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Dublin: 10 °C Tuesday 18 June, 2013

Column: Once cancer has touched your life, nothing will ever be the same

Breast cancer survivor Marie Ennis-O’Connor says living past cancer is more complicated than simply being disease free.

Marie Ennis-O’Connor

WHAT DO CORONATION Street and Sex and the City have in common? At first glance, not much. However both shows had a common storyline in which one of its main characters was diagnosed with breast cancer. And while they accurately portrayed the shock and fear of a cancer diagnosis and touched on the rigours of treatment, the story lines ended abruptly when that treatment finished.

As is the way in soap-land, both Sally and Samantha quickly put the experience behind them, got on with their lives and appeared to suffer no lasting physical or emotional effects. But those of us in the real world who have been affected by cancer know that life is not like the soaps, and the story doesn’t end when treatment does.

Each year in Ireland, over 2000 women are diagnosed with breast cancer. While the incidence of breast cancer is rising, mortality rates are decreasing. The good news is that improvements in the early detection and treatment of cancer have resulted in longer periods of survival – more than 25,000 women in Ireland are living following a breast cancer diagnosis. As a result, researchers are focusing new attention on the long-term impact of cancer.

Post treatment

“Survivorship” is the new buzz word in cancer care and increasing recognition is now being given to the so-called “re-entry” phase of cancer treatment – that post treatment period which, while most intense for the first 6 months to one year immediately after treatment ends, can require months or even years to navigate. While it is necessary to do what we can to help and support cancer patients at the time of diagnosis and treatment, we also need to support patients when treatment ends. It is no longer just about saving a life, it is also about the quality of that life for the longer term.

Sometimes there can be a code of silence surrounding the aftermath of cancer treatment. Society tends to celebrate those who can bounce back from illness, loss and tragedy. We hear stories of how people 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. At least not straight away.

Move on

There is an expectation that when you walk out of hospital on that last day of treatment, your cancer story has ended. You are expected to close the page on that chapter and pick up the pieces where you left off before your life was abruptly put on hold with those words “you’ve got cancer”. But it’s not so simple. It’s a little like leaving school on that last day – sure, there’s a sense of accomplishment and relief, and maybe some excitement and anticipation about the future, but it can also be mixed with feelings of loss and insecurity.

The fact is that for many cancer survivors the end of treatment can be every bit as terrifying as the day of diagnosis. After cancer, you can feel cut adrift and lost without the regular support and reassurance of your medical team. You may feel emotionally and physically exhausted and you may not be prepared for the deluge of emotions that hits you in the days and weeks that follow.

Aftershocks

During treatment you have been so caught up in the day-to-day routines of survival that there may be little time to give much thought to anything beyond these routines. Now 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, sadness and depression. You may be filled alternately with relief and elation at being given a second chance and with anxiety, fear, and uncertainty as you struggle to come to terms with the physical and emotional aftershocks of cancer.

Once cancer has touched your life nothing will ever be the same. Life is uncertain for all of us, but those with a cancer diagnosis have a heightened awareness of that uncertainty. Cancer lays bare your vulnerability and underlines the uncertainty of life. I have come to believe that surviving cancer is more complicated than simply being disease free. It is a continual process, which involves taking the best possible care of your health, acknowledging all that has happened and knowing how and when to ask for support. Only then can you start to move forward with your life and uncover a greater purpose and meaning. This is true of all survivors whatever challenges life presents to us.

Marie Ennis-O’Connor is a breast cancer survivor and patient advocate with
Europa Donna Ireland, the Irish Breast Cancer campaign. Marie’s blog Journeying Beyond Breast Cancer was the winner in the best Health and Wellbeing category at the Blog Awards Ireland.

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Comments (53 Comments)

  • Am a 6 year oesophageal cancer survivor which has a very low survival rate still. I look normal apart from the scars (neck, back, tummy) but there are so many things that I can no longer do, eating is a huge problem as I can have to run to the toilet at a moments notice and can not eat much.

    Having said that, I have done a lot, I married 2 weeks after chemo (I was 32 when diagnosed) and I have a 30 and 26 month old so I am busy. But nothing will ever be the same again. I still get scared. I have a different view on life to most my age. But I am here and I am greatful for that.

