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!

Life – but not as you knew it: The importance of a cancer crew!

At Shine, we’ve always believed that there is a lot to be gained from being around others who just get what life with cancer is like.  We now run 11 networks across the UK which have men and women who have experienced a cancer diagnosis meeting up for coffee, drinks, dinner and occasionally some (very bad) bowling.  Once you’re diagnosed with cancer, many people feel like they’ve lost something; in our latest blog, Ellie Philipotts explores both the losses and gains that come with cancer and tells us why she thinks a cancer support network is so important.


Ellie Philpotts.

Our latest blogger – Ellie

 

Cancer, cancer, cancer. If you’re reading this, you can probably say you’ve been there, done that and got the t-shirt – but lost a number of other things in the process: hair, body parts, confidence, friends….

Going through all of this is almost second-nature to us Shiny people, but not to the average Joe, (which can seem like another term for ‘every person in the world but me’.)

I think there’s an irony in the fact that cancer itself is formed of millions of little cells going haywire, leading to what feels like millions of medical procedures to solve the problem and yet it’s one of the most isolating things a person can go through.  Despite the amount of people who’ve also had this diagnosis, when your own journey begins, it definitely doesn’t feel like millions of others know how you feel, either mentally or physically. What I’ve discovered though is that probably the biggest cancer perk (yes, they exist!) can be found in a new, post-cancer support system.

I was diagnosed with Hodgkin’s Lymphoma in 2011 when I was 15. Less than two months later, I went on my first ‘cancer trip’, to London with Teenage Cancer Trust. We completed a music workshop backstage at the Royal Albert Hall; met Roger Daltrey and saw The Who perform in aid of the charity. The next day was full of exploring Camden and realising how lucky I was to have been given such a great break from chemo and steroids.

From then on, during the rest of treatment and beyond, I’ve been heavily involved with Teenage Cancer Trust. My Birmingham Children’s Hospital group went on social events like meals every month and trips to London; sailing with the Ellen MacArthur Trust, two incredible Find Your Sense of Tumours; Look Good Feel Better days on the ward; Clothes Show Live tours…the list goes on!

In September 2014, I moved away from home to study English Literature and Journalism at Cardiff University. Obviously this was a big change – leaving the life I’d always known for a four hour round-trip away. Cancer barges into your life without warning, but after a while it becomes a part of your identity, so although by this stage I was no longer a patient, I was still leaving my hospital and support group at home. I’m not someone who wanted to forget about cancer as soon as I finished treatment. Instead, I’ve really liked being involved with different charities, and although my life definitely isn’t cancer-orientated now, it is nice to have my security blanket there.

In January 2015, I attended my first meet-up with Shine Cancer Support, this time in my new home of Cardiff. I heard about Shine Cardiff randomly after noticing Rhian, Cardiff’s co-founder, featured on the Humans of Cardiff Facebook page. I soon went along to a meet up at a local café which was lovely.

Shine Cardiff

Shine bucket collection on the streets of Cardiff

Despite being the youngest person in the Cardiff network (as well as the longest off treatment), I’m so happy I joined and I still find that I can relate to the others’ issues. More importantly, we definitely don’t just talk about cancer and we’ve had a lot of fun chats during our Friday ciders, Sunday coffees and Cardiff Bay dinners!

And that’s why I think Shine is so important: despite the different ages and life stages (some are married with children; I’m a student; others were diagnosed last month) we all have one big common ground and understand how it feels to have cancer. Verification that you’re not alone in feeling the way you do; a chance to make new friends; and bonding over past experiences are why cancer support groups are so important. Cancer is the reason these groups come together, but the laughter and other bits of conversation are also often one of the best ways of taking your mind off the cancer. Of course, our other friends are fantastic, but they can’t quite understand what we’re going through, because they haven’t been there themselves. The Shine crew is different! We can lose a lot through cancer – but a support group means you gain, gain, gain – friendship, happy memories, giggles, and probably weight – but weight gain from biscuits over a natter is surely preferable to weight gain from steroids, right?!

Ellie Philpotts is an aspiring journalist and student at Cardiff University. You can keep up with her on her blog

Life – but not as you knew it: Coping with infertility

In many cases, cancer treatment affects fertility.  Here at Shine we know that (a) health care practitioners don’t always deal with fertility and cancer issues very well and (b) questions about fertility can be one of the toughest things to deal with after a diagnosis.  Shine’s 2012 survey of young adults with cancer found that a whopping 50% of people didn’t feel that they’d been adequately supported to preserve their fertility prior to starting treatment.

