It’s not like anyone plans on a cancer diagnosis, so how are we supposed to know what to do with if we get the news?
There are a lot of things we learn too late. Either it’s too late to utilize that resource, or we’ve already spent hours upon hours of online research, only to realize it was a waste of time and sanity.
This blog is my effort to help those who are diagnosed after me. And this article specifically is meant to help those who are recently diagnosed and give them tips I’ve learned along my own path. And if you want some action steps I recommend, check out this article.
A cancer diagnosis is NOT your fault
Let’s start off with a big one.
Unfortunately, cancer patients tend to face a lot of patient blaming. You start telling family, friends, and coworkers about your cancer diagnosis and you’re bound to receive some questions trying to place blame or figure out the cause.
Does it run in your family? (i.e. Is it genetic?)
Do you smoke?
Do you use a lot of chemicals in your home?
Sure, some people may not be trying to place blame and just don’t realize how it comes across. But for the most part they’re either trying to assess their own risk (like with the genetics), or they’re jumping to conclusions as to what you did wrong.
Cancer is a complicated disease. Full stop. Doctors and researchers can’t always identify what triggered tumor growth. If they could, they might have a better idea how to prevent it.
So before you face patient blaming or start down the path of feeling guilty for somehow bringing this on yourself, please please please know that this is not your fault!
Getting a professional photoshoot to honor my one year cancerversary was one of the best decisions I made in treatment! If this is available to you, or if you have a friend who can take decent photos, I absolutely recommend doing this! Photo credit to Jaclyn Coley in Columbus, Ohio.
There are a lot of “cures” for cancer out there
Here’s another big one to save your mental sanity, and it goes hand-in-hand with the patient blaming.
It’s rather disgusting, but there are a bunch of people and companies who make a living by selling cancer “cures.”
Maybe it’s the friend trying to get you to buy her expensive Frankincense essential oil. Maybe it’s an article you read about celery juicing, high-dose vitamin C, alkaline diets, or coffee enemas. Perhaps it’s a book at the bookstore telling you how they personally beat cancer and you can too. It could be a nutritionist of some sort selling you a meal plan, coaching, or advice on a vegan lifestyle.
And no, I’m not bashing essential oils or a healthy lifestyle. I used essential oils during my cancer treatment, and healthy eating and exercise are obviously a good idea. I also know friends who use celery juice, vitamin C therapy, and coffee enemas and feel better doing so.
What I am bashing are people who use fear-mongering against a group of people who are already scared and confused, just so they can make a profit.
There is no cure for cancer. What may work for some doesn’t mean it’s a universal fix. And some of those “cures” are shown to actually cause more harm, or just be flat out ridiculous. (Like the alkaline diet. That’s not how your body works.)
Point is, be aware of the potential money gimmicks, and don’t be drawn into these claims. If, however, you find something that sounds intriguing and want to do it anyway, just be sure to do some research first so you don’t risk further harm to yourself. I say that with love. You have enough going on as it is.
Talk to a counselor
When I was diagnosed, my hospital’s nurse navigator offered the services of a social worker if I needed someone to talk to. Additionally, I heard of CancerCare and similar organizations that offer free counseling for cancer patients.
At the time, I didn’t think I needed it. But holy crap, y’all, a cancer diagnosis is still a trauma! Between the anxiety of recurrence, the surgeries, the effect on your job and mental health… It’s a lot.
I’m not opposed to counseling at all, but I didn’t feel my situation was “bad enough” to warrant talking to someone… And with that thinking, I did myself a disservice.
Now, I highly recommend counseling for all patients after a cancer diagnosis if it’s offered, even if just for a couple months! It may be more beneficial to speak to someone who specifically has experience with oncology patients. Just something to consider.
ACS has a cookbook
During chemo treatment is not the time to be following diets and judging what you eat. You need calories, your body is fighting, and you’re likely going to feel fatigued or nauseated. Be gentle with yourself.
That’s first and foremost.
But I didn’t learn until after chemo that the American Cancer Society has a cookbook with recipes based on your side effects! Whether you’re dealing with nausea, trouble swallowing, constipation, changes in taste, or a few other common side effects, this book has 130 recipes to help you eat well and address the side effects.
