Introducing Kate!

Five years ago, Shine didn’t have any staff. In fact, we were really just getting the ball rolling on this young adult cancer charity whole thing. Looking back at where we started makes it even more exciting that we’ve just welcomed our FOURTH employee!

Read below to find out more about Kate – she’ll be supporting our 14 Shine Networks across the country. We’re still a tiny charity (with big ambitions) but we’ve grown a lot in the last few years and we couldn’t be happier to have someone new on our team!


Hello, I’m Kate!

Trying to put almost 40 years of life into a few hundred words isn’t easy AND I am not one for talking about myself, but I wanted to introduce myself and give you a bit of insight into why I do what I do.

Born in Northumberland (very proud of this!), we moved south to Bedfordshire when I was nine so my accent didn’t have a chance! Aged ten, I was diagnosed with Type 1 Diabetes which had a huge impact on my education as I missed so much school. There was an underlying cause of the diabetes which wasn’t discovered until I was 16, so it was IMPOSSIBLE to manage!KJ PP

As a young teen, I wanted to go into medicine, but all the health stuff got in the way and I wasn’t able to finish my A-levels or go to university. Then, when I lost most of my sight in my early 20s because of diabetes, I really felt that the odds were stacked against me. Fortunately, with little sight I was still able to do some studying with the Open University, which was brilliant. After hundreds of bouts of laser treatment and a month in Addenbrooke’s Hospital, Cambridge, I thankfully regained a lot of my vision and this remains fairly stable to-date.

Handling all this stuff at such a young age had a massive impact on my mental health and I really struggled with anxiety and depression, but it made me particularly interested in the impact that physical health challenges can have on our mental health. As I found it difficult to get into work, I started volunteering for a tiny mental health charity based in Luton, and before I knew it I was working with them full-time and loving it. I worked with people who had various mental health challenges, helping them to write and perform small drama pieces for health care professionals and the public to help them understand what life is like with a mental health condition. Although I was most definitely not into the drama side of things, I found it incredibly rewarding to be able to bring both sides of the coin together and to challenge perceptions, leading to changes in clinical practice. Nowadays, this would be called something fancy like ‘co-production’ – but nearly 20 years ago I don’t think that term existed!

KJ Beach 1Fast forward to today, and I have had the privilege of working for several charities including Mind, Crohn’s and Colitis UK, and most recently Cancer Research UK. My focus was volunteer management until 2015, when I took on a patient engagement role which brought patients and clinicians together at local and national levels to improve services. Over the past few months, as well as working in patient engagement, I have started to talk about my own experiences as a patient. This has been so rewarding. I have been able to get involved in an NHS Improvement initiative for patient leaders and I have also done some work with finance and insurance company American International Group (AIG), helping their managers to become more inclusive.

I am so happy to be part of Shine Cancer Support, and I feel that all the professional and personal experience that I have had fits perfectly with the role of supporting and developing Shine’s local networks. What excites me the most is working with all of you to help Shine grow and reach more people while keeping true to the Shiny vibe! What you say, what you need, and how you feel about things really matter, and together we are such a force for good. I am really looking forward to getting to know all of the network leaders, and understanding how we can work better together across Shine’s community. Without all of the amazing network leaders, Shine would simply be four people desperate to make a difference to the lives of young adults who have had a cancer diagnosis.

I get what it is like to be ill when you are just getting to grips with yourself and life: to have that rug pulled out from under you, and to have so many hopes and dreams shattered. That said, I wouldn’t change my past as it has brought me here. 2018 is a big year for me as I turn 40 in November and I am already planning the celebrations! I never expected to reach my fortieth birthday, so it really will be a big party (parties…?) and I will be more than happy to accept cake when I am out and about.

See you soon!

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Life – but not as you knew it: Living the dream

In September 2017, a group of intrepid climbers will make their way up Tanzania’s Mount Kilimanjaro while raising money for Shine. One of those making the journey is Rosie Hellawell, a member of Shine’s Dorset Network. Rosie currently blogging her way through cancer treatment (and the alphabet) and we’re delighted she’s written a blog for us about how she’s working to realise her dream of climbing the world’s tallest free-standing mountain once she’s finished treatment.  Take a read, share, and let us know what you think. And if you’d like to donate to Rosie’s trip, please check out her fundraising page here.

