Kelly from Missouri wrote and told me her devoted husband is worried sick over the fact that she has not bounced back yet from breast cancer treatment. He has flashbacks because Kelly’s dad had a cancer diagnosis, then sat around the house for two years, then died. Kelly’s husband is concerned Kelly will have the same fate.
Kelly and I were discussing that even though she has completed active treatment, she still feels very much like a Cancer Patient. She does not feel like a Cancer Survivor. When I reviewed Kelly’s journey over the past 10 months, it is understandable that she has not been able to make that transition from Patient to Survivor. I think you will agree with me.
In 10 months Kelly has endured a triple lumpectomy then a bilateral mastectomy because she had cancer in both breasts and each was a different type. Kelly then had separate surgery to remove more lymph nodes. Three weeks later Kelly started 4 months of dose dense chemo followed by 33 radiation treatments. In the midst of this, Kelly found out she had the BRCA/2 gene mutation. She finished Radiation on January 2, 2013 after having severe burns that caused her horrific pain and discomfort. Radiation had to be halted then restarted. And at the end of treatment, Kelly had a Hysterectomy on January 11, 2013, also related to breast cancer!! In between all of that there was port placement, port removal, tests, tests and more tests, scans, scans and more scans, and medications galore. Is it any wonder Kelly does not feel like some amazing Cancer Survivor?
It is frequently said that the two most difficult days in a Cancer Patient’s journey is the day they are diagnosed and the day active treatment ends. Once you are finished with active treatment and are declared cancer free, the world looks upon you as suddenly you are all better again and are now some marvelous, heroic survivor.
When you go from Normal Person to Cancer Patient, it is forced upon you. Most of your choices are made for you, and you become a puppet for the medical teams that treat you. However, when you go from Cancer Patient to Cancer Survivor, suddenly you are thrust back into the world from the cancer bubble, like a bird thrown out of the nest. Once you get thrown out of that nest, I have found that so much of the journey has just begun. I shared that with Kelly and her husband.
Here is what isn’t over when you finish that last treatment:
1) Fatigue and exhaustion from a year or more of treatment. I was cautioned by my Oncologist that it can take one to two years to get through this part of the process. Blood counts are still recovering and so is every part of your body. It takes time.
2) Chemo Brain – this is really overwhelming and very frightening. In my case, I’ve always had a good memory and very good cognitive abilities. Suddenly, those were gone. That absolutely terrified me, so I started a rigorous training schedule for my brain. I am happy to report after six months, I have improved dramatically. I am now able to carry on a conversation without constantly searching for words and no longer do I get lost while driving in familiar areas.
3) Side effects from ongoing medications - The majority of breast cancer patients take either Tamoxifen or an Aromatase Inhibitor like Arimidex. These can cause severe side effects. I have severe hot flashes and night sweats which wake me up a minimum of four (4) times per night. And the joint pain is horrible. However, I have it easy compared to a lot of women. These drugs will be part of your life for 5 to 10 years, so it is necessary no matter what the side effects, you make the most of it! And that is difficult.
4) Lymphedema - If you had lymph nodes removed during surgery and suffer from Lymphedema, you know the many long-term effects of this condition and how it is something you have to deal with on a daily basis. Because I recently picked up a heavy item without thinking (a heavy bag of groceries), I had a huge flare up of Lymphedema which requires much attention and treatment.
5) Medical bills – the reality of the expense of cancer can be overwhelming. I have received letters from so many who have unbelievable deductibles and co-pays or no insurance at all. This can quickly add up to thousands and thousands of dollars or with no insurance, hundreds of thousands of dollars. The stress for these women and their families is incredible.
6) Relationships – Also, I receive numerous letters from women who have realized their marriages or relationships with their significant other are in bad shape after the stress of cancer. Some women have actually become victims of domestic violence while going through cancer! Some are now dealing with separations, divorce, lawyers and the court system. They are not only worried their children won’t have a mom to raise them because of cancer, they are dealing with the break-up of their marriage.
6) Earning a Living – perhaps you have had to quit working during cancer treatment or find that your old job no longer is a match for the new, post-cancer you. Certainly, that brings its own unique set of challenges.
7) Fear of Recurrence – Learning to live with this is probably the most challenging thing. Ask any cancer survivor.
But here is the encouragement. At the 6 month mark of finishing active treatment, I began to notice a major shift in how I was feeling. I began to feel a little more like a survivor and less and less like a patient. Going from daily or weekly medical appointments to monthly or every 3 months drastically contributes to that fact! Just being away from medical facilities is healing!
I’ve written before about the dangers of depression after active cancer treatment is over. Be on the lookout for this and do something about it before it becomes debilitating. When treatment ends is when depression often sets in.
The best wisdom I can impart is give yourself time and lots of it. No longer can you say yes to every committee that comes your way, every social event that you are invited to, or every cry for help that comes along.
I do observe that some Cancer Survivors feel they have to really live life to the fullest and be busy every second, because they do not know how long they have to live. This could prove dangerous over the long haul, I believe, as it may be causing too much stress to an already overtaxed system. Balance is the key.
It is time to refocus, rebuild, and renew. Now is the time to see a counselor to help you focus on new goals, new dreams, and new hopes. Do not be too hard on yourself.
And to Kelly and her husband…give it time. You have both been through a war. The healing will be slow and steady. Try to enjoy the process.