Cancer is hard. And it continues to be hard, even after treatments are finished. Cancer survivors continue to fight well after most think they should just move on and live a ‘normal’ life. But, as you will learn, ‘normal’ is never truly normal again.
I have been blogging about facts and science of healthy living for preventing, surviving cancer and thriving on pinkribbonrunner.com. Fascinated by how the body responds so well to exercise and the healthy foods we eat, I love reading and writing about the science behind healthy living.
Exercise and wholesome foods are the path to our health and happiness after cancer treatments.
But today I want to switch, temporarily, from my usual article style. I feel compelled to write this post, which is more of a commentary, in hopes that it may resonate, give you strength and empower you to seek help, if needed, and to find acceptance and happiness again.
If you are struggling as a cancer survivor, then you need to keep reading. You are not alone in your struggles. You are NOT ugly, weak, lazy or crazy. I know you have those thoughts. I have them too. And, I hear other survivors speak and write these thoughts. It was this that sparked me into writing this commentary.
If you never had cancer but want to understand what your loved one may be going through, then keep reading. Understanding what is happening may help explain why your friend or family member just isn’t the same person you once knew. It may help you continue to support them through their seemingly endless struggles.
When you have cancer
When you have cancer and are going through treatments, you cannot wait for the day when those treatments are done.
Most cancer centers will help you celebrate by letting your ring a special bell, signalling your last day of either chemotherapy or radiation. I rang that bell twice; once on my last day of chemo and again on my last radiation treatment.
All the other cancer patients, nurses, doctors, and staff celebrate with you. They woot, clap, and cheer as loudly as they can. The celebration fills the air. It is a happy moment in time.
And then you go home.
Hope for a normal life after treatments
When we head home, we are filled with hope that we can finally get back to that normal life we once had.
Family and friends breathe a sigh of relief. They want us to get back to normal too. They have hope and love for us. But they also want us to get back to a normal life because we have been a bit of a burden on them during our struggles with cancer.
Friends have listened to our fears and worries for months, if not years. They care, they listen, they internalize it and it is hard on them. Family have helped us do chores and tasks when we were not physically capable. It takes time and energy away from them too.
As a wife and mother, I took care of my family for many years. Now the tables were turned, and they had to take care of me. Cancer is hard on them too. It is a burden to them as well. And their hope for us to return to a normal life is as much for them as it is for us. They want normal back too.
So, those last days of treatment are filled with hope. It is time to get healthy, finish up healing and get on with living a full and happy life.
But life is not ‘normal’ again
But the reality is that life is never ‘normal’ again. Cancer and its treatments continue to haunt our body, energy, and mind. We have been through a lot so far. Life won’t be the same as it was before cancer.
Now I don’t mean to be overly dramatic about this. And I am sorry that this sounds negative. I usually have a positive outlook on life. If you have been following Pink Ribbon Runner, you must have noticed my ‘Can-Do’ attitude. So, when I say that life after cancer is never normal, I am not being pessimistic. It is just the reality of the situation.
Let me explain.
Lingering Effect of Cancer on The Body
I had surgery, double mastectomies. These are basically amputations of the breast. I have scars and a flat chest. I do not miss them. But I still have on-going issues from the surgeries.
You are NOT ugly!
My mastectomy scars are thick, irregular, extend across my chest and are quite noticeable.
When I am changing in a gym locker room, I see the look of horror on the faces of young girls. Women turn away suddenly and stop talking. I am not self-conscious. I don’t hide. But I try to turn away for their comfort.
I do not blame them. They do not understand. I get it. I am different from what they are used to.
In fact, I am different from what I am use to too. I have accepted this. It is not ugly, my simply scars represent what I went through.
Itch and Discomfort
But my scars are often itchy. When I am sweaty or hot, my scars flare up and itch like crazy.
My surgery was over 6 years ago, and I still have minor pain and tingling in this area. There are some areas of skin on my chest that are numb from the disruption of nerves. But other areas are super sensitive and sometimes painful.
My scars give me grief from time to time. But I deal with those flare ups as necessary. It usually settles down after a couple of days.
