The story doesn’t end here…
I am returning to this question again of what happens to us once treatment ends, as it is one that fascinates me and I never tire of hearing how others experience not just the immediate aftermath of the end of treatment, but the months and years that follow.
You live for the magic day that all treatment is ended and you can at last return to normal life. There is an expectation that when you walk out of hospital on that final day, your cancer story has ended. Now close the page on that chapter of your life and pick up the pieces where you left off and get on with your life. You are going to live, you are not going to die after all – so rejoice….go live your life, go live your happy ending.
But it’s not so simple. In fact the reality can be quite different. This magical day you’ve dreamed of can feel like the biggest anti-climax of your life. For me, it felt like that last day of exams, those important exams for which you had studied so hard for months and now the final exam is over but you are left emotionally and physically wrung out.
You start to pick up the pieces where you left off before you were diagnosed and you tell yourself you can get back to normal now that all treatment is over. So you wait and you wait for your life to return to normal…but does it ever? I don’t believe so – I believe we need to find a new normal. A new way of restoring balance to our lives and a new way of being in this post treatment phase. Besides, have we really cheated death? We have bought ourselves some more time certainly, but none of us, as the old joke goes, gets out of this world alive. There is, to borrow another cliche, nothing more certain than death or taxes and we will have to face our appointment with death another time. We know, more than most, that we cannot live our lives ignoring this fact.
We are not prepared for the tsunami of emotions that hit us at times. We can be filled alternately with relief and elation at being given a second chance and with anxiety, fear and uncertainty in the months and years after treatment ends. We’ve left behind the security of the hospital care, the doctors and nurses that has monitored us so closely for the past few months and we ask ourselves, who will keep such a close eye on us now? Who is watching to make sure the cancer really has gone away? What do you do about those aches and pains? Do they mean the cancer has returned? Are they related to treatment, your advancing age, a common cold or something more sinister? I certainly felt a form of separation anxiety as I walked away from the doctors and nurses who had been my life-line for almost a year of treatment. How could they just cut me loose like that, abandon me to my fate? I felt very vulnerable and afraid. No one said the words I wanted to hear “you are cured”, so it feels as if I was placed in some kind of limbo, not part of my old life, no longer part of my cancer battleground, and not sure of the future.
When I was going through surgery, chemotherapy and radiotherapy, I felt as if I had a new full-time job on my hands, a project which took up all my time. It was structured around appointments and moved through defined stages to a clear goal in sight. I met new people and learned so many new things. When treatment ended, that structure fell apart.I had lost my job. My days were my own again, but I was unsettled and lost. My emotional and psychological landscape had changed dramatically and I needed to find a new way to be in the world. While the battle for survival ended, a new challenge was begining – how to make sense of the experience of cancer and integrate it into my new normal. Now the time for real healing begins.
While the treatments for cancer – surgery, chemotherapy and radiotherapy targets the cancer quite specifically in the body, the experience does not leave the mind, the spirit or the emotions untouched. Some will walk away from the cancer experience and say this is over dramatising things or being somehow over-indulgent, but I have met and talked to too many cancer survivors to know that the experience touches us at a very deep emotional and spiritual level. Some researchers into the area of survivorship have postulated the theory that surviving cancer, fits the theoretical framework of postraumatic stress disorder.
Hearing of the experiences of others has helped me enormously but I would like to hear more. How did you feel after all treatment had ended? Did you manage to pick up those pieces and resume your life before cancer interrupted it? Did you make any changes to the way you lived your life? What are your fears and worries? How has your life changed?
Sometimes there can be a code of silence surrounding the aftermath of cancer treatment. We hear stories of how survivors have gone on to live wonderfully transformed lives, filled with gratitude for their experiences, and while these stories give us hope and inspiration, the reality is not always so for others. So whatever your experience has been in the aftermath of cancer, please consider sharing your story here and let it become part of the sisterhood of experience. I love the quote from Rebecca Falls which says that “one of the most valuable things we can do to heal one another is listen to each other’s stories”. By sharing your story in this way you can help to demystify the confusion, lessen the feelings of loneliness and isolation, and validate the experiences of others.
Survivor loneliness of women after breast cancer
Talking with other survivors and if you are lucky enough like I am to have a good friend who is also a cancer survivor, I find that helps.
If you have a certain ache, a rash, a reaction, you can call that friend who will confirm your suspicions that it is of course cancer of some kind. While you both know it isn’t it is a great comfort to have some understand that is where you go.
What it is all about is a laugh with some one who understands your anxieties, your hypocondria, your doubts of a long survival.
“a code of silence” is a very apt phrase. People don’t want you to talk about the depression, the feelings of anxiety, the worry – they expect you to get over it as soon as treatment ends. Thank you for highlighting this very important issue
I was taken by surprise at the feelings which i had post treatment – i expected to feel elated and no one had warned me I would feel this bad – you are right indeed when you talk of a code of silence.
thank you so much for highlighting this issue – i think it is very important that we talk about and help others feel less along. there needs to be more psychological support for those cancer patients finishing treatment.
The 2nd scariest day of my cancer life was hearing my doctor say; No more tests, don’t need to see you for 6 months-I’m not worried about you.
Still so many emotions post treatment, and few are what is needed or expected by family & friends. While everyone celebrates treatment ending in a need to close that chapter, I leave the book open as those earmarked and tear stained pages will always be part of my life.
Thank you so much for sharing your story with us. What a poignant but beautiful image of those earmarked and tear stained pages – it touched me deeply. Wishing you many new and wonderful chapters in your book as you travel on with your healing journey x
10:00 am –
Thank you for your cogent thoughts on cancer treatment; this is an important topic of conversation, and I found your contributions provocative and insightful.
The organization I work for, the Pacific Northwest Foundation, is devoted to researching alternative modes of healing for a variety of illnesses, including cancer. I wanted to share with you a video presentation of a case study we conducted some years ago about an elderly woman with terminal cancer who, through a variety of methods, was able to eliminate her tumors. The link to the presentation is http://pnf.org/html/cancer.html.
I’d like to thank you so much for your contribution to the subject of cancer treatment, and hope you will find the case study above helpful in your continued exploration into the subject.
Thanks for sharing this post via Facebook today Marie, it’s really insightful especially after our conversation last night!
For me, resuming normal life where I had left off was an impossibility so I upped sticks and moved to a new job in a new country and kept very quiet about my cancer past. I’m not sure who I was trying to kid because it’s not something that you can just shake off.
Like you, I found that dealing with the isolation and the insecurity after being “cut loose” by my medical team was far more difficult than the surgery, chemotherapy and radiotherapy combined. I could definitely have done with that bridge between cancer treatment and real life that you talked about!
It was following our conversation last night..that I re-read over this post again 🙂
Well dear Marie, you know I have so much to say on this subject, and as I read your words it as if they are coming out of my own mind, but more eloquently written:) I am in the midst of my second post-treatment phase of my life and still struggling. My most recent self-discovery is that while in treatment I felt empowered and strong. I was fighting for my life and I was good at it. Many people told me what a good job I was doing and how inspired and impressed they were. No treatment is over (sort-of) and i have to get on with the ‘new normal’ and I don’t know how to do it. I feel like I’m not so good at it. And during treatment people don’t expect too much from you, they know your are fighting a tough fight and know you have to put lots of energy into that. Like it is okay to nap and take time for yourself and focus on yourself. But after treatment it is then time to go back to being all things to all people and the responsibility can be overwhelming. And finding the balance between helping yourself and getting back to ‘normal’ life is a struggle. And one more thing is the loss of friends, or as Jody said to me, a closeness to people who you thought you were close to. That all seems to change, and it’s not just from them perhaps but also due to your change in perspective on what really matters.
I fully believe that cancer aftermath is post traumatic stress disorder qualified. And cancer messes with your mind, emotions, soul as much or more than your body. At least that is my take on things. Sorry to be so wordy but I am right in the middle of this now as you know:) Thanks for posting and giving me a place to share my thoughts! Love to you.
Thank you all so much for sharing your stories and your honesty.
I am not a survivor myself but have watched a dear friend go through chemo, radiation and a double mastectomy. I wish I had known then what I know now through connecting with all of you wonderful people about what a cancer survivor goes through after treatment… It all would’ve made so much more sense to me and I could’ve been of so much more support to her.
Please keep on doing what you’re doing on this blog Marie. It is of vital importance to both patients, survivors and supporters to be in the know. Live strong and #beatcancer.
Thank you all so much for these wonderful comments. I appreciate you taking the time to do this and the support you give me always x
Life “beyond” is the book we can’t open when we’re going through treatment. It’s the book we can’t even begin to understand because entering the world of treatment itself is daunting, overwhelming, and complete with an entire new vocabulary of medical words and acronyms. Before treatment, I thought 5FU was probably something I shouldn’t say to anyone…..I think the challenge of cancer actually begins once treatment is done, and you must adjust to a new body, an altered mind, and a sense of betrayal about the nature of life itself.
It takes time. Time before you can learn to fully embrace life again and accept your altered self.
“…I think the challenge of cancer actually begins once treatment is done, and you must adjust to a new body, an altered mind, and a sense of betrayal about the nature of life itself.”
Amazingly well put as always my dear Jody!
