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At my most recent CT scan, the woman who normally greets me at the door to the waiting room and checks me in was off of work. She normally takes my insurance info (for the millionth time), brings me that gross liquid I used to have to drink, and remembers my name every time I come in. I had found comfort in knowing that I would get to see her smiling face each time I went in for a scan…but this time she wasn’t there. I walked in, saw a brand new face, and immediately wanted to cry. This wasn’t the way it was supposed to be! That one little change in such a stressful situation was enough to put me over my tipping point.
Have you experienced something like this before? Describe it. How did it make you feel? What do you think caused such a reaction?
If you are signed up for our journaling prompts, you received the prompt above (bolded and italicized) along with a bit of my back story earlier today. Last week you would have received this one…
Without naming it, describe your favorite color as a person.
…which I think is my favorite so far of the prompt’s Lacuna Loft has offered. Some of the Lacuna Loft journaling prompts are deep, asking you to really consider something about yourself and your life, and others seem more superficial. Either way, journaling can provide a great insight into your emotions and wellbeing. Journaling is for everyone involved with this icky process of young adult cancer and long term illness. As a caregiver and as a survivor, I was immensely aided in my healing through journaling.
Are you interested in signing up for the Lacuna Loft journaling prompts? The sign up is super easy (just fill out this simple form) and we’ll get you a prompt within the first 24 hours! Then, each week (well, mostly each week) you’ll be sent a simple email with a journal prompt inside. If you really like what you wrote and are interested in having it published here on Lacuna Loft, let us know!
Have you kept a journal before? What did you think of the process?
P.S. One of our contributor’s has talked about her practice of keeping a journal and offers some helpful insight!
Today we have a guest post from Liane Kandler. She is a clinical psychology doctoral student in Ontario, Canada. You can read more about her background here.
I am not a cancer patient or survivor. I am a healthcare professional and a doctoral student in clinical psychology. I research the impact of cancer, specifically the impact of cancer in young adults. I am also an advocate, friend, and family member to patients and survivors. Understanding and improving the impact of cancer on patients is both a professional and a personal goal.
I learned a lot in the 8+ years that I have been in this field. I learned that cancer, at any age, is hard. It can be frustrating, distressing, stressful, and worrisome. There are good days. There are bad days. Some acquaintances may become great friends. Some great friends may become acquaintances. There may be financial stress. You may find you have an incredible support system, or a support system that needs help. You may grow from the experience. You may not feel like you gained anything. Cancer may impact you differently than it impacts others, but it will have an impact.
Broadly speaking, studying this impact is what we do in the field of psychosocial oncology. Psychosocial oncology is:
“a specialty in cancer care concerned with understanding and treating the social, psychological, emotional, spiritual, quality-of-life and functional aspects of cancer, from prevention through bereavement. It is a whole-person approach to cancer care that addresses a range of very human needs that can improve quality of life for people affected by cancer” (Canadian Association of Psychosocial Oncology).
Psychosocial care is critically important for all patients, with organizations forming worldwide to research, understand, and meet this need. The International Psycho-Oncology Society is celebrating its 30-year anniversary, and has the mandate of integrating psycho-oncology into day-to-day, mainstream cancer care for all patients. The American Psychosocial Oncology Society is similarly dedicated to advancing psychosocial care for all people affected by cancer.
These organizations, and other similar ones around the world, emphasize the importance of psychosocial support. Cancer is a life-changing illness – it literally impacts all areas of life. That means when it comes to seeking help, you may also need, or want, help in the different areas of your life affected. This might mean social support, psychological help, perhaps financial counseling, or more. That’s why social workers, psychologists, nutritionists, and sometimes even quit smoking programs are often now available for patients, to help them throughout their cancer journey and into survivorship.
For young adults, one of the most often requested services is to connect with other young adults cancer patients and survivors –to connect with someone who understands the experience, because they too had to go through it. Thanks to this, patient and survivor created resources have exploded in the last decade: blogs, websites, novel treatments and therapies, support events, retreats, and more. These are all incredible resources, but this is a new field and we still have a long way to go to ensure that all young adult cancer patients and survivors have access to appropriate psychosocial care.
