Meet Rosie – social work student and latest member of the Shine team!

Rosie is a university student studying social work in Bournemouth. We’re extremely lucky to have her on placement with us until January 2019. Below Rosie tells us a bit about herself, how she found out about Shine, and what social work can mean to those living with cancer.


Hi everyone, I’m Rosie! I’m 33, and in June 2016 I was diagnosed with breast cancer for which I now receive ongoing maintenance treatment because they think it has spread to my spine. At the time of writing though, I currently have no evidence of disease!

social work and cancer

Rosie

When I was diagnosed, I had just finished my first year at Bournemouth University studying social work. I took two years out and had pretty much written myself off, let alone the thought of getting back to uni! Fast forward to 29 June of this year and it was the first day of my second year of university, and I was on placement with Shine!

I’m very lucky that my uni let me start placement early, do it part time, (it will take me into the beginning of January) and choose where I went. I’m equally lucky that Shine are so flexible with when and where I complete my 70-day placement so that I can fit it around my treatment, appointments, and fatigue. As I write now, with my feet up on my sofa, cat and chocolate to hand, I really couldn’t ask for more!

Before my diagnosis it would not have occurred to me that, once I had qualified as a social worker, I would like to work with young adults who have had a cancer diagnosis. In fact, the thought of it would probably have terrified me: what if I said the wrong thing? And surely it would all just be really depressing, right? Wrong!

As soon as I was diagnosed, I found Shine through a good friend of mine who was already part of the ‘cancer crew’. The support that I felt was unbelievable. Just knowing

SW2

Social work isn’t about being a child catcher!

that there were other people out there in my age group who get what it’s all about is all that I needed. I was sold! It’s the informal peer support aspect that, for me, is the best part. We meet up where people our age want to meet up, and we do what people our age want to do. We talk about cancer if we want to, but it’s not forced and awkward and, most of all, it’s actually fun and a light relief from the usual drudgery that is living with cancer.

I had gone into my degree thinking that, once qualified, I would work with children and young people because that is where the majority of my work experience had been based. However, now I have a new group of fabulously ‘Shiny’ people to be passionate about. I believe that my personal experiences can have a positive impact on others in similar situations. Just before starting placement I was really excited to become a joint Network Leader for Dorset. I love it and I will continue to do it long after placement has finished!

Social work comes with a lot of preconceived ideas, stigmas, and a veil of mystery that the tabloid press does nothing to dispel. With their constant scare-mongering they would have you believe that we are all some kind of crazed child-catchers!

So what exactly IS social work – and why is it relevant to you?

Social work is a lot of things but this statement sums it up quite nicely.SW

As we all know, life can be turned upside down in an instant, and when that happens we all need someone to reach out to, whether that’s for practical or emotional support. I am really lucky to have a fantastic specialist social worker based in my hospital oncology unit, but sadly these are very few and far between. His role is funded by a charity and he has helped me with things like filling out benefits forms and making sure that I have an up-to-date seatbelt exemption (I need this because of the placement of my portacath).

Shine fills that much-needed gap for young adults with cancer who are looking for support.

While I’m on placement with Shine, I will continue to jointly run the local Dorset Network which includes organising meet-ups and events, welcoming new members, supporting alumni to move on as they approach 50, and developing a local ‘Plus One’ Network. But I will also be working on a number of other projects, including developing a directory of useful services for Shine members, collecting evidence of the current needs of young adults with cancer, and working on a diversity project to ensure that Shine is reaching all communities affected by cancer at a young age. In addition, I will be at the Manchester Great Escape as a peer supporter, and supporting the delivery of a number of workshops. On my first day of placement I headed to London for a training day for Shine’s Network Leaders. I was very pleased to find out that the core skills and values necessary for the role are identical to those required of a social worker: to be passionate about helping others, supportive, empowering, friendly, empathetic, caring, respectful, and to demonstrate integrity and trustworthiness.

I’m really excited about my placement because I feel like it’s important work that will make a genuine difference. Personally, since I’ve started on placement I feel so much more confident in my ability to function as a (relatively!) normal human being again. Being on placement in a cancer support charity has also, perversely, taken the focus off my own cancer and also given me a new-found purpose in life again. One of the only possible challenges that I predict is keeping on the right side of that fine boundary line, but for the next few months I’ll be making sure that I step back and look at all situations with my ‘Student Social Worker’ hat on.

