“You slowly adapt to the point that your former life becomes kind of unrecognizable... It is all so different now.” -Teva
Somehow, we find ways to adapt and keep living and thriving, despite facing challenges every day. How do we find fulfillment in our daily routines? How do we set goals and define success? How do we adapt to ever-changing financial, educational, and work lives?
When it comes to goals, I try to be realistic and I try to do short-term goals.
An average person might have a five or a ten-year plan on the go, even though there is no guarantee that they will be there in that 5 or 10 years. It's more realistic though for them than for me, because there's less complications that can arise. With me, I would like to be here in 5 years and I joke with my friends that when we're older we'll all get a house and cats and all be crazy together. My husband and I reached our 10 year wedding anniversary, and that was one goal I really wanted to reach.
We are trained to be thinking of the future all the time
, especially at my age. But so much can change, and the future can be so unexpected. It’s hard to make any plans when everything is so uncertain. I just take it a day at a time now. I know things can change or they can stay the same. I am just living in the present.
We plan things that are short-term, like going to a sci-fi convention that's coming up in a couple months or getting ready for Christmas.
This week, for example, I had a goal of cleaning one part of the house. Sometimes goals like that happen, and sometimes they don't happen. You have to be lenient with yourself and think that even if it doesn't get done, at least you tried. On some days, a significant achievement for me is that I got the dishes complete or that the floor has been swept.
When I first got sick I thought "I'm never going to see a giraffe in the wild."
My husband said, "Let's go to Africa!" So we went to Africa and had a safari and visited friends in South Africa. We saw Johannesburg and went to Cape Town and all these lovely places. Then my husband asked me to put a Top 3 on my travel list and we've completed that Top 3 which included Machu Picchu and Angkor Wat. Now we're working on where the next trip will be. I told my husband that I want the next place to be a place that he wants to go to because it's been all about me for too long. So, we'll be visiting Eastern Europe next. We're going to start in Berlin, then to Vienna and Prague and maybe Bratislava.
As young adults, we like to go out
but we don't often have money to do so, so I fundraised for us (my support group) to be able to hop on a bus one night and go out to sing Karaoke together. This is the type of work that I can do now, and it brings me joy.
I heard early on that palliative care is related to better outcomes.
Those outcomes can be things like less pain and better quality of life, which are really significant things. I've been going for palliative care since my first year. I've been working with them to manage my pain and side effects since and it's been tremendously helpful to me.
Through palliative care, my friends and family don't need to carry the weight of my quality of life themselves.
I think it's important to stress what palliative care really is, because so many people hear 'palliative' and they think 'end-of-life care'... but palliative care is so much more.
Even with Stage IV cancer where someone is able to carry on their life and do well, there's still a place for palliative care that is incredibly valuable.
There's a misconception about palliative care - and not just among patients - it's doctors too. I've heard of some patients asking for palliative care and being told: "well you're not dying today." I think it's simply because they conflate one word for another, not because people don't need it.
I’ve decided to stay at home for the longest time possible.
My home-care nurse keeps on telling me that I’m close and tries to call the ambulance on me to have me admitted to the hospital. I feel as though if it’s coming close I’ll move to hospice care, but that I know my body well enough to try to hold out and stay at home for the longest time possible. I have my bed here, my cat, my books, my piano, and my friends can stop by whenever they want. I worry about being home while my body is shutting down too though, and I fear that someone I love will find my cold body one day. They know how little I like being in a hospital or in any institutional setting, so I tell myself that as long as they’ve accepted it as a possibility and aren’t themselves terrified of it, I’m making the right choice for everyone involved.
I have always been very independent.
I left home at 17, got a job and an apartment with a roommate, and then got diagnosed with brain cancer when I was 18. I have been one of the lucky ones as I can’t say enough about my employer. They have been so great, and like a loving family to me. I was able to go on disability through them and I don’t know what I would have done if I didn’t have their support and help. They continue to help me with returning to work.
I was such a Type A my whole life that I waited until I was too sick to function to stop school and work.
I guess the decision was made for me by my body. The year before, I was working at a temp agency and they were not very accommodating. I had been calling into work sick a lot because I was peeing blood and vomiting often, but the doctors would send me home with antibiotics. My boss at work fired me and told me that they expected me to be at work even if all four of my limbs had been severed. I wish I had fought for my rights there and then, but I was just too sick to do anything about it. When I was finally diagnosed, and as soon as my doctors realized my illness was serious, I stopped working. I had been working at a call-center doing surveys and market research and I was surprised at how nice they were about everything. I was also enrolled in university at the time. They were also very accommodating, even if a little perplexed as to why I was leaving. Nobody knew what it was then, but it helped me to have people give me space to look into what was going on physically without guilt trips. Those little things stick with you.
