*Featured Post* What happens after cancer treatment ends?
A reader has contacted me to say that she is struggling with her feelings six months after her treatment for breast cancer ended. She asked if I would address the topic here and hopes that readers will respond with some advice for her, or, as she says, at least a feeling that I am not alone, or going mad.
With Ann’s permission I am using some extracts from her email.
I was taken completely by surprise at the feelings which I had post treatment. I expected to feel elated and free. No one had warned me I would feel this bad. I feel as if there is something seriously wrong with me..as if I am going mad. I also feel really ungrateful that I am not happier now that I have finished my treatment. I feel so sad and weepy all the time.
The first thing I told Ann is that she should remember just what she had been through – a very tough experience, physically and emotionally, and to understand that it takes time to recover. You may find that it is only when your treatment has finished that the full impact of everything you have been through hits you. And you may be taken by surprise at the intensity of your feelings of vulnerability, fear, sadness and depression.
Feelings of Guilt
Ann also writes:
I feel guilty that I am not making more of my life. When I was going through treatment, I made all sorts of plans for what I would do when I finished.. I was really going to make the most of my life, now that I’ve been given a second chance…but I am too tired and overwhelmed to do any of those things.
I know from personal experience that I felt just like Ann – I was going to give up my job, write a book, travel more, be happier….but often this kind of pressure to seize life with both hands, because you’ve been given a second chance at life, can backfire, leaving you feeling overwhelmed and depressed. Ann also needs to remember that she is still battling the side effects of treatment – she needs to give herself time to build up her strength and fitness levels before tackling any big plans for her life.
Feelings of Anger
Another thing that Ann is struggling with is anger, again a normal reaction.
I was never an angry person, but I find myself seething when people tell me how lucky I am to have “beaten cancer”. I don’t feel lucky, or rather I feel guilty that I don’t feel lucky. Is it lucky, I want to say, to have lost my breasts? My hair? And to be experiencing an early menopause? They also think I should just put this experience behind me now, be grateful and get on with my life, but I’m not finding it so easy to move on.
Other people’s expectations can make you feel angry. Whether they are telling you how lucky you are to be alive, or they are pressuring you to get back to your old activities, their attitude can make you feel misunderstood and unheard. Often friends and family mean well – they just don’t know the right thing to say to you. So tell them. An open and honest dialogue may be just what you need to clear the air and take the edge off some of that anger.
Finally, what I want to say to Ann, is that she needs to honour the fact that cancer has changed not just her body but her emotional and psychological landscape has also changed dramatically. She needs to give herself time to find a new way to be in the world. Now that active cancer treatment has ended for Ann, the time for real healing begins.
What are some of the feelings you experienced after you finished your treatment? Have you any advice which could help Ann with her post-treatment feelings?
Related Posts:
Survivor loneliness of women after breast cancer
You’ve survived cancer. ‘Now What?’
Report claims not enough being done for cancer survivors
I’ve just finished active treatment for breast cancer and it has been such a relief to read this post and your other related posts and to realise that the mental trauma I am going through is completely normal and I am not alone. Thank you for sharing Ann’s email and for Ann for allowing it to be shared – it is an accurate picture of how many of us feel when treatment ends. What a relief to know I am not losing my mind!
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Thanks for your comment Sophia and I am glad that you found this post helpful. There are many of us here who are happy to answer your questions anytime, so don’t hesitate to ask either in the comments or email me directly.
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You can end up in a really strange place emotionally once you stop going to the hospital all the time. Moving on is almost as tough as living through diagnosis and treatment because whether you like it or not, cancer changes your life, forever.
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You are so right Alison, but sometimes, with time some of those changes can be good changes..I have found this to be true in my own life.
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I found the above piece a true comfort as even though I finished treatment 5 weeks ago I feel most of the time I have this crazy person inside my head. I’m blaming the tamoxifen. It’s a relief to not be alone.
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Thank you for this post and for all you do to fill this important gap in cancer treatment – what happens when cancer treatment ends and you are left feeling rudderless and alone. Thanks for connecting us all here and helping us feel less alone and more informed in this post treatment limbo.
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Thanks for your comment Pam – as you know, I started JBBC for the very reason that I felt alone and disconnected from people who understood what I was going through when I finished my own treatment. It has been an honour to share the journey with so many of you in the years since I started JBBC.