Lingering Pain from Surgery
My breast amputations were minor compare to others.
Some have had limbs amputated.
There are some that have painful and debilitating lymphedema, causing swelling and disfigurement.
Some have had major internal surgery to remove tumors or organs.
Sometimes people have had tumors on visible areas, like face and neck, where scars can’t be hidden easily with clothing.
And these survivors have pain and issues years and decades after surgery. The pains and scars from these surgeries are very likely much worse than I ever experienced.
But, my hope is that you feel a little less alone, by talking about it, and knowing that other survivors are there with you.
You are NOT weak!
Surgery can lead to physical limitations that affect daily life. After surgery, I couldn’t’ raise my arms above my head. I couldn’t get my favorite coffee cup from the cupboard. And for those who know me… that is serious! (just kidding… but I do love my coffee)
I was able to get back full range of motion of my arms with months of physiotherapy. But some cancer survivors have permanent physical limitations after surgery.
Again, I know my physical limitations were very minor compared to others. Some have serious limitations where they can’t walk, eat or talk. Life is definitely not normal for them, as they re-learn skills most take for granted.
On-going Pain and Health Issues from Medications
I am on a hormonal medication to help prevent my breast cancer from returning. It is an estrogen blocker called an aromatase inhibitor. This medication can cause bone, muscle, and joint pains.
The percentage of patients on aromatase inhibitors experiencing this pain is small, thankfully. We are in the minority. Most tolerate this medication well. But I am not one of those survivors. My oncologist is helping me figure out why. Running helps to minimize my pains. So, I run.
Aromatase inhibitors are not the only cancer medications to cause this kind of lingering pain. In fact, there are many things that can cause lingering pain in cancer survivors, including chemotherapy, radiation, surgery, and cancer, itself.
The Canadian Cancer Society has a great explanation of this on their website, so I won’t go into detail. Just know that pain can last and be bothersome for years after cancer treatments are over. It is important to talk to your doctor about this.
Pain affects you in so many ways; energy levels plummet, you can’t do the things you want to do, the mind is hazy and does not think clearly, and depression can set in. It is important to address any pain you may be experiencing.
Lingering Effects of Cancer on Energy Levels
You are NOT lazy!
My bone and joint pain are zapping my energy. Sometimes I feel like an old woman, well beyond my current years. I am stiff and sore getting up from the couch. So, it makes getting off the couch so difficult in both body and mind.
I would imagine others think I am lazy now.
I used to have so much energy. Before cancer, I kept a clean house and had nice gardens. I trotted after my young children, cooked meals, and worked a demanding full-time job.
Now, it takes everything I have to get up off the couch and go for a walk or a run.
I do feel better after going for that walk or run. It gives me an extra boost of energy. So, I will go for a walk, then clean or cook afterwards. But, definitely, it is not back to ‘normal’.
I know other cancer survivors who have said the same thing. It may be due to current and continued medications, but it can also be a lingering side effects of other past treatments.
Some cancer survivors just do not have the same amount of energy, even years after treatments are done. It is real. This is not laziness. Doctor’s call this Cancer Related Fatigue.
This type of fatigue is not just feeling tired. It is a feeling of being worn-out, slow and a lingering heaviness. It is not relieved by sleep or rest. And it can have a profound effect on the quality of life of survivors.
Accepting this and finding ways to manage cancer related fatigue is a cancer survivor’s new ‘normal’.
It took me years to accept that I couldn’t do what I use to. I still stubbornly try to deny it from time to time, push my new limits and get myself feeling worn out again.
Lingering Effects of Cancer on The Mind
You are NOT crazy!
The lingering effects of cancer on the mind can be a difficult concept for some. While we can see physical limitations of cancer on the body, the effects on the mind are not as visible. It can be hard to understand how cancer alters our brain, thoughts, and behavior. But it definitely does.
One of the more well-known side effects of cancer therapies on the mind is chemo brain. The term was coined because it was thought that chemotherapy medications caused this. But it is now recognized that more than just chemotherapy can cause this.
