Charter, but also the need to improve it. I can't thank these AYAs enough for sharing their stories on behalf of all of us patients and survivors. CanTeen, the Teenage Cancer Trust, and Teen Cancer America, have agreed to revisit the Charter as part of their new Global Accord efforts (basically they've teamed up to address important AYA cancer issues globally) and they plan to revise it to include more rights, especially those related to survivorship. Stay tuned and watch this space, because you may see a new version of this document coming out in the next couple of years. I'll be sure to share it as soon as I hear about it.
There’s this idea among a frustratingly high number of healthcare providers (HCPs) who take care of teens and young adults that we're “difficult patients” because we don’t listen to their instructions, we don’t take our medications when we are supposed to, we miss our appointments, etc.
I gave a presentation a few weeks ago to a group of HCPs, sharing my personal experiences as a young person with a chronic illness (since living as a cancer survivor is definitely categorized as a chronic illness these days), and talking about ways I thought HCPs could better support young people with chronic illness. I also talked about the importance of teaching young people self-advocacy skills, since navigating the healthcare system can be really tricky without those skills (if you don’t know what self-advocacy skills are, or want to learn more about them, check out my previous post about them HERE).
One of the first questions I got at the end of the presentation was from a doctor who works with AYAs with chronic illness daily. He asked: “When do you think is the optimal time to start teaching self-advocacy skills?” The question made 2 things clear to me: (1) The fact the doctor even had to ask that meant that he doesn’t know if/when to teach his patients these skills and (2) he had probably never asked his patients if they felt prepared/armed with the knowledge/skills they need to navigate their care. He's a great doctor, and does some amazing work, so this really struck me as interesting. The focused attention of the others in the room indicated they probably had the same issues.
Then I thought, it’s no wonder they think we are “difficult.” If we don’t have the skills we need to be engaged in our care - how to communicate, negotiate, seek information, and solve problems, among many other things - we will get overwhelmed by, or not realize the importance of, the many tasks we have to complete to be “good patients.” It's like asking a dog to fetch when you've never taught it how to.
More importantly, things like showing up to appointments on time, taking medicines when we are supposed to, and listening to HCPs instructions are all affected by whatever else is going on in our lives. If I don’t like how a particular chemo pill makes me feel, and I’m never taught what it actually does to help treat my cancer, it starts to look just like the 30 other pills I have to take and I decide, what the heck, nothing’s going to happen if I skip one or two or 3.
If I get too nervous to go back to the clinic because I’m just not ready to get more chemo, or get my test results, and I don’t really feel comfortable telling that to whatever receptionist answers the phone to manage appointments. So, I don’t call and cancel - I just don’t show up.
So much can affect what we do or don’t do as patients and survivors. I could go on about that for days. And we definitely don’t have all of the knowledge or skills we need to be able to do exactly as our HCPs tell us all of the time.
Here’s my BIGGEST piece of advice to anyone just starting out on the cancer treatment or survivorship roller coaster: before you get too far into things with your care, with any HCP, set the record straight with them.
Going back to that doctor's question after my presentation, about when to begin teaching patients self-advocacy skills, I think it’s really up to us to let our HCPs know if and when we are ready to get involved in our care. They don’t want to overwhelm you at the beginning, so they may hesitate to engage you in your care. But if you’re ready for it from the beginning, that’s when you tell them. Otherwise, give yourself time to get acclimated and then decide if and when you want to talk with them about what you want out of your care.
What I wish I had done at the beginning of my treatment was something to the effect of “I probably don’t have all the knowledge and skills I need to stand up for myself whenever I might need to during this process, or to be fully engaged in my care, and I may often rely on my parents because of that, but that doesn't mean I don't want to be involved. My lack of knowledge and skills may also affect how well I do everything I’m supposed to as a patient. So, I want to just ask that you do what you can to walk me through this all so I can be a part of it and learn what I need to learn: provide me with the knowledge I need to know what my treatments will do so I can recognise why each piece is important and do my best to adhere to it. I also need you to take a little extra time to help me develop some skills I will need to manage this all in the long run.”
You may also be in the middle of everything and just have a particular issue with something going on in your care. For example, I wish that in the process of making some more difficult decisions about my treatment, I had said something when I wasn’t happy with a choice that was being made about my treatment/care: “Dr. ____ , I just don’t feel comfortable with this decision and I’m not familiar with/entirely comfortable with negotiating about this medical kind of stuff, since I don’t have as much knowledge as you do about this, but you’re going to have to help me out here because I need to talk this through more so we can come to some kind of conclusion that I’m more comfortable with.” Sometimes we have to walk them through it. As much as I wish they would teach mind-reading in medical school, as far as I know, they haven’t yet.