After my initial diagnosis of brain cancer, and despite having developed an interest in the history and science of cancer and devouring Siddhartha Mukherjee’s history ‘The Emperor of All Maladies,’ I was eager to get back to life.
I tried continuing university but found myself unhappy and disinterested. My relationship fell apart, and I became antisocial. Eventually, I returned home and reassessed my life. By the spring of 2013, I knew that cancer had taught me to focus on my long-term interests and passions, and so I applied for a BFA program in acting. But that year soon became a dramatic one. My grandmother died of cancer in July of that year. I returned to school for my first semester in September. But in early October, I was told that my own tumour was growing. My second brain surgery took place in November of 2013. This time, I didn’t have the wide-eyed curiosity or wonder of a brand new experience. Following the stress and trauma of my grandmother’s death, I felt emotionally spent and exhausted. A week after my surgery, I suffered a partial stroke, a complication, which left me with a permanent speech disability called anomic aphasia — an enormous disadvantage for would-be actors. After intensive radiation treatment in 2014, I returned to the acting program, where I struggled immensely, due to aphasia and to the effects of brain fog and radiation therapy.
I was very strong physically, but that has all changed.
When it all happened, I had just been accepted into school to become a mechanic. At the time, I was very strong physically, but that has all changed. I know I could never do that kind of physical work now. I got kind of depressed wondering what kind of work I could do. Recently I have figured out that I would like to be a social worker as I found they were so helpful to me through this and that inspired me. I felt so useless during my treatments as I had no clue what I would do for a career, but now that I have made this decision, I feel like my life has meaning and is purposeful again and I feel like I am on the right path.
Before my diagnosis, I was the marketing director for the Nature Conservancy of Canada.
I occupied the city in a different way before than I do now; the places I went moved in different circles to those I visit now, even though they occupy the same ground. For example, I might still get off at Queen's Park, but in the past, I might have been heading to question hour at Parliament whereas now it's to go to the hospital.
Ten years after my initial diagnosis, I am still struggling, but in new ways.
An avid reader my entire life who averaged two books a week throughout my 20s, I’ve reached a point where I’m barely able to complete a book every other week. I attribute these difficulties with attention, focus, and short periods to my brain being unable to process written language (because of the cancer and the treatments). The lack of this comfort that has always helped me feel grounded has impacted my self-identity in a negative way. I worry about my future in terms of career and employment.
Finances have been a big problem for me.
There was a time when I was waiting for my disability to come through that I just didn’t have any money to pay rent or for food. My roommate and childhood friend had moved out unexpectedly, and my disability insurance was reluctant to give me long term disability. Luckily, my grandpa helped me out otherwise I don’t know what I would have done.
I had to move in with my grandpa in the summer of 2019.
Moving back home with my grandpa was very tough mentally as I am very independent and have always worked and looked after myself. I became emotionally numb the four months when I was home. I could no longer see my girlfriend every day because my grandpa lives in a different town. She was my main support and helped me so much mentally and that was really hard not being able to be with her every day. I felt so lost and useless.
My husband has a good job and I'm lucky enough to have long-term disability support.
Thank goodness! But the reality is that we still aren't anywhere near where we were prior to my cancer diagnosis. My first diagnosis was 18 months after I had graduated from my third University degree. We found out I had terminal cancer nine days before our wedding, and ten months after we bought our first house. We don’t have any nest egg or savings. I don't know how we haven't lost everything. I'm still not sure how we keep our heads above water. We have tens of thousands of dollars in student loans and had the costs of a 160 guest wedding that had already been planned. Not always, but typically in a relationship, there is that one person who does the budgeting and the financing, and paying the bills. They can tell you exactly how much hydro was last month. I am definitely that person. The only reason we're in this house is because I know where every cent goes. I have always been pretty good with money, but not to the extent I am now. Now I am a “price matcher,” a “couponer,” a “budgeter.” I belong to savings groups online. I keep track of everything! My husband gives me every single receipt that he has, and I’m pretty sure he gets teased for it. Sometimes we both get made fun of because I'll find the best price for whatever. But we have to. We don't have much of a choice. I know we are one of the lucky ones because we have one and a half incomes. I don’t know what people who are single do. If I didn’t have my husband, or if he didn’t have a decent job, I think it would have meant moving back in with my parents. And then there’s this other weird pressure. If you know you only have so long to live, what do you want to do with the time you have left? Let’s say for me, it's a year. Now there’s this expectation to answer the question, "What would you do if you only had a year to live?" - "Oh, I would travel the world!" But with what money!? There's this added pressure of “bucket lists” and concerts to go and see, and all this traveling, but the financial barriers are so high. This is especially true when you're young and you don't have any savings. It’s impossible to do all these things. We’re trying to balance that too, and it’s getting increasingly difficult. I’d like to say that the finances aren’t a big stress in our relationship, but I think finances are often a stress in a relationship even when someone doesn’t have cancer. I hold us to such a tight budget, and kind of control everything so much, I take on a lot of the stress. I worry about how he is going to do all this when I’m gone. Right now he knows that I know exactly where every dollar is and at some point, I can say, "Okay, we can't spend more than this before your payday." He doesn't know that stuff, so it’s not so much a strain on us, as it is on me.