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Oh my Gosh!!!! I thought I was the only one to feel this way… I have been a little toot for 3 years now and had kind of a Muchhausan syndrome going on… I guess I needed attention after alll the hospital runs (which were 3 hours away) You’ll never know how glad I’am to know I’m not alone…. All of these post hit me right on the head….Maybe I can resume life as I once was ????… Maybe I’m even better for the experience???? I just know now I can get better as I know what is going on…. I have got to get rid of the guilt…. and I’m going to….. shelia
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Wonderful to hear from you Sheila and thank you for your comment. Hope to find you here again. Marie x
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I’ve been in remission for 4 years and yet Anne’s story has described my experience too. Even after all this time I still deal with depression and anger.
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Hi Alan, thanks for your comment. it is coming up to 7 years next month for me since my own bc diagnosis and as I’ve written here often, i still deal with issues such as depression myself. I;ve learned that recovery is not a linear process – there are ups and downs – you take some steps forward, some back and so it goes. But as my post on the Dark Nights last week said, we are still moving forward in our recovery, however imperceptible that movement may appear sometimes.
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I was counting off the days to finishing my cancer trreatment but when the day came it felt like the biggest anti-climax of my life. I felt emotionally and physically exhausted.
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This is how I felt too Carl! It was like those exams you study hard for and the day you finish them all you collapse in a heap. Anticlimatic is a perfect description
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It can take a long time come to terms with the physical and emotional aftershocks of cancer, so my advice to ann and to anyone else feeling this way, echoes your advice, honor how you are feeling and realise that it will take time. If it all becomes too much, then don’t hestitate to seek professional help. Good luck!
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That’s an important point Angela. It may well be the case,that it is too much to deal with on your own and it is important to know that there are professionals who can help you see a way through if the path becomes too dark and unmanageable on your own.
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I too was taken completely by surprise at the feelings which I had post treatment and no one warned me I would feel this bad either. I wish I had discovered your blog earlier, then I wouldn’t perhaps have been so surprized to have these feelings. Thanks for helping me feel less alone.
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Hi Paul – this is indeed the issue – no one does warn you that you may feel these feelings after cancer treatment ends. I hope that reading this blog will prepare patients for the anticlimax of finishing treatment as Carl says above. More work needs to be done in the health care system to prepare patients for the end of treatment.
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I’ve wored as a breast care nurse for 10 years and I have seen this situation arise again and again when patients finish their treatment. It’s one of the scariest times for most survivors, and no one prepares them sufficiently for that. I think we have to do a lot more work helping people prepare for life after treatment ends. I commend you on all you are doing to fill the gap in support and information online.
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Hi Caroline – I really appreciate your comment. It is important to me that voices from all sides of the cancer arena are heard here on JBBC. As you know, because we’ve had this discussion between us before, I passionately believe more attention needs to be given to this post treatment phase of cancer treatment and strategies put in place to ease the transition of patients from the active to post treatment phase. Thanks for your input.
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It has been 9 years since I finished my cancer treatment, but I can still relate to what Ann is feeling and what readers are saying in their comments. I remember that feeling of separation anxiety as I walked away from the doctors and nurses who had been my life-line for almost a year of treatment. I felt very vulnerable and afraid. The intensity of those feelings do fade with time but as someone else said in the comments, the experience of cancer never leaves you and your life is never quite the same again.
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Hi Brendan, you are right – the intense feelings fo ease with time, but yes, the experience has changed you forever, but as I said above, sometimes, some of those changes can also be for the better. Would you agree?
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Oh yes indeed! Having cancer made me realise, cliched how it sounds, what is important in my life – I now spend less time at work and more time with family and loved ones. It gave me a new perspective on life.
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I appreciate what you say about honoring how you are feeling and giving yourself time to recover – I agree! The problem is my family don’t seem to get it! It’s been almost a year since my treatment ended and while physically, on the outside, I appear to have recovered, they don’t understand that I am still dealing with a lot of things on the inside.
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A great point Deirdre. Your family may be anxious for you to resume your role of caretaker, homemaker, etc and you just may not be up to it physically or even want to do things in the same way anymore.Sometimes you have to renegotiate your role in the family to stop feelings of resentment, fatigue or anger taking over. Have a frank discussion with family – and get everything out in the open with them. It’s the best way. Good luck!
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The worst part of me so far has been the unrelenting fatigue since I finished treatment – is this normal? And does anyone have any advice for how to handle it?
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Perhaps one of the most commonly reported side-effects of cancer treatment is fatigue and the bad news is that it can continue for several months after treatment ends. The good news though, is that there are strategies you can put in place to help you deal with it. Particularly in the first few weeks and months, give yourself time to rest. Take short naps throughout the day if you need to, and learn to conserve your energy for when you really need it during the day. When you feel up to it, take some light exercise – a walk in the fresh air is perfect. If you find that is going on for a long time or it is seriously intefering with you going about your daily activities, then you should talk to your doctor.
