In honor of National Caregiver Month in November, we will be highlighting the amazing caregivers in our community and beyond. We are so excited to introduce Sara Quilici Giles, a member of Cactus Cancer Society community. Read on for more about Sara and her story.
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In honor of National Caregiver Month in November, we will be highlighting the amazing caregivers in our community and beyond. We are so excited to introduce Sara Godsby, a member of The Negative Space community. Read on for more about Sara and her story.
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Though I’m a young adult cancer survivor, having been diagnosed with Hodgkin’s Lymphoma at the age of 24, I first heard the words ‘you have cancer’ said to my mother 2 years before my own diagnosis.
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The lesson I’ve learned from all of this tremendous grief is to show yourself some freaking grace. Give credit that your loved ones know how you feel, that the appreciation you have is known, and that while you’ll always wish for more time, it’s okay that things were left where they were.
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To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives! The countdown to our top post is continuing today with Flashback #8: Letting Go Of Hope, written by Dana. These 31 articles are the best of the best and we’re very happy to share them with you again! The countdown continues next week!
….From the moment I was told, “Your son has cancer”, I had hope. I was filled with it. It was the feeling I had when looking over treatment plans. It was what I thought I heard in the doctor’s voices when they were telling me what we were going to do next. It was the word I heard the most often from people.
“We are hoping for the best.”
“We hope that the chemo works.”
“We are holding out hope for a miracle.”
“Don’t lose hope!”
It was the name given to the Facebook support page. “Hope for Sebastian”. It was on the t-shirts we had made. Hope was everywhere….…
……
I take Uber a lot. As anyone else who takes it a lot knows, it’s basically like being on a first date, except without dinner and you’re in a car (if you need a random laugh, watch this). Mom keeps worrying about me taking public transport to and from their house when I go to take care of her, so I’ve been taking Uber so she won’t stress.
This leads to me having a first date conversation with all of my new Uber drivers, which always ends up being about why I was out in the suburbs and why I’m heading back downtown. I’ve been telling them the brief truth, that I spent the day at my parents’ taking care of my mother who’s going through chemo. Every single time, the response is the same.
“You’re the best daughter ever!”
“You should win the best daughter award!”
“What, are you competing for best daughter? Wow that’s amazing!”
Guys, I’m not trying to “win” or compete with my brother, who’s in Alaska with his family. That’s not the point. But everyone keeps making sure I know how “awesome” and “amazing” what I’m doing is.
Okay, fine, I understand not everyone would be able or willing to do this for their parents. But I am, and my mom and I are really close, so this was a no brainer for me. Of course I was going to do whatever I could to help her. That doesn’t mean that every caregiver has to be praised so profusely for helping out. It’s actually kind of awkward, especially from strangers who then go into a story about so-and-so’s cancer when I really just want to put my headphones in and rest; I had a long day, just let me stop making small talk.
That could just be me though. I’m not always great with compliments or praise. That’s actually a trait I got from my mother. She’s the worst with being thanked for things, especially publicly. She helped me in college with a film project, and when we thanked her in the credits she got incredibly flustered, and made me promise not to thank her in any sort of discussion/speech at the film’s presentation.
I think my point is, the only people who need to be thanking me for my help are my mom and dad. If you want to help a caregiver out, instead of showering them with kudos, do something else to make their life easier. You don’t need to do a lot, but if you come across a caregiver, chances are they are going through a lot of stress and balancing acts with their life at the moment. Take them to coffee, lend them an ear, offer to help them shop for groceries or run errands or make dinner (note: these are suggestions for friends not random strangers). Even if they say no, they’ll probably appreciate that you even thought to offer to help them out with everyday things. You don’t need to heap praise on them – it will mean much more to them to have you think of their hectic life than to have someone pat them on the back for the hundredth time.
Through everything that’s happened this last month, the constant that I’ve heard from people is the need to take care of myself as well as my mother. I’ve been trying my best, but self care can be a broad, vague undertaking. What does self care mean? Is it as simple as making sure you eat and sleep? For me, my self care has consisted of binge watching Netflix when I’m physically drained, or cleaning my apartment, which is still a post-wedding disaster. Neither of those are helping me feel cared for, in fact my self care has mostly meant ignoring how I’ve been feeling through all of this.
That’s beginning to drain me.
I work really well in crisis. My mother broke her wrist a few years ago when we were in Ireland, and I didn’t lose my cool and got her help. I can go and go through stress, because it tends to make me work harder and be more focused. I have an inner strength I’ve discovered that I draw on in crisis, and I’ve been using it nonstop since we got her diagnosis April 13th.
It was that strength I had when sitting in the surgery waiting room for over six hours with my father, watching a board that only rarely updated itself on how her surgery was progressing. The strength I had when I was sitting awake and exhausted several nights in a row in the recliner beside her as she slept, because my dad and I couldn’t stand to leave her alone. The strength I had to advocate for her when the nurses were rushing her recovery, pushing her beyond her limits and she couldn’t speak up for herself. The strength I’ve had in giving up a job I loved so that my schedule was free to take care of her, while also planning my wedding from her hospital room as she was finally able to eat for the first time in weeks. The strength I had while watching her struggle to walk around my wedding two weeks later as everyone told me again and again, “Well she looks fine, so she must be recovered,” until I wanted to scream at them all.