Consistent with this, my research project is trying to help map the psychological impact of cancer in young adults. I designed an online survey that asks for information about cancer history, the key issues facing young adult cancer patients and survivors, positive or negative life changes that have occurred since diagnosis, quality of life, distress, social support, life satisfaction, physical activity level, stress, and more. Although there are research studies out there that already ask many of these questions, they don’t do so together. This is really important, as we need a greater understanding of how all of these factors relate to one another. In the end, we are hoping to develop a clearer understanding of the issues faced by young adult patients and survivors, as well as how resources and tools can be better tailored to meet specialized psychosocial care needs.
If you were diagnosed with cancer between the ages of 13 and 39, and are now over the age of 18, then you are eligible to participate in this research by completing the online survey. To say thank you, participants will be entered into a random prize draw for a personalized iPod nano, a Kindle e-reader, or a $100 VISA gift card.
As I mentioned earlier, I have learned a lot in the 8+ years that I have been in this field. However, I also know that I have a great deal left to learn. I am thankful for every survey response, every blog I read, and comment I receive. I am hopeful that research and progress in the young adult psychosocial oncology field will mean that no young adult ever has to feel alone.
Thanks for reading. If you have any questions, or feedback, or you would like some help getting in touch with young adult resources, feel free to get in touch by email (aya.oncology@gmail.com), Facebook or Twitter.
Thanks for considering this research – please share!
Are you a young adult cancer survivor or caregiver? What about a young adult suffering from a long term illness? Want to do some writing about your experiences, helping other young adults along the way?
Then come and write for Lacuna Loft!
We’ll get you started writing for the site, helping you along the way however you may need. Process your own experience while sharing your valuable knowledge and insight with other young adults going through similar things. Being a young adult cancer survivor or illness sufferer is a lonely experience. Lacuna Loft wants to help.
Email info(at)lacunaloft(dot)com for more information!
From everyone here at Lacuna Loft, we wish you a happy new year 2015. We’re excited to start this new year right with awesome content for the young adult cancer survivors, caregivers, and young adult long term illness sufferers out there!
P.S. Did you check out our ways to celebrate the New Year in style?
Happy Holidays from all of us at Lacuna Loft!
We’ll be signing off for the rest of this week but stop by next week for some great, young adult cancer lifestyle management support content. As always, if there is something you’d like to see more of in 2015, here on Lacuna Loft, don’t hesitate to let us know!
Lacuna Loft’s office is a busy and bustling place this winter. We’re getting our ducks in a row for our non profit filing while still offering you age appropriate lifestyle management resources as a young adult dealing with cancer or long term illness. We are brimming with ideas and inspiration from our founder’s trip to the Critical Mass Annual Conference (more on that soon!) and we’re starting to expand our reach to hospital social workers, nurses, physicians, and anyone who will listen 🙂
As we approach the holidays you can expect more fun DIYs, great recipes and foodie ideas, more stories on survivorship, and much more!
We would love to hear from you! Let us know what you like here at Lacuna Loft, what you dislike here, and what you would like to see more of! 🙂
Lacuna Loft was recently featured on Central Illinois Business Radio! You can listen to the entire show here or (if you’re impatient) if you just want to listen to the bit about Lacuna Loft, click on the “Download Now!” link just above the play button and fast forward to the 24 minute mark.
It was such a great honor to talk to Alex Ruggieri about Lacuna Loft. We spoke together about some of our background story, where I see LL going in the future, and why exactly age-appropriate resources are necessary for young adults dealing with cancer.
Listen to the show and let us know what you think!
Wow! What a whirlwind the 2014 Critical Mass Conference was! I made a lot of great connections, met an amazing number of awesome people, and slept as little as possible 🙂 I’ll talk about the conference in depth later this week, but until then…here are some images of Lacuna Loft’s trip to Denver last week!
Yep, that’s right! We are officially working to become a non profit. So many little things went into making this decision but we wanted to share the end result with you all! While not yet official, here at Lacuna Loft we are slowly getting everything in order, forming a board, assembling the paper work, dotting our i-s, and crossing our t-s to file as a 501-c3. As soon as everything is ready, we will move everything over to LacunaLoft.org. Don’t worry though…we’ll keep you updated!
The Lacuna Loft team wanted to officially say Thank You to everyone who has been supportive of all of our hard work since our March 3rd launch. Hours and hours and hours have gone into article writing, brain storming, web developing, paper designing, meeting having, telephone calling, and much more.
If you’re interested in learning more, helping out, or have any other questions or concerns, please do not hesitate to shoot an email our way! Just contact info(at)lacunaloft(dot)com!
