What Your Cancer Center Doesn’t Tell You about Chemotherapy
Most cancer patients, when scheduled for chemotherapy, are first sent to a chemo training session with a nurse or other health care provider. In this session you are given a lot of information about the drugs they’ll be administering, potential side effects, what you should and shouldn’t do while in chemo, and so on. There is so much information that you can feel like you’re getting a good idea of what chemo will be like.
However, there are a plenty of things they don’t tell you about chemo—important things—that you figure out a few weeks into it. Some are disillusioning and because of that, I debated with myself about whether to even write this. But then I asked myself: would I have made a different choice had I known these things beforehand? In my case, I’d still have chosen chemo–but had I known what I know now, I’d have spent less time banging my head against the wall and would have known when to turn outside my medical team for help.
1: Your medical staff cannot predict how well you will tolerate chemotherapy.
Some people do well on chemo and for others, it’s a side trip into hell. Your doctor cannot know how chemotherapy will be for you.
I had a friend who consulted with an oncologist who told her that his patients tolerate chemo just fine, working full-time and carrying on life as usual without missing a beat. He seemed to be promising that it would be the same for her. I’m relieved that she chose another oncologist (for other reasons) because as it turned out, her experience was not so stellar. I’d hate for her to feel like she was somehow not as good as her doctor’s other patients.
Truth is, bodies respond differently and there isn’t a good way to evaluate (in advance) how well a body will respond to chemo. Don’t kid yourself into believing that weight, diet, fitness level, eye color, health history, or positive attitude will guarantee anything; chances are that your body has never been through anything like this before. (Though I will tell you that a positive attitude makes other things easier on you.)
2: Not all the side effects are listed in the handouts.
Even if there are 20 different side effects listed under the drug you are prescribed, I promise you that’s not all of them. Those are the most likely side effects or the ones that your team knows about. You may get something your medical team has never seen before…that doesn’t mean it’s not a side effect or that you’re the only one suffering from it. It just means that your doctor or nurse has never had a patient who reported it.
For those of you sensitive types (like me) who have every disturbance in the force resonate through your body like waves off a tuning fork, chemo can make you question your sanity, simply because no one is validating your experience. You may get a raised eyebrow as you report Weird Symptom #203 or even a scoffed reply of, “Well, I’ve never heard of THAT being caused by chemo!” But I assure you, if you are in touch with your body, you KNOW when something new and wrong is afoot. You need to trust yourself.
Support groups and online forums are great places to get validation and coping strategies. Personally, I struggle with extreme light sensitivity triggered by my chemo cocktail. While my staff had never heard of that side effect, all I had to do was post a query to the breast cancer support board that I frequent and I had a number of women responding with, “Me too! I thought I was the only one!” I found out that it goes away within a couple months of chemo and that reassured me. In another case, when I read someone else’s description of foot problems, I immediately recognized it as hand-and-foot syndrome and was able to point her in the direction of helpful resources. We may not be doctors, but as enlisted personnel on the front lines, our experiences count for something.
3. Your medical staff is more concerned with keeping you alive than with keeping you comfortable.
A few weeks into chemo, after experiencing a week of diarrhea that required me to get IV fluids for dehydration, light sensitivity that kept me hiding in the dark during daytime hours, oral thrush, extreme fatigue and shortness of breath, as well as a bunch of other symptoms that add up to general misery, a nurse practitioner told me that she had no suggestions for a blistering, painful rash that I had developed. She added:
“You're a petri dish for us; we see what develops. You are still eating--you're not starving. You're okay.”
As angry as that comment made me—I felt anything but okay—it made me revisit my expectations of good care and adjust them appropriately. You see, up until that point, I had been led to believe that the improvements in chemo care meant that most side effects would have a solution. What I learned was that for many side effects there are no treatment options available. In other cases, the cancer center wouldn’t approve treatment with the concern that it might mask bigger issue.
Now that I’ve been through several rounds of chemo, I see why some of the health care providers are not so worried. Their concerns are infection, dehydration, and malnutrition (oh, and, of course, the spread of cancer!). From that perspective, I can see why they aren’t terribly concerned about how I can’t leave the house in daylight or how finding ways to incorporate my body into the damask pattern on my couch is the best I can do for the first 10 days of each chemo cycle. This is where your support network comes into play, because when your medical team is short on compassion, you still deserve to hear, “I’m sorry you feel like crap. It’s not fair.”
4: During chemo, your emotions are just as vulnerable as your body.
In the same way that you can’t predict how chemo will affect your body, you can’t predict how it will affect your mind and spirit. It can alter your sense of well-being, damage your self-image, or even spark anxieties or fears that you didn’t know you had.
For me, each infusion triggered a bit of post-traumatic stress disorder for a few days. I was unprepared for the mixture of shock and horror that descended upon me as I realized I had chosen to poison myself in a way that I could not take back. For a few days, I’d find myself unable to read, write, or talk about cancer or chemotherapy without feeling a wave of revulsion. I learned that’s when I need to retreat inward to recover my emotional balance. I thought that was my personal quirk, but several weeks ago I met another patient who confided that she had a similar response to her infusions. She said she wished that that was more support for the emotional processes that accompany chemo.
Having a friend or partner who observes your emotional cycles, not to mention reminds you when your response is temporary, can be invaluable. Talking to a support group, healing circle, or therapist can also be useful. Chemo is a big deal and it’s not logical to expect that it leave your emotions unaffected.
5: Turn to other chemo patients for the best tips and ideas
While your cancer center has a lot of good and important information for you, don’t make the mistake of relying on them for all your information about surviving the chemo process. Do yourself the favor of exploring online, printed, and in-person resources to learn the tips and tricks of other patients. You’ll find all sorts of information. Here are some articles to check out:
Tips from patients on the BreastCancer.org forums
Living with Chemotherapy: Tips from a Survivor
Chemotherapy and Radiation Hints and Tips
Travel Tips for Patients on Chemotherapy
And when it’s all done? You’ll be an expert. Yeah, just what you wanted.
P.S. Don't forget to take a look at the other informative articles and essays on cancer topics that I offer on my site. Additional resources may be useful to you.
Similar yarns
Technorati Tags: - ‹ previous
- 161 of 409
- next ›
Post new comment