It’s Lymphoma Awareness Month – Meet Ceinwen!

September is Blood Cancer Awareness Month so we thought this was a great time to share the story of one of our founding Directors, Ceinwen.

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

Diagnosed with Stage 4b diffuse large-b cell lymphoma in 2010, Ceinwen now runs Shine with Emma (look out for her profile soon for #BreastCancerAwarenessMonth) and heads up our fundraising activities, as well as designing our national programmes with Emma, our other Trustees and our amazing volunteers. Having been through cancer, its treatment and its aftermath, Ceinwen’s insight and experience is key to what we do at Shine and helps to ensure that all of our activities meet the needs of young adults with cancer. Read on and please share with others!

When were you diagnosed and what with?

I was diagnosed with Stage 4b diffuse large b-cell lymphoma in February 2010.

How did you find out you had cancer?

At the end of December 2009, I was pregnant. I became really unwell and had my daughter prematurely. The doctors thought that I was experiencing complications from the birth so I don’t think they took things too seriously at first. About three weeks later, I developed such excruciating back pain that I ended up calling an ambulance and going to the hospital. They gave me antibiotics but when I didn’t feel any better the next day, I went back. I then spent three and a half weeks in the hospital seeing all kinds of doctors who were trying to figure out what was wrong with me. Tuberculosis was looking like a good candidate for a while and I remember thinking “that doesn’t sound so bad” but after a chest x-ray they realised I had a large mass in my mediastinum (a part of the body I’d never heard of before!). They also discovered I had “lesions” on my liver – at the time, I also didn’t realise how bad that sounded. Eventually, someone got a haematologist to look at me and he put all the symptoms together. I’d had night sweats, fevers, loss of appetite and unbelievable fatigue – all typical symptoms – but no one had realised I had lymphoma.

What did you think and feel when you were diagnosed?

I had barely heard of lymphoma when I was told I had it. I knew nothing about cancer and was obviously worried I was going to die. I

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Ceinwen & her daughter today

was devastated and worried I wouldn’t get to see my daughter grow up. And then pretty quickly I went numb. I generally managed to hold it together during the day but spent a lot of nights panicking and crying. I was also told that I would have to stay in the hospital for six months receiving chemo and I remember wondering how my husband and I were going to manage work and a baby and cancer all at the same time.

How did the people around you react?

I think they were as shocked as I was by the diagnosis. I had never heard of anyone having cancer and a baby at the same time and neither had my friends or family. I remember thinking “Cancer and pregnancy is a thing?”. For the most part though, they rallied around. I had family and friends come to stay and look after my daughter and help my husband out. I was never short of visitors! If there’s one thing cancer taught me, it is how much I am loved. Whenever I have a bad day now I try to remember that.

What treatment did you have?

I was put on a clinical trial testing a high-dose chemotherapy regimen called R-CODOX-M/IVAC-R. I had a Hickman line and two of the rounds had 15 days of chemo followed by a recovery period, while the other two rounds were 7 days of chemo followed by a recovery period. Part of the treatment is having “IT chemo”. I remember seeing that on my treatment sheet and not knowing what it was. It turns out it is chemo injected into your spine. I was horrified! For me, that was the worst part of the treatment. I had to have it done 8 times and I’d already had a few lumbar punctures and a bone marrow biopsy by then, so by the time I finished treatment I never wanted anyone to go near my spine or back ever again!

How did you feel through treatment?

I know for a lot of people chemo makes them feel terrible, but I was so ill when I started that the treatment made me feel better. I’d been so weak that once the chemo kicked in and started to push back the cancer I felt totally different. I had a period of time where I went days without brushing my teeth or getting out of bed. To be able to get up and take a shower felt like a miracle.

What happened after treatment finished?

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Monthly immunoglobulin infusion done at the hospital

For about a year after treatment, I focused on getting my fitness back. Spending six months in bed is terrible for you and I found it hard to walk for long periods because my feet and back ached. Just as I was getting back into running, I caught meningitis. I ended up back in the hospital for a month and it was then that the doctors discovered that my immune system had really taken a hit as a result of one of the drugs I’d had. My body basically doesn’t produce b-cells properly anymore so I need monthly immunoglobulin replacement therapy to prevent me from getting any more infections. Immunoglobulins are super expensive so I like to think of myself as a million dollar woman.

Tell us about your work with Shine

Shine is my and Emma’s baby! Both of us were diagnosed with cancer as young adults and we both found there was a real lack of support out there. If you aren’t a child or teenager, you get lumped in with elderly patients who may be lovely, but they don’t get what you’re going through. I remember mentioning to some people that I volunteered with how I was missing loads of work because my appointments took all day and they said “Oh, I just pack a lunch and make a day of it”. We had very different perspectives!

I met Emma at the end of 2010 and found out she had started a support group in Dorset called Shine. I’d wanted to do the same thing in London so we decided to work together. Since then, we’ve grown Shine into something bigger than we ever imagined six years ago. Our first workshop in April 2012 had about 20 people at it. Last year, our Shine Connect conference had 100. It’s been amazing to see how many people we’ve been able to reach and support. I always thought that I wouldn’t want anyone else to feel as alone as I did when I was diagnosed. I hope with Shine we’re helping to make that happen.

