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End the Secret of Cancer Survival

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 bleeding with the connotations of death, death, 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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Discussion

Tracey’s Hammond (not verified)

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...

Kerry Barker (not verified)

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 ?

Mike Whalley (not verified)

Why do I feel guilty whenever someone dies?

bryjan

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!

Val Davies (not verified)

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.!

Margaret K (not verified)

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.

Ali (not verified)

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.

Catharine Wynn… (not verified)

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.

Catharine Wynn… (not verified)

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.

Anonymous (not verified)

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.

caz

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?

Kathy (not verified)

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.

Catherine O'Hara (not verified)

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.

Catherine O'Hara (not verified)

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.

Carol Macey (not verified)

Not long finished treatment and feel lost. My body is still quite weak. This post has been really helpful as I felt quite alone.

Mitzi Blennerhassett (not verified)

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.

Monica Walker (not verified)

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.

Hazel (not verified)

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'

jenny etches

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