Emma’s Story
I am delighted to feature Emma Willis as my guest writer today. Emma tells the story of being a young woman diagnosed with breast cancer, how she found support and friendship online, and where her remarkable journey has taken her. It’s an inspirational and empowering story and one I know you will enjoy reading as much as I did.
Emma’s Story
I think a lot of us cancer survivors or patients out there want our cancer experiences to ‘mean something’ to lead us on to experiences better that we had before…if cancer is going to take some things from me (in my case a bit of breast, my hair and, oh yeah, my invincibility!) then I am going to take something back and do better with what I have been given.
It’s definitely a powerful driver but when you have come through the ravages of treatment, sometimes it can be hard to even get up in the morning. Getting back to living a ‘normal’ life can be almost impossible and although, when initially diagnosed, I was determined to make this ‘thing’ (said with distaste!) mean something I found that I really struggled to make it back to being me or even the new me!
I found a lump just after my 29th birthday and went straight to my doctors…who sent me away! I was far too young for it to be anything to worry about. I finally got a referral to the local hospital but not as an urgent case and my appointment was to be in 12 weeks time. That would have been 17 weeks since I had first spoken to my doctor. I was in the fortunate position of having private medical cover through my work so, even though I was not concerned, I decided to use it and I saw a consultant the following week. I was shocked, as was the surgeon, to be told it was cancer. In fact it was two tumours and it had already spread to my lymph nodes and potentially further but the scans weren’t clear.
I had surgery straight away, a lumpectomy and full lymph node clearance in my left armpit, recovered (if you can call it that!) and started chemotherapy. I was also a candidate for the drug Herceptin so had to have a port fitted to cope with the three weekly infusions for a year (my veins gave up long ago!) I am happy to report that all scans since my first have been clear of cancer and I have just finished five years of hormone therapy.
All that may be enough to explain why I was struggling to get my life back on track, I had gone back to work, I had my lovely family around me but there was still something missing.
I found it online and it came in the form of Justine….An amazing friend now… a stranger then, in an online network who happened to live in the same county as me. We arranged to meet for coffee, decided on signals to recognise each other like in a bad blind date and that was that! A revelation came as we sat there chatting for hours, I had not met anyone within 20 years of my age since I had been diagnosed that also had cancer! The waiting rooms and wards had been full of lovely women, but they were all older than my mum (a very young 53 when I was diagnosed)
On reflection I know now that it was isolation I had been feeling. Whilst I am not one to think ‘why me?’ it seemed that I was unusual, strange and on my own.
Justine and I started meeting other younger patients online and through the hospital. Eventually we decided that we should be advertising ourselves as a new type of support group so that other young adults could find us. Shine Cancer Support was born officially in October 2008 and since then we have met over 100 other young adults with all sorts of cancers. We have great fun, going out for lunch and nights out, beach walks in the summer, a family camping trip each year and then there are the parties! On a serious note, what we have achieved is a place when anyone with any cancer who is in their 20s, 30s or 40s can come and meet others that can help and support them in whatever way they need. The feedback from some of our members is enough for me to feel happy that we have achieved that wish of making our cancer experience ‘mean something’.
And then there is the new project! The small c ( the name is based on the premise that cancer is a small part of what makes you an individual) is a new project that I am working on with an amazing Lymphoma survivor, Ceinwen. I met Ceinwen through a contact at Macmillan that knew both of us, they put us in touch and from the first time we met we knew that our goals for the future were intertwined.
Ceinwen has a passion for supporting young adults with cancer too, she was diagnosed with Lymphoma, aged 35, just six weeks after her baby was born and really understands the impact cancer can have in a young family.
Together we have worked on the small c project for around six months now and we have had over 200 responses to our online survey. We have created a workshop which is planned for the end of April in London and we hope to have around 20 young adults with cancer there to help us work out exactly where the gaps are in services for our age group and the best ways to address them. (www.shinecancersupport.co.uk/smallc.aspx)
Our vision is to host multi-day retreats for any young adult diagnosed with any type of cancer where they can come and relax amongst their peers whilst accessing expert information and support in areas such as fertility and getting back to work after cancer (both hot topics according to our survey!) and I’m sure there will be plenty of time for fun and relaxation too.
We would love to hear from anyone with ideas or questions about the project so please get in touch through the website or by email emma@shinecancersupport.co.uk
So I guess this is my way of making my cancer experience ‘mean something’. I definitely get back much more than I put in, so much so that I have recently opted for voluntary redundancy from the career that I have had for 17 years so that I can devote more time to the smallc project and to Shine.
I believe that knowing you are no longer invincible does make you look at life differently and how that knowledge manifests itself is different for everyone. Taking more time to appreciate the important things in life and focussing on relationships and what makes you happy is, I believe, the best way to take back from cancer what it has taken from you.
Great work you are doing, Emma. I do believe that finding meaning in things that happen in our lives does make it easier to cope.
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Thanks very much xx (loving your name by the way xx)
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Bravo! And thanks for sharing your story. Especially to the “powers that be” that are telling us we don’t need to do self breast exams!
You are an inspiration and a lesson to us that one person can make a huge difference.
