- Princess Margaret Cancer Centre in Toronto, Canada has put together an fantastic, 14-episode YouTube video series for AYA cancer patients and survivors, called The C Word: Young Adult Cancer Series. You can find the video series HERE. Personally, I loved this video series because I think they are one of the first AYA cancer video resources that do not involve solely story-telling, but rather share the responses of current AYA patients and survivors to really important questions relating to the AYA cancer experience. The answers of the AYAs in the videos provide such informative perspectives too.https://www.youtube.com/playlist?list=PLaLgrtXadEF9Ue-PCSBuOkcsaj5Sp3Vzo
- Memorial Sloan Kettering Cancer Center’s (MSKCC) resource page on eating well during and after cancer treatment is really informative. I was never really informed about how cancer treatment would impact my weight, nutrition, etc., and I definitely never learned about any nutritional guidelines. But, I really like the way MSKCC shares how treatment can affect your eating habits and that it provides a detailed set of nutritional guidelines. To read about Eating Well During and After Cancer Treatment, check out: https://www.mskcc.org/cancer-care/patient-education/eating-well-during-and-after-your-treatment
- Everyday Health provides a very good article about PTSD and the emotional challenges that may come with life after cancer. As a huge advocate for mental health screening and care for AYA cancer patients and survivors, I think this is a really important topic to understand. PTSD or anxiety related to cancer treatment is not something that is really talked about at the time treatment begins, but it can become a very real challenge when treatment ends. To learn more about PTSD, other emotional side effects of cancer treatment, and ways to seek help/cope, you can read more here: https://www.everydayhealth.com/cancer/ptsd-and-life-after-cancer-1231.aspx
- Scientific American shares 8 things you need to know about living with cancer if you’ve just been diagnosed. They include everything from questions to ask your care team to a list of other resources to look through: https://www.scientificamerican.com/article/living-with-cancer-8-things/
- Duke University Hospital’s new Teen and Young Adult Oncology program website has an awesome list of resource divided by topic. They share other sites to check out, and I think it’s particularly helpful because they share job and financial help resources, which are hard to find: https://sites.duke.edu/ayao/ayao-resources/
- The Dana-Farber Cancer Institute in Boston, Massachusetts, hosts an annual conference for young adults with cancer and their families. It’s only one day but they cover a variety of topics through speaker sessions and workshops. You can learn more here: http://www.dana-farber.org/for-patients-and-families/care-and-treatment/support-services-and-amenities/young-adult-program/annual-young-adult-cancer-conference/
- CanTeen, an Australian organization supporting teens and young adults with cancer, has a great guide through the process of adjusting to a cancer diagnosis. They cover coping with the news, how cancer is diagnosed, information about cancer in young people, and information as well as additional resources related to what to do if your cancer cannot be cured. You can find it all here: https://www.canteen.org.au/youth-cancer/diagnosis/
- The International Psycho-oncology Society website shares a very extensive list of resources and support forums for patients and families affected by cancer. You can check it out here: https://ipos-society.org/for-patients/resources-for-patients-and-families/
- Young Adult Cancer Connection has a resource page that includes information and resources related to patient advocacy, retreats, peer support, financial assistance, body image, fertility, legal assistance, videos, meetups, and more. You can read through their listings and browse by topic here: http://yacancerconnection.org/resources
- SeventyK is a great website that has a educational resources, events you can attend, and a blog where you can read posts by other patients/survivors as well as posts about all things related to the AYA cancer experience: http://seventyk.com/
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.
If you want to take greater ownership of your care, problem-solving skills can help you to think through challenges or setbacks you are encountering. Problem-solving skills are a little bit more tricky to talk about because, personally, I feel like problem-solving is more of a process you have to know how to go through, rather than a specific set of skills.
This is also one of the more complex aspects of being a self-advocate because the process of solving a problem involves using information-seeking and communication skills. If you have not read my posts about those sets of skills, I recommend you start with those before reading this post.
So, to help you become a problem-solver, I will start with this flowchart I found to be really helpful. While this process may seem very detailed, I have found it helpful because it breaks things down into a more manageable process, and enables me to reflect on problems from different perspectives.
Let's walk through this process:
Part 2: What parts of my health are those inpatient doctors responsible for?
Part 3: Why am I uncomfortable communicating with the doctors I see when I am inpatient?