In our latest blog, Rhian Jenkins (who also coordinates Shine’s Cardiff network) shares her story of diagnosis with ovarian cancer at 25, and how questions about her fertility have impacted upon her.

If you’d like to chat to others about your experiences, why not request to join Shine’s private Facebook group? We’ve got 400 men and women chatting cancer there – we’d love to see you.


Rhian Jenkins

Last week I discovered that I have gained five unwanted, un-shiftable pounds. As I stood in the tiny room at my GP’s surgery, my toes gripping the scales, I hastily added two inches when the nurse asked ‘height?’ in the hope of achieving a more desirable BMI.

The bad news: The nurse didn’t believe me and instantly had me standing flat-footed against her height chart while I mumbled something about wearing platforms last time I was measured.

The good news: Not even the most furrowed-browed of nurses tells the only twentysomething in menopause clinic to eat less cake.

I was 25 when I was diagnosed with germ cell ovarian cancer. At first, I was thought to have a cyst and, reassured by everyone’s affirmations over my general health and my age, I set off for an ultrasound expecting to hear what statistics would have me believe. The walls in the waiting room were plastered with posters on nursing and the chairs were filled with expectant mothers. As I fleetingly fretted over losing my fertility to a benign condition, I was ill prepared to be plunged into a world of tumours and treatment decisions.

The nature of my cancer and treatment left little chance or time for debate regarding fertility preservation. I began chemotherapy a week after diagnosis in the vain hope that my remaining ovary would jump back to attention once treatment ended. The almost poetic irony that the very ‘things’ that were meant to be a source of new life were on a mission to kill me was not lost on me – I tried desperately to see the funny side.

At the beginning of treatment, when your mind is preoccupied, it can be difficult to discern the importance of losing your fertility. At that point, it’s just another potential ingredient in a monstrous, scary, side-effect sandwich. Every time I tried to brush aside conversations about the possibility of infertility and claim I wasn’t that bothered, my consultant reminded me that ‘our aim is that one day it WILL matter to you.’ It seemed like something that was so far away, so hypothetical, and so disconnected from anything I was going through that it seemed an absurd thing to worry about. It was only when the twelve month post-chemo bell rang and I gained the official title of ‘menopausal’ that I began to realise and, dare I say, resent how different my life looked because of cancer. I sat once again in the same old waiting room, this time to collect my prescription for hormone replacement therapy (HRT).

Throughout treatment I vowed that if I couldn’t always be positive, keep my chin up, or stay true to any of the other clichés often demanded of cancer patients that I would, at the very least, remain compassionate towards others. I didn’t want my own cancer-filled universe to consume me. I didn’t want to become bitter or maudlin and I tried hard to avoid asking ‘why me?’ I placed a great deal of importance on not feeling sorry for myself and got on with what had to be done. Why then, a year after the hardest part of it all, was I feeling so cheated? I felt like a fraud every time I clicked ‘like’ on the scan pictures of acquaintances that appeared on my Facebook newsfeed.

Speaking about fertility is difficult and I guess it’s hard to grasp what it’s like unless you have been through the rigmarole of cancer treatment and losing your fertility. When I try to engage with friends who haven’t experienced cancer they usually look perplexed and cut any potential conversation short with an exclamation of ‘but that’s the least of our worries, right!’. Being fortunate enough to have the luxury of an infertility ‘issue’ combined with the fact that you shouldn’t be menopausal in you twenties is confusing. The turmoil and guilt I feel every time I acknowledge that maybe I’m not OK with the hand I’ve dealt can be hard to deal with.

It’s now two years on from my diagnosis and, like my scars, the issue of fertility is something that serves as a constant reminder of my disease. When I catch myself daydreaming about a future it is usually the future that I thought I would have. In my pre-cancer naiveté I never expected fertility to be a hurdle I would have to overcome. It was certainly never something I thought I would have to ‘work at.’ Instead, I am learning to be comfortable with the uncertainty the future I have been afforded while also learning to be excited, instead of daunted, by the possibilities of adoption, surrogacy or even egg donation/IVF.

Rhian lives in Cardiff and coordinates our Cardiff network.  She’s currently getting ready to go on Shine’s 2015 Great Escape!