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End the Secret of Cancer Survival
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Why can’t we be frank about remission?
Little is known about what happens after the cancer ‘war’ is won. How does the survivor put their mind and body back together? How do they leave the 'Cancer Crusade' behind?
Information on life after cancer is so sparse and vague that when you do come to survive, it’s almost a surprise. After all, mention of cancer in the media comes with the connotations of death. There might be the human interest story: ‘Oh bless them for being so brave,’ or the many stories of fundraising efforts to support the massive charity industries. But rarely do people stand up and say, quite frankly, ‘Hey, life after cancer can be pretty shit.’
It’s all about gratitude
When you seek support from the very people that helped you reach remission - your nurses, your doctors, those closest to you - they often don’t know what to say and don’t know how to help. Perhaps they give you the usual advice: don’t smoke; cut down on drink; eat your greens; get off the sofa. But that just doesn’t seem to be enough. It’s not adequate to make you feel happy and healthy again.
The remission narrative expects you to forget, move on, and feel grateful. But how can you feel gratitude when you’re still in survival mode expecting the sword of Damocles to swing down on your head? Or when your body refuses to behave in the way it always did? Or the very loves and activities that used to define you as a person are now out of reach?
Isolation
I beat myself up royally during the first year of remission. I had no one telling me it was OK to feel frustrated, or angry, or hurt, or confused. I had no-one to show me how to go about picking up my old life again. And physically, it seemed everyone before got over cancer and returned to full health. I had no role models to look up to.
It is confusing to know where we fit: we don’t feel 100% healthy, nor are we ‘cancer patients’. It is difficult to feel normal. With no voices or stories on remission, there can be no normal. And this silence makes you feel like you're failing; that you're not doing cancer recovery well enough. Everyone else has moved on, why can't you?
Putting on the 'stating-the-bloody-obvious' hat: I see now there's no point comparing my recovery to anyone else's. We all had different cancers; faced different diagnoses and treatments; and we have different support networks. We all deal with cancer differently. Comparing ourselves would be like comparing a ballet dance with a Miley Cyrus twerk: they're both impressive dances... but they're different.
Yet hearing more voices would be so helpful. Perhaps we can all do something to make it easier: reach out to each other, the media, the powers that be, and share our experiences. Shout it from the rooftops.
Because we aren’t cardboard heroes disappearing into the sunset, but people who still have doubts, fears and health issues. People don't like to talk of ill health, but cancer survival need not be a secret.
Make remission less isolating: get in touch to share your experiences -whether that's your story, a practical strategy, or a helpful organisation.
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Agree so so much with this , I’m not a superhero, I’m just trying to get my life back on track. The pain of recovery is sometimes as bad as the pain of cancer itself , but how do you say that without seeming ungrateful...
Have just read this post. Absolutely nailed it..sadly for those who have never personally experienced cancer, will just never know how it feels. I tend not to bother telling people how I feel because they don't truly understand. It is reassuring that I am not alone ?
Why do I feel guilty whenever someone dies?
I'm going through this right now just found out a friend has just passed away her and her husband didn't tell anyone she had cancer.
It came as a big shock she was only 55 yrs.
Feeling tearful today still can't believe it, I got the all clear 4 months ago finding it hard to get anywhere near how I was before diagnoses.
I just cant understand in this day and age why more is not done by the medical profession to help people after the end of treatment - there would be less need for medication or stress for the patients, less visitors to the doctors for help etc. In The Netherlands, my surgeon arranged for me to do three months of rehabilitation after my last bout of surgery although I was over the age limit - I was 75 - here in The Netherlands and that helped me so much. Not only did we do swimming and physical exercising but there was also physio therapy and the Dutch patients had pep talks, talking to a physiologist plus meditation. I just feel that mental stimulation/advice has been sadly neglected everywhere. I have learnt so much from the Cancer Survivor's Companion book, I can't recommend it highly enough but also feel that classes having discussions on such a subject would be great. We have a problem in The Netherlands as although there is a very large English speaking population here there is really nothing for us in the way of help/counselling etc. Sad. Is there much mental/rehabilitation done in UK as have not lived there for over 50 years!
