In My Experience – A Young Adult Caregiver
Being a caregiver to a loved one with cancer could never be described as easy. It sucks, very much actually. For me, most of all it sucks because as much as I want to solve all of our cancer related problems, it is not within my power to do so. I can only do so much, and even then, am I doing enough? Personally, I never feel like I have done enough.
I’m a full time dad too
Every caregiver’s experience is unique, just like every person with cancer has their own unique experience. What your loved one needs most at times is very different than what another would need. I don’t dare present this post as a form of advice, but if I were to say so succinctly, I think it comes down to being there for them, listening, and trying your best to fill in the gaps where your loved one needs it. This can mean physical help, spiritual or emotional support. If you are in a situation with a young family like ours, this can also mean shouldering more of the burden to take care of your children, doing housework, yard work, or anything really that needs to be done.
I’m a numbers guy and a wannabe scientist
There are many things that caregivers do to help their loved ones. For me I have tried to leverage my interest in science and a late blooming love of data to help our situation.
I am limited in what I can do to directly impact Sara’s cancer, but that doesn’t stop me from trying my hardest to pour over the entirety of scientific literature related to colorectal cancer, finding compounds, polyphenols, upcoming drugs, experimental treatments or off-the-wall ideas about ways to make living with cancer easier, or something that gives the immune system a boost to fight off cancer cells. With everything I have tried to get Sara to take, I am not surprised that our spice cabinet has been overrun by supplements that she doesn’t take, but at the time I thought would be a great addition to the ridiculous regimen compounds. I shudder to think about the money I have spent on these items, but I know I would do it again in a heartbeat.
Here are just a sample of the things I thought to push on her, essentially in what I had dubbed, the “Natural Born Killers” Regimen. I hope to talk more about this thing someday, in the odd chance that someone is interested in hearing about it:
Ketogenic Diet
Intermittent Fasting
High Intensity Interval Training
Meditation
Silymarin
Cordyceps
Hesperidin
Black Seed
Cannabis
Astragulus
Quercetin
Bromelain
Resveratrol
Curcumin
Black Seed
EGCG
Fish Oil
Various Probiotics
Cimetidine
Metformin
Aspirin
Fucoidan
Fucoxanthan
Curcumin
Panax Ginseng
Reishi
Zinc
The problem with most of this regimen is that the involved studies showed benefit from the activity or compound from near-chronic usage or execution of the activity. Curcumin, as an example, has been shown to have some effects, but at dosages that are probably too much to take orally, especially in combination with all of the other supplements/compounds. With the stresses and side effects from treatment, many of these have been impossible to truly leverage. But we won’t stop trying – and I won’t stop looking for that next thing that might give us a leg up.
Being a caregiver for a young adult
I know I never expected to have to be a caregiver or have someone be my caregiver until I was an elder. Cancer at any age is terrible, and I know I am not alone in my hatred of it.
While many days it can be a thankless role, you are doing what needs to be done, and you cannot really blame your loved one for that. They are going through hell. I often find myself wishing I could switch places with Sara, to ease her burden somehow. Over time, instead I feel myself failing in the many roles I’ve had to play. I’m a husband, a father, a companion and best friend. A housekeeper, chauffeur and chef – but not a handyman. I can never pretend to be handy at all, so we’ve had to rely on my father in law for such things.
Another key role is to support our family financially. I am failing this one miserably.
Many families are hurt by medical expenses when a family member is diagnosed with cancer. For us, this has unfortunately been exacerbated in our situation due to me being laid off earlier this year, forcing us to use COBRA insurance. Also, I have been unable to secure employment, which has been a challenging addition to our struggles, and even with the generosity of family and friends, our situation is becoming dire.
Very tough times, yet we are not alone in such struggles:
In a 2016 review of over 45 studies, the Journal of the National Cancer Institute published findings that up to 62% of cancer patients went into debt, 55% accrued at least $10,000 in debt, and 3% filed for bankruptcy. Cancer costs exceed an astounding $80 billion in the US every year, as far back as 2014 it was roughly $87.8 billion. An earlier study found that 42% of patients lose their life savings during the first two years of treatment.
I can say from our experience, yes this is certainly true. And yeah, we’re three years in.
It’s important to laugh and have fun, too!
Just be present
With all of the roles involved for caregivers, I can’t stress enough that I think the most important action is to “be present.” Cancer patients are going through a whirlwind of emotions, and in many cases, it is a long slog marathon whirlwind, that can be exhausting. But being present is key; just being with them when talking isn’t required, giving an ear when needed, advice when it is requested, a laugh when the mood is right, or a hug whenever you can.
In closing, I would just like to say that this is indeed just a small piece about my experience, and there truly isn’t a right or wrong way to be a caregiver. You’ll find your own way, you will make mistakes, you will help your loved one through some hard times.
If you or a loved one are ever in need of additional support, we encourage you to connect with Love Your Buns on Facebook, or contact us through our website. Love Your Buns has support groups and connections to other resources who can help.
Love Your Buns is a non-profit initiative aiming to remove stigma and improve awareness around rectal cancer, its prevalence and its symptoms. A growing epidemic in young adults, rectal cancer is easy to remove if caught early, however due to a variety of reasons, young adults are not likely to seek screening options like colonoscopies. This gap in screening is leading to more advanced disease at diagnosis and more challenging and strenuous treatment. We're working to Educate young adults to increase awareness of the signs and increasing prevalence of Rectal Cancer and to Empower informed decision making and Improve quality of life in Survivorship.
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