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A Walk Through No Man’s Land
Where ‘Life With Cancer’ meets ‘Life After Cancer’
What does ‘life after cancer’ mean for me? I thought writing about it would be easy –I’d share how finishing breast cancer treatment has led me back to a wonderfully full and satisfying life. I’d be picking up where I left off, enjoying and savouring every minute of my second chance whilst embarking on some new projects with the vigour of someone who has confronted their own mortality square in the face.
But I can’t write about that because that is not what is happening nor what has happened.
When is ‘Life After’?
To start with, I am not sure when ‘life after cancer’ begins. I was diagnosed with breast cancer a year and a half ago, swiftly underwent surgery, followed by six months of chemotherapy and then radiotherapy. I have had a clear mammogram and the ‘we’ve taken the cancer out of you and can’t see any more in you’ talk from the oncologist, but I’m still undergoing the herceptin mopping-up treatment and I have to take a daily tamoxifen tablet for 5 to 10 years.
So, when does ‘life after cancer’ begin for me?
Part of me thinks that I am not there yet. The combination of ongoing treatment and feeling generally rubbish quite a lot of the time reminds me that I am not quite over the worst. However, there is a little voice in my head telling me that it has started already: that it began the day radiotherapy ended because that marked the end of the ‘big-ticket’ treatment and from that day forward I have been able to start to recover both physically and emotionally.
I don’t even know what to expect from life after cancer. What will it be like? Will I be the same person as before? Or will I be different?
I just wanted to return to normal
All the way through surgery, chemotherapy and radiotherapy I thought that I would return to normal: to the same person that I was before cancer came to stay. In fact, I was really keen to return to normal, to view my cancer diagnosis and its treatment as a little hiccup in my life which would be overcome and then quickly forgotten.
I naively thought that I would finish treatment, get the all-clear, spend a little time recovering and then quickly step back into my pre-breast cancer life. Just pick up where I left off.
So much has changed
But that isn’t the case. I have forgotten what pre-breast cancer ‘normal’ is. That flew out the window on the day I received my diagnosis.
So much has changed since then that it seems impossible to go back.
I have changed physically… unpleasant chemo side effects still linger around. I look different to pre-breast cancer me when I look in the mirror and see my new very short hairstyle. I am tired a lot of the time. I have every single menopausal symptom going. I have to take life at a slower pace and I feel physically older and more fragile.
I have changed mentally… I am still suffering from chemo-brain-absentmindedness. I can’t multi-task like I used to. I get overwhelmed easily and I am really rather forgetful.
I have changed emotionally… I am no longer a level-headed person but one whose moods swing up and down like a yoyo. My anxiety levels are often pretty high. I am fearful about the possibility of recurrence and the spread of cancer. I often feel unable to cope.
Add to this the expectation on the part of friends and family that it is just a matter of time before I am normal again. People don’t realise the pressure this view puts upon cancer patients.
I am certainly not in a place that I would like to think of as my ‘life after cancer’.
No Man’s Land
So I am currently in the No Man’s Land: an interim period between life with cancer and life after cancer when tumours are gone and you have finished some, perhaps not all, treatment.
It is that time when you can’t quite put your finger on where you belong. It is that time when you feel that you want to move forward, but part of you still wants to hold onto cancer treatment as a form of security blanket. It is that time when you are partly excited to move forward with your life, but at the same time you are fearful because you have just spent the past year wondering whether you are going to come out. It is that time when your mind wants to move forward, but your body can’t quite keep up. It is that time when thoughts of survival are far too fresh. You just don’t know how to move forward.
So, whilst I know that at some point in the not too distant future I will have to step out into the world again as the
same, yet different, person, I am going to quietly remain in this little interim bubble. I am not going to rush this stage, but rather I am going to take it a day at a time. I am going to address the issues that are preventing me from moving on: the physical, mental and emotional issues. I am going to patiently wait whilst my body and mind have time to recover from the onslaught that I have faced for the past eighteen months. And then one day, without really noticing it, I hope to enter life after cancer whereby I will just quietly and gently slip into my new normal.
Helping others helps me
Towards the end of my treatment I founded Ticking Off Breast Cancer www.tickingoffbreastcancer.com, a website dedicated to helping people through their breast cancer treatment from diagnosis to living life to the full once treatment ends. I decided to set up the website to help support those who do not know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the online support for breast cancer; and those who are scared to go online for fear of what they might find. The website provides practical advice for each step of the way, together with many links and signposts to other online resources. And whilst helping others has always been my primary goal with this website, I have actually found that putting it together and keeping it up to date has helped me enormously in terms of moving forward.
Sara was diagnosed at 42 and is now searching for her ‘new normal’. Follow her on FaceBook, Twitter and Instagram. She’s collated some resources to help people move on after cancer treatment ends, over on her Life After Cancer page on the website, www.tickingoffbreastcancer.com.