This is all so true. Great to see in print what I have been thinking over the last 17 months ( and counting) . The expression I get off people is when asked how I am and I say- not having a good day - is “ Oh well you are here aren’t you”! Makes me feel They think I am after sympathy which I am not so just usually say now that I am ok even if I am not and walk away. Not everyone is like that. I have a friend who can tell over the phone how I am even when I think I am being upbeat. Or will just look at me and say “ Not one of your best days”. Even if I am out With her all dressed up, makeup on and hair done. ( Now it is growing back!)Thankyou for that post. Wish some people I know could read it.!
Thank you for post. I'm feeling so alone and tired today and this really helped.
I finished radiation 2 weeks ago and cannot live up to the expectations of others. I'm so tired.
Thanks so much for this .. recovering myself and feel as though others expectations of me are growing and I'm just so tired! Good days and bad days ... not feeling like myself at all .. very strange experience but good to know I'm not alone.
When all the treatments finished I felt abandoned and alone, you are still in recovery, but everyone has the attitude "your treatment is over now get back to normal and get on with your life". 18 months down the line and I still get people saying to me "but your treatment finished your now well, you have now got to forget it happened".
It is so difficult to explain how you are feeling, when you are having treatment there is a routine, my days were mapped out with daily radiotherapy then weekly appointments, fortnightly chemotherapy sessions, scans, MRI, check ups, then all of a sudden it finishes and you feel lost and alone, you have now got a "new normal" it is very scary, you have good days and bad days and even some really bad days, I am so grateful to still be here but I feel abandoned.
When all the treatments finished I felt abandoned and alone, you are still in recovery, but everyone has the attitude "your treatment is over now get back to normal and get on with your life". 18 months down the line and I still get people saying to me "but your treatment finished your now well, you have now got to forget it happened".
It is so difficult to explain how you are feeling, when you are having treatment there is a routine, my days were mapped out with daily radiotherapy then weekly appointments, fortnightly chemotherapy sessions, scans, MRI, check ups, then all of a sudden it finishes and you feel lost and alone, you have now got a "new normal" it is very scary, you have good days and bad days and even some really bad days, I am so grateful to still be here but I feel abandoned.
Such a useful article and all so true. Feeling very adrift at the moment with a dreadful cough and cold. Am I okay after lung surgery? I have no idea!.. I do get great help from my son who has had 2 kidney transplants and feels exactly the same at times.
Hi, just joined. I finished chemo last June but feel very down most days to the point of I donteven get dressed. I had Ampulla cancer and had whipple surgery (not pleasant) I feel like I should be grateful for being here (as I often get reminded) but really don’t know what to feel most of the time. Feeling like this isn’t making any sense? Anyone else feel like this?
I’m on Letrozole and I have joint pain, carpal tunnel, trigger thumbs, itchy vulva, sleep problems, weight gain. I also have an incredibly sore breast after Surgery, chemo, and RT. Chemo robbed me of some of my memory and I struggle to remember key things from my past. I used to have a brilliant memory. I awake in pain every morning and move like a ninety year old for the first hour every day. Mentally I struggle with the loaded gun to my head fear of the cancer returning. People I meet say “oh you look fabulous” and I internally scream, “well I actually feel like shit” while smiling politely in response. Everyone, except my GP, thinks I’m doing great. I honestly thought when I got my diagnosis, that I would have a totally shit year and then move on, and saw treatment as a means to an end. I really did think that I could then pick up my life and move on with a few scars to show for my ordeal. I didn’t realise I would never be physically or mentally the person I used to be. I guess I’m really supposed to be grateful to be alive.
This is exactly me too. I'm on anastrozole and feel I have aged 10 years with all the joint pain. I'm also still on herceptin with 3 more injections to go but seriously thinking of asking if I can stop as I feel so tired but trying to work full time. I have such bad peripheral neuropathy in my feet it is really painful to walk and keeps me awake at night. But the tablets available to help with that turn me into a zombie so not conducive to living and working a normal life. I feel so angry most days at the way this has changed my life so much. I feel under pressure to exercise as that's supposed to help with survival but I just don't have the energy so this just adds to things that make me miserable. I also feel guilty for hating the way I look with short hair instead of being grateful for being alive. People told me post treatment would be hard but I didn't believe them. Now I do.
