In 2007, I was 13 years old. Instead of starting high school, I was starting a 2 ½ year treatment for relapsed Acute Lymphoblastic Leukaemia (ALL). The whole goal of the first year of my treatment was to get my white blood cell count down to 0, or at least as close to 0 as possible, to ensure any leukaemia cells were not left hanging around. That meant that I essentially had 0 immune system for more than one year. With no immune system, you learn very quickly that the #1 rule is to AVOID ALL THE GERMS. That meant I had to avoid attending school, or seeing friends or relatives who had any symptoms of a viral or bacterial infection. One of the second things you then learn is how much you took for granted  going to school or work.

As I got towards the end of my treatment, in early 2009, I was inching my way closer to freedom and returning to school. But, my plans were thrown out the window as the H1N1 influenza (also known as Swine Flu) pandemic took over the US (where I lived at the time). After discussion with my doctor, my parents and I decided that I should stay home and avoid attending school for a few more months. This was perhaps the most difficult time because I was finally physically feeling better, so I felt the limitations even more.

11 years later, all of the hype around social distancing feels strange because I’ve seen how cancer patients, survivors, and anyone living with an immuno-compromising condition, have been social distancing pros for years already. It’s just that social distancing wasn’t instagram-able until the rest of the world had to do it too. So, if you’re struggling with the idea of social distancing and how you’ll cope with the foreseeable future in isolation, reach out to someone with experience (Just not in-person!). I’m sure they’ll have lots of useful advice to share!

In case you don’t know anyone with this kind of expertise, or if you’re newly living with a socially-limiting illness yourself, I’ll share with you my top 5 pieces of advice for how to manage life at home, on your own.

1. Have an accountability buddy or find ways to hold yourself accountable for your work. While I was on treatment, I was lucky to have a home/hospital tutoring program provided by my county in the US. This meant that they sent a teacher to my school to pick up my assignments from my school teachers, spend 6 hours per week in my home and go through new lessons with me. For the other 34 hours, I had to get through assignments on my own. But, expecting my teacher’s visit on the same days each week meant that I had someone holding me accountable. Alternatively, if you don’t have someone to hold you accountable, consider setting some deadlines for yourself.
2. Make a schedule for yourself – including time for things you enjoy or other tasks that you need to do around your home. Days without structure can seem fun at first, but soon they become frustrating and can contribute to a sense of hopelessness/lack of accomplishment. On the other hand, too much work can burn you out. Your brain will take some time to acclimate to being on its own (it’s amazing how much harder it is to work when you’re not surrounded by other people working). You might also have distractions around you to navigate. Consider these things when making a schedule for yourself, and possibly consult your teachers or supervisors. Making a schedule will also help you protect your personal time so you can do some things you enjoy in your free time.
3. Ensure you plan at least one achievable task/goal each day. When you’re stuck at home, it can be really helpful to get some sense of accomplishment each day, to remind you that you are making good use of your time. I always found it useful, as I started each day, to choose one achievable task that I knew I could and would get done that day. That way, whether fatigue limited my work hours or chemo-brain limited by working speed, I could still say I got something done.
4. Pay attention to your feelings and talk about them – virtually with friends, or in person with people living with you. Being at home 24 hours per day, 7 days per week gets old. Really fast. You’ll find yourself having moments of loneliness, frustration, boredom, lack of focus, etc. Pick up the phone and call a friend or relative. Use your video call service of choice to connect with your workmates or classmates. You can be physically isolated but you don’t have to be socially isolated! Also, remember that distancing and isolation don’t last forever. Whether you have to make it through flu season, a pandemic, or 2.5 years of cancer treatment, remind yourself that you just have to keep moving forward.
5. Choose a single space in your home as your workspace. When I was sick, it was my parents’ dining room table. We extended it out as far as it would go, then I took over half of it. Pick a space with as much natural light as possible, and preferably with a window nearby – it’ll help you keep awake and focused. Try to separate your work space from your leisure space where possible – like I try to limit my use of my kitchen table to work and meal times.

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Instead of letting this adversity become problematic, it’s a great time to consider how we can find new opportunities - opportunities for each of us to learn more about ourselves, spend more time with those we live with, learn new hobbies or skills, test out new ways of working and getting things done, or helping others who may be struggling. By social distancing, we may find better ways of getting and staying connected to one another. Most importantly, we won’t take for granted how lucky we are when we can get up in the morning and leave our homes to go to work or school.

​Dr Lauren Kelada (team leader of the Family Systems and Relationships team at the BSU) recently arrived home from a trip to Norway. Dr Kelada visited the Frambu camp for siblings of children with rare disorders to collaborate on her project, SibStars.
 
SibStars aims to better understand siblings’ experiences of growing up with a brother or sister with a chronic illness, to identify the factors which impact upon siblings’ wellbeing, and to identify siblings’ information and support needs. Qualitative interviews and questionnaires are offered to parents and siblings to obtain insights into their needs and challenges.
 
During the trip to Oslo, Dr Kelada and her collaborators completed interviews with 16 siblings attending the camp. The interviews will be compared with previous interviews with Australian siblings, and will form an exciting cross-cultural study.
 
Dr Kelada has also formed an ongoing collaboration with Professor Krister Fjermestad and Professor Torun Vatne from Frambu and the University of Oslo to help adapt their SIBS intervention into a digital intervention which will be tailored for the particular needs of Australian siblings.
 
In addition, Dr Kelada filmed an interview for SIBS’ website with Prof Fjermestad. You can check it out here: http://sibs.frambu.com/index.php/2020/02/25/intervju-med-lauren-kelada-fra-the-behavioral-science-unit/  

Education and training
I completed a BSc Psychology, Queens University Belfast and MSc Applied Psychology at Trinity College Dublin. Before joining the BSU I worked in the disability sector supporting adults and children in community and residential settings, as a case manager, and as a research assistant for The Successful Ageing in Intellectual Disability (SAge-ID) Study at UNSW.


What is your current role?
I am a Research Assistant in the Ethics and Genetics team at the BSU. I am currently working on the PRecISion Medicine for Children with Cancer (PRISM) psychosocial sub-study. This study is investigating patients’, parents’ and healthcare professionals’ views and experiences of taking part in a personalised cancer medicine study for children with a high-risk cancer where the chance of cure with standard treatment is low. The study aims to understand the psychological implications of taking part in a precision medicine trial. In addition, I am working on the GenPact study which aims to better understand families’ experiences when a child is offered cancer-related genetic testing.


What are the best parts of your current role?
The best part of my current role is knowing that the work I do contributes to a wider aim of improving the treatment and psychological outcomes for children with high risk cancer and their families. I particularly enjoy interviewing parents and healthcare professionals as I find it fascinating to hear the different perspectives and experiences of precision medicine.


What are the most challenging parts of your role?
It can be challenging to hear the difficult day to day reality patients and their families face when dealing with high risk cancer. It can be difficult to reconcile that the study may not directly benefit these families who graciously contribute to our study but instead may benefit future cancer patients.


Where do you see yourself in five years’ time?
In five years’, time I would like to be studying to be or working as a clinical psychologist. I hope to one day work in a clinical role with a research element and contribute to improving the psychological wellbeing of others.
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What advice would you have for someone wanting to follow a similar path in terms of their study/career?
My advice to be would be focus on your academic studies but not to forget about gaining relevant experience in your area of interest. I believe I have developed invaluable skills through working with several different client populations and professionals in my career. I would encourage people to reach out and seek advice from professionals who currently work in the role/industry they aim to work in. In addition, it’s important to always have willingness to seek out learning opportunities and upskill through attending training courses, workshops and lectures.