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I really relate to Anne’s email and to a lot of things being said here about fatigue, anger, depresion, but the thing I am struggling with most, is an overwhelming fear that my cancer will come back. It terrifies me. Have you any advice for how to deal with this aspect of things?
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Hi Fiona, I am sorry that you are feeling so overwhelmed by this fear and once again I want to reassure you that this a fear common to all of us who have had experience of cancer, though for many of us, this fear does fade with time, although it never truly goes away. Some women find that educating themselves about all aspects of their disease, their personal risk of recurrence, preventative measures, etc. can help decrease their fear,You don’t say how long it is since you finished treatment but if it is recently, these fears should lessen in intensity although expect them to reoccurr at times such as check ups and hospital visits. However, if it has been a while since you’ve finished treatment and you are finding that this fear is impacting your quality of life, then I would recommend getting in touch with a mental health professional who can help you work through it.
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Thanks for a great discussion,. I am finding it very helpful. So my question is, how do I know when a pain or problem is something to get checked out or not really a big deal? I don’t want to be paranoid all the time but it is something that is bothering me lot even after 2 years post treatment.
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This is a great question Angeline and one very common to all of us. There is no one size fits all answer to this I’m afraid. It really comes down to your unique diagnosis. So it is a question only your medical team can answer properly, but having said that, ss a rule of thumb, I have had it recommended to me to apply the “two week rule.” If you have a symptom that is persistent and consistent, meaning the intensity of the symptom does not get better or gets worse, then it would be wise to call your oncology team or primary care provider and report the symptoms. They will then decide what tests (if any) should be done for follow up. It’s also important to remember that your body may have other “normal” pains and aches (i.e. headaches, backaches, etc.) that don’t necessarily indicate anything more sinister. Hope this helps!
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This has been such a great discussion and I know you are helping a lot of readers Marie, although not everyone will comment. I just want to add that for me, I find exercise is the key to managing my anxiety and fears – and the fact that exercise and a good diet are increasingly being cited in research on cancer prevention is an added bonus – so not only am i managing my anxiety but i am taking control of my future health in a positive way.
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Great comment Valerie! There are so many different kind of exercises that people can do to keep healthy, in mind and body – yoga; cardiovascular activities like running, swimming, brisk walking, biking, and hiking; and any other exercise activity that gets your heart rate up for 30 to 45 minutes. If you can’t exercise briskly for 30 to 45 minutes, modify your exercise to your current physical limitations – sometimes a gentle walk in the fresh air is all I can manage, but just getting moving is good.
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So glad I found your site today! This is just what I need to read!!!
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As an oncology nurse I too passionately believe that follow-up care should include giving recognition to survivors’ experiences and normalizing the situation to allow for survivors’ expressions of experience. Thanks for faciliating this important discussion on JBBC
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I am quoting from an earlier post on this subject that you wrote but i think it bears repeating:
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.
Thanks for breaking the code of silence!
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“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
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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 a lot for me.
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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
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Second scariest day of my cancer life was hearing my doctor say; No more tests, don’t need to see you for 6 months…feeling abandoned, cut adrift, vulnerable and scared.
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T hank 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.
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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
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Elizabeth Edwards once noted the importance of a strong support system because as a cancer survivor, “the most benign things will scare you to death.” Sadly, her fears turned out to be true, but that is not the case for everyone and we all need that strong support network as we journey beyond breast cancer. Thanks for being part of that support system for me Marie x
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Cancer transforms a person on every level. All this change and upheaval takes a long time to come to terms with. Like Ann, I find the post cancer time to be more difficult than I thought it would be. I don’t want to hear how lucky I am to have had the “good:” kind of cancer. I don’t want to hear “now you can get back to normal.” People mean well, but…
Ann, it takes time. My advice would be to find at least one person you can be truly honest with and then share your true feelings. Another thing I find to be really helpful is to write or keep a journal. And of course, the blogging world has been a life saver for me. Join in there, Ann, by writing or reading.
Sometimes I still feel like a ticking time bomb since I am BRCA positive. It’s one day at a time. So cliche, but so true. Finally, if necessary find professional help and above all, your feelings are yours and they are valid. Guess I got a bit windy here, but this is a topic I care a lot about. Good luck, Ann. Thanks, Marie. You are helping many!!
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Thanks so much for responding to Ann. Ann, listen to Nancy, she knows what she is talking about, and do check out her blog – I think it will resonate a lot with you.
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All of Ann’s feelings are so normal for us! It’s important to find good follow-up care. Some cancer treatment centers do offer supportive care after acute treatment is over.