This is exactly me too. I'm on anastrozole and feel I have aged 10 years with all the joint pain. I'm also still on herceptin with 3 more injections to go but seriously thinking of asking if I can stop as I feel so tired but trying to work full time. I have such bad peripheral neuropathy in my feet it is really painful to walk and keeps me awake at night. But the tablets available to help with that turn me into a zombie so not conducive to living and working a normal life. I feel so angry most days at the way this has changed my life so much. I feel under pressure to exercise as that's supposed to help with survival but I just don't have the energy so this just adds to things that make me miserable. I also feel guilty for hating the way I look with short hair instead of being grateful for being alive. People told me post treatment would be hard but I didn't believe them. Now I do.
Not long finished treatment and feel lost. My body is still quite weak. This post has been really helpful as I felt quite alone.
What helped? First, finding out about the information that wasn't given before or during treatment. Second, writing articles and speaking at conferences to try to improve cancer treatment and CARE. Third, setting up a cancer self help group & running it/training in counselling/doing what I always wanted (eg p/t art course which unexpectedly lead on to fine art degree) &, hugely, working alongside health professionals (service user involvement locally and nationally) to bring about change, plus writing my book - not just a 'how it was for me' story, but with research references to better/evidence-based practice (Nothing Personal, disturbing undercurrents in cancer care, Radcliffe Publishing Ltd) - all changed my life - gave me goals, meant I met some great people and continued into older age.
It is 4 years since my bnc, had mastectomy and felt ok, in fact felt ok before diagnoses, the worst was chemo, people who have not gone through it just don't have any idea how ill you feel, what I cannot stand is you have to be positive, eeee I could kill when I hear them words. It took me a good 2 and a half years to feel normal again, what ever normal was, I am on letrozole and have trigger finger and a few aches and pains, but I do walk a lot look after my grandchildren and just get on with every day life, I do not dwell on it, when people ask are you ok, I always say fine and most days I do feel fine, all the best to you people who are suffering, take care.
8 years on, still angry, still grieving although the terrible fear of recurrence has lessened somewhat. Never talk about it though as the narrative is 'be grateful'; 'be a great role model'
I was diagnosed with BC last October 2018, was meant to be lumpectomy and radiotherapy but a biopsy went missing and I was found to be Her2+ just before I was going to start rads. Rapid last minute change to chemo, rads and Herceptin without much time to readjust. Have 4 more Herceptin to go and also on Letrozole. I’m in a limbo. One foot in recovery, one foot in cancer. I feel ancient with the usual complaints: aches in joints and muscles, chemo fog, sadness and a sense of loss. I’m having counselling with a specialist cancer counsellor paid for by NHS and have done some moving on workshops with Macmillan. It’s all helping but friends don’t really understand why I need all this. I’m scared about when the counselling will stop. Where can I put this sense of being lost? But I get on with things as I was brought up to be stoic. This forum has been very helpful just to know I’m not going mad and my feelings may be unwanted but are so normal for many of us. Love to you all
Totally agree with this next week is my last treatment and after 15 months I should be happy, elated and joyful. But I am frightened as I begin a new job in a few weeks. I worry am I well enough to return to work, will I be able to cope? I have done the HOPE course but cannot find anything esle to support me. All support groups appear to be in the day no use if your working. So I feel at the moment cast adrift on a life raft in a huge ocean of uncetainity.
Amen to all of that getting my life back to some kind of normal has been hard ,my new normal and the new me are completely differant from what came before .
Everything in what you say is exactly how I feel at the moment-everyone expecting me to get back on with everything as if nothing has happened!The fear of it returning consumes me some days and I can’t remember what my pre cancer self was like as I’m definitely not the same person anymore and that’s hard to accept.Im tired of people assuming I’m fine just because treatment has finished.There needs to be far more support post treatment which is when I have needed it most!
I agree. I am 2 months post 'final discharge' after AML (Chemo only - No BMT)
And am so so tired all the damn time - no one ever told me how tired I'd feel after treatment no matter how much or how little I do - no one told me I would suffer the most almighty panic attacks due to PTSD after all what I have been through. My councillor just tells me to take one step at a time - but one step into a crowded place is more than enough to send me over the edge into a panic attack.
My stomach / digestive system is absolutely battered.. I'm 34 and possibly have had my fertility affected due to treatment.. yet another silent/invisible but incredibly hard thing to cope with.
There should be more done to help us survivors get where we need to be post treatment!
Thank you for this post, glad to hear I am not alone in feeling this way.
I’ve just got fed up with people assuming I should feel ok physically and mentally because I’m in remission. Started to reply “fine” when asked how I am as people just don’t get how I feel.