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This is exactly how I feel! My treatment path is taking the same route. I have four more Herceptin treatments to go & to the outside world of friends & family i’ll soon be back to “normal”. But lying awake at night with insomnia it’s very hard to image a time when I will feel completely free , if ever .
I know how you feel, I didn't need herceptin, thankfully, but at 39 I moved straight into full blown menopause! With no option of treatment! 8 years on I am getting there - I honestly don't know what is normal getting older symptoms or what is cancer related. It's probably the best way - as I even forget most of the time I had it - yes that is possible and for me the best way. Breast Cancer was the lowest point in my rollercoaster of a life, but I have had lots of high points since, and value them more than I would have!
Good to know I’m not alone in this space. Mine is bladder cancer but all of these feelings are where I’m at. Thank you for sharing.
I was 40 when I was diagnosed with stage 3 breast cancer in 2014. After 3 operations, 6 rounds of chemo and reconstruction I was given the all clear in 2015. I am now into my 4th remission year but cancer has definately changed the person I am. I take tamoxifen daily and will do for a total of 10 years. The side effects are rubbish. I’m constantly exhausted, suffer from every menopausal symptom going despite still having periods and honestly have a mind like a sieve!! But I will put up with all of that if it keeps the bad stuff at bay and gives me more time with my family. I was naturally an anxious person and had depression prior to my diagnosis and this returned and I find I’m a better person just taking anti-depressants. I know I’m so lucky to still be here and I thank my lucky stars everyday. I wish all of you going through treatment and in remission all the very best. X
Eloquently and honestly written..
The fears, anxieties and questions are exactly what are running thro my head usually about 3 am every night.
I was diagnosed with grade 3 triple negative breast cancer in April 218. 2 surgeries 18 eeks of chemo (extented due to a very frightening, potentially life threatening bout of sespis after first chemo session) 4 weeks of daily radiotherapy. A sense of abandonment as no longer under any particular care. Have yet to see the oncologist for the all clear as treatment only finished 14th Jan 2019..I feel happy it's all over but apprehensive about the future. So fatigued its frustrating. Yes everyone expects you to be ecstatic and back to your pre diagnosis self. The incidence of recurrence in triple negative breast cancer is higher especially in the first 2/3 years. So am exercising everyday as they say this can reduce recurrence taking a particular biphosphonate (Ibandronic acid daily with bit d&calcium tabs twice a day and because of those am taking omerazole for the stomach all these meds for next 3 to 5 years (as there has been some research that the ibandronic acid can reduce the chance of recurrence).
Am eating as healthily as I can but still have nausea and horrendous peripheral neuropathy in hands and feet and the loss of nails makes daily tasks awkward. The aches and pains in joints and muscles from the docetaxel(chemo) was unbelievable ad whilst improving 3 months on still causes pain.
I Am looking forward to a new life after cancer as I don't think anything will ever be the same as before cancer..
I was diagnosed with HER2 breast cancer in 2017, finished chemo in April 2018, had a mastectomy in June 2018, finished radiotherapy in August 2018, had my 1st year mammogram in October 2017 which was clear, I’ve never been told I’m in remission by my oncologist, how do you know whether you are in remission or not.
Remission generally means you have the 'all clear' - there is no sign of disease. Worth checking with your oncologist, but it sounds like you're in remission to me! Laura x
This exactly how I feel. I was diagnosed 5/15/2018 with stage IIA however my cancer only had 2 percent hormone which meant I cannot take tamoxifin. I had 6 months of chemo, 35 Radiation treatment, lumpectomy and now I am doing Herceptin and perjerta every 21 days for about another year. I would like to wake up one morning feeling like myself. This has taken a physical, emotional and financial toll on my family and I. I keep telling myself this is my new normal but I do not want it to be. The reality is I will always being worrying about recurrence and dealing with anxiety, neuropathy, and all the unknowns. I just want move forward get back yo my life
Thank you so much for this, reading with tears in my eyes as you could be writing this for me. This is me right now. just 3 more Herceptin to go and almost in the verge of asking if I can stop early as I am so exhausted. How do you manage that feeling of wanting to take one step at a time but being back at work full time and not wanting to appear weak or different to everyone else? And not wanting to lose what you spent so many years achieving? I am having a constant battle with myself between allowing myself to let go and not wanting to give in. It's truly exhausting.
This article really helped me. I was convinced that I was 'semi-back to normal', and whilst I was still being kind to myself, I had become complacent about consciously doing things for my recovery on the inside. Over the last week, after my first annual check-up, I found myself increasingly overwhelmed at work and having a couple of days off and finding my way onto your website has helped me to pinpoint just what it is I'm going through. Thank you!
Hello Sara, thanks for sharing. Glad to hear I'm not only one with forgetfulness. I find I can't remember people's names. I found a yoga teacher who agreed to do a yoga class for post cancer patients. It is wonderful. Really helps calm mind and get rid of joint stiffness. Have also started lymphatic drainage with a reflexologist. It's wonderful. Gets rid of neuropathy and bloating. You need to take control of your own life after cancer and find the best method to heal mind and body and stay well.
