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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What happens at the Escape?

Between Jan 29th and February 1st, Shine ran our second Great Escape. For those of you who don’t know, the Escape is one of our best events – a three and a half day get together for young adults with cancer. We take over a hotel, we hang out, we talk about all the stuff we don’t usually get to talk about (like dating, depression and infertility) – and this year we hit the karaoke hard. You can see a video of our 2014 Escape here.

One of our Escapees, Minh, has written a bit about his experience at the Escape. Take a read – and get ready to sign up for Great Escape 2016!

2015 Escapee Minh Ly

2015 Escapee Minh Ly

The Lead Up

I began writing this as I sat on the train to head down Bournemouth for the Shine “Great Escape”. I’ve been in remission coming up to 8 years now and have pushed it to the back of my mind quite well. I can’t help but feel scared about spending four days talking and hearing about the subject cancer. I fear bringing up the past.

Why then, did I decide to go on the Escape? Well the fear didn’t really occur to me when I applied! Looking back on my application, I put that “I would like to spend time with people who have and are going through similar things that I’ve been through, particularly in my age range”.

I’d been to a couple of the Shine meet ups in London where I had met a few of the other “Escapees”. To help everyone get to know one another a little, we were all asked for a photo and a few paragraphs about ourselves to circulate. And to get us talking, a private group on Facebook was set up for us. It seems that I wasn’t the only one feeling slightly nervous.

I wasn’t sure what to expect, but with clear skies from the window of the train, I hope for it to stay like this for the walk on the final day!

The Escape

“What happens at the Escape, stays at the Escape!” – an Escapee, 2015

The whole experience and organising was great! Shine knows not to jump into the heavy topics on the first day, with everyone tired from travelling and new to one another, so they ease us in with introductions, let us get to know each other, have us do magazine cutting collages, and share our first dinner together. It was a very warm welcome.

The following days, a number of different sessions were run, some for everyone and the others in parallel, allowing the Escapees to choose the sessions that was more relevant to them. I’ve only been to the standard conference-type events, where you sit in an hour long session just to hear a couple of people talk, so that was what I thought the Escape would be like – but it wasn’t. Instead, there would be a short talk on a topic and then some form of interaction, whether that was breaking away into smaller groups for a bit of discussion before feeding back to the group as a whole or individually.

For me the topics were interesting, thought provoking and sometimes hard-hitting.  I particularly found myself nodding (well inside my head!) to a lot that was said in a session about Post-Traumatic Stress Disorder (PTSD). I’ve bottled a lot up and not really spoken about cancer until it’s too late and I have some form of breakdown. This session told me that I’m not the only one having trouble after remission and also that this can happen not just straight after treatment but many years later.

There was a lot to take in over the four days and I didn’t get time to process it all during the time away. There is so much going on, but its not always full-on; there are plenty of tea and coffee breaks (much cake included!) and you get free time to explore Bournemouth, the beach (5 minutes away), chat with others or just relax in your room. In the evenings, to take your mind off it all you could play a bit of bingo (with a variety of alternate bingo number calls) or partake/listen to the rest of the gang hitting up the mic and doing a bit of karaoke.

There was a sadness to be leaving the others at the end of the Escape, but I also felt ready to go back to my life, and ready to take action on the next steps.

The end of the Escape, but the start of moving on.

During the Escape, I thought about what I was looking for, why I came to the Escape and what I really wanted. This kept changing from session to session, day to day. After the first day I was sceptical about whether I would get anything out of the Escape as my mind seemed so lost and confused.

So what did I get? Firstly, I got the realisation that I need to talk about what’s happened to me, to relive it and stop burying it in the back of my head, whether that be by writing a personal diary, blogging ,or talking to a counsellor. I will never be able to get rid of the memories of being ill, but everything I learned at the Escape will help to dampen the effect it has on me when it suddenly crops up in my head.

Second, in the other Escapees, I’ve found friends who understand and who I can talk to when it feels like there is no one. Everyone is very supportive of one another and even after the Escape that has continued online.

Overall I feel good! I’ve had a bit of weight off my shoulders and though I’m not sure how long this feeling will last, I now know what needs to be done.  I think this is the first time that I’ve been in a positive mind-set about my cancer since I got into remission.

What people get out of the Escape will differ depending on their experience, but one thing is for sure: you will meet a fantastic set of people. The Escape was full of laughs (and some tears) as well as fun, and amazing people. It’s something I needed and something I will never forget. Thanks Shine and big hugs to the Escapees of 2015!

Minh Ly is a member of Shine’s London network.  He was treated for lymphoma 8 years ago and is in remission.

Shine’s Great Escape!!

If you’ve been to any Shine events in the last year, you would have heard us talking about our Great Escape – a weekend in Bournemouth for young adults with cancer.  Well, at the end of January, we finally held it. And it was a fantastic time!

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We started the weekend on Friday afternoon with a the least ice-breakery type activity we could think of to get the ball rolling.  We had 20 Escapees join us – men and women all of whom are in their 20s, 30s and 40s.  There were all different types of cancers too! We then swiftly moved into some welcome cocktails and dinner.

Saturday morning started off with yoga for those who were up early and then we moved into some tougher discussions about issues like anxiety and depression, fertility, work, and what it’s like to live with cancer when it can’t be cured.  To boost spirits on the Saturday night we had some wine with a yummy fajita dinner – followed by a few pretty raucous rounds of bingo! Bingo 2 Bingo 1

Sunday morning we had a session on finance and insurance – we quickly discovered that although it’s really important to have a will, almost none of us did.  It tops the list for our post-Escape follow up!  We then moved onto our physical challenge – a 5km or 1km walk along the beach in Bournemouth.  We were amazingly lucky with the weather.  Despite torrential rain in the first couple of days of the Escape, the sun was blazing and everyone managed the route with some taking the noddy train to and from the beach.

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We ended the Escape knowing that a lot of new friendships had been made and also that many people didn’t quite feel as alone as they did before.

At Shine we know how isolating it can be to be a young adult with cancer and we’re aiming to build a community that can support everyone in their 20s, 30s and 40s who is diagnosed. That’s 30,000 people per year in the UK!  We currently starting to plan for our 2015 Escape (if you can believe it!).  If you’d like to help us make the event even bigger and better, why not consider fundraising for us, making a donation? Check our website for more information!