I would love to hear from you! Maybe you’ve got feedback from a personal experience of interacting with a social worker or trying to navigate the benefits system? Maybe Shine has been an invaluable support and you’d be lost without them? Perhaps you can relate to my feelings of returning to study or work after your diagnosis? Whatever it is, please do drop me a line!

You can get in touch with Rosie by emailing her at hi@shinecancersupport.org.

 

 

Looking for a job after cancer

In the second of two blog posts on looking for work after cancer, recruitment consultant Ash Holmes answers some of the questions that were put to him via our private Facebook group. If you’re looking for work, make sure to check out his original post too. And good luck!


 

How should I deal with gaps in my CV? I don’t want the time I took off for treatment etc. to be seen as a red flag to an employer.working after cancer

This is probably the hardest question to answer as there are so many variables, and it will depend on your individual circumstances and how open you wish to be.

If you’re returning from a career break, no matter how long or short, it is best to at least address it in some way on your CV. Don’t leave it up to the individual reading your CV to wonder and draw their own conclusions.

Depending on how open you plan to be, simply putting ‘career break due to personal reasons, happy to discuss during a call/interview’ could be enough to stop a potential employer from wondering and instead focus on the rest of your CV and application.

Wording here is very important! As a reader, the difference between ‘personal issues’ and ‘personal reasons’ is huge. Try to think carefully about any language you use and avoid sounding negative. Ask for a second opinion, and get someone else to read through your CV.

If you do not want to talk about your reasons for having a break, then simply putting ‘career break’ with the relevant dates is still better than leaving a gap. By being transparent and addressing any empty spaces head-on, it stops any reader from trying to guess what’s happened. This is your chance to ‘control’ the reader’s impression.

Most recruiters and hiring managers will make a quick judgement about a CV, and finding an extended gap between dates is often one of the first things that they will want to ask about. Bearing that in mind, it’s important for you to be able to provide a reason for the career break, even if you are not going to talk about cancer. People take career breaks for a number of reasons, including: concentrating on family/a hobby or passion, feeling they have achieved everything they wanted and needing time to consider the next step, the end of a contract, or a change in circumstances (professional or personal) that meant they did not want to rush into a new position.

Where can I find good examples of CVs for different types of jobs?

For all CVs, there are core principles to be followed:

  • Make it clear and easy to read (do not try and fill every bit of white space with boxes of text)
  • Be concise (the ‘two pages’ rule is a good guideline, but it’s only a guideline!)
  • Make sure the content is relevant to the position you are applying for (you might need to create a few different versions of your CV)
  • Make sure key information is clear and well positioned (name and contact details at the top)
  • Don’t be afraid to use bold, underline, italics, or bullet points to emphasise information
  • Triple-check for grammar and spelling – and ask a friend to check it
  • If you are speaking to a recruitment consultant, ask for their advice

It’s useful also to consider the standards in your industry. A web designer might create their own website with examples of their previous work, for example, or a graphic designer might have a portfolio.

If you have recommendations on LinkedIn, you might want to include a link to your profile in your CV. If you are wondering how to ask for recommendations on LinkedIn, one of the most effective ways is to complete a recommendation for someone else. Once accepted, they might complete one without asking. Alternatively, explain that you are returning to work and that you would really appreciate a recommendation.LinkedIn

Professional CV writers do exist, but I would be very wary about paying anyone money. You will likely receive similar advice to that which you can already find online. The majority of job boards also have blog posts and CV templates readily available.

You can find a sample of my CV at the end of this blog.

Should I mention my cancer in an interview? What’s the best approach to mentioning time off without scaring employers?

First of all, it’s important to note that you are not obliged to disclose a cancer diagnosis and it is actually illegal for an employer to ask about your health in an interview. Once you’ve been diagnosed with cancer, you’re covered by the Equalities Act 2010 which provides legal protection against discrimination relating to employment, including during the recruitment process.

Having said that, whether you want to mention your cancer diagnosis is your choice. Personally, I think you need to focus on why you are the right person for the job, what you can bring, and how it will be beneficial for the employer/hiring manager. If you are going to discuss your illness, it is probably better to bring it up in person, during a later stage interview. Here, you can gauge a potential employers’ reaction and reassure them of your capability to do the role – and by this point, you already have your foot in the door. You can also control the conversation by providing relevant information and answering any questions.