If I don not know the answer to this, I can ask those doctors directly, I can ask my nurse, or I can ask my parent/guardian. I can also do some research online to better understand what doctors come on inpatient rounds and what roles they play in caring for patients. From asking people or from researching online, I can learn that the doctors I see when I am inpatient possess a range of skills. I likely will be visited by one attending oncologist, who is in charge of caring for all the patients on the inpatient floor. He/she will possibly bring with him/her an oncology fellow (a doctor who is specializing in oncology and training to become an attending doctor), a few residents (doctors in training - below the fellow in the doctor hierarchy), and maybe also some medical students (students who are studying to become doctors).
Part 2: What parts of my health are those inpatient doctors responsible for?
Again, I can ask people around me about this, or I can take to the internet. In asking around or doing research online, I would learn that the attending doctor is in charge of managing all aspects of my cancer care while I am inpatient. He/she is therefore responsible for all aspects of my health while I am under his/her care. This means that I can ask this doctor any questions, or bring up any concerns - whether they are directly related to my treatment or not. The fellow, residents, or medical students that the attending may bring along on rounds could also answer questions I have, but may be less knowledgeable about the details of my case, and may have less experience, so I should probably direct my questions or concerns to the attending if I have the opportunity.
Part 3: Why am I uncomfortable communicating with the doctors I see when I am inpatient?
This is one I can just think through. I seem to feel uncomfortable communicating with these doctors for a few different reasons. First, when they come into my hospital room, I have trouble understanding who they all are and what their roles are. Second, it is difficult to tell who to ask when I have questions. Third, I feel like they are authority figures and that if they make decisions about my care, they know what is best and I do not need to question it.
Start with defining what your problem is and then gather any information you have about your problem. Gathering information can include brainstorming and coming up with questions related to your problem. Next, break down your problem into smaller, more manageable, pieces. Once your problem is broken down, you are dealing with more specific, smaller issues for which it’s easier to identify solutions. After you have identified solutions to the various pieces of your problem, you can select the best solution(s). Examine the results of your chosen solution(s). Test out your chosen solution(s) and review whether they worked or not. If they worked, great. If not, try going back to your original problem, breaking it down again into more/different parts, and identifying other possible solutions you can try. Whether you like to write things down as you go through these steps, or talk through these steps with someone, problem-solving can take time so be patient with yourself and be open to having to try out multiple different solutions.
You can read more about this process, and find other information about problem- solving skills, on the University of Kent website.
“Your communication skills can be applied to thoughtful interactions with your family, friends and caregivers, thereby increasing your knowledge and avoiding unnecessary misunderstandings.”
-National Coalition for Cancer Survivorship
Communicating with your healthcare team can be one of the most difficult parts of adjusting to cancer treatment or survivorship as teens or young adults.
As children or young teenagers, you get used to having your parents be the ones to pay attention to the details for you, stand up for you when necessary, and ask questions when things get confusing. However, as older teens and young adults, you begin to understand more about your health and this can lead to the challenging situation of wanting to take greater control of it but not knowing where to start.
When I was diagnosed with my relapse at 13 years old, I had learned enough biology and chemistry in school to understand the explanation the doctors provided me with regarding what my cancer was and how it would be treated. However, I had not yet developed the communication skills to know what to say or when to ask questions in my appointments. When do I talk to my fellow? What kind of questions do I ask him versus my nurse? What is the difference in the role of the physician assistant I so often saw in the outpatient center and the fellow who seemed to be in charge of my case? And how on earth do I speak up in front of a room full of medical students and residents who, even if they don't intend to, look at me and talk about me in a way that makes me feel like I am part of some kind of zoo tour? I mean, when you're a 13 year old girl with ragged hair falling out, almost no eyebrows left, hooked up to all kinds of things that make you feel like your body is rebelling against you, and are then woken at 8 am to the knock of a pile of 20-30 somethings who are dressed in professional attire with notebooks in hand, ready to discuss your bowel movements…...it just isn't conducive to comfortable conversation and communication.
Instead of trying to get answers, I just muddled along until the answers arose or until the situation went away. I only asked questions when I was in an outpatient appointment with the fellow I knew was in charge of my case, and I otherwise let my mom do all the talking.
But, I regret that, because I let myself think that all those people in the hospital were in control, and I did not take ownership of my own health. Being able to take ownership of your health means it's necessary to learn how to effectively communicate with everyone involved in your care.