In the first place, we are never really “done” with cancer. We have to be checked and rechecked for years. In the second place, cancer and cancer treatment are physically traumatic. Researchers have found many measurable markers of the changes they make on our bodies — endocrine, immune system, neurotransmitters, not to mention the real physical longterm side effects of surgery, chemo, radiation & hormone therapies on our tissue, heart, lungs, psychological status, joints, and so forth. It has been found that many of us experience the same kinds of emotional changes that occur in people with Post Traumatic Stress Disorder. The thing I’ve suffered most with — and was least informed about by my doctors — is longterm cancer-related fatigue. I’m posting a few links here that Ann, Bruce & others may find helpful. The information applies not only to those of us with breast cancer, but to all cancers. Hope it helps someone. I’m just emerging from all this after three years!
This first is to a PDF of a recent informative review study on fatigue in the Annals of Oncology:
http://annonc.oxfordjournals.org/content/22/6/1273.full.pdf+html
The second & third are links to a few of my blog posts; there are several, which can be be searched for under ‘fatigue’ in the tag cloud on my sidebar:
http://accidentalamazon.com/blog/2009/08/14/the-f-word/ http://accidentalamazon.com/blog/2010/05/25/losing-it-and-trying-to-get-it-back/
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Thanks so much Kathi for providing these links..I will be checking them out myself too!
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Pre Cancer treatment everything is a seeming blur. You seem to go through the motions without feeling or fully knowing what to do, feel or what to expect. Suddenly you are in surgery having a body part removed , drains and you say to yourself. WTF How did I get here?
You do your chemo lose your hair feel bad body hurts. Then BANG it’s over You are dismissed!! No one talks to you, you don’t have a How to Recover for Dummies Book written for you.
What you end up is well meaning sometimes very insensitive people telling you how you are supposed to feel and react. As Nancy said Folks will tell you Oh you had the “GOOD CANCER” How is being diagnosed with Stage 3 Grade 3 a good cancer? Just get over it! You lived the cancer is gone you will live to be an old lady. Then how come so many women around me are dying? I get angry, upset I can cry at the drop of a pin. My insides at times feel like an earthquake with intermittent after shocks. No matter how long you survive that inner fear is there. I don’t feel betrayed by my body, the biggest betrayal is when your Medical Team lie and don’t at least give you some indication of what lies out there for you. THE AFTER CARE CAN BE FAR WORSE THAN SURGERY AND CHEMO. PSYCHOLOGICALLY, EMOTIONALLY, LEAVES YOUR SPIRIT DAMAGED.
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Hi Alli, thanks so much for your comment and everything you say echoes what I felt when I finished treatment and still feel nearly seven years later.
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Honestly, I feel as if the old “me” did die of cancer. I was a happy-go-lucky kind of person who was really content with my life and easy to get along with.
Now I am resentful, angry, moody, bitter. I know I’ve had a lot more permanent physical damage that most of the rest of you (I get excruciating pain just from wearing clothes), but my life has changed in ways I never expected.
I was talking with my husband yesterday about how I feel like I live in the same “shell” or body, but everything inside has completely changed. Everything pretty much looks the same – once you get your hair back – but I think the only thing left the same inside is the memories; memories of a good life, the one that you can never go back to.
I wish I was not so bitter, and I have tried so many things to get rid of this bitterness, but it just won’t go. I’m trying to get on with my life. I get up, go to work (never really stopped working), go out with friends, but just mention cancer – I fall apart. UGH!
I agree with Alli – we need a “How to Recover for Dummies” book!
Thanks for writing about this. Keep it up!
Dianne
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I find everyone’s comments above really helpful to Ann; it should show her that she’s not alone. 10 years out of treatment, and I’m still affected. What she is experiencing is completely normal.
I agree with Nancy about speaking to someone special and joining the blogging community as a reader and/or writer. Here is an additional recommendation: perhaps Ann would fare well by seeing a counselor who specializes in issues that are health-related. Someone with expertise in this area could help her.
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I wondered for a while whether my cancer would come back. But I had faith in God that this would not happen. As I took up new hobbies like painting and writing my mind shifted to my new life. I told people not to define me by my cancer, that I was the same person I have always been. I also spoke at various groups about my cancer experience to give them hope that they could also get through it. Thanks for this marvelous outlet for giving suggestions to those finding themselves post-treatment.
Jan
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Reading Ann’s comments that u have reposted here are like going back a couple years and reading my own journal. You are not alone Ann, and I am sorry no one told u that u might feel this way. I think people don’t like to talk about all these strong emotions and also I know I didn’t want to alarm anyone who was just going through treatment, plus I never want to assume that all cancer survivors will feel the way I did, but over and over I hear people express the same surprise and I think there must be some way we can help each other.