No matter what stage of the journey you're in, there will be times when you'll have to just say things really clearly and direct your HCPs as to how they can better help you.
And for any HCPs who might read this, I just ask that you reconsider your “difficult patients” and see whether there may be some things you could do to help them do better. As patients, we don’t get any medical training. As AYA patients, we also haven't had much life experience yet. Without any training or much life experience, we get thrown into all this life-altering decision-making, 24-hour-healthcare management, pharmacology insanity. We have to learn it all on the fly and that’s super stressful, often to the point where it might just be easier to run away from it/ignore it. If you don’t have the time or resources to support a patient who needs more from you, maybe someone else does and you could refer your patient to them for that extra support. If the extra support still isn’t enough, then maybe just start by trying not to use the phrase “difficult patient” at all. There's a fantastic article that I think makes this point in a much more eloquent way, and advocates for a shift in attitude about the label of "difficult patients": "Good" Patients and "Difficult" Patients - Rethinking Our Definitions in the New England Journal of Medicine. My favorite sentence is this: "That we sometimes feel besieged or irritated by these advocates speaks to opportunities for improvement in both medical culture and the health care system." In my opinion, this translates similarly for HCPs caring for AYAs: if you feel frustrated by AYAs who aren't doing what they're supposed to, then maybe there is room for improvement in how their care is being given. If there's nothing you can do to help them overcome whatever you felt was making them "difficult", then let's at least step away from this idea of AYAs being difficult patients. Being a young person with a serious illness is difficult. Most of the time we really don't like it and wish we could just be healthy.
I was recently contacted by an inspiring young researcher who is only in high school but is working on an awesome research project to understand how cancer impacts mental health in adolescents. She said, "I became interested in this topic because I knew somebody close to me who was diagnosed with cancer as a teen, and I became interested with how this age group differs from the other age groups but is often treated the same ways."
She is looking for adolescents who are currently going through treatment, and are 15-19 years old, or who went through treatment at that age, to complete a short survey she has put together. The survey aims to determine how adolescents feel about their treatment, especially in regards to mental health and psychosocial needs. According to her, "The data will be used as part of a larger research project looking into ways to improve treatment for adolescents with cancer, which is a very marginalized group in the cancer community."
You can complete the survey by clicking HERE. The questions you will see are listed below!
If you have any questions, feel free to email me.
For some ideas on how to advocate for yourself and other young people going through cancer treatment and survivorship, check out my new post on Cancer Knowledge Network's website by clicking the link below!
AYAs: Make Your Voice Heard
Chronic pain is something I don't think I have written about before, but it is definitely something I have had to figure out how to deal with. Chronic pain is persistent, long-lasting pain and it can really affect your daily life. In recent years, since beginning to work in the field of psycho-oncology, I have learned more and more about how common chronic pain is in young cancer patients and survivors. Research has show that 20-30% of adult survivors of childhood cancer who are 10 years and 14 years post-diagnosis report pain of some kind of pain (Lu et. al, 2011). Whether it’s because of surgery, neuropathy (a side effect of chemotherapies like Vincristine), or other issues, like back problems (something I deal with because of the number of spinal taps with chemo that I received), you may find chronic pain follows you during and after cancer treatment.
I find it interesting that if chronic pain is something so unavoidable for young people that go through cancer treatment, I just wonder why it isn’t talked about more? I certainly was never warned about it.
Like everything else that I have felt doesn’t get talked about enough, I’m going to try and talk about it here. Being prepared and knowing what you can do to manage pain is so important. There are many things you can try other than just pills to manage pain.
I recently listened to a presentation by a researcher from Stanford who studies pain in young people with cancer. She recommended this interesting video as a starting point to understand what causes us to feel pain and what pain really means:
The video ends with a series of questions to ask your doctor, to find out more about your pain and how to cope with it. It is also important to know that most major hospitals will have psychologists working directly in pediatric or adult oncology that could also help you with coping with pain. Alternatively, your doctor might be able to connect you with a psychologist who specializes in coping with pain at your hospital. If you are interested in seeking out such specialists yourself, good places to look are the websites of major hospitals (particularly ones connected to a big university) since these will be the places where doctors and mental health practitioners, like psychologists or psychiatrists, tend to work more closely together to do pain research. If they are doing pain research, it means they will likely be more aware of the latest and greatest methods available to help you manage pain. You’ll want to look for a place that provides what is called a “multi-disciplinary approach” or involves an "interdisciplinary team," which means they bring together lots of different specialists to give you access to a wide range of potential pain management strategies. You can view the Johns Hopkins Pain Treatment Program or the Blaustein Pain Treatment Center at Johns Hopkins for examples of what types of programs to look for.
Essentially, there are 3 steps to take to begin to work towards coping with chronic pain during or after cancer treatment:
1) Understand what is causing your pain.