As you know I’m one of the lucky ones: never had cancer, so never had to go through treatment. You teach me something new everyday and I can see where you are coming from. I read Lances book when recovering from my accident and he says almost the same and describes how he lost direction in his life during this period. A reason why the LAF has programms for survivors as well.
You describes so clearly why this is so difficult and I’m so grateful you share it with us. Might the table turn and I will be in that big group of people batteling cancer, you, Deb, Jody, Carrie, Allison, Lindsey and many others will have prepared me for that better than anyone can. And now I use the things I learned from you dealing with the cancer of the people I love: your experiences and the generous way you share them with us make me able to “help” them better. Thanks again dear Twister, for all you do. Love, Annemieke
Thank you for sending me this link! This is very well said, I found myself nodding throughout the whole post. I finished treatment on Sept 2 and am still trying to figure out what to do now. I was journaling about this very thing the other day. I agree that no one wants to hear about this part. Another thing, at least with me, is that I got hung up in how I thought I “should” feel at the end of treatment and wind up being disappointed in myself for not feeling how I believe I should feel. Just makes it all the more complicated.
I wish I had a good answer… I think there’s a balance we all have to find for ourselves – diligent but not neurotic. But you’re right — there is no going back.
Thanks again for sending me this link. I’ll be reading!!
thank you so much for stopping by Katie. I loved what you say about how you “should feel” – i understand those shouldas very well indeed – that little persisitent voice in my head all the time….
I think it is wonderful that we can share our experiences online in this way and help each other feel less alone. I look forward to hearing more of your comments and views in the future.
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I haven’t beaten breast cancer (yet) but managed to ‘beat’ stage 3B lung cancer defying all odds & expectations. I managed to cultivate THE attitude of a survivor and received many accolades for my positivity & strength and what appears to me now as a performance. Hey, whatever works, right?
When I say I haven’t beaten breast cancer YET it is because I fully expect I might meet that particular demon because of family background risk factors & statistics.
But to the topic in question: I too have felt abandoned & ‘sent on my way’ not only by all the wonderful medical people & support systems who shored me up during the years of treatment, but especially by friends & family who expect me to ‘jump back into the fray’ with nary a backward glance; who accuse me of malingering if ever I should express any doubts or fears.
As time goes by – it is now 4 years since my illness – it is becoming more & more difficult for me to cope. Instead of taking advantage of my second chance I have become more & more fearful of the future & what I fear lies ahead for me. Psychotherapy has not proven helpful. Only staying so busy that I don’t have time to think has kept me going until such time as I inevitably drop from fatigue.
Not sure where I am going with this, but it couldn’t be good.
Thank you Rosemary for leaving a comment here. I am so sorry to hear you are struggling but I know from personal experience and from others that you are not alone in this.
Thank you all for your comments! I am a 3 year Breast cancer survivor, on November 1st! But, unfortunately, I developed many side effects: Peripheral Neuropathy in both my hands, and feet from Taxol. Also I developed Lymphedemia in both my Rt Arm, and Rt Breast from 2 Lumpectomies, and a Total Node Dissection of 24 Nodes. I had 1 year 2 months of very harsh Chemo, Herceptin., and Radiation. I also developed, Chemo Brain. I wear a Compression Sleeve for my lymphedemia, and a Solaris Night Sleeve at night. I have a Tens machine for my pain too. Unfortunately, I am in chronic pain in my Rt Arm, and Rt Breast. Because they are both very heavy, and Burn at times. I live on Advil, and Tylenol. I had Physical therapy from a Lymphedemia Speciaist too. Bu it is very costly. I am looking to go to the Gildas Club again where I live for Relaxation Therapy. I wish there were better treatments for all my side effects. I am so glad I am Cancer free! But my life has changed I am a Social worker, and a Psychiatric Nurse, and I wish I could work again, and it is so frustrating. I am hoping to Volunteer. I am very lucky that I have a very supportive husband, who was with me in the begining, and stiil here. On February 5th, it wiil be 3 years for my second Surgery! Also my Surgeon, Dr. Davies saved my life, but lost his life to Cancer on February 5th, 2009!