Because I didn’t hear about it till too late, I can’t say from personal experience how helpful it was. But I do have a few friends who used it and found it helpful. If, God forbid, I were ever to do chemo again, or had to care for someone else in chemo, I’d certainly order a copy.
My first chemo as Adria was getting pumped through my port. That excitement only lasted a few hours… Then the nausea kicked in. 😉
So many organizations to help!
Chemo can really affect your ability to keep up with the housework, not to mention finances.
Pink Ribbon Girls operates in several states to help women with gynecological cancers who need a hand with cooked meals or housecleaning. The Josette Beddell Memorial Fund offers financial assistance for those in Ohio who need a little help because of medical bills. The American Cancer Society may provide transportation and lodging for treatment. Susan G Komen may provide transportation or child care during treatment.
Some of these organizations are more local and location-specific, but organizations to help with food and monthly house cleaning during treatment are not uncommon! So if you do need a hand taking care of the family, talk to your nurse navigator, who should also know some resources.
Cancer falls under the ADA
Perhaps this isn’t surprising, but a cancer diagnosis is covered under the Americans with Disabilities Act. You have legal rights and protections as a cancer patient in the workplace!
This is especially helpful if you need some accommodations made during treatment. Say for example your cubicle is near the kitchen and the smells make you nauseated because you’re doing chemo. It’s not out of line for you to ask to have your cubicle relocated while you’re in treatment.
There are a lot of details, so if you’re interested in diving into this further, check out Cancer + Careers. They do webinars, have conferences, and are available to chat if you have any questions about how the ADA can help you, or if you’re looking for a new job after treatment.
Talk to your doctor about chemo and fertility
This can be a big one… Some doctors are really good about talking to their patients about the effects of chemo on reproductive organs. Others… not so much.
Perhaps it’s that doctors are more focused on killing the cancer, and that’s great. But sometimes it’s nice to have a heads up of how chemo will affect the body and what we can expect. And from what I’ve heard, a lot of doctors aren’t good about communicating that. I know of several women talking to their doctors about having kids, only to find they’re too far into treatment and fertility preservation is no longer an option.
So don’t be shy about being your own advocate (regarding anything, really) and speaking up to start the conversation. If you’ll want kids at some point after treatment or just want to know what to expect with menopause, ask!
Document the process
This is a personal one. But if I had it to do over, I would have documented the journey better. I would have journaled more and taken more pictures. I even would have done a couple professional photoshoots, like after my mastectomy or during chemo.
Some people don’t want to be reminded of what they endured during treatment, and that’s totally fine!
At the time, I felt like I was journaling a lot. But I really hadn’t done anything “a lot” because I just didn’t feel up to it.
And though we may not think of cancer treatment to be the time to have photos taken, it’s actually incredibly empowering! I did a boudoir photoshoot almost a year after diagnosis and before my reconstruction, and it was incredible! I think it’s a beautiful way to celebrate how far you’ve come and that you’re still alive. And a good photographer will help you see your own beauty regardless of the chemo and scars.
Learning how to white water kayak with First Descents. This was one of the first few cancer retreats I did, and it was an incredible experience!! Photo credit to “Well Done” in the FD family.
Start looking into retreats early!
Let’s have a fun one to wrap things up.
You likely have enough upsetting research you’re doing regarding side effects, how to prep for a mastectomy, etc.
When you need a pick-me-up, start looking into retreats for cancer patients!
Some programs don’t have a time limit, but some require that you only be a year or less out from diagnosis. Two of these retreats include Little Pink Houses of Hope and Mary’s Place By The Sea. (I highly recommend Mary’s Place, by the way!)
If you’re interested in getting a start on your research, you can check out my previous blog post to peruse a list of retreats and camps.
Final thoughts
A cancer diagnosis is just overwhelming…. There’s so much to learn and know in order to prepare, but some of it you just don’t know till you get there.
My hope is that some of these points will prove helpful for you and save you time, money, energy, sanity, or all the above.
For those reading this who are further out from diagnosis, please feel free to leave a comment with what you wish you knew when you were first diagnosed!
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I wish I had asked about all alternative treatments instead of just going with what my doctor recommended.
Like you I wish I had documented more and taken more pictures.
I wish I had gotten counseling.
I wish I had known about more resources.
I wish I had joined a support group immediately. They are invaluable.
Thank you for your insight.