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Ann, I’m so sorry that you feel the way you do-but try to be patient with yourself…your whole self. As women, we tend to forget how to be kind to ourself, body and mind. You’ve been through alot. On some days, putting one foot in front of the other can be a major accomplishment, and you know something? That’s OK! Those of us that have walked down the cancer path know that trying to find our “new normal” can be a difficult one. Some of us our still trying to find it! There’s no time frame on “getting better” or “feeling better.”
This whole experience has made you strong, strong in a way you may not yet recognize, but you will. If need be, seek professional counseling. It can do a world of good for both your mind and soul. Keep your head held high, you’re going to get through this 🙂 Just remember, be kind, gentle and patient with yourself.
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Reading these comments just made me remember something. Marie, I had mentioned to you via tweet/FB there was kind of a general feeling of letdown after all the commotion and attention of treatment ended. But I had forgotten my reaction the day I had color tattooed in around my new fake nipple. This was my last step, after a biopsy, two atttempts at breast conserving surgery, a mastectomy/first stage reconstruction, second stage reconstruction with augmentation/lift on the other breast, and finally nipple reconstruction. This was going to be a piece of cake, done over my lunch hour, and then I was done!!!
I couldn’t believe it when I went to work and a gloom settled over me that I just couldn’t shake. I wanted to cry and was shocked that I felt this way. But I didn’t try to fight it; I took the afternoon off after the procedure so I could just be alone. I talked to a friend later and she said she had the same reaction her last day of chemo. This would be cause to celebrate in anyone’s book but she found herself bursting into tears when she went to lunch with her parents. I think it’s normal for us to feel like that but it sure took me by surprise.Sending my very best to Ann.
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Thanks everyone so much for your comments. It is such an important topic and the reason i set up JBBC in the first place – to break the code of silence around the end of treatment. Thank you all so much for your contribution – Ann is away this week but I know she will be delighted on her return to read your comments and advice.
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Absolutely nothing is wrong with you. As a psychologist who has gone through it too, what you are experiencing is (this is not a diagnosis) but post traumatic stress disorder. I blog about this all the time in my posts, as it was so prevalent for me post cancer…and it fit. I do so much trauma work with people, and this is trauma. I often say to people that during treatment the sirens are going off and you can’t think, but when it’s over you can think…and then you start to say hold sh*t what happened,
Counseling can help immensely with a therapist who gets that.
Lauren
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Cannot tell you how grateful I am to have found your site and read these comments!!
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Thank you for another wonderful post which speaks to so many of us.
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Marie–this post says so much and offers much encouragement, hope and reality of life after cancer. I am going to share this post with my BC friends and hope to blog on this topic when time permits me to restart my blogging entries.
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Looking forward to your resuming your blogging..I always gained so much comfort and insight from your writing x
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Ann, and many others who have commented here, echo precisely my feelings post-treatment. We so often hear that we shouldn’t let our cancer define us, but in a way it does. It’s like we’re suddenly members of a club that we never wanted to join in the first place, but we don’t know the rules or they’re in a constant state of flux and/or different for everyone, and it’s intense and scary and chaotic, and we have lots of people there to help and support, and then we’re suddenly cut loose – “you’re done! Yay! See ya!”. No wonder the ground drops from beneath us and we have a hard time steadying ourselves. We’re not prepared for the rush of, nor the the intensity of, the feelings that hit – for the aftershocks. It is a gift to find these blogs and the commentary as it shows us that we are not alone, that in fact we haven’t been cut loose, we are members of a new club, the survivors’ club, and that *is* a club we want to join. There is a comfort in that camaraderie, a strength, which helps us regain our footing on this new path we have been set on. I, for one, am grateful for the hand-up. 🙂
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Hi Lyn, thank you so much for dropping by and for your great comment – there is such support in our joining together and in sharing our different stories. Hope to see you again here soon x
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I think it’s also important to recognize that the responses and reactions of others to our depression, fear, or anger often has more to do with their fear and discomfort with our cancer than with a lack of understanding. Watching a loved one face cancer is frightening and difficult. Some people are better equipped than others to truly support us. Once we’re finished with treatment, many of our supporters and loved one’s will be anxious for us to “move on” so that they can move on and avoid the difficult emotions that our cancer diagnosis and treatment triggered in them. That’s why blogs like this are so important, reaching out to others who are or have been in your shoes. Best to you, Ann.