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    • Pay heed all you shallow celebs. This is what a true hero is :) well done Aoife. Joy to read, wish you good health and all the best in the future :)

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    • I had the very same operation in June 07. Like you I can only eat small amounts of food often.i never eat apples or other fruits as they contain acid.i don’t mind the scars and have a scope every year.and see my consultant every six months.im a good bit older than you. Recovery must have taken six months.will never forget that terrible time.didnt mind the chemo or the radium.happy to be still around,!!!

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    • I had the very same operation in June 07. Like you I can only eat small amounts of food often.i never eat apples or other fruits as they contain acid.i don’t mind the scars and have a scope every year.and see my consultant every six months.im a good bit older than you. Recovery must have taken six months.will never forget that terrible time.didnt mind the chemo or the radium.happy to be still around,!!!

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    • I had the surgery February 2007 (October 2006 was the time that I was diagnosed), so close in time to you Margaret – had one week on 3 weeks off for 3 months. Had a total oesophagectomy but was in ICU for 3 weeks afterwards because I had acute kidney failure and needed dialysis, I also had to be resusitated 3 times. I still feel so sorry for putting my husband through this. He gave up his chance of children for me, tougher as he is adopted…we are so lucky that our children came along. No scopes for me and no scans or follow up at this this stage – my husband is the reason that I am still here, his love and care (and my amazing medical team) got me through. Busy now though…life goes on.

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  • My 2 year old is currently undergoing chemo for a rare tumour which meant she had to lose a kidney along with the tumour being removed. The initial shock and pain has given way to a strange sort of normality where cancer treatment is now just part of our lives, but everything we do now as a family, every decision, is with the treatment and the welfare of our daughter in mind. The medical care has been superb and my little girl is responding well, but a part of me is dreading being released back to a supposed normal life if we get through all of this as I feel the worry and stress that this episode of our lives has brought on is permanent, but while we are spending nearly half of our time in hospital.. well, you are in a bubble and it feels a bit safer inside rather than outside. So this article has definitely struck a strong chord with me. Very well written and some amazing comments from others as a result.

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    • Sincere best wishes for your little girl. I hope she comes through her treatment well and you can all enjoy her ‘normal’ childhood.

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    • Ben, my heart goes out to you – I hope that your daughter does well and wish you and your family all the best for the future. It is strange afterwards and it has changed all of you but it is also nice to be back to the new normal.

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    • Thanks irish red and aoife for the kind words. And to everyone else for the green thumbs. Aoife, your story is inspirational. This whole episode has given me such a jolt, but it really does focus your priorities, which is a good thing. The amount of rubbish we waste our time and energy on when all that really matters is health, family and friends. To any of you who have kids, give them a huge hug the very next moment you can.

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  • May i say Aoife & Joan. You are both extremely brave people. The strength emanates from your words.

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  • Having nursed two parents who had terminal cancer who died within ten months of each other i know that the carers also are left with the scars of surviving cancer. life is never the same. You never quite feel as invincible as you did before. I have forgotten what it is to feel carefree and every minor aliment in a loved one you fear is cancer again it Joan and Aoife I salute you

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  • Could have written this…it’s post traumatic stress you get, never leaves you, I’m speaking nearly ten years on, a cough or cold is always potential mets, it changes your life forever and not always for good as some would suggest.

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    • The shock of that day you hear the words, “you have cancer” never leaves you and your sense of certainty in life and in your body can be hard to recapture after a diagnosis of cancer.Though we may go years without any sign of disease, the thought of recurrence is always with us as are many of the lingering side effects of treatment.

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  • Over the years I donated 500 donations of platlets,plasma,blood and gave a bone marrow donation.
    I ment a lot to be able to give it but now due to being a diabetic and having a few complications I can’t donate anymorr.I lost my Mum & Dad within three years of each other to Cancer over the past 5 years so all I can say to you all is “fight the fight” because there are so many people out there to help .

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    • predictive text & spellcheck must be having a row again….:-)

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    • Mike, I am a type 1 diabetic but I had to have a blood transfusion after the surgery – people like you have saved so many lives. The fact that you have donated bone marrow is amazing as it is not easy.

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    • Aoife,what I have done is a mere itch compared to what you all have faced and continue to face.
      Myself and the hundreds of thousands of donors are there for you 24/7/365.
      Between yourselves and the other real heros the carers deserve the highest praise and respect.
      Anybody in cancer care and research are just amazing.

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    • Mike, thank you for all you’ve done! My son got a bone marrow transplant 6 years ago that saved his life from a donor in the states, we need more like you!!