When your cancer experience is relevant to your job and could be beneficial (in that it provides a useful perspective), how should you bring it up? I don’t want to present a sob story!

Dream jobIf you feel something is relevant and it will help you to be better at your job… mention it! Sell your strengths/experiences. Here is where a cover letter on an initial application might be the right approach. Just saying ‘I’ve had cancer’ isn’t enough: you need to explain why and how that will make you better at the job.

If you think your cancer experience could provide you with a ‘competitive advantage’ over other candidates, then maximise it! Don’t discount your experience and what you’ve learned through it.

Should I Google myself when I’m looking for work? Will an employer do this? What kind of stuff do they look for?

Some employers will carry out a Google search and social media check, and some won’t. It will often depend on the type of role and industry. Is the role public-facing, for example? Does it involve work with young or vulnerable people? It is always best to be on the safe side and use common sense. Here is where a professional profile, such as LinkedIn, can help you to present the best impression.

For some roles, employers will carry out police background checks, but they must ask your permission before doing this.

If you are concerned about your online image, there are often ways to make your social media profiles private. Do a quick Google search to find out how to do this for each specific platform. Many teachers, for example, change their name on social media to make it harder for pupils or parents to find them.

What’s the best way to look for a new job? Should I go online? What can a recruiter offer me?

The best approach is to combine online and offline activity. Reach out to former colleagues, friends, and acquaintances – anyone in your network who may be able to help. Hiring managers are more willing to talk on the phone or offer an interview after a personal recommendation, and if you talk to people you know then you may also hear about jobs before they have been advertised online. The process can feel less formal and more relaxed, helping you to demonstrate your skills and ability.

A huge part of the recruitment process is online, with a drive to make the process automated in many industries. Job boards are the best place to start. There are several main boards that cover a number of industries and experience levels (Indeed, CV Library, Total Jobs, Jobsite, Reed, and Monster). Alongside these are more specialised job boards. Do a Google (other search engines are available) search to find yours.

A large proportion of recruitment agencies and employers are now posting their roles on LinkedIn, so make sure you set up an account and take look.

Remember that applying via a job board or careers website is just the first stage. To stand out, it is important to follow-up via a call or email. Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn. Or ask the company for an update via Twitter!

Unfortunately, now that we have automation and most recruitment processes are online, receiving a generic rejection email is common. From May 2018, the General Data Protection Regulation (GDPR) comes into force. This means that you can request any application to be reviewed by a human instead of through automation.

Contacting a recruiter can be a great way to learn more about market conditions, industry-specific job boards, suitable roles, realistic earning potential, and which employers are more flexible with employees than others. The key to building a relationship with a recruiter is to do your research and make sure that they are working in the relevant industry to you.

A word of caution though: recruiters are sales people. Some will be very helpful and answer your questions, but others won’t – especially if they do not feel that they will be able to place you into a role.

Feel free to contact me on LinkedIn to see if I can recommend a recruiter based on your career goals/background.

Ash Holmes has spent the last seven years working in the recruitment industry. As well as working with thousands of candidates, Ash has created and delivered employability training to college students and individuals who are not in work, education or employment.  Ash has placed candidates with organisations as varied as Red Bull, Olympus KeyMed, Tottenham Hotspur, and Red Gate Software. He is more than happy to answer any follow-up questions and connect on LinkedIn.

Here’s a sample CV – Ashley Holmes

Borough, London, SE1

E: example@e.com. M: +44 (0) 00000 0000000

L: http://linkedin.com/in/ashholmes14

An experienced operations and marketing professional with over 7 years’ experience within the recruitment industry. Looking for a role and organisation to be able to continue my development, expand my experience and match my ambition. I have recently returned from spending a month in North America and am now looking for a new role.

I bring a wide range of experience and skills to the role including:

  • Strategy
  • Communication
  • Change management
  • Systems and process
  • Project management
  • Marketing & social media, including ress
  • Internal recruitment
  • Third-party management (suppliers, etc.)
  • Sales & account management
  • Training

As part of my personal development I completed a Level 6 Diploma in Professional Marketing from the Chartered Institute of Marketing in January 2017. The Diploma has helped me to understand the role that marketing plays within business, study key business-focused modules including Change Management, and to view marketing from a much more strategic position.

