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.
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 firstname.lastname@example.org
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.