I appreciate the end of the “Tame the Beast” video, when the narrator says it is important not to give up hope. Managing pain as a cancer patient or survivor is a lot like managing a diagnosis of cancer. Like cancer, chronic pain is not something you expect to deal with at a young age. To get through both a cancer diagnosis and the onset of chronic pain, you have to stay positive, be persistent, and never give up hope that it will, somehow, all work out. If you have gotten through diagnosis (which you likely have, if pain is an issue you are dealing with), it means you already have the positivity, persistence, and hope you need. You may just have to put all of that energy towards a different purpose, to find ways to manage and cope with any pain that you experience.
Lu, Q., Krull, K. R., Leisenring, W., Owen, J. E., Kawashima, T., Tsao, J. C. I., … Zeltzer, L. K. (2011). Pain in Long-Term Adult Survivors of Childhood Cancers and Their Siblings: A Report from the Childhood Cancer Survivor Study. Pain, 152(11), 2616–2624. http://doi.org/10.1016/j.pain.2011.08.006
In December, I was fortunate to find my dream job and began working as a research assistant with the Behavioural Sciences Unit, proudly supported by the Kids with Cancer Foundation, in the Kids Cancer Centre, at Sydney Children's Hospital. I am honored to be a part of such an incredible group of researchers who are doing outstanding work to address the needs of and challenges faced by children, teen, and young adult cancer patients, survivors, and their families. I was especially honored to have the opportunity to write a blog post for the BSU's website about my personal experiences with cancer. You can find the post, and learn more about the BSU, here.
It’s been awhile since my last post but I’m excited to announce that the delay was because I have officially moved to Sydney, Australia! So, Riding the Cancer Coaster is now coming to you from the land down under! I wanted to take this post to share some resources that I have come across in the past few weeks. Here’s a list of 10 great resources for for AYA cancer patients and survivors (not listed in order of helpfulness/importance or anything like that - just a set of 10 helpful resources):
A big misconception among adolescent and young adult (AYA) cancer patients and survivors is that doctors are authority figures not to be argued with. This is especially an issue for younger AYAs. I know it was a particularly inhibiting problem for me, as it led me to not take action when problems arose and, if any action was taken, it was because my parents stepped up to negotiate with my doctors.
So, I wanted to take this post to talk about the next key pillar of being a self-advocate: negotiation skills. You may be most familiar with negotiation skills related to business and commerce. But, negotiation skills can be used in any setting where you want to get the best outcome for yourself.
I found a great article in the Washington Post that talks about negotiation skills. Author Joyce Russell outlines key components of negotiation, as told to her in interviews with senior executives in her region.
First, she talks about a win-win style of negotiation. This is mostly relevant for business negotiation where it’s helpful for both groups involved to benefit at the end of the negotiation. In our cancer care case, this is less important. But, you could say that an outcome in which your doctor and you are both pleased is a “win-win” and may be beneficial.
The next components discussed by Joyce are the following:
Let’s think about how this would look in an appointment with your oncologist. One of the biggest problems that arose when I went through my relapse treatment was that I had a spinal tap done in the first month of my treatment which led to a 26-day-long spinal headache. Because I had had around 20 spinal taps during my initial treatment as a toddler, I had developed a great deal of scar tissue in the area of the spine where spinal taps are typically done. The physician assistant who did the tap (thankfully I was under anesthesia) took over 13 attempts (pokes with the spinal tap needle) before finally giving up and asking another PA to do it. The other PA moved up another level in my spine and was in instantly. But, the chemo that was then injected proceeded to make the 13 tiny pokes into a single, relatively large hole. And so proceeded the most debilitating experience of my life. Increases in Oxycodone dosing, lying flat for weeks, caffeine tablets...nothing worked to fix it and it got to a point where I stopped eating and was only vomiting from the pain. My vision was becoming blurry and my body growing weak. Only after my mom drove me to the emergency room and demanded my oncologists consult with a pain management specialist about a solution she had found online (called an epidural blood patch) did the oncologists finally reach out of their bubble to get me some help.
I was somewhat guilty in all of this though because I tried to smile and agree with the oncologists’ courses of action during each appointment in which they asked me about how I was doing and how back my headache was. Retrospectively, I wish I had negotiated with them to take action sooner and get creative.
If you find yourself displeased with a course of action taken by your oncologists, or a lack of action taken by them, you have every right to negotiate.
Thinking back to my example:
You are in the driver’s seat when it comes to your health. If you don’t like what is happening with your care, or if there is a lack of action related to an issue that’s important to you, advocate for improvement by negotiating until you receive an outcome acceptable to you.
For questions about this post or about my book/website, feel free to contact me at firstname.lastname@example.org.
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