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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A Shiny, Cloudy Escape

The Great Escape is Shine’s flagship weekend for young adults with cancer. Every January we gather 22 people at the Grove Hotel in Bournemouth for a weekend of hanging out, information, walks – and usually some karaoke.  This year’s Escape (our third!) was just as fabulous as our earlier two and we’re grateful to Robin Taylor who has written a blog about his experiences at the event. We’ll open registration for our 2017 Escape in October but you can learn more about it on our website, including videos from our previous weekends.


 

A Shiny Cloudy Escape

Photo - Robin Taylor

Our blogger and 2016 Escapee, Robin

Just before Christmas 2014, I was diagnosed with Burkitt lymphoma, a form of blood cancer mostly seen in children and adolescents. I am 34 and was previously pretty healthy. I have since been through a rollercoaster ride of treatment and recovery and 12 months on I’m finally settling back into a routine. I joined Shine Cancer Support to meet people of my own age who have been through similar experiences and decided to apply for the Great Escape because it seemed like a great opportunity to network and meet others outside my usual social group.

The ‘Journey’

I arrived at the Grove Hotel just before the Escape officially started. I’m naturally a little shy and it usually takes me a few moments to adjust to a new group. A group of people were leaving to get lunch and it suddenly dawned on me that, as I hadn’t been to a Shine event before, I might be the only person to not know anyone. However, I was greeted with a friendly smile by Laura, who signed me in and pointed me in the direction of my room. I dropped off my bags and decided to find the lay of the land. As I walked down the corridor, I met another “Escapee” who said that she didn’t know anyone either so we decided to find coffee.

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Robin during treatment

I soon realised that most people had met for the first time that day and that I was less of an outsider than I had first thought. As we sat down for coffee, we were handed bags with name badges and some notepads, leaflets and goodies including chocolate. There were now a few of us sat chatting in the warm conservatory looking out onto the garden. A few minutes in, Emma bounced into the room and introduced herself, welcoming each with a hug. I think she spotted my British awkwardness and apologised saying “sorry, but that’s how I roll; you’ll get used to me,” I had been in the building for about fifteen minutes and already felt like part of the team. Emma was followed by Ceinwen who identified with me as a “chemo buddy” as we’d had the same treatment.

Breaking Ice

After coffee, we headed to the main meeting room. Emma and Ceinwen (whom Emma helpfully introduced as ‘Kine-When’) quickly built a great rapport and the presentation was informal and engaging. They talked through the schedule, some ground rules and explained that the weekend might be emotional. We were also introduced to the support staff including a (very much in demand) psychologist and an on call nurse. In talking to the ‘peer supporters’ (young adults who have had cancer and have been on previous Escapes) throughout the weekend, it was clear that they were all easy to talk to and had a wealth of knowledge to offer. The activities for the first day were designed to help us get to know each other. At dinner-time, the tables were chosen for us at random which worked really well as we all quickly met and, by the end of the second day, everyone knew each other.

I surprised myself at how quickly I had settled in – within 24 hours, strangers had become friends. By the end of the day inappropriate jokes and cancer-related anecdotes capped a raucous evening

Day 2 – Calm before the storm

Yoga (which was optional), a first for me, kick started my morning. As a runner, I could see the value of the stretches and the relaxation techniques. The session was designed to cater for all abilities and I could feel the benefit at breakfast.

The day started with a myth-busting discussion – it was interesting to see that I was not alone in my ‘common knowledge’ and ‘tabloid fact’ scepticism. We were introduced to some useful online resources with which we could help inform our opinions.

The afternoon was a fairly intense discussion about the emotional strain that a diagnosis can have on us. There were some really emotive discussions around how we managed our personal feelings and those around us who were also affected. Listening to some of the conversations found me holding back tears on a number of occasions.

We went out for dinner which was held at a fine high street pizza establishment – a welcome break from the walls of the hotel and good to catch up with people in a neutral environment.

Day 3 – A Sea Change

After my second yoga experience, we quickly settled into a discussion around relationships. We talked about how we communicated with friends, family and partners. On top of our varying diagnoses and prognoses, our family lives were just as varied but sharing the host of struggles that we could all identify with was a liberating experience.

The lads in the group were in the minority, but I had a number of really engaging, open and frank conversations. It seems that we all had handled ourselves in a very similar way and talking through our coping strategies was both cathartic and enlightening.

After lunch we broke into separate groups, and I was glad to see that I was not the only bloke in the fertility discussion. Though outnumbered, I felt comfortable talking about this difficult subject in front of the group, and the discussion was well guided by a highly experienced specialist nurse. As one of my fellow male companions said later “we learned a lot about how… er it works” (followed by a huge laugh from the group)

Apart from a few optional activities, there was a fairly generous break before dinner so I decided to go and hide. I didn’t even get round to switching the TV on or pick up my book as planned before the emotions started pouring out of me. To help me get through the next few hours, I decided to write a poem:

A bottle

There’s a bottle within which all my tears go.
Emotion comes, I take one, stopper the jar, then stem the flow. 

It’s difficult to know where and when or why they come.
The swelling fear, the hide and run.

Feelings don’t frighten me, I know they’re there.
I’ve just learned to close them down.
I don’t reflect, I look forward.
I don’t regret, I learn.
I’m trying to live,
to work,
to achieve.

My experiences don’t define me.
I learn from my experiences and define myself around them.
I’m still learning.

I’m trying to live,
to work,
to love.

I’m realizing…
that soon,
if I don’t let them out,
the bottle might explode.

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Karaoke superstars

Before I knew it, it was time to head back for dinner which was followed by a pretty intense evening of karaoke. Audience participation was at a record breaking high, and some unexpected superstars arose from behind the curtain.

