Life after a cancer is different. Not only that, but cancer changes people. And, depending on the individual and how they’ve processed their journey, that could mean that life is better, more difficult, more meaningful, more stressful, scarier, or easier than before cancer. It might even be all of the above.
Regardless of how it’s different for a particular cancer survivor, there are some things that are true for most cancer survivors that you should know. Here’s what cancer survivors want you to know about how cancer has changed them, what it means to be a “survivor”, and how to treat them post-cancer.
Just Because the Main Cancer Treatments Are Over Doesn’t Mean the Side Effects Are
There are both short-term and long-term effects relating to standard cancer treatments such as chemotherapy, immunotherapy, radiation, and surgery. Most people are aware of the short-term effects, but not so much the long-term side-effects.
Some of the long-term physical side effects of these therapies are:
- learning, memory and attention difficulties;
- extreme fatigue;
- digestive problems;
- lymphedema;
- infertility; and
- pain from surgery or phantom pain.
These are only some of the side effects that continue post-treatment. These symptoms can hang on for years. And sometimes they never go away.
For example, I battled extreme fatigue (to the point where sometimes I couldn’t function without a long nap) for over 2 years after my breast cancer treatment ended. And, although it’s better now than it was for the first year post-treatment, my memory has never been the same.
Moreover, many patients take long-term medications to prevent their cancer from coming back, which have additional negative side-effects.
What does that mean for you? Be patient, understanding, and take these side-effects seriously. I know that it’s frustrating when someone is forgetful or tired much of the time. But trust me when I tell you that it’s more frustrating to the person who’s forgetting and/or tired (and has little to no control over it).
What Cancer Survivors Want You To Know The Most: We still Need Support (Especially in the Early Post-Cancer Days)
When I was a cancer patient, people came out of nowhere to care for my family and I. They brought dinners, took my boys on play dates, and consistently checked in to see if I (or my family) needed anything. There was also built-in support from my doctors and nurses (and a host of support groups that I could join to help me through my journey).
And then one day it ended – almost overnight. Although I understand that it needed to end (at least the level of support that I received for over 8 months), it was somewhat jarring to go from near-constant (and almost smothering levels of) support to absolutely nothing.
Here’s the thing that most people don’t understand: the cancer journey hasn’t ended just because all the big treatments are over. As I mentioned above, there’s plenty of healing to be done and numerous negative side-effects to navigate. Plus, the emotional and mental journey is just beginning.
Most cancer patients are so busy trying to survive and get through the negative effects of treatment, that they don’t fully process how cancer is affecting them within. But once treatment ends and the support goes away, they finally have the time and space to process what they’ve been through (and are still going through emotionally).
And they need your support when going through all that.
How can you help? Pick up the phone and check in every so often. Offer to do something simple yet specific for them, such as:
- bring them dinner or take them out for something fun;
- take their dog for a walk;
- run a few quick errands for the; or
- take their kids to/from school.
Those simple, small things are much appreciated and help the survivor know that you’re there to help them when needed.
What Cancer Survivors Want You To Know About Fear (It May Never Go Away)
Becoming a cancer “survivor” doesn’t make you magically brave or strong. And the go-to “you beat cancer” and “you’re such a fighter” attitude can sometimes be unhelpful (even hurtful).
Don’t misunderstand me: sometimes that attitude is called for and helps. But it depends on the individual survivor and how they’ve processed what’s happened to them (plus where they are on their post-cancer journey).
Regardless of what people seem to think, cancer survivors don’t know whether they’ve won. Despite all the talk about how society is “beating” cancer, the sad fact is that recurrence is very real and not all that uncommon.
Too many of the statistics you hear are over-generalized and don’t take into account all the different factors that go into the risk of recurrence. And that makes them garbage (because they’re not applicable to any particular cancer survivor).
For example, risk of breast cancer recurrence depends on many factors, including:
- the biology of the tumor (e.g., what type it is);
- the size of the tumor;
- whether the tumor has spread to surrounding tissue or lymph nodes;
- how aggressive the tumor was (e.g., how fast it was growing and how different or similar the cancer cells looked as compared to a non-cancerous cell).
Moreover, most recurrence rates are at a 5-year post-cancer date. Yet cancer can come back after that. And some cancers, such as estrogen-receptive breast cancer, are prone to late recurrences (which means they come back 10 or even 20 years later).
What cancer survivors want you to know (and do): understand that we may not truly be “cured”. So, don’t refer to us that way unless we do so ourselves.
What Cancer Survivors Want You To Know (That Will Surprise You): We Have Guilt
Many cancer survivors have extreme bouts of guilt over the fact that they survived. They often can’t help but wonder why they’re still living when others weren’t so lucky. And what makes it worse are the friendships that are made during treatment with other patients (who don’t all make it through).
There’s a name for this: it’s called cancer survivors guilt. And it’s something I know a lot about (and wrote about it here).