To develop communication skills, I think the most important place to start is in recognizing you are in charge, and your healthcare team is just there to provide support, advice, and guidance to you. In addition to remembering you are the one in charge, there are concrete things you can do to communicate more effectively. I found a really helpful outline on WikiHow about how to develop good communication skills: http://www.wikihow.com/Develop-Good-Communication-Skills
The outline includes several in-depth descriptions of different aspects of communication, but my favorite part of it is their 10-second summary of how to develop good communication skills.
I'll elaborate a little on what this means for AYAs in treatment or survivorship:
Using these tactics and remembering you are in charge of your health may help you take steps towards improving your communication with your healthcare team. This, in turn, can help you maintain greater ownership over your health and care.
Following last week’s post, I’m going to start tackling this self-advocacy puzzle by writing about the first of the 4 sets of skills the National Coalition for Cancer Survivorship outlines as necessary to be a self-advocate: information-seeking skills.
In thinking about information-seeking skills from a teen/young adult perspective, I think the biggest barrier to developing good information-seeking skills is simply the availability and accessibility of information. If you don’t have the information readily available to you, and/or you don’t have an easy/understandable way to access it, it can next to impossible to know what to do. That is, after all, why I started this website and wrote my book: the information I wanted was not available or accessible to me.
That being said, I have learned a lot about seeking information since I started this blog about 6 years ago. And, for our age group, it's still unlikely the information you want will be handed directly to you. So, I want to share my biggest tips and tricks with you to equip you with the knowledge to be a better information-seeker. Disclaimer: These are all suggestions based on my personal experience with seeking information for myself, blog, and my book...this is not professional advice.
To me, the most important place to start when seeking information is with defining what information you are looking for. We are used to just plugging things into Google when we want answers, but when it comes to health research, it can be useful to follow a bit more of a specific process.
Step 1: Define what information you want. I like to turn the topic into a list of key words/phrases. Be as specific as possible.
This brings us to Step 2: Use the internet **very carefully**. I compiled almost everything I have written about on this website and in my book from online research. So, the information you want is out there, but you must know where to look, and it is critical to understand what are reliable sources of information. This is where the **very carefully** comes into play.
Step 3: Use the most recent information you can find.
Finally, we come to Step 4: Developing your resource portfolio.
The reason I have found information-seeking skills to be so helpful is because they can increase your self-confidence. When you go into doctor’s appointments or meetings with health providers, and you are armed with the knowledge about your condition, you are better equipped to ask questions, and this ultimately helps you take greater control over your health and wellbeing. Long story short Information -> Knowledge -> Self-Confidence -> Owning your health and wellbeing.
In a post for Cancer Knowledge Network that I wrote back in November, I talked about the challenges involved in the transition from pediatric to adult healthcare, and the need for more support and education to be provided to teens and young adults to be able to successfully get through this transition. In the last couple of months, I have gotten to wondering what, above all other obstacles, is the most important thing to help get young people to feel comfortable taking charge of their own care? After talking with some other young adult cancer survivor friends, and some friends of mine who have chronic illnesses, one topic repeatedly came up in the discussion about transitioning to adult healthcare: self-advocacy.
So, what exactly is self-advocacy?
According to the National Coalition for Cancer Survivorship, self-advocacy means: “…You arm yourself with the tools and skills necessary to feel comfortable about asserting yourself and communicating clearly about your cancer care needs.” They also summarize that the skills necessary for self-advocacy include: information seeking skills, communication skills, problem-solving skills, and negotiation skills.
Through further research, I also found that perspective can play a role in enabling or disabling you from successfully advocating for yourself. I came upon an article about self-advocacy by a psychologist, who is herself a cancer survivor, in the online magazine Psychology Today. One statement she made that really stood out to me said that many patients “…may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions or alienating their doctors by questioning them.” This highlights a perspective that I know, from my own experience, seems to be at the heart of helping teens and young adults become self-advocates: learning that your doctors are not controlling authority figures and that there are no “dumb” questions.
To summarize, it seems there are 3 crucial pieces to this self-advocacy puzzle: (1) Developing a range of skills that enable you to feel confident in your ability to clearly communicate your needs, (2) recognizing that your doctors are not authority figures with control over your future, and (3) it’s your body and your health, so you are entitled to ask any question at all – there is no such thing as a “dumb” question.
Seeing as this is a pretty complicated puzzle, I thought I’d take some time to break it down. In my next few posts, I’ll cover each of these puzzle pieces, to try to make it easier for teenage and young adult cancer patients or survivors to piece together the necessities for becoming self-advocates.
