I can’t believe it’s been more than one year since my last post! Between the start of COVID and different aspects of life getting in the way, I’ve found it difficult to sit down and write again. COVID lockdowns brought back a lot of feelings and memories from treatment, although they were very different in many ways too. I dealt with some survivorship-related challenges through May and June, and then the end of the year brought with it some joyful surprises. I’ve learned a lot this year for sure, from the disadvantages of being overly optimistic/positive to the importance of self-care and making time to reflect on what I’ve done and where I’m going. Since beginning my PhD, I’ve also found myself missing writing for fun because I’ve burned myself out writing for professional purposes. So, I wanted to try to get back here again, even if irregularly. A few notes before I keep going here: there are likely a few triggers throughout this post, including talking about social isolation, mental health, and fertility preservation. If these are topics you find difficult to read about, this may not be the post for you. Also, everything I share here is personal opinion, not medical advice. If you’re experiencing any similar challenges, I encourage you to talk with your healthcare provider, although I do welcome any questions or comments!

So here we go…
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Soon after my last post, in March of 2020, COVID came to Australia and we began a strict, 3 month lockdown. I was required to work from home on my PhD and my husband was stood down from his position (meaning put on leave without pay). My dream of living abroad quickly turned into a scary limbo of financial insecurity and the realization that I likely wouldn’t be able to just jump on a plane to go see my family for the foreseeable future. While those three months provided me a lot of wonderful time with my husband, it also brought back so many memories that I was not prepared for. The idea of working from home and having to remain socially isolated scared me because of how much those same things had negatively impacted me during my treatment. Part of my brain wanted to just shut down at the thought of having to stay in my apartment for three months, with no social contact, yet still having to be productive. My anxiety led me to prepare for the worst – impending depression, loss of friendships and more - and yet I quickly realised that this time would be very different.  The fact that everyone had to isolate along with me made such a difference. And it made me wonder what the social futures of cancer patients could look like, and how much better they could be now that everyone is so comfortable with Zoom and online games.
 
Fortunately, Australia’s lockdown got things under control and they were able to begin lifting restrictions in June of 2020. Just as things were looking up, I was confronted with the unfortunate reality of having to pursue fertility preservation because my fertility specialist indicated I likely would not be able to naturally conceive for much longer (I was given about a 2 year window). I was likely headed for menopause before the age of 30. I had been able to put it off during the lockdown, when elective procedures were put on hold. But, with the lockdown lifted, I had no choice but to delve into what I soon realised was an extremely scary and overwhelming world of helplessness. For me, fertility preservation felt important because I was only 25 and even though I was married, I wanted so much to finish my PhD first. I also didn’t feel like I had finished being young yet. I had spent so many years of my life wanting to be a young adult, where how mature I felt and my interests would finally match up with my age and the interests of my peers. The last 2 years had been so joyful, making new friends and doing fun things in this beautiful new country I was in, I didn’t feel ready to be a parent and be responsible for a tiny human yet. While my husband and both knew we would eventually want kids, we didn’t quite feel ready. So, we decided to give IVF a try, and freeze embryos we could use in the future. I mentally prepared myself to confront injections and invasive procedures. I tried to maintain the positive and remain optimistic. My specialist also assured me that I was young and this would likely be a successful procedure, although there were no guarantees. But, one of the things I forgot about was how inclined I was to latch on the positive, assuring words of a healthcare provider and tune out the risks and complications. In latching on to her words of assurance, I went into my first IVF cycle feeling so sure everything would work out. I talked about it with my family and friends, and I felt so confident about the outcome. I was young and healthy after all, and so was my partner. There were no clear reasons this shouldn’t work for us as far as we understood.