I really get the No mans land sentiment, excellent well written piece. Once you realise that remission is the start of the journey, I feel that is when you start to have time to begin the process of moving forwards.
13 years post diagnosis and treatment at 27 and this article made me well up...not sure you ever get over it but you definitely enter a new normal stage in your life.
A fantastic piece of writing, this is exactly how l feel...... October 16th 2017 will be etched in my brain forever when l was diagnosed with Hodgkins Lymphoma and the journey began. I am in remission which l am grateful for but l am in extreme pain with something else which l am going through more tests to try and get a diagnosis for hence the PET scan on 6th October which takes be right back to the cancer days as thats what the doctors are trying to rule out now. I am in such turmoil inside , but feel l need to be upbeat and bubbly as the old me because the cancer has gone , and enjoy life as that's what friends and husband keep telling me!!! I just feel like screaming, l very very lost , very very tired and very very low .....
I’m so glad I read this as the no mans land perfectly describes how I feel at the moment. I was diagnosed feb 19, mastectomy and failed recon April 19 and hormone therapy. I don’t really know where I am and waiting on further surgery isn't helping especially when the pandemic puts everything back for possibly another year. I want to move on but I’m not sure how to and I’m still trying to come to terms with the emotional impact. Some days it feels like life has moved on and other days like I’ve just been told I have cancer and the massive shock that that brought. It’s a comfort to know I’m not alone.
I could not have explained how I constantly feel any better than you have, thank you.
Brought tears to my eyes reading this. Could be me writing this, as exactly what happened to me, and how I am feeling. I think "lost" is the word to describe how I feel at the moment. Hair has grown back totally different, tight and curly, I look and feel like a different person. awaiting further reconstructive surgery which was postponed due to coronavirus, am on tamoxifen for approx 10 years, as well as some monthly injections in my stomach. Everything is different now. Nice to know I am not alone x
Wow. I could have written that...it’s me to a tee. I had bowel cancer and have had the all clear, but I still have fatigue and aching joints from chemo....I had my ovaries removed and had surgical menopause...every little ache or pain in my body I think the cancer has spread. It’s hard to keep a lid on it . Thanks for your article., very helpful to know I’m not alone
I haven't even reached your stage yet - it will be 6 months this Friday since I had my biopsy - but I know what you mean already. I haven't had chemo, just mastectomy, radiotherapy and a lovely cocktail of hormone blockers, but these things alone will mean that I will never be the "me" I was. Not to mention the constant worry that it hasn't all been caught, and that I will have to deal with more down the track...
Hi Emma. In two weeks I will be at exactly the same stage as you were when you wrote your post. I would love to know how you are doing now, I am currently in ‘no man’s land’ and any glimmer of hope would help me immensely. Thank you for sharing your story
Perfectly put and thank you for sharing.
I feel like there is some pressure for cancer patients to do loads of incredible things and write some long bucket list and start bouncing around jumping out of planes or doing other radical things after treatment...when actually surviving is amazing enough for most of us!
I have just finished 17 months of Chemo of Acute Leukaemia and the last 12 months have been on an experimental drug as I was not able to have a life saving stem cell transplant... My fear of ‘what next‘ haunts me every day like a gun to my head.....
I have young children who keep me grounded in the every day and I have found that making a few flexible plans like returning to a bit of work and short holidays has given me some focus and lets me feel like I can return to normal life but at my own pace.and also let’s me feel like I can change direction if it isn’t working for me as I don’t know how I will cope physically and mentally but I know I can’t run at the hectic speed I did before blood cancer..
I’m 15 years past 2 ops for breast cancer chemo and radiotherapy but still not normal can believe it’s not returned as I thought I would die then
Feeling the way we do after the call saying you are disease free is totally in my opinion normal
Live life as positive as you can and if things take longer then so be it.
If you forget things and feel absentminded at times, so be it.
This time is for you now and no matter what happens it’s your feelings that matter the most. Judging yourself is not easy but pleasing yourself by letting your time be yours is.
You are the most important
Without you there is no you
Smile for you
Love for you
But most of all live for you
In these times be sure to be safe and trust in your choices
This all sounds so familiar. I didn't have the last 2 Herceptin injections as I was nervous going to the hospital during the Covid-19 pandemic. I'm just waiting for my 1 year on mamorgram, but have noticed changes so am suffering scanxiety at the moment. My 5 year drug prescribed was Letrozole, recently changed to Exemestane, although the side effects haven't really changed. The thought of five years of joint pain is really depressing and the thought of recurrence is always there. I'm not sure I'll ever be "back to normal "
This is totally me, while reading I was in tears like finally someone who can understand, is I feel like this is not one that gets it. To be told to be positive all the time is draining and upsetting. I’m really struggling at present