For anyone searching for resources to help with the challenges of cancer treatment, one of my new favorites is Cure Magazine. Cure publishes a variety of articles – anything from scientific breakthroughs in cancer treatment to patient stories. My dad works in oncology, so subscribes to the magazine. However, you can also access all of their articles on their website: curetoday.com.
In their most recent issue, they included a special issue along with their magazine, called Medication Adherence and Financial Support. While every article in the special issue seems incredibly valuable to me, I wanted to highlight one: The Samfund Launches New Toolkit to Guide Young Adults Through Cancer-Related Financial Decisions (you can also find it on curetoday.com). The article covers a new toolkit developed by another awesome foundation (and great place to find resources), The Samfund. According to Cure's article, the toolkit is designed to be a decision-making guide to help young adults make the tough decisions involved in the financial management of cancer treatment. You can access the toolkit and other financial resources provided by The Samfund HERE. I did a test-drive of the toolkit and it is fantastic! It asks important questions to help determine what financial issues you need the most help with and it's so easy to use.
After looking around for similar resources, I have not found any other tools quite like it. However, I did find a great list of financial assistance organizations on the Stupid Cancer website. You can also check out Hope for Young Adults with Cancer, The Leukemia and Lymphoma Society, or Critical Mass for additional resources!
Happy Holidays! While I know I'm a bit behind in posting here, I have written two pieces in the last 2 months for Cancer Knowledge Network. So, I wanted to share them here! The first - from November - is about the challenge of transitioning from pediatric to adult care for young cancer survivors: Challenging Changes. The second is from earlier in December and is aimed to be a call to action for AYAs to get involved in making the changes they want to see in the cancer centers where they are being treated: Calling All AYAs. Check out the links and post any comments or related suggestions below!!
This month is childhood cancer awareness month. While I love going gold for these 4 weeks of September, I think there is a lot more to this month than awareness. Check out my latest blog for Cancer Knowledge Network to learn what September means to me, and how I think we can use these golden days to take action, rather than just raising awareness.
I recently celebrated my 22nd birthday and was so happy to be able to go home to celebrate it with my family and friends. Having graduated college and moved away to Miami, so far from them all in Baltimore, has definitely been an adjustment. But, as with all the challenges in life, it is a learning experience.
For my birthday, my mom's sister and her family were able to drive down from New York to be with us for the weekend. I am very close with my cousin, Julia, and was so happy to spend some time with her that weekend. The most special thing of all was that, when it came time to open my birthday gifts, Julia told me she had picked out their family's gift to me all by herself. When I opened it, I was so excited and so happy to see what it was. Julia had picked out a simple, silver Alex&Ani bracelet with the "Path of Life" charm. The charm on the bracelet says "Knowledge, Motivation, and Strength" and on the back of it there is a path design that twists and turns. I don't think such a message could have come to me at a better time.
Having recently graduated college and moved to an entirely different city surrounded by completely new people, I was enjoying the excitement of all the new things. However, I was also trying to figure out what part of my identity in this new place I would want "cancer survivor" to be.
I was feeling so healthy, so happy, and so free in this new place during those first weeks here. I got caught up in all of the new things and I guess I have not posted here in a long time because, for the first time in a long time, I did not have to think about my cancer at all for over 2 months. I was not involved in any activities related to cancer. I was not around any people that knew I had cancer. I felt I had developed enough other aspects of my identity that I didn't need to disclose that as a part of my identity right away. And that felt good for a little while I think.
But, I have missed something these past 2 months and I couldn't figure out what it was. Looking at Julia's bracelet, I realized it was because of those twisting, turning experiences 7 years ago that I am where I am now. It is because of those experiences that I was driven down the path I am on. Last week, I gave my boyfriend (who I met soon after moving to Miami), a copy of my book. I felt that it was important for me to share with him those experiences that have shaped me into who I am and what I want to do with my life.
It is strange to me how I continue to learn and realize new things about myself and my experiences with cancer as I get older. Now, as a young adult, I think about my cancer experiences in a very different way than I did when I first started this blog. I am realizing how challenging it can be for young adult cancer survivors to navigate the world in the same way as their healthy peers. When you move to a new place, make new friends, date, etc., it is challenging to know if, when, and how to share your cancer experiences with others. For some, you may feel like you don't want to share any of it, and you may feel like it has no part in your identity. For others, you may feel it is a big part of your identity. You may have no long-term effects from treatment that affect your health, or you may have many. There is such a wide spectrum along which the impact of cancer on you may fall.
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