But, 5 days into my first cycle, after getting over the fears of once again doing home injections, and the memories that resurfaced along with the smell of alcohol swabs and the stings of sharp needles, I thought I’d be ok. That I’d get through it. But then, I got a phone call. My hormone levels had risen properly, but the ultrasound only showed one mature egg in one ovary, when we needed at least 5-10 in each ovary. It wasn’t clear why this happened when everything else had looked right. I was advised to stop that cycle and restart the following month with a different combination of drugs. Not only did the financial pressure of already spending $4000 on medications make this a big blow, but it brought out emotions I didn’t expect. Feelings of anger that somehow I, as a woman, was unable to do the one thing I’m supposed be born able to do. Feelings of guilt that this may mean I may not be able to give my husband children (even though he constantly reassured me that has never been a concern for him, and my wellbeing is a priority - he’s happy to take other routes to parenthood if we needed). And feelings of helplessness because something that should have worked didn’t, and no one really had an answer for why. So we continued on, and I spent 3 weeks recovering before beginning a new cycle. I tried to return to optimism and hope that it would work out. Then, five days into the second cycle, I got another phone call. Again, the same problem, although slightly better results. Only 2 mature eggs appearing in one ovary, and one in the other. I was given the choice to cancel again, but it was likely that if I hadn’t responded twice, a third time would not be any different. So, I was advised to proceed to the egg retrieval stage to at least try to get a few eggs. So, we forged ahead and I went in for the egg retrieval. I woke up from the anaesthesia to be greeted by the concerned face of my specialist. They had only retrieved one egg. I was so delirious I couldn’t feel crushed, but I knew I was. I just went home and cried, waiting for the call from the laboratory in two days’ time, to find out whether our one chance fertilised.

Then the call came: it fertilised but was abnormal so would not result in a viable pregnancy. I then got a call from my specialist. She was very kind and supportive and apologised that this didn’t work out even though she had hoped it would. But, then she began sharing some interesting information she had left out before. Turns out she had had 3 other young female patients who had been diagnosed around the same age as me and had experienced similar complications during the IVF process for reasons no one could explain. My specialist clarified, there is just a lot they still do not know about the impact of adolescent (teenage) cancer on fertility and fertility preservation processes. Surprisingly, she said all three of those girls were able to naturally get pregnant in the year following their failed IVF cycles. I was shocked. I know healthcare providers weigh up what information is best to share with patients and have to make a decision about what to share, but so much of me had wished she had told me those stories before I began all of that so that I could have been more prepared. I felt I would have rather been worried about facing those similar outcomes, than to experience the helplessness and guilt I did. But, at least now I had some kind of reason. Something happened during treatment that made me not respond to this process, although no one knows exactly what.

So, my husband and I were advised to start trying to get pregnant within the following 6 months, and to check in with the specialist again if we couldn’t after 6 months of trying (because my window of opportunity was getting smaller). Even though we weren’t 100% ready, we knew this could be our only chance, so we decided to go ahead. By some miracle (and a LOT of calculation and structured timing of things), after only 3 months, I found out I was pregnant in November of 2020. I was shocked and rather scared because, even though I knew we were trying, a huge part of me just expected it not to work. Fast forward to now, April 2021, and I’ve made it more than halfway, expecting a healthy baby boy in July. While we don’t know what the future looks like in terms of my ability to get pregnant again, and I didn’t feel entirely ready to be a parent, I feel so lucky that this little miracle happened.
 
And I’ve learned about the disadvantages of focusing too much on the positive and not preparing enough for the challenges. I’ve learned that sometimes you need to vent and be angry, that while emotions can be painful, they have to be felt to move forward.  I’ve learned to ask more questions from healthcare providers too, like what’s your experience been with outcomes for other young women like me?
 
I’ve also been reminded how important it is to channel emotions raised from cancer and survivorship experiences into something you love doing, to take your mind off your own struggles and to find joy in doing something. Through my PhD work, I’ve gotten to speak with and survey young people currently going through treatment or recently finished treatment. I’ve spoken with people about their toughest moments and laughed with them about their funny stories. I spend my days reading and writing papers with the goal of calling attention to what future research and improvements in care need should focus on. I’ve immersed myself into this community that I love so much, and it’s brought me so much joy to feel so connected and to have such a sense of purpose. More importantly, thanks to the young people I meet, I can continually be reminded that I’m not alone in all of this 😊 Even 12 years after finishing treatment, the twists and turns of the survivorship roller coaster make me especially grateful for reminders that I’m not alone and there’s still so much important work to be done for this amazing community of young people.