Employment History

Etonwood Ltd. (UK)

September 2017 – November 2017

Operations Director

Brought in to put in place the systems, process, and policies to help the organisation double in size. Implemented:

  • Trainee & senior attraction & interview process
  • On-boarding process & creation of ‘Welcome to Etonwood’ book
  • Mapped career progression & formalised job descriptions
  • Put in place appraisal process based on the above
  • First stages of GDPR policy
  • Created brand guidelines
  • Created social media strategy & reached over 100,000 LinkedIn impressions from 0
  • Put in place all health and safety policies

Raw Talent Academy Ltd. (UK)

May 2011 – August 2017

Operations, Marketing & Recruitment Manager

Joined as first full-time employee. The role evolved as the organisation grew to include marketing, operations, and finally managing the recruitment team.

Key Responsibilities:

  • Member of the Senior Management Team providing input on company-wide strategy
  • Creation & implementation of Marketing strategy to drive B2B lead generation & candidate attraction in line with company objectives
  • Marketing & Operations budget
  • Management of team of three recruitment consultants & one administrator – increased delivery from 73% (H1 2016) to 123% (H2 2016)
  • Account-managed two key accounts
  • Project-managed rebrand and launch of new website (launched 2017)
  • Project-managed development of a Digital Recruitment Assessment tool (SiD Digital)
  • Management of IT & processes, including: CRM/ATS, Office365, Data Recovery, IT support
  • Managed key external/supplier relationships (CRM, developers, graphic design, video creation, job boards)
  • Contracts, terms and policies (employee contracts, Health & Safety, etc.)
  • Press releases & award entries – existing relationships with recruitment industry journalists and publications, as well as some national publications.

Key Skills:

  • Microsoft Office
  • Adobe Photoshop, InDesign
  • iMovie
  • Basic HTML

 

MarketMaker4 (UK)

Technology Company

March 2011 – May 2011

Consultant

 

Travelling in Australia

January 2010 – February 2011

 

RightNow Technologies Inc. (Australia)

International Information Technology Company

April – December 2009

Assistant to Marketing Manager APAC / Business Development Representative APAC

Key Responsibilities:

  • The building and purging of customer and prospect databases to ensure the correct contact is listed along with correct contact details
  • Arranging and organising events for, and in partnership with, the Marketing Manager to ensure customers and prospects have a positive customer experience at the events
  • Helped in the development of and provided feedback regarding Marketing campaigns so that they have the maximum impact and highest response rates
  • Engaging with customers and prospects in the run-up to company events to encourage attendance
  • Identifying and contacting prospect and target accounts to create business opportunities

Foodnet Ltd. (UK)

International Food Trading and Production Company

June 2008 – March 2009

Purchasing and Sales Admin

Education

The Chartered Institute of Marketing (UK)

November 2015 – January 2017

Level 6 Diploma in Professional Marketing

Modules; Strategic Marketing, Marketing Metrics, Driving Innovation

Chesham High School (UK)

September 2006 – April 2008

3 A-Levels A-D

Amersham School (UK)

September 2001 – June 2006

9 GCSE’s A-C

Interests

Sport and music are my two main passions. I am a keen runner and have completed three marathons to date (London, Paris and Nice to Cannes). I also regularly attend live music.

References available on request.

 

Tips for looking for a job after cancer

Looking for a job can be daunting at the best of times, let alone after you’ve been diagnosed with a serious illness. At Shine, we know that work is hugely important to younger adults (not least because we need the cash), and we’ve got some really useful resources on our website.  But to help you further, this is the first of two recruitment blogs that Shine is publishing. Part one below provides insight into the recruitment process, while the second part (to be published in a couple of weeks) answers questions from the Shine community. We are very grateful to Ash Holmes for providing his insight and expertise! If you’d like to learn more or connect with him, please see the end of this blog.


Applying for a job and going through a recruitment process can be a daunting prospect at the best of times, let alone when returning from a career break or asking for flexible working. But the key is to demonstrate the skills, experience, knowledge, and therefore value you can bring to the role and organisation. Always ask yourself, ‘how can I add value to the role/company?’ and make sure that you articulate this to the hiring manager/recruiter.

Looking for a new role can be a job in itself. The candidates who tailor their CV and approach to go the extra mile will often be more successful – maybe not because they were the best fit, but because they demonstrated desire, passion, and the relevance of their skills, experience, and knowledge.