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Guest blogger Rosie Hellawell

DREAMS: Transforming Desires to Reality Everyday through Aspiration, Motivation and scary Statistics!

Desires

Since receiving my breast cancer diagnoses in June of this year I wouldn’t say that my long term desires have massively changed. I would still like to complete my degree, find a nice guy, travel the world, buy a house….that kind of thing. Nothing too out of the ordinary. I am hoping that cancer is just a little blip in obtaining those goals and that it is actually teaching me a lot and opening up new experiences that will be useful in the future.

Reality

However, I cannot escape the reality that my mortality has massively been called into question. For the first time I feel first-hand how precious life is and how quickly it can be taken away. I see members of support groups that I am part of, incl

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NED: No Evidence of Disease

uding Shine, being taken too early on an all too regular basis. So, in the spirit of coping with reality, I must now add ‘living for a reasonable amount of time’ to my list of desires. Unfortunately, as we all know there is no cure for cancer but to become a ‘Neddy’ (to have ‘no evidence of disease’) is now also up there with the best of the rest of my desires.

Everyday

There is no getting past it: living with cancer on a daily basis is no walk in the park. But having the support of others in my age range who are dealing with similar situations to me has proven invaluable.

A lot of control is taken away by this hideous disease but I choose to retain what control I do have by taking actions towards my future. This has been anything from getting involved with different support groups, trying new sports, fundraising, blogging and becoming an ambassador for awareness charities. But on a particularly overwhelming day it can mean simply writing a meal plan and a shopping list. I find everything is easier when broken down into smaller chunks. By doing that shopping and cooking that meal and freezing up portions for future rubbish days, I am once again back in the driving seat.

Aspiration

Aspiration is defined as ‘a hope of achieving something’ or finding the inner strength to achieve. As a wise man once said, (well actually it was Dave Pickles in his webinar last week!):

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Yes, I have just stolen his quote but it makes perfect sense! This picture speaks a thousand words to me. I refuse to let worries of failing hold me back. If I don’t try, I will never know what I am capable of and the last thing I want to do is look back at all the things that could have been if only I hadn’t let fear get the better of me. I would much rather look back at all the amazing things that I did manage to achieve.

The opportunity to climb Mount Kilimanjaro for Shine Cancer Support has come at the perfect time for me and has given me a focus to get me through my treatment and out beyond the other side. Not only will the trek itself be a huge physical and mental challenge, the fundraising and training will include targets to be met along the way. This will help with my recovery and will give me back some more of that lost sense of purpose and control.fb_img_1472033674460

Motivation

A cancer diagnoses is a pretty big motivation tool to get me off my backside and out of my comfort zone, saying ‘yes’ and taking on all the new and exciting opportunities that come my way. The fact that I can raise money for such an awesome charity at the same time is just the icing on the cake. It means that young people diagnosed with cancer in their 20’s, 30’s and 40’s will also be able to feel the full force of fellowship and shared experiences.

Statistics

Scary statistics do definitely help to motivate me. My current ‘favourite’ is that I have 43% chance of not being here in 5 years’ time. I discovered this at 3am one morning when Googling (never a good idea when experiencing steroid-induced insomnia). While I realise that some stats should be taken with a pinch of salt and that, compared to some people, I should be grateful for this figure, the stats also serve the purpose of reminding me that life is precious and none of us know how long we have left. Life can all too often be too short, so I for one am going to go out there and grab every opportunity that comes my way…. what better way to start than up the very aptly named Shiny ‘Mountain of Light’?!

Rosie is a mature social work student who lives in Bournemouth. She was diagnosed with breast cancer in June 2016 and is currently undergoing treatment.

Rosie regularly blogs about her life with cancer here and her fundraising page for the Kilimanjaro trek next year can be found here.

Life – but not as you knew it: Just the Two of Us

Having cancer is tough. Supporting someone with cancer can be just as difficult.  So what do you do when you’ve got to do both as a young adult?

In our latest blog, Charlotte shares her story of coping with cancer twice in four years: first, when her husband was diagnosed with Hodgkin lymphoma and then, a few years later, when she was diagnosed with non-Hodgkin lymphoma.  It’s a rare situation but it’s not unheard of – and across Shine we know a few couples who have had to deal with a cancer double hit.  Frank and honest, we’re sure you’ll be able to relate to Charlotte’s thoughts on the changes that cancer brings.