What difference has Shine made to you?

Apart from loving my job, Shine has also given me friends and support that I didn’t have back in 2010. I still get regular check ups, and aches and pains still freak me out. It’s good to have people I can call up to share my worries with – people who totally get it because they’ve been there. I frequently diagnose myself with other forms of cancer – cancer of the toe, cancer of the eyebrow, etc. etc. – and it’s really good to have friends who understand exactly why I’d be concerned that the bruise on my foot is cancer (and to explain why it’s probably not)

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Ceinwen with some of Shine’s peer supporters at the 2016 Great Escape

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

I think it can be hard to feel positive about something so awful, particularly something that changes your life so fundamentally. All of the things I thought I would have in terms of family and career changed when I was diagnosed. I was working in international development when I got sick and I remember my doctor saying that the sort of travel I used to do wasn’t an option, at least in the short term.

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Ceinwen working in Kathmandu, Nepal while pregnant – shortly before getting ill.

You can’t ever go back to who you were before, as much as you might like to. Some days, that really sucks. Having said that, I’m in a good place now! I absolutely love all the work we do at Shine and have a lot of fun. I’ve laughed more in the last six years than I did in the six years before that. Having a few life threatening illnesses does give you a different perspective on things!

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

I remember being really annoyed that I’d managed to get so ill because I thought I was taking care of myself – I was a vegetarian and exercised a lot. Obviously I got sick anyway, so I’d probably tell myself to eat more cake.

You can read more personal profiles from Shine’s community here. Shine also has an private online community that we run via Facebook. To join, send us a request and then send a message to us through our main Facebook page. 

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Fighting talk: Why I’m not ‘battling’ my cancer

Most of us who have been diagnosed with cancer will be familiar with the war terminology that frequently accompanies a diagnosis. Fight, battle, war – they’re all words that get thrown around when you’re going through treatment or living with cancer. But are these words helpful? What do they really mean? In our latest blog, Sarah Carlin explains how she feels about this terminology and why she’s not ‘fighting’ her cancer.  We’d love to know what you think about the words that are used to describe a cancer experience – tweet us on @shinecancersupport or email us on info@shinecancersupport.co.uk. Happy reading!


JoJo Gingerhead, was a member of Shine who blogged prolifically about her experience of living with a secondary triple negative breast cancer diagnosis. I never knew Jo personally, but I admired her from afar, not least for her aim of “trying to find light in a dark and scary situation without using the words fight, battle, journey or survivor”.

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Sarah and her Uncle Paul

The rhetoric around cancer was a bugbear of mine long before I received a diagnosis. I had a much-loved uncle who passed away from a brain tumour at the age of 28, and I’ve always been pretty sure it wasn’t because he didn’t fight hard enough. Yet it’s seemingly impossible to talk about cancer without using militaristic language.

Many organisations use this kind of language to get people on side. Reading slogans like “we’re coming to get you”, you’d be forgiven for thinking that cancer was some sort wildcard despot rather than a complex range of different diseases.

Cancer is not some sort of playground bully you just need to square up to, yet so many people seem to think it is. I’ve had someone tap their head and tell me not to worry because “it’s all up here”, as though all you need to do is stick on the Rocky theme tune and channel your own determination in order to stop those cells dividing. Something, I’ll wager, they’d never say to someone with COPD, or heart disease, or HIV.

There’s also the problem of confirmation bias. Many people who survive the disease talk about their determination not to die, so the idea that this somehow was a factor in their survival seeps into the public consciousness. But the will to live is a pretty much universal human characteristic. You obviously don’t hear from the people who were equally determined, but who died anyway because that’s how disease works.

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Blogger Sarah

Another issue is that nobody “wins” their battle against cancer, or certainly not in the way the media portrays it anyway.  Few people finish chemo, fist-bump the nurses and declare themselves triumphant. You crawl home and spend the next weeks, months, years sh*tting yourself that it’s going to come back. Often it does. If it doesn’t, then maybe, just maybe, after five years has elapsed you might tentatively feel like the danger has passed. There’s no VE day, no calling the troops home, no bunting. This is a disease in which you can never be wholly sure that the gruelling treatment you’ve just endured was enough. Sure, you may have vanquished the enemy on the frontline, but who knows if there are little metastatic guerrillas regrouping and waiting to re-launch when the time is right? My own initial brush with cancer was as close to a clear cut victory as anyone could get. Successful resection, no lymph node or vascular involvement, stage 1 – peace for our time. The bombs fell a year later, however, when it returned in not one but seven places.

Sometimes, the idea that I can fight my cancer through sheer force of will is seductive – I can completely understand why so many people choose that as a way of coping. The thought that you could die so young of this disease just seems like such an insult, so outrageous that the adrenaline runs through your veins and yes, you want to fight. As in most instances in which your life is in danger, the fight or flight instinct has kicked in.