That strength is finally beginning to wane.
Watching her struggle with what her life is going to be like for the next year, what she’s already had to go through in just barely over a month…
I’m spent. And I can’t be. I think the worst part is knowing that I can’t burn out now, I can’t give up, because she and my dad need me to continue to draw on that strength I amazed us all with during these last few weeks. But four weeks later, I feel like I’ve used all of it up.
I can’t watch her be in pain anymore. I can’t think about how I won’t be here through all of her treatments like I’d hoped, because I’m moving in October to Oklahoma with my husband. I can’t keep telling people that I’m okay, and that she’s doing great, because I’m not, and she’s not. No, the cancer is not going to kill her. No, it didn’t spread beyond what organs they removed in surgery. Yes, she will get through this and live to visit her first grandchild (born three weeks ago) and see my family grow (whenever we decide to start one).
But you know what? That doesn’t make any of this suck less. And lately, all I’ve needed was some self care. For me, at this moment, this means finally allowing myself to feel it, finally allowing myself to be spent and drained and depressed and overwhelmed and definitely completely not okay with any of this. For now, self care is allowing myself the freedom to give in to the impulse that’s been gripping me recently, the impulse to collapse right where I am and sob until my tears run dry.
And once I did that, I picked myself up, dried my cheeks, and felt a bit of strength return.
Self care is about more than making sure you eat and sleep enough while caring for someone else. It also means allowing yourself weak moments, so that you can continue having strong ones.
My husband and I are preparing for a(nother) move. We are moving across a few states and downsizing from a house in a suburban area to a two bedroom apartment in an urban environment. Over the years we have collected a lot of extra stuff. From old clothes to extra couches and a second set of plates, there is so much we have stockpiled and stored that we don’t need, can’t fit in our new home, and really, that others could use much better than we. So, we are beginning to let go of these items – going through the drawers, boxes, shelves, and closets to release the extra that we’ve accumulated. These clothes might remind us of life in another climate, the couches of a friend who gave them to us, but in reality the extra stuff is just weighing us down.
(And, a few years ago we both led a trip of students to New Orleans to help clean out a home of three elderly family members who had collected, hoarded, to what felt like an unlivable standard. So we both have distinct images of where we do NOT want to go!)
Last week we started with going through our clothes – trying things on, telling stories about this or that t-shirt we acquired… and putting things in a pile to donate. We are clearing the way. Because there just isn’t room for anything new when we are completely full. The physical mirrors the spiritual in our lives. When my closet is full of things I use to create my image, maybe I don’t have room to create something new, to be something new. And I even find that I have a harder time deciding what to wear!!! When my pantry is full of old food and all these sauces that are just SITTING there, maybe I have less energy to try a new cuisine or make a fresh meal or start a new way of eating (because no one likes to waste food… but how can I stop collecting too much?). When my schedule is full of activities, hobbies, chores, work, plans… I don’t have time to rest and restore my soul. And I certainly don’t have the space in my day or my heart to be ready to be surprised by things that may come up to bring me joy. No time for that!
And moving, for me, always resonates with the image of replanting. I have a lot of houseplants and they mostly have names and stories of their origins. I have some aloe that I potted at a friend’s house when she rescued a bunch of little ones from a gnarly overgrown garden. I have a tall palm-like guy that we inherited at our first home (he had been left behind) and we named him Marshall after the street we lived on. I have a little ferny friend that reminds me of friends from Michigan where I split him up and shared pieces of him with them. I am connected to my plants in my home and I have had them long enough to need to repot them. When I pull my plant from its tiny old home, her roots are usually wrapped around the whole shape of the soil, overgrown and searching for more space. I gently loosen them, preparing them for the space that is coming. The new “home” is prepared with extra soil and I cozy the new roots into the pot. After setting the plant in securely, I add a lot of water to invite the roots to spread out and make themselves at home. For a little while, the plant doesn’t look as perky. She feels a little uncertain without her old way of being. With a little time though, and some growing, she begins to expand beyond what she was. She can create new stems, leaves, and roots because she has the new space.
This image reminds me of the need to release my grip on my current way of being – it could be my roots of my friends and routines in my current home, my extra stuff, my plans, etc. And when I make space for something new, even if the process feels uncertain, if my leaves aren’t quite as perky in the process (do I really have to give away that Avril Lavigne concert shirt!? ha!), I can trust that the space I create physically allows my soul and life to take on some new growing. A new direction maybe, or a new capacity… who knows! I will never find out if I’m not willing to do the work of cleaning things out and trusting in the less-than-perky process of expansion.
Ideas for Living This
How do you make space for replanting and mindful living as a young adult cancer or long term illness patient, survivor, or caregiver?
From the moment I was told, “Your son has cancer”, I had hope. I was filled with it. It was the feeling I had when looking over treatment plans. It was what I thought I heard in the doctor’s voices when they were telling me what we were going to do next. It was the word I heard the most often from people.