Please feel free to share on Facebook, Twitter or your blog!


Charlotte and Neil

“I love you”.

When you fall in love and share those three little words with someone, life is meant to be happy and full of dreams. But there are three other words that can change your life forever. Your dreams shatter into a million pieces and vanish beyond reach. Those three words are, of course, “You have cancer”.

Any young adult with cancer would wonder what they did to deserve a potentially deadly illness at a young age, and would worry about what the future holds. But when both you and your husband have to hear those words, the world comes crashing down and is never the same again.

This is what happened to my husband and me. Neil was diagnosed with Hodgkin’s lymphoma in 2009 aged 29, and had a recurrence in 2010. I was diagnosed with non-Hodgkin’s lymphoma in 2013, aged 32. Neil had 6 months of ABVD chemotherapy but then went on to have further chemo, a stem cell transplant and radiotherapy. I endured an intensive course of RCODAX/M-IVAC chemotherapy, a high-dose regimen.

When you take your vows, ‘in sickness and in health’, as we did in 2007, no one expects them to be tested to the limits until you are in your late seventies, if at all. The reality of what our relationship has become, with one another as well as other people, is a far cry from what it should be at our age. On the one hand I wouldn’t have wanted to share my cancer experience with anyone else. I feel blessed to have met someone who has stood with me through my darkest days. It is great that we truly understand how each other feels and that we can fully empathise about the effects of chemotherapy. We have shared the highs and lows, laughter and cancer jokes, and cried many, many tears. However, it is not what we wanted from our relationship. We had dreams of a family, a new house and successful careers – what every young couple wants for their future. But our lives are a far cry from this and we have been left feeling like we live in a bubble, looking in on people who are living our dream.

When we told friends and family about Neil’s diagnosis it was a shock to all of them. Some tried their best to offer support while others struggled with what to say and do. One of the hardest parts for me was that, as people rallied round Neil, no one asked how I felt. I tried my hardest to be the strong one, to look after Neil and to hold down my full-time teaching job. As Neil recovered from his treatment we were unsure how to express our feelings to other people and found it easier to not contact people at all. Everyone’s life was moving on and ours was stuck on pause. Then we were hit again; when I was diagnosed, it was Neil’s turn to juggle a job and to look after me.

Disbelief is the only word I can use to describe that day. Dealing with Neil’s cancer was hard enough but, with me, people were lost for words. They couldn’t find the right words to say so they often didn’t say anything at all. To the outside world that may have felt like the best strategy but being on the receiving end made me feel alone and isolated. Some friends stuck around to offer their support while others sailed off into the distance.

We have watched friends and family get married, have children, buy new houses and new cars, get new jobs, and go on holiday. We have tried our best to share these happy moments but they have always been tinged with sadness and a bit of jealousy. Due to the side effects of our diseases and treatments we have had to make adjustments to our jobs and career plans and we can’t afford the bigger family home we were hoping for. The biggest loss for us is children. Before my diagnosis Neil and I went through IVF but were unsuccessful. Five attempts later we had to walk away empty handed, emotionally and physically strained, and our pockets full of debt.

I survived my cancer diagnosis with Neil by my side and although cancer has changed the usual elements of our relationship it has bought us closer together. Neil was there every day to share a hug when there were no words to say. We have an unbreakable bond, we hold each others’ hands tightly and we are thankful that we have each other. Our relationship is one of love and trust. With our treatments finished, now is the time to bring back some fun and sparkle into our lives. Neil and I are in this journey for the long haul. We may not be able to have the same dreams as our friends but we can make new dreams that are meaningful to us.

Charlotte lives with her husband Neil and their dog Willow.  She hangs out with the Shine crew at Shine Dorset meet ups. 

Shine Camp 2014!

 

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In early August we held our 5th Shine Camp – it’s taken us this long to recover and write about it!

Shine Camp is a weekend of camping with friends and families in the beautiful Dorset countryside. It gives young adults living with cancer a chance to relax and connect with other people, friends and family members that have similar experiences – and it’s great fun too!

This year we had nearly 100 people at camp and still had plenty of space in our fantastic private field at Norden Farm campsite near Corfe Castle. (Check them out if you’re looking for a great camping location!)

shine camp marqueeOur fantastic marquee, courtesy of Marqco Marquees went up on a slightly grey Friday morning and proved a great shelter from the teeny tiny bit of rain we had on the Friday evening and Saturday morning.  It also looked great at night with the colour changing light show and was the perfect place for everyone to congregate over food and drinks and to hang out for a chat.

The Friday night of Shine camp is always a ‘bring and share’ supper and once everyone has decided where to pitch and put their tents up (with varying degrees of success!) we all relaxed around the marquee.  We tucked into a feast of homemade bread and cakes, salads, quiche and all round proper picnic food! Yummy!

Saturday morning we had some pretty poor weather but the sun eventually came out and we had beautiful weather for the rest of the weekend .  Clever campers packed Wellies and sun-cream!

We went from this....

We went from this….

to this - in one hour!!

to this – in one hour!!

We never really have a schedule for Shine camp – those who come can choose to hang around at the campsite or go off out for the day with friends or family.  The only part we ask people to stick around for is the group meal on Saturday night.  With a fabulous hog roast and veggie BBQ, no one took any persuading!!

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We also share breakfast in the mornings if you’re up and about when the bacon and eggs are getting cooked!  This year we had a special Sunday breakfast of Canadian pancakes courtesy of our resident Canadian Ceinwen! (Thanks Cein!)

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Jeanette makes the bacon butties!

This year we also had our first ever best dressed tent competition and they all looked great!  The deserving winners were the Hart family whose home-made ‘under the sea’ theme stole the show in our Facebook vote!

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The WINNERS!

A few more of the fabulous tents…..

IMG_0683untitled-2P1090535This year’s Camp was made possible by all of your incredible fundraising over the past year, as well as an incredibly generous anonymous donor (thank you!!!).  We hope you’re able to join us next year for an even bigger and better event!!

 

 

Shine Dorset – new members lunch Oct 2012

We had a lovely lunch today at Frankie & Bennys at Castlepoint in Bournemouth – it was great to catch up with some existing Shine members and also meet some new ones!

It was also a great opportunity to talk about our plans for the rest of the year including starting to plan our Christmas party which will be on 15th December (book the date in your diaries now!!)

The feedback on our latest idea to host a weekly, fun exercise class has also been really positive so we are moving on with our plans to do that as soon as we can!   We are hoping to provide a weekly fun, mixed ability dance based exercise class which is for Shine members and their families (saves getting a babysitter!) Having a private class will mean that people will have the chance to meet up and chat to others as well as having the opportunity to exercise in a relaxed environment.

We all know that exercise is good for you, particularly after cancer treatment, but it can be difficult for people who have faced treatment including surgery, chemotherapy and or radiotherapy to have the confidence or ability to join a standard class at their local gym.  By creating a class just for Shine members, we are removing a lot of the body confidence issues faced by many after cancer.

If anyone has any suggestions or ideas for venues or teachers, please get in touch with Emma by emailing her at emma@shinecancersupport.co.uk

Thanks x

Shine Dorset Coffee & Drinks 30th August 2012

We managed a quick coffee and an evening drink this week! Trying to catch people that are busy in the evenings and those working during the day.

The Flirt cafe in Bournemouth triangle is the perfect host for an informal coffee catch up and their home-made cakes are amazing! It was great to meet a new Shine member too.

In the evening we were back in Bournemouth and managed to spot a couple of planes from the air show too, 2 for 1 cocktails went down a treat followed by a visit to the air show theme bar set up in Bournemouth square.

Our social coffee and drinks events are great opportunities for our members to meet up and have a relaxed chat with people that understand their experiences. The value of that is much more than the cost of a few coffees (we bought our own cocktails!!)

We have been talking to people from across the country about starting Shine groups in their areas, we hear from so many people from around the UK who would love to have something similar in their area and we are doing all we can to support these new groups.

It would be great to see enough groups set up across the country so that any young adult diagnosed with any type of cancer has the chance to meet others in their age group to help and support each other.

If you are interested in starting something in your area, please get in touch to find out how we can help!