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Hi Susan, thanks for your wonderful comment – you are absolutely right that the reactions of our loved ones have a part to play in this whole scenario – thanks for commenting
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I felt more alone after my treatment ended than I’d ever done during it. Now that the immediate crisis was over, everyone who was there for me and supported me during treatment, seemed to disappear from my life. I understand that for them, the crisis was over and they were getting on with things and expecting me to do the same. I’ve been guilty of that myself in the past, when dealing with friends who were bereaved – rallying around them in the first few weeks, but expecting the bereaved person to get over it or at least cope without my support soon afterwards. It has been a real eye opener to me, and I hope that I will be more mindful in the future of giving my ongoing support long after the immediate crisis has ended.
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I’m still in treatment (as you know), but I’m incredibly anxious about going back to work full-time, and if I even want to, at least in the job/capacity that I have. I wonder what kind of life I’m fighting to rejoin? Do I really want to go through all of this to end up in the same routine/job I had before? And if not, how do I even go about getting a job that can still pay my bills that I won’t resent?
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Rica, your concerns echo exactly how I felt when I completed my treatment – dreading going back to the same old routine but needing to for financial reasons. All I can tell you is that now five years later I have found a way to make it work and I am sure you will too x
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I am almost 2 yrs. out from DX. Had triple negative bc, which only 15% of women have. Through out my treatment, none of the doc’s told anything about alternitive things to while going thru treatment such as yoga, meditation, writing,accupunture etc. I also go to 2 support groups as well. I had a pretty rough chemo which may or may not have helped to have know about all of this. I have since “fired” my oncologist, and now have a dr. who listens to me and is respecful of all things I do to keep as healthy as I can. I am lucky to have an excellant prognosis. Every thing has been clear. I am still terrifeid at Dr. appointments and tests .Maybe some day I will get better at this, but NOT YET!!!! Just found this blog,hope I can manage the whole computer thing to get back on!
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I am almost 8 months out from my lumpectomy, chemo and rads and I have been struggling so hard for the last few months with all of this – – after treatment and getting back to life. I’m so glad to have found this blog and read all these comments. I needed to know I am not alone. I am in the process of filing for disability and it’s embarrassing and humiliating. I’ve got severe “chemo brain” and as a writer (marketing/advertising) I can’t even think creatively anymore. My husband has had to take over the bills because I’ve double paid or not paid bills, I’m forgetful, I’m easily distracted when driving, I can’t multitask and I even have trouble stringing together words to form sentences at times. I gained major weight from the steroids and either from the tamoxifen and/or menopause that my 40-year-old body has been forced into. I was expecting to hit all cylinders after my treatment was over. I’d fought and WON for God’s sake. I don’t like my new normal and I resent what cancer has done to me. I was upbeat and happy and focused on living – truly living – while I was going through treatment. As crappy as treatment was – it’s recovery that’s killing me. Thank you so much for letting me know I’m not alone. Blessings.
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Blessings to you too my dear. Be gentle and kind to yourself during this time. Marie x
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Thank you for sharing Anne’s email with us. I did not undergo chemotherapy, but lost both my breasts and it took 12 months to recover from the surgery. Like Anne I too felt depressed & angry at times. I still, 18 months post surgery get annoyed that people think we should talk about it and that I should just move on. Unless you have been there I don’t think you can understand what an emotional journey this is and I can’t imagine ever just putting it behind me. When you are going through this you are just going through the motions doing what needs to be done. It’s not until it’s over that you realise what you have been through! I feel lucky and certainly am getting on with life. But I will never forget what I’ve been through and would like to help others if they need it.
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Hi Nicky, thanks so much for taking the time to comment and share your feelings post treatment. As you so rightly point out – there is no time frame for “getting it over” – nor do we just get over it. I would like to see more recognition given to this fact. Wishing you continued good health and healing. Marie
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correction from my earlier comment (Peope think we should NOT talk about it)
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Morning Beautiful Sister Survivors, I have been *NED* for 4 years now and I still barely get myself to work each day and I rarely leave my room/house on the weekends. I purchased a Harley Davidson to try and get me out and REGAIN A LIFE.. however, I am still in my room. I am so unsure about even how I feel. I do know that I don’t feel “RIGHT”… I am trying to grieve and be happy at the same time.. I grieve in my alone times.. or atleast try too and when around family I put on the face they are seem to see.. A SURVIVIOR.. I look good everyone says but in side I feel so alone, so ugly, so UN NORMAL…. I am still trying to find.. the new me. I pray daily for enlightenment,
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OK TY
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Reblogged this on NED Retreat – Moving Beyond Cancer.
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I don’t have any advice because I am going through the same feelings as Ann is. When I read how she was feeling my jaw dropped because this is exactly how I have been feeling. Like what is wrong with me, why do I feel so irritated by such little things and so angry and tired like I haven’t slept in days. I know I have always been a little snappy but these past few weeks I been like don’t talk to me or I’ll bite your head off. I hate the way I feel. I finished my breast cancer treatment in July and I felt emotionally fine until recently. I felt a little at ease after reading this knowing that it isn’t just me. Thank you for sharing.