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That’s lovely, thanks very much…xx
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Emma, I love your positive attitude! If you haven’t already, you might like to contact Matthew Zachary, at http://www.stupidcancer.com. You two have a lot in common. Keep up the outstanding work 🙂
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Thank you, I have tried to contact through their website but will give it another go – thanks for the prompt xx
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Emma, I might be able to help you out with a contact e-mail..will be in touch about that..and if you don’t hear from me..remind me again please! (chemo-brain)
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I met Emma on the cancer care course run by Macmillan, I am a registered Nurse who works with patients with cancer, Emma and the rest of the shine group are amazing and and are an inspiration to everyone, I gained a massive insight into how cancer patients feel.
I am now having health problems of my own, despite working for the NHS, I still have to wait the same as everybody else, keeping fingers and toes crossed that I haven’t got the big c, If I have, Emma will be one of my first ports of call as she has been a tremendous support to me through Facebook, and I know that that I won’t be on my own.
Jenny
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Thanks jenny xx (see you on FB!)
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Go Emma! I may have not hung around for long, but Shine was a wonderful support while we struggled with the continuing impact of cancer (in our case, that visa for NZ). Relay for Life, walks on the beach, awesome camping trip – there were actually people at my old work who were jealous of this funky new club (though not of the joining criteria..) 🙂
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Aw thanks Sophie!! The camping trips are just not the same without your amazing baking skills! Perhaps we need a Shine trip to NZ!!!
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What an inspiring and uplifting story – Emma you are an example to us all
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Thank you Caro xx
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as a young woman of 25 recently diagnosed with breast cancer, I can readily testify to what emma has said here about feelings of isolation – we face the same disease as older women in many ways, but in many more ways our experiences and needs are vastly different
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Thanks Alice, I really hope we can reach out to all young people with cancer and fill those gaps! If you get in touch through the website we will keep you up to date with what we are doing and perhaps you can come to our first retreat!! xx
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Thanks for sharing Emma’s story with us Marie As you yourself have pointed out here many times,facing a cancer diagnosis and undergoing treatment at a time when a young woman is typically focused on establishing her career, studying, dating, getting married or starting a family affects her in a variety of psychosocial and practical ways. She may feel isolated and alone as she comes to terms with fertility issues, early menopause, changing body image, maintaining a career while undergoing treatment, insurance issues and financial concerns. Welll done to Emma for addressing this issue in such a positive way.
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Thanks Moira…there are so many issues that can be simply addressed that are just being missed…I really hope we fill the gap well xx
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I like the sound of this girl 🙂 and what a great picture at the start of this article. Continued good health and success to you Emma and to your small c venture
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Thanks Helen – the photo is me just after I climbed Mt Snowdon last year!!….xx
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Helen, Emma gave me a choice of 3 pics to go with this post, and I too loved this one, so had to share it 🙂
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Any plans to come across the water with this Emma and bring it to ireland? We sure could do with something like this here.
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Hiya Aine, Marie and I have spoken about that (via email) Obviously I am based in England but I can’t see any reason why our retreats would not be open to anyone who can make it to wherever we hold them….I can feel a road trip coming on though so watch this space!!
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That’s great to hear Emma..do keep in touch with me about it and I can pass on the information to readers.
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Marie was not kidding when she promised an inspiring and empowering post – it is great to connect with you, Emma and to hear of your project. As a Scottish woman living and working overseas when cancer came knocking on my door, I can very much relate to what you are doing. Now I’m off to visit your website….
Warm wishes and very good luck with the project
Philippa
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Hi there, thanks so much for your comments x (I’m a wannabe scot as my other half is from Glasgow and I love Scotland soooo much!)
Emma x
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Emma,
Thank you for doing such wonderful work. Cancer stinks at any age, but when you are young and diagnosed, there are some unique challenges for sure. You are truly doing work that “means something.” I think that beats being “invincible” any day.
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Thank you Nancy, It is sometimes hard to explain why younger adults have different needs…I understand that is is hard at all ages (I work with a breast cancer support group too which is all ages) it’s just that my passion is younger adults as I happen to be one! I’d like to think that I would be advocating at the other end of the scale if I were older (and hope to do that in 30 years time!!) xx
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Hi Emma, Thank you putting together this wonderful inspirational post. All the best with your projects in the future.
~~~maura
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Thank you Maura xx
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Awesome way to channel your energies, Emma! Kudos!
I will be passing along your website to my younger BC sistahs.
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Thanks Renn xx and email through the website if you want to be on our contact list xx
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What an incredibly wonderful project! I just love the name of it. I love how this is catching on, Emma. I’m sure it will be across “the pond” in no time. Thank you for all you are doing. xx
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Thanks Jan, I hope so too xx
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You are a true inspiration Emma – your energy and love of life radiates from your words! Your powerful story will be a lifeline for so many…….thank you.
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Thank you Lisette x
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Well well done to you. I was a wee bit older when the wee “C” came knocking on my door but the amount of times I was told I was too young to have cancer.I wish everyone could see the good effects it has and you are a great example of that. Good luck with Shine. Love that name. I am away to your web site
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Thank you Mona x
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You are doing good work, Emma. I wish you the strength and patience to continue.
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Emma,
I remember all those lonely days waiting for radiation with people who were the age of grandparents, and I was thinking, “surely, I can’t be the only young person here.” Your organization sounds wonderful, and I’m thrilled about the difference you are making in the lives of young survivors and patients.
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Hi Emma and thank you. The “wee c” is a great name, love it. Will be using that from now on. It is hard sitting in the waiting rooms when every one around are alot older. There is a lot of living left in us!!!!!!!! Keep up the good work.
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