I'd love to hear from you about your challenges, triumphs and lessons learned over the past year - share your thoughts in the comments below!
 

This past Tuesday was World Cancer Day and it was a really important reminder to me to get back to writing.

It’s been a long time since my last post. I think I needed a mental and emotional break from writing about my experiences because a lot has happened in the past year.

When I started my PhD in February last year, I didn’t realize how mentally fatigued it would make me. Or how working in the AYA cancer world all day, on a project so close to my heart, would leave me little emotional energy to delve back into my own experiences in my free time. But more than anything, I think the survivorship challenges I’ve dealt with in the past year took a toll on me in more ways that I realised. Dealing with cancer related challenges 10+ years after the fact is always something I was warned would happen but never something I was prepared for...nor was I warned about the emotional toll they would take.

But now, I finally feel like I’ve found ways to cope and I’m coming back to myself and coping better with it all...ready to write again. Which brings me back here.

So I guess to start off, I can explain a little about everything that’s happened in the past year - the good and the bad - and how I managed along the way (or didn’t).

In April of 2019, I finally got my act together and had my first survivorship appointment here in Australia, more than a year and a half after moving here. And boy was I glad I did.

Because my treatments have put me at risk for heart problems and fertility problems, and they’ve already caused thyroid problems, I saw an endocrinologist, cardiologist, oncofertility specialist and an oncologist. The cardiologist did an echocardiogram (a kind of ultrasound) of my heart. The endocrinologist checked my thyroid levels since I had been on my thyroid medication for about 6 months. The oncofertility specialist checked my Anti-Mullerian Hormone level, an indicator of my ovarian Reserve (how many eggs are left in my ovaries). And the oncologist checked my general blood counts.

My thyroid levels were a little off, so we increased my dose. My heart was thankfully in great condition and nothing was wrong. But my fertility situation was not so great.
My ovarian reserve was significantly lower than it should have been for someone my age. 

So, the specialist talked me through my options: have two babies in the next two years (i.e. try to get pregnant for the first time in the next month and then have a very short break in between babies), adopt, use donor eggs, or retrieve my remaining eggs and combine them in the lab with my husband’s sperm and then freeze the embryos until we are ready to use them. Given I am only one year into my PhD, option 1 was not optimal. Option 2 was possible but I didn’t want to give up on the idea of carrying my own child, and option 3 meant it would not really feel like my own child. Option 4 was also not optimal, being insanely expensive ($10,000+ out-of-pocket expenses) and highly invasive for me (involving lots of hormone injections and procedure to retrieve the eggs.

I was devastated and felt this overwhelming dread, getting dragged back out of my “normal” life, to be thrown into the totally different universe in which I had existed for most of my teenage years - the sick patient who was losing herself in a broken body that continued to rebel against her  (side note: totes feel like losing genetic material to create future children has been worse than losing my hair - would totes go back to being bald to get some eggs back!!). Needless to say, my previous tactics of trying to bury my feelings and not think about what was happening were not going to work this time.

I felt incredibly fortunate that my husband was really supportive. I was also so glad that I had, 3 years ago, when we were only 3 months into our relationship, warned him of this possibility. At the time, I told him that my cancer treatment may have affected my ability to have children but it was uncertain, and if he wanted to leave before we got serious, that was the time to do it. But just like he said then, he told me: Clarissa, we don’t know what will or won’t happen in the future and there’s no point in stressing about uncertainties. I love you and that’s that. And this time, he also added: “We could have had trouble getting pregnant without you having had cancer, and there could have just as likely been something wrong with me that could have affected our ability to have children. It doesn’t matter to me how we have kids - we are in this together.” And the sense of relief following all of this was immense - because I hadn’t realised how guilty I had also been feeling about what this all might mean for him - that I couldn’t do this for him the normal way.