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    • @ Annette. Myself and the hundreds of thousands of donors are only a small link in the chain.
      The medical staff are amazing people that tirelessly work behind the scenes.
      The real hero’s are the sufferers and their familys .
      Delighted to hear about your Son and wishing him every success.
      I know I speak for every donor when I say it was a pleasure.

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  • Wish i could thumb up these stories hundreds of times.

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  • Opps, should have said 30 and 16 month old – thanks for the comments. Joan, I can totally relate to your comments. I have lost so many good friends to cancer that I realise how lucky we are to still be alive. My husband still remembers the chemo, I luckily do not, I still see the pain in his face sometimes. We have been though a lot but we are here.

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  • Ah thanks Les, your inclined to ‘keep it to yourself’ as time goes on people don’t want to hear anymore and you can’t blame them.
    Aoife your a legend and so lucky, I work in oncology (not a medic), you are doing brill congrats love!

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  • I do not feel brave – I did what I had to do – I wanted to live and have time with my wonderful husband and I fought so hard. Looking back I can not believe that I did what I did but I did not have a choice. Here is me now with a tooth ache and I am scared of the dentist – hardly brave!

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  • this is so true. My friend has come to the end of a year of treatment for cancer, mastectomy etc. And as soon as she was signed off the sickness benefit was cut off by this delightful government. So straight back into the stress for survival despite being unable to work.

    The pinkification of breast cancer and the exaggerated sexualisation of it (recent photo of Mel B in the nip with her hubby covering her bits), does not help at all in helping people understand the seriousness of the disease. It trivialises cancer, and undermines the deadly nature of the disease.

    Hats off to everyone living it cancer, be it newly diagnosed, treated, recovered, in remission. It is a life changer, and anyone who gets through it intact is a hero.

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    • Sheelah 02/11/12 #

      I agree fully about what you call the pinkification of breast cancer, which I refuse to support – I reckon it has become a major international business, and the last thing it wants is a cure for breast cancer because its raison d’etre would be gone. I contribute directly to relevant organisations. My sister, who had breast cancer many years ago, also dislikes it and, like you, feels it trivialises the disease. It is the diagnosis we all dread. No matter how many people survive any particular type, we know there is no certainty.

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  • inspirational stuff,your partners and familys should be very proud,your both heroines of the highest order,keep fighting the good fight

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  • I was 38 when I was diagnosed with breast cancer, a little over 4 years now. I totally appreciate your column. Personally I think the forced menopause, at such a young age, is the worst of all side effects and it lasts and lasts throughout the hormonal treatment which in my case will be another 7 years. I don’t worry that it’ll come back at all but I do feel that it’s not fair the way you come through all the treatment and afterwards have to deal with the “what just happened to me” all the while trying to work through the residual emotions enduring hot flushes, night sweats and mood swings that you didn’t have as part of your day to day life before! You just want your old life back. I suppose part of the healing is accepting that this is the way it is now and embracing your new way of life – easier said than done but I’m getting there!

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  • Coming through and surviving cancer most be the best feeling in the world it’s one of the worst things to be told that you have cancer my family has heard the news and unfortunately the outcome was not so good I have witnessed my father pass away from it and afterwards people just expect you to carry on as it was before but you can’t you carry the burden it’s hard ill b honest I get jealous of survivors but at the same time I have nothing but admiration cause I know what they have been through its a shame though that there is more about road deaths than there is about cancer related deaths

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    • I lost my own mother to cancer last year David and it was devastating to watch the disease steal her from us. It is a cruel disease when it takes those we love and we can only stand idly by and watch. I would have traded places with her if I could, because being left to survive the death of a loved one is so hard. People expect you to be ready for the death of a parent, but the depth of pain at losing a mother or father can never be underestimated.

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  • I was taken completely by surprise at the feelings which I had post treatment. 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. Thanks for letting me know that this feeling is more common felt than it is talked about

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  • http://Www.arccancersupport.ie for people in Ireland living with cancer.
    We have two houses in Dublin where we provide support services for people living with cancer and their carers. Please drop in and maybe come to one of our classes. We also provide one to one counselling, reflexology, acupuncture, or simply a chat with someone who understands. Call 8307333 or 7078880. All our services are free of charge and we rely on donations to keep the doors open. Almost 3000 people use our services annually.

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    • There are 170,000 people in Ireland living with cancer. One in three of us will get a diagnosis. Survivorship rates are growing all the time. Don’t give up hope, come to ARC. See arccancersupport.ie , tell your firiends and post on facebook and twitter.

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    • I think what you do in ARC is great Valerie, but when I finished my treatment, I felt I didn’t belong there anymore – I was no longer a patient and didn’t want to be in that space. I do feel that more attention needs to be given to people like me when we finish treatment to help us move on. Do you offer anything like this at ARC? Or do you have any plans to do so in the future. As Marie writes “While it is necessary to do what we can to help and support cancer patients at the time of diagnosis and treatment, we also need to support patients when treatment ends. It is no longer just about saving a life, it is also about the quality of that life for the longer term.”

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  • Marie thanks for writing this and thanks to The Journal for publishing it..this is a side of cancer we don’t hear enough about. When I finished cancer treatment I was unsettled and lost and couldn’t understand why I felt this way – after all, I was on the road to recovery so why was I feeling so depressed and sad. It is true that cancer is a journey that takes you through many stages, and the post treatment let down that Marie writes about is one of those stages which I would like to see more attention being given to.

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    • Please think about dropping in to ARC. See http://www.arccancersupportservices.ie for more. The people at ARC know exactly what you’re talking about. Sometimes people come long after their all clear, when the after shock can hit. Hope you keep well. Don’t be on your own. Valerie (ARC manager)

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    • Hi Darina, thanks for your feedback and I would love to hear from you if you’d like to call me at Eccles st or mail me through the website. We are very much looking forward to how we can help people in different ways and differing circumstances. So looking forward to hearing from you soon? V

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  • Thanks for all your comments everyone. Can I also let you know about an event I will be taking part in next month in Galway for those who have finished treatment for cancer and wondering what the next steps to take are . The event is open to anyone who has had a diagnosis of cancer and their families and friends and has now finished treatment, whether a short or long time ago. The emphasis is very much on rest and relaxation, meeting others who share your experience with the choice of optional free workshops on nutrition, confidence building, insurance, communicating with children and yoga and walks.
    More details http://nedretreat.com/

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  • This is a very good column which captures the confusing feelings I am experiencing now that I have finished my last radiotherapy session. Sometimes I think I’ll never feel as confident about my life, myself, and the future, as I did before I had cancer.

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  • Lovely piece that captures the mixed emotions and realities that we all face post-treatment.

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  • I was diagnosed with cancer around the same time as Dana Jennings, a writer for the New York Times – I vividly remember much of what he wrote in the aftermath of treatment – one line in particular stuck with me: “I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost.”

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    • Pat, I read Dana Jennings columns too and I thought he captured so much of our feelings post treatment really well too:. “We patients know that not having treatment is a sign of progress. But sometimes having treatment, doing something, is easier than the uncertainty, than the waiting. It’s like being stuck in a traffic jam and taking the first exit that comes up just to keep moving. When treatment ends, it’s just you and your mutinous body warily thrown back on each other.”

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  • Finishing treatment is one of the scariest times for most survivors, and no one prepares you for that. I think we have to do a lot more work helping people prepare for life after treatment.

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  • Aoife.its always there in my mind. That I had cancer even though life goes on.i take nexium tablet every day. It helps to prevent the reflux.you are the first person I have heard that had this operation and still alive.normally it’s not got on time.

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  • What a great article and great comments too – this is clearly a discussion that we need to have more of.

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  • everything that people have written here backs up what this article makes clear – finishing cancer treatment is a very unsettling time and i wish we had something which would prepare us better for it.

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  • There is a lot of talk after a serious illness like cancer about getting back to normal when treatment is finished – or rather there is a lot of expectation from others for you to do so – but what I have learned ist you will never get back to the way you were because you are now different having gone through your experience.

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  • Since our torch of Hope event at ARC Cancer support services, we’ve seen an increase in people calling in for our services. This is positive for those whom ARC can help, and we need to keep our funding going to keep our services open. We have a new way you can contribute, and it doesn’t cost you anything! Simply do your on-line shopping through our website. Click on http://www.arccancersupport.ie/arc_shopping.html and you can click to a range of on-line stores including amazon. If you buy after going from our ARC site, ARC will get a donation of 5-10% of your purchase – and you don’t pay anything extra! How’s that for value!!! So please shop on-line at arccancersupport.ie and you will be helping the one in three people who will get a cancer diagnosis during their lifetime. thanks, and please, please share this.

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