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I had chronic post mastectomy pain and found that a low dose of nortriptyline made it all bearable. I used to take one small ativan in the morning too that also helped and do not need my tylenol anymore. It is one scary journey…an existential crisis I think and having lots of support helps. My breast cancer has a good prognosis but somehow it just doesn’t go away in my thoughts that it might come back (I am 5 months out of mastectomy). Then, I have to remember that we are ALL terminal and none of us can predict our hour; a friend lost her 23 year old daughter to breast cancer! At 23, who would ever think they would be dealing with death? So, I try to keep positive with the idea that living each hour is what matters and trying NEW things out helps with that age-old question of what the meaning of life is. Yes, I would like the care-free feeling of youth again (remember the 23 year old) and would welcome the sense of a care-free old age too…*sigh*
I was diagnosed with Fibromyalgia in 1999 although I believe I had this for a couple of years before. I also had terrible migraines and mini strokes and assorted other medical issues. I had multiple surgeries on my feet, knee and the worst was rotator cuff surgery on my rightshoulder. I was (and still am) on many different prescription drugs for the extreme pain in my joints and muscles and for my migraines. I was diagnosed with breast cancer in January 2009. Thought to be small and non aggressive, it turned out to be just the opposite Stage III and very aggressive. I had a right mastectomy with 23 lymph nodes taken seven involved. I decided before hand to have a Tram Flap surgery to avoid having anything foreign in my body that might cause my fibromyalgia to flare around it. I had chemo and in the middle of my radiation & I developed lymphedema in my right arm. I went for physical therapy and was bandaged until I received my garment and JOVI Pak that I wear at night. I had 2 surgeries 6 weeks apart, one to train my blood vessels to move vertically and the second on December 22,2009 to finish the reconstruction. I quickly developed peripheral neuropathy in my hands and feet. I tried to take Femara (like Tomaxifen 5 year drug after cancer) but the side effects of the hot flashes coupled with the neuropathy and fibromyalgia flares made it impossible for me to sleep or stand the pain. I finally had to take myself off the Femara and hope for Quality over Quantity of life. Everything I can do for the fibromyalgia is not good for the Lymphedema. No heating pads or hot wraps. I expected there to be problems afterwards but not to the extent that my hands are going numb and so are my feet. I can’t really sign my name or type very well. I have chemo brain/Fibro fog. It is so embarrassing not to be able to remember things or know the word and not be able to say it. My reconstruction went very badly. The muscle connection has caused me more pain. The scaring is bad but I really don’t care at my age. I also had calcifications in my left breast that they removed with a mammatome, not a pleasant experience. There are days the fatigue takes me over. I spend an hour a day in my Lymphedema treatment (Tactile System) which is a “suit” and machine that massages and pumps the lymph nodes and the right arm. My son bought me speech recognition software to use as I am getting worse. I am still working as an Insurance Agent but have no Insurance of my own as it is too expensive, crazy right? 6 months before my diagnosis my husband was a liver transplant patient and 2 years before that he had a quad bypass and 6 weeks after that he developed bilateral pneumonia and was in a coma for 4 weeks and in rehab for 3 learning how to walk, feed himself and dress. He was so wonderful during my journey. I took care of him and he took care of me. I lost my major client and we have used all of our savings. I am 60 and he is 64. It is so scary to look ahead and wonder what if it comes back? My ability to be up and happy about everything is difficult. But I read how others out there are scared and going through this for the 2nd and 3rd time and I tell myself, I am so very lucky. I have 3 Drs that understand all 4 of my medical issues and can work together to make my life as best as it can be. My heart goes out to Stephanie dealing with Lymphedema can change your life.
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Patricia, I feel for you because you have also gone through so much too! I can now say, on November 1, 2010 I am now 4 years Breast Cancer free! Unfortunately, I also developed Chemo Brain about 6 months, after I finished my Major Chemo, back in February, 2008! I also feel very frustrated that I cannot remember words. I just started to volunteer at my hospital where I had my Chemo, and I am going to work with patients who have MS,(my mother had that illness, for over 40 years) I would like to know if anyone knows about any Cognitive softwear that I could get to help me with my Chemo Brain! Thanks Stephanie
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I’ve been playing scrabble with strangers on facebook, and the AARP site has some brain/memory games for free (I do the easy levels!) I had a mind like a steel trap before and would have probably been able to do the hard levels, but now I am struggling on some of the easy ones. But I figure, forcing my mind to do cognitive puzzles of different kinds must be helping it to heal…at least I hope so. I’ve seen lots of other free memory/mind game sites when I’ve googled ‘brain games’ too. I still lose words and whole sentences sometimes, or completely forget that I have done things or told people things, or who I’ve told them too, but I’m hoping if I keep working my brain, eventually it will get better.
Great tip Janine- thanks for sharing it with us!
I can say i felt the same way i had cancer in my livet after weeks of waiting for my resultsi have to go back in feb for a scan to make sure it is gone. Even though i have family an freinds i still cry and feel so aloneprayer does help alot but maybe i need an honest opinion or someone to vent too i hope life gets better for me because i still have alot worse then cancer looking yo get operated jan fifth to dave both my legs losing my vision you name it i have it going on in me i hope you find some answers or get to a happy medium bless you my name is jean.
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