Chemo brain can be caused from all forms of therapy, surgery, chemotherapy, and radiation. The medical term for it is ‘cancer-related cognitive impairment’. Even the cancer itself can lead to this phenomenon that researchers are trying to understand.
I suffered from chemo brain. In the year after treatments it was bad. I was forgetful, lost memories and would get lost easily, even in areas I should have been familiar with. I had trouble concentrating, was easily distracted and could not multitask like I use to. It was one of the most frustrating things I experienced after treatments.
I was referred to a neurologist who explained to me that the drugs to kill my cancer also disrupted the proteins in my brain that allow thoughts and memories to be formed. While this was upsetting, it also weirdly fascinated me. Chemo brain is real. I was not crazy. It is an actual process of protein disruption in the brain as a result of treatments. It was comforting to know this.
I was prescribed 6 months of occupational therapy where we played brain games, such as Luminosity. I had homework where I needed to practice things like facial recognition and reading maps. It helped a lot.
But even today my memory is not the same. I am more forgetful than I use to be. Some days it is awfully hard to focus and concentrate.
Journaling and blogging have helped me tremendously. I keep a notebook by my side most days. And my calendar and notes app on my smartphone has been a lifesaver. Thank goodness for technology.
I know I am not alone. There are a tremendous number of cancer survivors dealing with this. I see this question pop up almost daily. Some ask things like “am I crazy?” or “where did my mind go?”. It is upsetting and frustrating. You truly feel like you lost your mind.
Know that you are not crazy if you are experiencing these symptoms of chemo brain. It is a real medical issue. Just knowing that was a little comforting to me.
Lingering thoughts of cancer coming back
Hearing that you have cancer is a tremendous shock. But, in time, you come to terms with it and set your mind to fighting it. And knowing you survived, that your cancer is in remission, is such a tremendous relief. But you also know that it can come back at any time.
Every cough, every ache, every flu-like symptom, and every potential sign of illness immediately projects a cancer survivor’s thoughts back to the day they were told they had cancer. It never leaves us. The thought of recurrence haunts us forever.
I have come to accept this. As time moves forward, it has become less and less. But I still tell my oncologist every symptom I experience, just to be sure.
Cancer Survivors Guilt
And when we survive cancer, we think of those who did not survive. Being a cancer patient means that you meet other cancer patients. Some of those people we know have died of cancer. Why did we survive, and they did not?
These are thoughts that also haunt some survivors. It is called Survivor’s Guilt and it is a real phenomenon. It is not crazy. Cancer survivor guilt is usually treated through support group therapy and counselling.
Post Traumatic Stress Disorder
Another real lingering side effect of cancer that I want to tell you about is PTSD. This anxiety disorder is usually associated with war-time veterans and victims of assault or abuse. But it is now recognized that cancer survivors can also suffer from PTSD. And it makes sense when we understand that a cancer diagnosis, along with the sudden awareness of our own mortality, is such a life-altering shock.
Symptoms of PTSD can include debilitating anxiety, fear or anger, trouble sleeping, avoiding people or places that bring back memories, nightmares, and substance abuse or other self-destructive behaviors.
If you are suffering from symptoms of PTSD, you are not crazy. It is real too. And you need to seek out help for it. Tell your doctor or mental health professional. It is okay to reach out!
It is okay to not be okay!
But you need to tell someone when you don’t feel okay.
Live Your New ‘Normal’
So, as you can see, life is not normal after cancer. We are forever changed from the time of diagnosis and we continue to change through treatments and beyond. Cancer affects our body, mind, and energy, sometimes for the rest of our lives.
But while some of these side effects are life-altering and troublesome, it is possible to live this new normal. It is possible to work through things that are bothering us, with the help of our doctors, support groups and mental health counselors. You just need to reach out and ask for the help you need.
You don’t need to do this alone!
We can adapt and adjust. It just takes time and that ‘Can-Do’ attitude I told you about earlier.
So, save some of that hope and strength for a ‘normal’ life. Apply it to your new normal, whatever that may look like. Seek the help you need.
Embrace change and look for the positive.
Heck, we survived cancer! We can continue to survive, thrive and strive for happiness again.
We got this!