Unfortunately, not much is known about cancer survivors guilt (I’ve yet to find any studies). And people don’t talk about it a lot.
If someone you know is dealing with survivors guilt, the best advice I can give you is to listen to them. They most need to talk it out. I found that writing about how I felt helped me sort through my feelings and get to a place where it didn’t feel so overwhelming.
And if you feel they need more, tell them. Recommend that they join a support group or seek professional help.
Whatever you do, don’t try to reason it out of them. Survivor guilt isn’t necessarily rational (and telling them why they shouldn’t feel this way won’t help).
What Cancer Survivors Really, Really Want You To Understand: We’re The Same Person, Yet Different Too
This is one of the hardest things for folks to understand (and what cancer survivors want you to know about them most of all). Cancer survivors are still your loving spouse, son, daughter, mother, father, friend, or colleague.
They’re human beings who feel, have dreams and desires, and want to succeed in life. And they don’t want your pity.
Yet cancer survivors are different too. Here’s how they’re different:
- they see themselves and the world around them differently than before;
- they find new meaning in things they didn’t before; and
- their perspective on the meaning of life has changed.
Sometimes these changes show up in small ways, such as how they treat others on a daily basis or in how they take more time for self-reflection and/or self-care. But sometimes, these changes can have a huge affect on their lives. I’m a perfect example of this, as I left a successful 18+ year legal career to start an executive coaching practice.
What does this mean for you? Give them your love, compassion, and attention as you did before but pay attention to how they’ve changed. Treat that with respect and understanding (and maybe even learn from them, as there’s lots that can be learned from someone who’s faced their mortality).
[Recommended reading: 10 Powerful Life Lessons On How To Be Happy (Thanks to Cancer)].
What Cancer Survivors Need You To Give Us: Time To Figure Out How We Have Changed
Although most survivors have an inkling that their cancer journey has changed them soon after treatment has ended (maybe even prior to it ending), it takes a while to figure out how and what that means for them going forward. First, most cancer survivors stubbornly try to go back to their pre-cancer life even though that’s not possible.
This relates to the lack of control they had as a patient and the need to go back to their “normal” pre-cancer life as part of regaining some measure of control. Although this doesn’t work, it often takes some time before cancer survivors are willing to admit this.
And once they do, they then need to go through a process to figure out what that means. They need to ask some questions of themselves to figure out what their new “normal” is, like:
- How did cancer change them?
- What are their priorities post-cancer?
- Who do they want to be moving forward?
- How does all of the above affect how they live their lives?
I’m a perfect example of what I’m talking about. For several years post-cancer, I pretended that everything was okay and I could go back to my pre-cancer life. Yet I felt off – and as though I was watching someone else’s life play out before me.
After doggedly pretending that nothing was wrong, I finally decided that I needed to go through a self-discovery journey and see where it took me. It’s what ultimately led me into coaching.
This process is common for cancer survivors. Unfortunately, it takes time (sometimes a long time) and isn’t easy. What cancer survivors need most during this process is patience and compassion (and sometimes a willing ear to listen to our struggles).
[Recommended Reading: How Cancer Survivors Marriages Change: From Diagnosis to Remission].
What Cancer Survivors Want You To Know About Giving Advice: Don’t (Unless It’s Solicited)
This may sound harsh, but cancer survivors don’t want your opinion (unless asked) about:
- what they should be eating;
- whether they should have that second glass of wine (or any at all);
- the million supplements they need to take;
- some new holistic thing they must try out; or
- anything else about their health or how to take care of themselves.
The fact that someone had cancer doesn’t give you the right to tell them how to live their life. They have doctors who tell them exactly what they should and shouldn’t be eating, drinking, taking, and doing.
Although you mean well (you want them to continue to live cancer-free), it’s not helpful. And honestly: it’s their life to live.
And please don’t think that you have the right because your friend or loved one doesn’t do much research. Some (like me) do a lot of research. Others choose to do nothing and rely only on their doctors. At the end of the day, that’s their choice.
Besides, how do you feel when someone tells you how to live your life?
For what to say (and NOT say) to cancer survivors (and patients) so that you can stop feeling awkward when talking to them, read this.
What to Do Next (as a Survivor or a Friend/Family Member of a Survivor)
If you’re a cancer survivor (or a friend/family member of a cancer survivor) who is trying to find your way back to “normal”, I have a few quick tips:
- you can’t go back but WILL find your new normal over time;
- be patient with yourself (you’ve entered a new phase);
- don’t fight how you feel (it will only make you feel worse and extend that out);
- find someone to talk to (don’t be afraid to speak out and talk about it); and
- reconnect yourself with your core personal values – they will ultimately guide you to your new answers.
Want help with figuring out what your values are and how to realign to them? Read my article about How to Redefine Yourself Into Happiness.
The key to your post-cancer treatment phase is to give yourself grace. You’ve earned it!