But I know that I can’t fight my cancer. If I live, it won’t be because of anything I’ve done or felt. It will be because of a brilliant consultant, effective treatment and dumb good luck.

So whenever someone tells me I can fight it, it makes me wince – not just for me, but also on behalf of my uncle and on behalf of the many others who are no longer with us, like JoJo.

Sarah Carlin is 31 and works as freelance in PR and as a copywriter. You can read her other blog for Shine (about the perils of reading about cancer on the Internet) here

Life – but not as you knew it: No way back!

One of the things that no one tells you when you’re first diagnosed with cancer is that you’ll never be the same (and if they told you, you probably wouldn’t believe them!).  Whatever the outcome of diagnosis and treatment, many people feel changed.  This can be a disorienting feeling – after all, we just want to get back to normal, don’t we?

In our latest blog, Jen shares her thoughts on some of the good  and bad  changes that she’s experienced since her diagnosis a year ago.  Here at Shine we don’t always push “positive thinking” because – let’s be frank – there’s A LOT about cancer that just isn’t positive.  However, as Jen points out, “there’s nothing like a life threatening illness to highlight what’s truly important in life”.  It’s a shame we don’t often get this insight without the life threatening illness, but it’s still worth remembering!


Jen Hart

If I had the choice of never having had cancer and returning to the life I was living before, I most definitely would. The rollercoaster of a cancer diagnosis and treatment is a long, bumpy, and terrifying ride. It’s also one that does not end where it started. To quote the title of this blog series: it’s your life, but not as you knew it!

As I slowly accept a new version of me within my strange new world I am starting to appreciate the positive changes that have come about due to my ride on the cancer rollercoaster. I may have new limits but I also have new priorities, new perspectives, and new hopes and dreams.

Following my diagnosis last October, I took a stoic approach, gritted my teeth and readied myself for six months (Ha ha! This was my first naive mistake!) of gruelling treatment. I was determined that I would get through whatever I needed to, be cured, and then return to my normal life. I would plod on with living as if cancer had never happened (this was naïve mistake number 2!).

Almost all of my family and friends shared my naïve view, and why wouldn’t they? Unless you’ve had experience to the contrary it is a perfectly sensible view to hold.   Many times throughout my treatment I was reassured by well-meaning friends and family that it would soon be over and I would get back to normal. The concept seems laughable to me now, but for at least the first few months of treatment the thought of returning to a “normal” life kept me going. I was fiercely determined not to be “changed” by cancer. I did not need a brush with my own mortality to be taught to appreciate life thank you very much!

It’s very difficult to accept change when it is forced upon you so brutally. Initially it was the superficial, physical changes that were my focus and I was determined to return to exactly how I looked “before”, as soon as possible. At times it felt as if my entire identity was encapsulated in the way I looked. I think the focus on these superficial things stems from the fact there is absolutely nothing you can do about the non-superficial things that have been changed. The scars from surgery, the damaged nerves and muscles from chemotherapy and radiotherapy, the terrible memory and disrupted thinking process – it has been hard to accept these things as part of my new life.

As time has passed, however, I’ve had to slowly learn the art of acceptance rather than try to return to ‘normal’. I will never look like I did before and I will never feel like I did before but, you know what? That’s OK. I may be the same person but my experiences have shifted my life onto a completely new trajectory.

There are, of course, the physical changes that I have to learn to live with. I must accept that I may never regain the same level of fitness and health I enjoyed before and that there may be permanent damage done by treatment. I am learning to let go of the anger and bitterness that I sometimes feel about that. It’s easy to say “well at least I’m alive” but at times it’s difficult to feel that. And then there is the threat of a recurrence that all cancer “survivors” must learn to live with. I need to learn to supress the reflex to break out in a cold sweat every time I have a nagging pain or feel a lump or bump. I am assured it gets easier with time and I’m sure it will.

Looking past these more negative aspects of my changed new reality there is, however, a much stronger and overriding positive change. There’s nothing like a life threatening illness to highlight what’s truly important in life. I have been shown the true value of relationships and witnessed the best of humanity in the love and support I’ve had showered upon me. Small acts of kindness have meant so much. I hope that in my new life I can always remember how these small gestures have impacted upon me and pay the kindness forward. I know more about myself now than I did a year ago and I have an appreciation for aspects of my personality that I perhaps didn’t previously value or recognise. I am aware of how quickly ‘good health’ can be whisked away and I find joy in simply being able to walk or run in the sunshine. I try to focus on what I am doing more and think about the future less. Living in the moment is such a cliché but, for me, it has been directly correlated with peace and happiness. In my new, post-cancer life I have found a deeper appreciation of how I can create my own happiness, and I fully intend to create as much as possible.

Returning to ‘normal’ is no longer my goal. My new normal is pretty damn good. There’s no going back. And that’s OK.

Jennifer has just finished her treatment for breast cancer. She lives in Dorset with her husband and two daughters – and, with two others, runs Shine New Forest!