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Hi Cristina, welcome to Journeying Beyond Breast Cancer. The first thing for you to know is that you are not alone in trying to make the adjustment to life after cancer. So many of us have been taken by surprise at the intensity of our feelings of vulnerability, fear, anger, sadness and depression. No one seems to prepare us for this part. Please check back in with us again and feel free to ask questions or comment any time you wish – you will always find a listening ear here.
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it will be 2yrs in jan 2013 since the bombshell of diagnosis dropped,only just retired a very active and otherwise happy person always being there for others with problems im 65yrs the word breast cancer still rings in my ears and yes im still dancing with fear/depression/anxiety i sometimes wish i dont want to wake up as sleep is this only escape from this torment i go about my duties with little motivation have to push myself and cant wait to get back to my solitude in my bedroom yeh i sometimes cry seems the only other escape from these pent up feelings wondering if you might be the unlucky one who eventually wont make i truly wish i could run as far away from myself as i can or i would have a mental block on these disabling feelings oh how i want to carry on living somehow im held back we are not made of steel and the treatments take their toll on our fragile emotions along with ongoing side effects long after treatment it feels like an assault on your body and wellbeing as been abused what you really want is a magic bullet that says cured it wont come back and yes we feel cast out after treatment ends and people seem to want you to be as normal as you was previously god i feel like saying you want to give it a try yourself then you would understand im grieving for my changed life will never be the same learning to live with it is the hardest part its our mortality facing a possible threat to it scares the strongest people and i swear if any of us can come to terms with it eventually lessening the fear over time all being well then we face practically anything that comes our way i swear to myself i wont let that damn critter win even through my tears love and support to all who are have been affected and tormented by breast cancer in its many forms i wish you all well and this forum lets us feel not alone after all
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That post did me a world of good. I finished my first treatment cycle late December and when I asked what I should do between now and my next check in April, I was told, “Reprenez votre vie, Madame.” (Start up your life again ma’am.) I tried and then a few weeks ago I started having anxiety attacks followed by depression. All the activities I tried to engage in weren’t really helping. I finally talked to my doctor who said the magic words: this is completely normal and let’s work together to get you passed this.
I’m finding it very hard to talk to my friends and family about this. I should be THRILLED not be doing chemo anymore, right? Not so fast. When I was in active treatment I was in the heart of the action. I was doing something and I was surrounded by people who were there to help me. Now I’m in limbo – not “sick” but not “cured” either. I’m at home, I take my medicine and I try as best I can to stay in the present and not “live in the wreckage of the future.” I gave it a lot of thought and I finally came up with an analogy that I could use when talking with others – sometimes that works far better than lengthy explanations.
“I feel like a marathon runner who after persisting and suffering to reach the finish line, gets there only to discover that there is no trophy, no prize, no cheering crowds. Just a note that says, “Wait here for the next four months and we’ll let you know if you “won” or if you have to start running again.”
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I am so glad to have found your post/blog. I have been through with my treatments for 9 months now, and I feel worse than I felt during treatment. I am tired always, have severe pain where lymph nodes were removed and in the breast where the cancer was. It is all I can do to go to work…social life is relatively non existant..strictly because I hurt all the time and am too exhausted. I have almost given up hope that I will ever feel normal again. Compile that with the constant fear of recurrance and you understand why some days can be pretty dismal. My friends and family are tired of hearing the “im tired” or “i dont feel good” and sometimes, I wonder myself if it isn’t in my mind…but days like today..I know that the hurt and exhaustion I feel IS real. Bless you all, and hopefully – together we will all reach some sort of normalcy in our lives.
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Dear Celeste, I am so pleased you found this community and took the time to share your experience, which is oh so familiar to all of us. Things will improve over time, but it will take time, so please be gentle with yourself xxxx
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I am sitting at my desk at work with tears streaming down my face. Reading your blog and all the comments has truly touched my heart….and made me feel so much better to know I am not alone or losing my mind. You have given me hope….just knowing I am not alone in my fears, depression, anger and guilt has made such a difference in how I feel right now. Thank you for such an important post – you truly made such a difference for me!
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It has been a year since my bilateral and treatments ended the first of the year. I have been on a roller coaster ride, good days and bad days. Healing both physically and emotionally is slow. Family sometimes though they mean well don’t realize the trauma that cancer causes. I know I am a survivor and I will forever have a new normal whatever that may be.