So, after about 4 weeks of thinking and passing through all of these emotions, we made the decision to pursue option 4: retrieving my eggs and freezing embryos. I have my first consultation next week and will likely go through the procedure in March. 

Having gotten through the emotional rollercoaster of the last 9 months, I have found there are 3 really important things to have/find/do when dealing with unexpected late effects:

1. Find a support person - whether it’s a partner, a friend, or another survivor who has been through it (or finding one of each), it’s really important to talk about how you are feeling and get support from someone. I relied a lot on my husband, but I also found another survivor who was going through this around the same time as me, so we have been talking about our experiences together, and that’s been really cathartic.
2. Exercise or find an outlet for physical activity. I’ve found exercising, in any form, for just one hour every day or at least every other day has been an awesome stress reliever. Whether taking a walk outside, spending some time on the elliptical at the gym, or swimming, find something you can do to move. Not only does it relieve stress but I also find it helps me maintain a sense of my body being capable of something whereas I’d otherwise be so fixated on what it’s not capable of.
3. Exercise caution when searching for answers or others’ experiences on the internet. It’s easy to absorb incorrect information, and more importantly, it’s easy to get scared. Prime example was that just last month, Amy Schumer (who I otherwise love as an awesome comedian) decided she would post a photo of the bruises all over her stomach from the hormone injections you take before going through egg retrieval. Do I already have a phobia of subcutaneous injections? YES. Did I want to see that to get even more scared? NO. So, I found it a lot more helpful to have a good chat with my doctor and get questions answered specific to my situation, without the scary pictures or experiences I came across searching the internet. Everyone can experience late effects differently, so it’s good to make sure you find out what to expect from your doctor based on tests you’ve received/your treatments.

And with that, I’ll end this first post. Stay tuned in the next few weeks for some new posts about identity, body-image, advocacy, and new research related to being a teenage or young adult cancer patient or survivor.

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I know body image became an issue for me the first week I began my treatment, and it continues to be now nearly 13 years later. I came across this awesome article sharing advice and positivity from young people who have or have had cancer, for other young people who have or have had cancer. The article is part of the #StillMe campaign being led by the Teenage Cancer Trust in the UK. Have a read here for a little #BodyPositivity inspiration :)

It's been nearly 7 years since I first started this blog and it's been a wonderful adventure. In order to make sure I continue to share content that is meaningful to readers, I want to hear from you! A few things I want to know include: how you found out about my site, what blog posts you have found to be most helpful, whether or not you've read my book, and whether or not you'd like to receive a Riding the Cancer Coaster Monthly Newsletter with new blog updates and resources. If you have a minute, please fill out the survey below to share your preferences and thoughts! Your answers will be completely anonymous (also, the newsletter prompt collects information separate from the survey so the email address you enter in the newsletter section will not be connected to your other survey answers). Thank you!

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.

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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! 

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!

1. What was the transition like for you when you were diagnosed with cancer?
2. What was your environment like? Were you treated more in a pediatric setting throughout your cancer treatment or in an adult setting?
3. How were you able to be involved in your treatment options and the treatment of your cancer? How do you feel this could have impacted you?
4. What differences did you notice that differentiated how you might deal with cancer as opposed to somebody both younger and older than you?
5. How do you feel community and having a strong support system can help a cancer patient, especially if they are an adolescent?
6. How can having a group of peers going through the same thing impact an adolescent patient, and do you have any experience of this happening?
7. Have you seen any changes from the beginning of your diagnosis to now that target psychosocial needs when treating cancer in adolescents? If so, what are these and how have they helped or worsened the issue?
8. How was the hospital you were treated at treating mental health? Was this beneficial to you or other patients?
9. How do you feel hospitals could work to target psychosocial needs more for adolescent cancer patients that would improve overall patient care?

If you have any questions, feel free to email me.