It's my 1 year anniversary from my diagnosis from breast cancer today. Finished chemo and radio in Feb and was praying for my new normal to come, to help me get myself back or at least a version of me. I grieve the loss of who I was and dont know how to find who I am. I think being back at work would have helped but I'm working from home due to covid so that escapes me.
I'm in the little house that I bought 2 months before diagnosis that I had put all my hope's and dreams into and now feel so lost. I am grateful and have counselling every week to help me.
It's so difficult isn't it feeling this way. Best wishes to you all xx
I am now on anti hormone treatment, after lumpectomy and radio I still feel tired, achy, head aches (with the drugs) but friends say you must be pleased it’s all over and done with. ? yup I’m happy I’m always with head aches and I’m scared the more I take these drugs the worse I’m going to feel. Xxx
Totally agree with these comments. Thank you for sharing this, too many people think that after you get the 'NED' everything is easy and ok. It's not.
I totally agree. I was told what sort of side effects to expect during my treatment but no one told me whatto expect after treatment. I was worried, scared etc constantly thinking was it normal? Is this right ? Etc. I could find very little advice on what to expect and how long it would take me to start feeling normal, or even what my new normal would be.
Hit my 1st year post and as much as I'm greatful to be alive my diagnosis like most came out the blue and I have more problems this side of it than before I was told at the very beginning there would be support on the other side Where? I feel because I made it and it's no longer here I should suffer the aftermath in silence why? My life got derailed and I can't seem to get back on it
This sums everything up for me. At one point in my recovery I went through a phase of negativity and feeling down and sorry for myself. And when a work colleague said to me "at least you're still here". It's not that simple. Nobody understands until you've had cancer, how much the illness affects you, not just physically but emotionally and mentally! Everything changes! You come out a different person than you were before you had the cancer. It's just so hard.
I've given up telling people how I feel, because they often make me feel that I'm looking for sympathy.
The truth is, those who have never personally experienced cancer, will never know how I feel because they don't truly understand.
I'm 3 years in remission and still getting chemo induced peripheral neuropathy effecting my mobility. But the most annoying of all my post chemo symptoms are fatigue and brain fog.
There’s just nothing - we’ll start from more meds and a print out from some clever psychologist who wrote some meaningful words about how to move on.
The meds make me fatigued - like fully fatigued, heavy arms and legs and zero worthy energy.
The meds mess me up… I’m on a new one like a Guinea pig because - I’m a high risk of reccurance … ah and hearing the onc tell you that is mad! Off it’s rocker in fact, because how do you /we navigate that information? We take the toxic drug that renders us pretty much disabled in an effort to prolong this new ‘life’ that we should be grateful for… I mean.. we’re alive!!
Did anyone earn us how shit we would feel?
Fatigued, fat from treatment and steroids, emotional waiting for the axe to fall again, a lack of patience for those who don’t get it… I’m not explaining because they think I’m being dramatic.
Oh the lack of intimacy - nobody tells you that you will be robbed of your libido as well as your hair and memory - if you try to get some sexy time your lady bits will clamp up to the point of needing a crowbar and an oil can to get anywhere close.
Anxiety, and depression.. oh but you’re alive what on earth are you sad for.. you should be dressed head to toe in pink and racing for life with your sisters!
This post hits the nail on the head. I am back at work full time and this week has been so hard after previously having a few weeks feeling like I was back to ‘normal’.
We need to realise that it’s good weeks and bad weeks . I find that looking back at how I was 4 months ago compared to how I feel now keeps me grounded and positive but I do feel people think I’m back to pre diagnosis me!
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Feel a bit of a fraud when I say I had cancer because it was gone before I was told about it, so wasn't lying with it hanging over me. Surgery for a cyst which they didn't know was cancerous until after and it was very early stage and the type it was wasn't really an aggressive one so didn't need any other treatment. Like the post says it still feels taboo to say some days can still be sh*t despite surviving and it isn't like you've got some sort of sunbeam enlightenment. Like I'm grateful for the doctors and the surgery and I don't want to be dead but at the same time I'm not singing and dancing about life after, there's still the same problems and life to go back to. Then comes the awkward situation of other people talking about relatives and people they know having cancer and I feel really cagey as I know it probably isn't a good outlook for them so I just end up keeping quiet. It's not like I can just go up to people and talk about it either as they'd think I was an a*sehole for not appreciating surviving when a family member of theirs died from it. All very weird.