Transitioning from Cancer Patient to Cancer Survivor

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.

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Please check out my online shopping store at www.hellocourage.com   or click on the sign below – I had these custom Subway Signs made with words that were important to me to make the transition.

Survivor Sign Black

 

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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.

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12 comments

  1. Denise, this is beautifully written and so apropos…it takes time to adjust to the new normal after breast cancer and certainly after the many surgeries etc that she’s endured. I understand her husband’s concerns, but it takes time and simply being supportive, patient and caring will help her to heal faster ~ at her pace and not at what’s expected. Hugs to you and all! xo (I’m an 11 year breast cancer survivor myself)

    • My husband has been wonderful through all this. I always tell people he’s taken much better care of me than I would have for him if the situation was reversed. He’s just worried about my inactivity since we’ve seen first hand what that did to my Dad. I will continue at my pace and I’m not going to let anybody push me to do more. I’m pretty stubborn!

  2. Holy cow… she’s had a rough go of it! I’m a 4 month chemo, double mastectomy (elective on one) survivor, just beginning radiation. I’m going back to work on Friday and am glad, but a bit worried about the prospect. I have been through a war. People ask my husband how I’m doing and he says “she’s getting stronger everyday,” and that is true, but the little nasty side effects are stunning. Hot flashes and night sweats, neuropathy in my toes and I keep losing toe nails, the spacers in my chest muscle feel like rocks, and of course my awkward buzz cut that makes people stare. I’ll never look at super short haired women the same way again! Thanks Denise for continuing to write the best blog about living through this. Yours is truthful and hopeful with out the spoonful of sugar most people want to force down your throat!

  3. Hi Denise, Just finished reading your post and you never cease to amaze me! You have such words of wisdom and written in such a caring and compassionate way. Surely you do more good in the world than you can ever imagine. Praying you can keep up on your mission for all who need to hear such encouraging and insightful words

  4. Wow–You have prepared me for the future. Thank YOU! Two more infusions and then onto radiation and I already consider myself a survivor just to have gotten this far. When you know a little about what to expect, well, it’s is a slight ray of hope until the sun shines through. Thank you for your gift of kindness is knowing just how to communicate to those of us that are still climbing the mountain.

    God Bless Us All,
    @

  5. You absolutely nailed it!! I am a 2 1/2 year survivor, double mastectomy, failed tissue expander placement due to infection, chemo and radiation. Returned to work but quickly realized it is time for me to retire. Still fight the chemo brain issues and the everlasting fatigue. Only a few months now to official retirement then I can set the pace and improve some more!
    Thanks for your post!!
    Meg

    • I wasn’t a good candidate for reconstruction at the same time as the bilateral mastectomy and I decided not to have it done at all. Seriously, chemo brain still, after 2 1/2 years? I used to be halfway intelligent. Now I can’t remember where I’ve kept things for years.
      Kelly

  6. Hi Denise. This is right on time for me, as I only have 7 more RAD treatments out of 33! I am counting down. I get through by giving myself ‘small victories’. I think that’s the only way any of us can get through this. Once I’m done with the RAD, I’ll have my expander put in and continue with Herceptin e/3 weeks for the next 6 months. Part of me is eager to return to work but then again, I’m afraid that I won’t be able to handle them both. Sometimes I feel that my dedication to my job is what got me into this situation in the first place where I wasn’t paying attention to my body, so that is causing some of my reservation. (I know I shouldn’t feel that way, but it’s the truth) I’ll have to find balance again because I am ready to move into ‘survivor’ mode. Hearing the other ladies stories helps because I know I’m not alone in how strange this feels. 😉 God Bless you all!

  7. Thank you so much for your post. (sent to me by Meg) You have mentioned so MANY issues and so has your readers. I’m just glad I read this and I know that this too will pass ….. by the way, what were some of your activities for brain power?

  8. My journey is different as I was diagnosed with ovarian cancer and am now eight months post chemo. I’m so glad you brought to mind “the chemo bubble” in which we live during our treatments. Such a perfectly accurate description. To emerge from that bubble is an enormous task as we hardly recognize ourselves any longer. I have experienced PTSD symptoms and have just begun counseling. It is a good fit and I am so very grateful. The triggers I have experienced, the set-backs, the flashbacks, heart pounding sleepless nights, the physical homeliness…I just wanted my old life back!!! I’m practicing mindfulness and I have channeled some energy into a whole new dietary regimen that serves me well. I have a good artist friend who is going to help me to paint my experience (my masterpiece!) little by little. This is all new territory for me, I’m uncomfortable but I’m going where I feel led. These are all new people maybe playing the part of new friends. I have not catharted like this until now, until these words of yours have found their way to me. My heart goes out to you and all who have found a friend in you and solace in your blog. Thank you So Very Much.

  9. Denise,
    You have an uncanny way of always hitting the nail on the head and putting into words what many of us are feeling. Thanks for once again sharing your own journey and helping me to acknowledge how I’ve been feeling and doing. I’m so thankful for your blog and look forward to each entry, knowing it will be more food for thought and spirit.
    Take care.
    Nancy

    • Nancy, thank you so much for your kind and caring words. I just write out my feelings
      and pray to God I am not the only one in the breast cancer universe that feels that way!
      Thank you for writing and letting me know I am not alone! Continue to be patient
      with yourself as we move along this unfamiliar path. My best, Denise

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