Going the extra mile doesn’t have to be complicated:

  • Call the company/recruiter before submitting your application. You might have to try for a few days! Find out the name of the person in charge of this position, and ask for their phone number or email. Ask them what will make an application stand out. What are the key challenges for the company that this role will solve? Most importantly, try to build a relationship and be memorable so that they recognise your name/CV!
  • Tailor the opening paragraph of your CV to name the company and role, highlighting the three key skills/experiences that make you suitable. Don’t be afraid to use bold text or underline to make your point.
  • After applying via a job board or website, follow up directly. Calling is generally best (remember, especially when you don’t know someone, it’s easier to build a relationship based on a conversation). If you’re struggling to call or feeling anxious, at the very least drop them an email to see how things are going.

One of the concerns I’ve heard a lot from people in Shine is how to deal with the question of cancer when applying for jobs. I asked my network on LinkedIn what they thought, and some of the responses are below. While this approach won’t be for everyone and talking openly about cancer is not easy (or legally required!), I hope these positive responses provide encouragement to you all.

  • “Personally I don’t like to see unexplained gaps in a CV but I don’t understand why any employer would be put off by the fact a candidate had survived cancer – which, in my mind, demonstrates physical and mental resilience and resourcefulness.  Don’t hide it be, proud of what you have achieved.”
  • “I know a young man who is currently under treatment for leukaemia and is being supported by his girlfriend. The courage, fortitude, tenacity and emotional resilience both of them are showing is a wonder to behold and fills me with admiration. They are both in their 20s and at the early stages of their respective careers. My advice would be not to put a career gap on your CV but to address it head-on and explain to the prospective employer what you have learned and how you have changed as a result of the experience.”

And speaking of networks, have you thought about how you can ask yours to help? Taking some time to map your network might just help you to find your ideal career. Candidates referred to organisations often secure an interview quicker and easier than candidates who apply via job boards or online.

LinkedIn was created specifically to connect with your business network, but Facebook might also provide job opportunities. If you do not have a LinkedIn profile I would recommend creating one and using their tools to connect with any contacts in your Facebookphone book, email address book, or at previous companies. I was recently looking for a new role myself and secured two interviews off the back of posting an updated on LinkedIn saying I am looking.  ASTRiiD, is also worth looking at.  It’s a new charity that links businesses with individuals with long-term health conditions; it’s fairly new but it’s growing and it’s definitely worth checking out for part-time or short-term roles. LinkedIn

Now for some reality. Unfortunately, not every organisation or recruitment company has the best process in place, and that means that you need to be resilient. You will not hear back from some, you will not receive specific feedback about why it is a ‘no’, and you will get frustrated. However, try to stay positive, focused and determined. Setting goals for what you want to achieve each day/week can help to keep you focused – whether that is roles applied for, hiring managers spoken to, or interviews secured.

I recommend creating a simple spreadsheet or list of each role you apply for. This will help you to be proactive in following up with a company, so you stand out from the competition. Too many candidates simply click ‘apply’ to as many roles as possible and never follow up. Be different, be memorable!

You might want to set up your spreadsheet like this:

Role Company Date applied Contact name, number, email Last update
Marketing Exec Tesco 12/12/2017 Dave Smith, 07700111222 Spoke on phone, Dave will come back to me this week

 

For more on looking for a job post-cancer, stay tuned! Our second blog will be out in two weeks!

Ash Holmes has spent the last seven years working in the recruitment industry. As well as working with thousands of candidates, Ash has created and delivered employability training to college students and individuals who are not in work, education or employment.  Ash has placed candidates with organisations as varied as Red Bull, Olympus KeyMed, Tottenham Hotspur, and Red Gate Software. He is more than happy to answer any follow-up questions and connect on LinkedIn.

Shine and ASTRiiD – a new way of connecting people with cancer with flexible employers

Here at Shine, working after cancer has always been a core part of the work that we do. We’ve long been aware that our Shine community is full of talented people who are often un- or under-employed because of a cancer diagnosis or treatment. That’s why we were delighted to meet David and Steve Shutts, the brains behind a new initiative called ASTRiiD which aims to pair up people living with cancer who need flexible or part-time work, with companies that need talented people but don’t need them 9 to 6pm in an office. It’s win-win!

The ASTRiiD team have written a blog below which we’re delighted to share. Over the coming months we’ll be partnering with them as they launch ASTRiiD and begin connecting people with cancer with some great companies. If you want to know more, pop on over to their website or follow our Facebook or Twitter for updates!

***************

The choice of career available to most school leavers today is simply staggering compared to David Shutts’s own experience 35 years ago. For him, it was a life in the armed forces that beckoned, so he joined the Royal Navy aged 20 and became a Marine Engineer Officer where he served on a dozen different ships and travelled large parts of the world.

Aged 45, he thought it was time for a second career, this time in industry, and he was enjoying his professional life. Then suddenly, he was diagnosed with stage four kidney cancer. Incurable and inoperable, this diagnosis set the course for what will be David’s newest stage of life. Now, two years after his diagnosis, David is pioneering a project that will transform the lives of thousands of fellow cancer patients across the UK.

working after cancer

ASTRiiD Co-founder, David Shutts

“There is only one way to approach this situation” David suggests, “and that is to make the most of every day available. It’s a bum deal but that’s what it is. Accept it and get on with making the most of what’s left.”

And this is why David has founded a project he calls ASTRiiD.

ASTRiiD aims to connect people who have long-term illnesses, but who also have plenty of skills and experience, with businesses that need an injection of talent and expertise.

“Holding down a permanent job can be a massive challenge for people with cancer and other serious health problems,” said David. “Yet many people still want – and need – to work. And don’t think, just because you’re young, that you don’t have what’s needed. I can assure you that there are many businesses out there where the ability to learn counts just as much as any formal qualification.”

ASTRiiD, which stands for Available Skills for Training, Refreshing, Improvement, Innovation and Development, is underpinned by technology from the IT partner, Salesforce. “ASTRIID epitomises modern commerce; there are no long winded application forms – we are doing everything on line through our website and are proud to be working alongside a leader in this field”.

working after cancer

ASTRiiD logo

As well as providing heavily discounted licences to run the website, Salesforce (which is also supporting Shine) has pulled together a pro bono team to help David deliver the project.

“I call the members of this community the ‘Invisible Talent Pool’ as currently they are invisible to business and business is invisible to them. Through ASTRiiD I want to make the invisible visible.”

“By helping people find meaningful work, we hope to be able to boost an individual’s self-esteem and self-confidence.”

The demand side of ASTRiiD is provided by the UK skills gap, the term given to address how companies struggle to find the right people with the skills, experience and attitude they need to grow their business.

“There is a vast demand for skills out there. Our business landscape is dominated by micro-, small – and medium-sized businesses, all of whom at some point will need help to let them grow and prosper.”

“I speak from experience,” says David, “without question my health has deteriorated over the last two and half years since my diagnosis in May 2015.  But working on ASTRiiD and keeping busy has helped m maintain my mojo and my feeling of self worth and I know I’m in a much better place as a result of having meaningful work than I would have been if I’d had nothing to keep my mind and body active.”

“The beauty of ASTRiiD is that with the right connections we are supporting individual members, UK business and making sure that we stop ignoring a huge community of talented people.”

“That’s got to be the right course to steer.” says David.

Please take a look at ASTRiiD’s website for more information. You’ll be able to register and summarise your talent and experience and, importantly, let employers know just how much work you can manage). ASTRiiD’s matching process will then look to find those roles that you are best suited to, always keeping you in control of the communication so that you are only made ‘visible’ when you are ready.

For more information about work and cancer, make sure to read Shine’s previous blogs and watch our videos with Working after Cancer

 

 

 

It’s Breast Cancer Awareness Month – meet Emma!

October is Breast Cancer Awareness Month and, having shared the story of one of our Directors last month (for Blood Cancer Awareness Month), we thought we would share the story of Emma, our other founding Director this month. Diagnosed with breast cancer in 2006, Emma experienced the isolation that often comes with a cancer diagnosis and is all the more acute when you’re young. Way back in 2008, Emma started meeting up with other young adults with cancer and the roots of Shine took hold. Today, Emma runs Shine with Ceinwen and is Shine’s Director of Operations and Training. Read on to learn more about Emma and why Shine does what it does!

cein-emma-2

Emma (left), with Ceinwen at Shine’s 2016 Great Escape

When were you diagnosed and what with?

I was diagnosed with breast cancer in June 2006. I had two tumours and the cancer had spread to five of my lymph nodes. I also had unconfirmed spread into my breast bone and the lymph nodes in my chest so I’m still not 100% sure what stage my cancer is/was!

How did you find out you had cancer?

Early in 2006 someone drove their car into the back of mine while I was stopped at some traffic lights. I had whiplash and sprained ribs and was having physio. I found a lump in my breast that was next to one of my ribs so the GP thought it was a bleed caused by the accident but said he would refer me to the hospital anyway. When I finally got my letter from the hospital, the soonest they could see me was in 12 weeks time (this was before the two week wait was introduced in the NHS). While waiting for my physio appointment at a private hospital (I had BUPA through work), I noticed a sign for a specialist breast centre so I figured I’d get an appointment there as I had already paid my insurance excess! I was seen the following week and was sure that they were doing all of the tests to get more money from the insurance company!

I was so unconcerned about the follow up appointment that I went to receive the results on my own on the way home from work. The words from my doctor – “I’m really surprised but it is a little cancer” – will always stay in my mind. I remember thinking ”what’s a LITTLE cancer??”

What did you think and feel when you were diagnosed?

Because I had come in alone, the consultant suggested that I call my partner and come back in when he arrived. I was in shock. I can only remember certain phrases like “you’re so young that we’ll throw all of the possible treatment at you” and “normally we aim for five years survival but, with your age, we are going for 20”. I remember thinking that I would still be in my 40s after 20 years and that that wasn’t long enough.

Over the next few days, I went into planning mode to deal with work, friends, family and the huge number of hospital appointments that I suddenly had to fit in. Looking back, I coped by focusing on the practicalities such as finding pyjamas for hospital that buttoned up at the front (surprisingly difficult!).

How did the people around you react?

My partner and family were as shocked as I was. We had no family history of cancer and I hadn’t met anyone who had dealt with cancer at my age before. I really thought that it only happened to older people.

Everyone tried to help with practical arrangements but I avoided a lot of my colleagues and friends as I felt awkward dealing with their reactions. I lost count of the number of times I heard phrases like “but you’re too young for that” (I know!) and “my uncle’s brother’s wife’s sister had that – oh, she died” (thanks, that’s really helpful!).

emma-1

Emma during treatment

What treatment did you have?

I started with surgery to remove the original tumour but, when I went into surgery, they found another one. I had a lumpectomy rather that the mastectomy that would have been recommended if they’d known about the second tumour. I decided not to go back for the full mastectomy as my surgeon had got clear margins (it’s amazing how much jargon you learn!).

My oncologist then recommended a CT scan and a PET scan both of which showed up “dodgy bits” in my breastbone and the lymph nodes in my chest. At the time, I didn’t really understand the difference that made to my diagnosis but as the next lot of treatment would have been the same anyway, we went ahead with chemotherapy.

We also discussed the fact that I hadn’t had children and talked about options to preserve my fertility. My partner and I discussed it and decided not to take any of the options as they meant delaying chemo. I started my treatment with injections into my stomach to send me into a chemical menopause.

All together, I had 8 rounds of chemo, given every three weeks (FEC-T) and also started on infusions of Herceptin that went on for a year. I also had six weeks of daily radiotherapy to the remaining breast tissue and into my neck and I also started taking Tamoxifen tablets, (though I later switched to Exemestane). I stayed on the injections and tablets for 7 years in total. I used to say that I would rattle if I was shaken!

How did you feel through treatment?

The surgery wasn’t too bad as I was in a lovely, swanky private hospital with three course meals and a wine list! It was a bit scary having the anaesthetic though – and a bit weird coming round and finding myself halfway through a conversation that I couldn’t remember!

Going straight into menopause was also bit of a shock to the system. Overnight I developed massive hot flushes and sweats and felt like an old person when I tried to get up from the sofa.

The chemotherapy wasn’t as bad as I expected it to be but it did get worse as I went through all eight rounds. By the end of it, I had absolutely zero energy and felt like I’d been hit by a truck. My veins also decided to stop working so I agreed to have an operation to implant a portacath. This meant that the Herceptin could be given straight into a port under the skin in my chest which had a tube leading straight to my heart (sounds scary right but it definitely made life easier!).

My treatment went on for 7 years in total and I still take some tablets to deal with the after-effects of the treatment. After each type of treatment finished, I was worried about the cancer coming back as I felt like I was losing some protection they gave me. I still find the regular scans frightening though. I haven’t found a way to remove that ‘scanxiety’ completely but it is much easier with my Shine family around me.

Throughout treatment I thought that, once I was done with the main treatments, that my life would go back to normal. That never happened and when the hospital visits slowed down and treatments came to an end, I felt as if I had been abandoned to work out what came next. I felt like I was living in a ‘should be’ era – I should be feeling amazing that I’d come this far, I should be able to pick up my life from where it left off…. I am naturally a very positive person and I didn’t initially recognise that the feelings that I was having were of isolation, anxiety and depression.

It took nearly three years for me to admit that I was still struggling and to take steps to get help. It is not an understatement to say that my amazing counsellor, Kathy, changed my life completely. With her, I was finally able to sort through the mess of everything that I thought I ‘should be’ feeling and to talk through the experiences I’d had through treatment and beyond. At first I couldn’t understand how talking about it would help but it enabled me to face the anxieties I had been holding on to and to feel more empowered about my future, whatever that holds.

Tell us about your work with Shine

Throughout treatment, the “you’re too young” comments kept coming and the support groups that I attended were full of people showing me photos of their grandchildren! Eventually, I met the amazing Justine through a random breast cancer chat room. She was just a few years older than me and had also been through treatment for breast cancer. We met for coffee which ended up lasting four hours and I suddenly realised just how isolated I had been.

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Emma and Justine at the first Shine party in 2008

That meeting led us to start Shine (although we didn’t have a name!) and we decided that we should reach out to other younger adults with all types of cancers. In the first year we connected with over 100 people in Dorset and it felt amazing to make sure that other people didn’t feel as isolated as we both had. We had fun too, doing things that suited us (mainly bars and coffees!) rather than the standard cancer support group format. And thus, Shine was born….

Meeting Ceinwen in 2010 was the next brilliant coincidence. Ceinwen had been diagnosed with cancer shortly after having a baby (you can read her story here) and was looking to do something similar to Shine in London. We met for coffee, which again lasted 4 hours (be careful if we ever have coffee together!), and we realised that we had a lot of similar ideas about the lack of support that was available to younger adults diagnosed with cancer. Together we started work on the ‘Small c’ Project, the first research project in the UK to look at the needs of young adults with cancer. We then went on to develop a programme of activities and events that aim to meet those needs.

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Emma and Ceinwen with Shine Trustees Laura and Christopher

We also started setting up Shine Networks in other parts of the UK, giving people the chance to meet others in similar situations much more quickly that we had been able to.

The feedback and stories we heard from the people that Shine supported in the early days quickly made my career (banking – sorry!) seem much less important and certainly less rewarding. I eventually left my career in 2012 to fully focus on Shine. I have never regretted any part of that (despite the massive impact on my bank balance!) and absolutely love my job, even on a Monday morning – and at 2am on a Sunday as it’s not really a 9-5!

Nowadays, we are both still working hard to reach the 30,000 young adults diagnosed with cancer each year in the UK and to develop more programmes to fill the gaps in support that still exist for young people dealing with cancer.

What difference has Shine made to you?

Personally, I now have a huge network of people around me that just “get it”. I can talk to people about things I wouldn’t put on my “normal” friends. I also have people that also get the dark humour and the fact that you’re definitely not being ‘negative’ by talking about your funeral music or not planning too much for the future!

I love to feel like what we do makes a difference to peoples lives, and I still sometimes can’t believe what we have achieved in just a few years (mainly because I’m always thinking about the things that we need to do in the future!). In short, Shine has definitely changed my life for the better!

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I’ve just passed my ten-year ‘cancerversary’, but the fear of my cancer returning is still there. Certain things still trigger the trauma of some of my experiences through treatment and I don’t think that will ever go completely. However, I am much more able to deal with the scary bits now and, of course, know amazing people who help and support me.

I don’t feel grateful for having cancer. Instead, I feel grateful that I have been able to channel my experiences into something that helps other people and also brings me personal joy and fun. I try not to stress over the small stuff and I honestly appreciate much more about the wonderful people that surround me.

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Emma in 2016!

If you could give one piece of advice to yourself before your diagnosis what would it be?

This is hard! I felt invincible before I was diagnosed with cancer and I think most people in their 20s (or 30s or 40s!) feel the same way unless they have personally experienced something really scary. I’m not sure I would have taken my own advice anyway but it would probably be to appreciate the people around you and the things in life that actually matter – and to make sure that you are living the life that you want, not the one that is expected of you.

More information about Shine’s impact and our history, staff and Trustees can be found on our website here. If you’d like to get in touch, please drop us a line at hi@shinecancersupport.org.