“We are hoping for the best.”
“We hope that the chemo works.”
“We are holding out hope for a miracle.”
“Don’t lose hope!”
It was the name given to the Facebook support page. “Hope for Sebastian”. It was on the t-shirts we had made. Hope was everywhere.
When you are a parent, you have nothing but hopes and dreams for your children. From the moment my children were born, I had all these great ideas about who they would become, and what kind of lives they might have. I pictured them riding bikes, losing teeth, going on dates, graduating high school, getting married, starting families. I had hope that they would each have the best lives imaginable.
But then cancer showed up. And my hopes for my son changed. It went from hoping for him to get into a great college to hoping that this round of chemo doesn’t make him as sick as the last one. Hoping that he might get to go back to school for a little while. Hoping that he won’t have to be in the hospital for his birthday again. Hoping that the test results show improvement. Hoping that the treatments are working. Hoping that the cancer will go away. Hoping that he won’t die.
I continued to hold on to that hope. Even when the tests showed that the drugs weren’t working. Or when we changed drug trials. Or when we switched hospitals. Especially when we switched hospitals, because the newest hospital had a team… one that specialized in Sebastian’s cancer. New found hope! Surely they would find a way to fix this.
A year later, after countless clinic visits and chemo rounds and tests and scans, the doctors told us that we really had no hope of curing Sebastian’s cancer. They told us that everything we could do would just give him a chance at a little more time. The doctors actually said “no hope”. No hope? I’m his mom… I can’t give up hope. This is my son, my child, someone that has all these plans and dreams waiting for him. How can I stop hoping he will get better? I can’t give up hope. I just can’t…
Last spring, the side effects from all that hope-chasing caught up to us. Sebastian ended up in the hospital for 12 days with multiple infections, and we were all afraid he wouldn’t be able to get through them. A DNR was put into his file. His grandparents dropped everything and came to town to stay with us. We had conversations with his pastor about funeral plans. Reality slapped us all in the face. But, our hope prevailed, and the antibiotics cleared the infections up, and we started talking about what we were going to do next. But Sebastian had other plans.
Towards the end of that hospital stay, Sebastian decided that he was tired of doing this. He was tired of the hospital stays, he didn’t want to keep making himself sick from chemo, he was tired of missing out on his life. He asked me if I would be mad at him if he decided that he didn’t want to fight his cancer anymore. He was letting go of his hope for a cure, and just wanted to live his life out, his way.
So, last July, we stopped his treatment, and started him on hospice care. No more chemo, no more weekly clinic visits in Chicago, just pain management and hospice nurse visits at home. I keep in touch with his oncologist via text on a weekly basis, just keeping an eye on how things are progressing. And for a while, nothing was happening.
Last month, we decided to do a set of scans because his pain was getting worse, and spreading to new areas. The scans confirmed our fears, his cancer was spreading. I looked at the scan results, and my fears were confirmed and that hope I had been holding onto for so long was crushed. He is getting worse. His cancer is not going to go away. Sooner than later, my son is going to die because of this. I cried, I shared the news with friends and family members, I told my other children what we had found out. I looked at what we had and I accepted it.
I let go of the hope that he would get better. That fight I had been fighting from day one, thinking he was going to be the one that beat the odds, even though the odds were completely stacked against him from the beginning. I accepted reality and let go of the dream. I just let it go.
I slept for 13 straight hours that night.
Holding on to hope for something that isn’t possible is a lot of work. I didn’t realize how much work it was until I stopped doing it. People have a misconception that having acceptance about something means that you have to like whatever it is. That is not always the case. Accepting something means only that. You accept it, and let it be what it is, and you stop trying to will it to be what it isn’t.
I’m not saying that I don’t have any hope anymore. I still have an overabundance of hope, but today it’s for different things. I hope for comfort for him, that he can handle his pain. I hope for strength for all of us to get through what is coming, together. I hope to draw closer to my family while we face the things ahead. I hope that Sebastian continues to find things to make him happy. I hope for him to have peace. I hope for just a little more time.
When I was going through treatments, I rekindled a love for coloring. In the treatment area, volunteers sometimes came around with craft/coloring/drawing supplies. One day I took a coloring page and some colored pencils, and I was hooked 🙂 I spent hours at home and at treatments coloring. I even watched videos online and learned to shade and blend different colors 🙂 My favorite colored pencils are the Prismacolor colored pencils. You can find them here.* They are awesome and let you really blend and shade the colors
Today we are sharing some great online sources for free printable coloring pages. You can find anything to color… from astronauts to plants and animals to presidents to disney characters. This is great for the young adults facing long term illness or cancer as well as the kiddos! Whether you are caregiving for a kiddo with cancer or you are going through cancer and need something for the little ones to do, look no further!
You can find great coloring pages here, here, here, and here!
Are there any other cool places to find coloring pages? Any other activities that you like to entertain kiddies with or entertain yourself?
*while some links are affiliate, all ideas and opinions are those of the author