Advice from Health Care Providers
Take time to examine your personal identity. Are you a good student? A mother? A lawyer? A jokester? A rebel? Maintaining this sense of identity is difficult during treatment and as you may lose some of your independence. Now is a time to be creative… How can you maintain your identity while confronting your illness and changing health? Instead of a student, you may become a teacher – educating others on what your experience has been like. Your identify as a mother may be changed from being the one that is hands-on and doing the day-to-day to one that provides constant comfort and a listening ear. The lawyer may find a way to work part-time, the jokester may continue to play fun pranks on the nursing staff, the rebel may get a tattoo that defines their experience. Finding ways to redefine and rediscover new parts of your identity can be a way to cope with the inevitable shifts that come with advancing disease. Additionally, there are multiple facets to your identity. Shifts in the relative importance of these facets are also inevitable. This may provide new opportunities to find things that excite and inspire you and may become important parts of your identity. Some individuals create a “Bucket List” of experiences. These may change over time and during your illness and may need to be adapted to your changing health status. Maintain a broad approach and flexible attitude and include people that are important to you in the creation of this list. This list may not be static, it can be ever-changing with things added to and removed over time.
Spirituality and religiosity
Some teens and young adults find their religious or spiritual beliefs to be a support for them throughout their cancer diagnosis and treatments. Still, others may question previously held beliefs when contemplating the meaning and cause of the cancer diagnosis. Questions such as “why did this happen?” or “did something I do cause this?” may be contemplated by individuals facing cancer. Other questions related to the potential for afterlife may be more common when nearing the end of life. Similarly, friends and family members may also find support and solace, or potential distress and isolation, when considering their own religious and spiritual beliefs in the setting of your illness. Mismatched support styles may lead to conflict. For example, if you are questioning your previously held religious beliefs and the presence of an afterlife and your spouse or parent is finding support in prayer and closer spiritual guidance, conflicts may arise. Being open and clear about what questions you are contemplating, both big and small, with your loved ones may help to relieve distress and reduce conflict. Also, being able to listen to others as they ask questions or express beliefs without judgment or dismissal may improve your ability to receive support from others.
I don’t really think about death and dying.
At least not every day. If it happens, it happens. Right now I am just focused on my goals – and what I can do while I am alive and that’s what pushes me forward. Perseverance. Especially my goal of helping others. When I felt I couldn’t do anything physical, I felt lost, but now I know where I want to put my energy. I know I want to help others.
Daily life is a bit rough.
Even before the cancer, I was having a bit of an adjustment period because my back actually quite limits me. Sometimes the chemo can make things a bit easier or a little bit worse depending on how it affects my body and what pain meds I'm on. I get tired really easily because of the chemo so that inhibits how much I can play with my kids, how much I can do around the house, and sometimes I'm just tired and want to go to bed. At the same time, I want to stay up and watch a movie with my husband, or I want to take the kids out to the park. It becomes very limiting, and you have to start rationing your energy throughout the day.
We slowly adapt to other things that happen to the point that your life becomes kind of unrecognizable.
I think about that a lot, like how completely different my life was. I hardly ever came home for anything. I used to spend my days going to the office and working, and that was the shape of my life. It is all so different now.
The anxiety is like an itch that never really goes away.
It’s hard to brush it off, especially if I get a sore neck or a bit of a headache it brings everything back to when I was first diagnosed. It really kicks in for me about two weeks before my MRI. I have them every 3 months. Once I get the news that there is no sign of the tumour, I can relax a bit, but then it slowly kicks in again and is in full gear once again about two weeks before the next MRI.
Now I know so much more about hospitals than I thought I would ever know about hospitals and how they work.
It's like in Italo Calvino's book Invisible Cities, because they are all sort of overlapping concentric circles, occupying the same space but not at the same time. I think of hospitals in the same way, as a previously 'invisible city' for me. Within the hospital, there are their own cities with their own specialists and waiting rooms in the hallways that are like roads between them. I wasn't used to all these things like all the machines and the beeping, and then it slowly becomes normal, your new normal, what normal is.
Cancer is your life now.
You have an entourage of doctors who follow you, you have medications you are constantly taking. You are living with pain constantly, and in some ways, it's like living with a chronic illness. It's not like a cold when you can eventually say "Ah, I'm glad that's over." Every morning I wake up and have pain, not only in my ribs but also in my chest. I have spasms of pain throughout the day, and it can be hard to even go out. When I'm on my chemo, I'm exhausted. I crash after supper often and my husband puts the children to bed. And that becomes our new normal.