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Hi Lauri and Rosemarie, thank you both for your comments- you both sum up the emotional rollercoaster that the end of treatment brings. It takes time and as you say Rosemarie it is slow – but know that it will get better with time. Wishing you both all the very best health and happiness in your future.
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I am so pleased to have come across this site – I have just finished my treatment for DCIS 2 weeks ago which needed 2 lumpectomy ops and radiotherapy. The day after my treatment finished I seemed to fall apart – I know I haven’t had to go through as much as a lot of other people but this does not seem to help at the moment, in fact it makes my feelings harder to deal with as I know I should be so very grateful for this and the fact that my cancer hasn’t spread and I feel guilty that I don’t seem to be able to pick up the pieces and carry on. I feel very sad and also guilty for what I have put my family and friends through. I am struggling at work and everything seems an effort – I’m in tears writing this to you now, I am normally so good at taking everything in my stride and to enjoy life and appreciate what I have. From reading the comments here I realise that it is ‘normal’ to feel like this and to just give it time for my feelings to settle down and accept what has happened and not to feel guilty about things. Thank you so much!
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I was diagnosed with colorectal cancer stage 3 May of 2014. I have had excellent support systems and care through my surgical and oncology team. I should be walking on cloud nine as the adjunctive chemo/radiation showed a complete response and my pathology report showed absolutely no Cancer cells seen. However,it has not stopped my emotions from making it so difficult. Compared to my life, cancer has been a cake walk, and now that I am nearing the end of treatment I find myself feeling ambivalent about many things. I feel like I do not belong anywhere and feeling lost in a sea of emotions that I do not know what to do with. I live alone and have lost so much, including a 17 daughter to injuries that she sustained in a motor vehicle accident many years ago, we had to take her off life support. I find myself wondering, why do I get the miracle? After my separation of 35 years, 7 years ago, losing the balance of my children, as they took sides. Going through this illness alone ….. honestly some days I wonder, what the point is. I don’t know what the future holds, sometimes it is difficult to hold on to HOPE. I do have a strong faith which has brought me through much of this. But even my faith wavers.
Brenda
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It’s a terrible feeling at the age of 64 to be completely out of control
I’m six months past my breast cancer radiation treatment and my body is better but my mind has gone somewhere
My oncologist gave me anti depressants that worked for a bit , now I’m double up on them and smoking weed. Nothing seems to bring me back
I am not the same person I was – I’m confused- angry – and sad most of the time
I’m doing things I never would have done a few years ago
I feel like screaming most days. Haha
Here’s what I’ve been doing to try and over come these feelings – nothing has been working
I walk 6-10 KM every day
Stopped smoking
Eating healthier
Most days I’m sorry to say I wish I were no longer here.
That’s me
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I am being treated for Stage 2A breast cancer right now — one more chemo treatment to go! My doctors have told me “we’re going for a cure here”, and I totally believe it WITHOUT QUESTION.
Breast cancer is not automatically a death…
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Hi Julia, it’s good to hear from you. Absolutely not a death sentence. It’s been over 12 years since my own breast cancer diagnosis and I am fighting fit!
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I’m glad I stumbled on this site. No one tells you how your going to feel after. The emotions, the dead nerve skin, pain where they removed lymph nodes. I can deal with the scars, those I expected.
Anger is there often. I don’t want to hear I’m lucky to beat cancer. Beat it…it’s always there. Everytime you look at your altered body. Still taking medication that put me into a second menopause.
I do my best to stay positive but sometimes it’s hard, like when I try to find a bra, enter all my info on website to be told I’m outside their size range, your size is only 17percent of women, or check back if anything changes, like I’m going to grow new boobs.
Nothing like making me feel like a freak.
So I’m destined to not have a bra, and continue to wear surgery bras. I’m not looking for fancy or sexy just something that fits and doesn’t fit.
So I’m happy I survived, I just wish I could feel normal.
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Dear Mary, so many of us in this community understand the feelings you are experiencing right now. It’s perfectly normal.I promise you in time you will start to come to terms with your “new normal” but it will take time. Please don’t put yourself under any pressure to feel positive – that’s only added pressure you don’t need right now. You have every right to be angry and frustrated and to feel like you do. With your permission, I’d like to share your thoughts with the wider breast cancer community for their advice regarding a bra fitting. I am not sure where you are based but if you let us know perhaps we can find a fitting service for you that will be more helpful. Hang in there – I promise it gets better x
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Sure you can share my post.
I’m in the Detroit area. I have been to fittings and they always want to fit me with a bra that pushes the breast toward the center front. They don’t get how uncomfortable.
Suggestions for a company that specializes in cancer survivors would be worth trying.
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Hi Mary, I’ll put the word out next week in a new post.
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