Hike and home

The event of the final day was the ‘Hengistbury Hike.’ We started with a talk from a fitness instructor whose specialism is working with cancer patients. As with all the speakers and contributors of the weekend, he was engaging and interesting – and even for a fitness convert like me, his approach was really interesting. The hike was well planned with different routes depending on ability and we spent most of the time chatting and taking in the beautiful scenery. The weather was exactly as expected (rainy and cold!), but refreshing and not too harsh on us. We returned for a de-briefing followed by a hugely emotional and huggy parting of our ways.

Group walk

2016 Escapees starting the Hengistbury Hike

The journey home was a blur – I had the radio on but didn’t hear it. I think my mind was spinning from all I had learned and the wonderful people I had met. The comments in our private online group over the following days have been a testament to the bonds we formed, and I’m very grateful to everyone for having shared part of themselves with me.

I would have no hesitation in recommending the Escape to other people. On top of a range of practical advice, I learned that talking about how I feel is not only important for my own recovery, it will help those around me.

Robin Taylor blogs at http://www.robinbtaylor.com

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. 

Life – but not as you knew it: Juking the Stats

Anyone diagnosed with cancer finds themselves plunged into a new world. Doctors and nurses speak a language you have to learn, and all of a sudden your chances of living into old(er) age are measured in percentages rather than decades.  In our latest blog, one of our Trustees, Ceinwen Giles, writes about living under the shadow of statistics and how it feels to live when dying feels much closer than it should be as a young adult.  Take a read – we think many of you will be able to relate to what she says.

Juking the Stats!

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Guest blogger: Ceinwen Giles

One of the many things that I learned from binge-watching five seasons of The Wire was the concept of ‘juking the stats’. In the show, the police ‘juke’ statistics to show a reduction in crime. Rename “battery” as “assault” and, voila, crime goes down. In the four years since I was diagnosed with Stage 4 non-Hodgkin lymphoma, I have often revisited this concept.  Is it possible to juke the stats I’ve been given and make them better?

The first question I asked my haematologist after he gave me my diagnosis was what my chances were. In a scene that is seared into my brain, he looked at me and said ‘In most cases of this type it’s about 50% at five years. In your case, the disease has spread so much, it’s closer to 40”. I remember asking if he’d ever seen anyone in my position recover. He said yes, but then added the classic cancer doctor refrain: ‘But everyone is different’.

When I was sequestered in the hospital receiving treatment, I would often call my husband late at night and ask him to list all of the reasons that the statistics didn’t apply to me. I was younger than average – one point. The stats are always ten years behind advances in medicine – another point. I was fit and healthy (you know, before I had cancer) – one more point.

Unfortunately, the International Prognostic Index for non-Hodgkin lymphoma, designed to help doctors treat my disease, thwarted my efforts to make the numbers work in my favour.  I was young, yes.  But I had also spent most of my time ill in bed before the diagnosis was confirmed. The disease was present both above and below my sternum.  The tumour markers in my blood were through the roof.  Deduct one point for each of those, and I was right back where I’d started.

Having discovered that the stats did apply to me, I then spent evenings scouring the Internet for an indication that they were better than I’d been told. One of the only times that I truly freaked out post-diagnosis was after an exhausting online search confirmed that they weren’t.  No matter how I Googled it, 40% was as good as it got.  In fact, 40% over five years is good for Stage 4 cancer.

The stats played tricks on my mind, taking me to dark places.  In the waiting room of the haematology clinic one Friday, I spent time counting 10 people and think “six of you have to die, so that I can be one of the four that live”.  It’s not that I wished death on anyone in particular, you understand, but if only four of us were going to live, I desperately wanted to be one of them.

Even with remission confirmed, I remained paralysed by the numbers. Did I want to go out for dinner in three weeks’ time? I didn’t know – I might be dead.  Planning holidays fostered an inner turmoil; I wanted to get away but I was scared that advance planning would mean I was tempting fate. My husband and I bought a flat but I couldn’t work up the energy to decorate. I was happy that he and my baby daughter had a nice place to live, but, if I was going to die, I didn’t care what the sofa cushions looked like.

Anyone with cancer will have heard a million and one clichés about death. Life has a 100 percent mortality rate! You might get hit by a bus tomorrow!  The difference, as one of my friends recently remarked, is that when you get hit by the cancer bus, you’re left lying in the middle of the road, wondering when the next bus is due to arrive.  Getting up and dusting yourself off is not easily done, nor is “living as if you’ll die tomorrow”.  If I knew I was going to die tomorrow, I’d be out drinking heavily, smoking and blowing all my money.  With only a stronger than average possibility that I might die, are any of those things really a good idea?

Four years and four months on from the original 40% conversation, I’m still here and still in remission.  Although I have yet to make peace with the stats, living with them has made me prioritise things differently.  Pre-cancer, I thought part-time work was for slackers and often worked too hard.  Post-cancer, I try much harder to balance my work and the rest of my life. I still have ambitions, but they’re measured more against personal satisfaction than external reward.

I had always assumed I would live into my 80s.  Having so little clue about the future creates a strange tension and makes every day leaps of faith even bigger.  If I make it to five years cancer-free, every ache and pain will still make me worry that the lymphoma has come back.  If I’m one of the four in ten who survive, I will wonder what has happened to the other six. In many ways, my doctor was right; everyone is different and no one can tell you exactly what the stats mean for you.  I may not be able to juke the statistics in my favour but I do know one thing the numbers don’t show: hoping for the best doesn’t hurt.

Ceinwen is a proud Trustee of Shine Cancer Support and the Point of Care Foundation.  She tweets from @ceineken and currently freelances in the fields of patient experience, cancer, and whatever else she can get paid for.  And she thinks that this cartoon (from Xkcd) pretty much sums things up: