I’ve got cancer – where’s my casserole?

In this post, blog editor Caroline writes about the expectations we can have about friends and family when we go through cancer treatment, and what we can do when the reality isn’t quite what we’d hoped.


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I’m still waiting…

I thought I knew what cancer looked like, long before I received my diagnosis. Cancer is everywhere. Like most of us, I’d seen the films, read the books, and even written my own cancer-themed fiction as a particularly morose young teen (!). Cancer meant harsh treatments, hair loss, and silk scarves. Breaking Bad aside, most fictional representations of cancer seem to rely on a few key tropes: cancer patient looks pale, languishes in bed, and is called upon by kind-hearted family and friends who bring endless casseroles and work hard on fulfilling the all-important bucket list. And if you’re a really lucky cancer patient, you might also get a handsome model to hold your hand through chemotherapy – just like Samantha in Sex and the City.

I’ve been living with cancer – now incurable – for just over two years, and it still surprises me to write that I haven’t ticked many of these ‘TV cancer’ boxes. I’ve had a few operations, but I’ve been hospitalised just once. I haven’t had chemotherapy (instead, I had immunotherapy) and I still have a full head of hair. My skin glows an acceptable amount (which is not something I find myself saying very often). Friends have gathered at my bedside – once, for a post-op takeaway – but I’ve never had any offers of help to fulfil my bucket list. And I still haven’t received a casserole!

The ubiquitous ‘cancer casserole’ was one of the topics that came up in the Relationships workshop at this year’s Shine Connect. While many conference attendees spoke about the wonderful support they’d received from friends and family, there were also plenty of young people with cancer who felt let down by the reactions they’d seen upon being diagnosed. Cancer rarely looks the way it does on TV, which can confuse us and the ones we love. So when we really want a casserole (or a bucket list safari adventure) and it isn’t coming our way, what can we do?

Don’t take it personally

If you are abandoned by friends or family in your hour of need, it will hurt. I’m sorry. A cancer diagnosis at any stage is a life-or-death moment – and as anyone living with cancer will tell you, its effects last a lifetime. It’s incredibly hard to cope when close friends decide that this is the time to leave you to your own devices, and even more difficult when family members also choose to keep their distance. Isn’t your family supposed to show up for you, no matter what?

Try not to take others’ behaviour personally. We all tense up when we hear the word ‘cancer’ – and the diagnosis you’ve received will have made an impact on everyone in your life. Some friends may be too scared to confront the fact that someone they love has a life-threatening illness, while others might find themselves reflecting on their own mortality for the first time. Cancer seems like an old person’s disease (how many smokers do you know who say ‘yeah, I’ll probably get lung cancer when I’m older, but I don’t care’?), so getting a diagnosis in your twenties, thirties, or forties is particularly shocking. Some people run towards danger, while others run for the hills.

Cancer doesn’t necessarily bring people together the way it does in films. For each person who decides to rekindle a childhood friendship and drive across the country to take you to chemotherapy, there will be another who crosses the street to avoid bumping into you outside Costa. My own experiences of friends, family, and cancer taught me that if I had a strained or distant relationship with someone before my illness, my life-or-death situation wasn’t going to be the glue that mended us – however much I might have wanted it to be.

Lower your expectations

It can be difficult to lower your expectations when it comes to friends and family, particularly when social media is awash with other people’s stories of being supported through a cancer diagnosis – or you turn up to treatment to find that you’re the only one on the ward who doesn’t need a ‘guest chair’. So your living room isn’t awash with flowers and cards? While many people may be worrying about you, it might not occur to them to communicate their thoughts through gifts or surprises. But is there someone who remembers to text you on treatment day, or asks follow-up questions when you casually mention that you can’t meet them for lunch because you have a medical appointment that day? They might seem small, but those interactions can be just as meaningful as a box of chocolates or a stack of magazines – and they show that you haven’t been forgotten.

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Who needs brownies anyway…?

Ask – or encourage a friend to ask on your behalf

Sometimes friends and family don’t show up because they don’t know what to do. One of my friends told me that she didn’t get in touch while I was on long-term sick leave because it was an emotional time, and she thought that I would need space. In difficult situations, friends might treat us the way that they would want to be treated – and sometimes that approach can be different to what we expect. Personally, I didn’t need ‘space’ during immunotherapy. I’d have preferred it if people had come over for a chat, had dinner, or just hung out and watched TV. If you think that some of your friends have misjudged the way that you would like to be treated, ask them to do something different. It would be brilliant if we were all mind readers – and managing your friendships can be exhausting when you’re also managing your health, and worrying about the future – but asking for specific support may save you some heartache. If you don’t feel up to it, see if you can enlist a close friend or relative to quietly speak to others on your behalf.

Vent – to someone who gets it

Even the most understanding friends and members of your family will always be outsiders. They have to process their own feelings about your cancer diagnosis, and you can’t control that. They might be able to listen to how you feel, but if they haven’t been through cancer themselves then they may struggle to understand. And that’s where Shine comes in! We support thousands of people in their twenties, thirties, and forties who are living with and beyond cancer, and we provide a safe space to share stories and experience, as well as just have fun. Nobody will understand you as well as someone who has been through similar struggles, and made it out the other side.

If you’d like to chat to other young adults with cancer, why not join a Shine Network meet up, or our private Facebook group?

 

 

Pasta photo by sheri silver on Unsplash.

Flowers and brownies photo by Alisa Anton on Unsplash.

Writing through cancer: using writing as therapy (and a way to help others)

In this guest blog, Sara explains how writing helped her cope with cancer – and provides some tips on how you can get started writing too!


In three months, my book is being launched. In fact, people can actually pre-order it on Amazon now. I keep having a sneaky peak to check it’s still there. It is. There’s a picture of the cover (a photo of my feet in fluffy white socks) with my name in big capital letters. Which is really weird. Weird in so many ways. Had someone told me three years ago that I’d be a published author I would have laughed (very loudly) in their face. You see, I’m not what I would call a ‘writer’. I’m not one of those people who’s lived with an unwritten novel sitting inside them and I’ve never really had any aspirations to write poetry, short stories or even magazine articles. I’ve never studied creative writing and my day job only involves the legal kind of writing. But then something horrible happened to me. I had cancer. I started to write about it. And I haven’t really stopped.

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Guest writer Sara started writing after she was diagnosed with cancer.

I didn’t sit down one day and just write it all out. I jotted things down over the course of treatment: I described my emotions and how I was feeling; I recorded my side effects at length; I wrote long gratitude lists; I wrote about my anger, resentment and fear; I recorded the way in which treatment was given to me; I made lengthy, detailed to-do lists; I ranted about people who upset me with their thoughtlessness; I made lots of exciting life-after-cancer lists; I wrote about my hopes and dreams; and I recorded my day to day observations and general musings about life, death and everything in between. And all this writing made me feel so much better.

Then, towards the end of my treatment before I went back to work, I took all these notes and I set up a website, wrote a book and starting writing articles for cancer charities and organisations. I realised that whilst the writing was helping me, it might also help other people who were going through similar things.

If you’re going through cancer treatment, or you’ve finished treatment and you’re trying to put your life back together, why not consider writing about your experience?

  1. Remember that you are writing for whatever reason that you choose. So, if you don’t want anyone to read it then they don’t have to – you can keep your writing private. Nobody needs to ever read it; you could even ceremoniously destroy it in a defiant move against cancer.
  2. Everyone can write about their experience. You don’t need to be a writer. You just need a pen and paper, or a laptop, or a phone. You don’t need to be perfect at grammar and spelling. Just remember to write what is important to you, write from the heart and be honest.
  3. Use your writing to stay in control. Going to hospital for consultant appointments, oncologist appointments, scans, blood tests, clinical trial appointments, counsellor sessions, and everything else can be so overwhelming. Sometimes it can be helpful to take notes at these appointments and then rewrite the details into a dedicated notebook/computer folder so that everything flows from one appointment to the next and you can keep on top of what is going on, rather than feeling completely out of control.
  4. Try keeping a gratitude journal. Having cancer can feel so unfair and cause all sorts of negative emotions to build up inside you. Sometimes it might help to remember things for which you are grateful. And on the bad days, re-reading this ongoing list might help to lift you out of your slump.
  5. Don’t be afraid you write down your feelings and emotions, your fears and worries. If you write them out, then they’re out of your head and you can let them go. It might even help lift the weight of anxiety off your chest a little.
  6. What to write? If you like the idea of writing about your experience but you don’t know where to start, here are a few prompts to get you going:
  • How did you feel to be diagnosed with cancer at such a young age?
  • How did it feel to tell your parents, siblings, children that you had cancer?
  • How have friends treated you since you told them about your diagnosis?
  • If you’ve lost your hair, how did you feel about it?

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    Sara, during treatment.

  • What has having cancer made you realise, that perhaps you didn’t before?
  • Have any positive things come out of having cancer?
  • How have the side effects affected you?

7. Use your writing to express your feelings towards others. Anyone going through cancer knows that unfortunately not all your friends step up and rally around. This is incredibly hurtful and can knock your confidence to an even lower level. This is not what you need when you have bigger things to worry about. It can eat away at the back of your mind with thoughts like, “Why hasn’t she got in touch?” “Why am I not invited out with my friends anymore?” “What’s wrong with me?” It might help to write a letter to these friends telling them how you feel and why you’re upset with them. Don’t send the letter, just burn it or rip it to shreds and move on.

8. Don’t forget to write about the good as well as the bad. For example, it’s nice to write about all the lovely things that people do for you (like bringing you food or driving you to appointments) and it’s nice to read these back to remember how important you are to these people.

9. Consider whether you’d like to share your writing with others. Maybe you’d like to set up a blog (which is fairly straightforward using one of the DIY blog platforms like WordPress) or a Facebook page. With both these types of blogs you can share your writing with either just your friends and family, or open it up to anyone. If you don’t want to set up something yourself, get in touch with one of the cancer charities or cancer organisations about sharing your writing as a guest blog on their website (I’m always happy to post guest blogs about breast cancer for my website, tickingoffbreastcancer.com and, of course, you can always get in touch with Shine!).

10. Don’t be shy about sharing your writing with others. It can be a bit daunting to start with, but at the end of the day people going through cancer want to read about the experiences of others who’ve been through the same thing. They’re looking for reassurance, support, honesty and advice so if you can provide these, they’ll want to read what you write. And remember these words of encouragement from me:

You have something to say, so you should say it.

Even if it just helps one person, you are making a difference.

You have a voice, use it.

People will appreciate the advice of someone who has been through it.


Sara is the author of Ticking Off Breast Cancer, a book about juggling a busy life with treatment for primary breast cancer. This book follows the physical and emotional impact of breast cancer on Sara’s life, and provides practical help by way of checklists at the end of each chapter. The book is out 26 September 2019 but you can pre-order the book now from Hashtag Press, Amazon, Waterstones and Foyles. Sara is also the founder of www.tickingoffbreastcancer.com, a website dedicated to supporting those who don’t know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online and those just looking for a comfortable, safe, calm place to turn for help. Follow her on Facebook, Twitter and Instagram.

Shine’s Northern Retreat

Hi everyone, I’m Rosie, and I’m the newest member of staff here at Shine HQ.  I was diagnosed with breast cancer in June 2016 and after following the usual treatment route of surgery, chemo and radiotherapy, I now have ongoing maintenance treatment every 3 weeks.  This is because the docs think that, at one point, the cancer spread to my spine, although currently I have no active disease.

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At work in the Shine office

A close friend of mine told me all about Shine at the very beginning of my treatment and as soon as I went to my first Shine event, I was hooked! I decided very early on that if the opportunity to work for them ever came up then I was definitely going to apply! I took on a volunteer role of jointly running the Dorset network and then, last June, I managed to make it back to the second year of my social work degree at Bournemouth University.  I was super lucky that I was able to choose my placement and so, of course, I chose Shine! However, around Christmas time that I re-evaluated the route that I was taking; trying to keep up with academic work around my treatment, while also coping with fatigue, was proving troublesome. The degree no longer felt so relevant now that I had new priorities: mainly staying alive, enjoying the time I have left (however long that might be!) and giving back to the community.  As a result, I made the hard decision to leave uni and instantly felt much better! Then in January of this year, (very serendipitously!) an opening at Shine appeared that was perfect for me: part-time hours and the opportunity to get involved with all the fab work that Shine does. I applied, and the rest, as they say, is history!

One of my first jobs was to help out Hannah (who runs Shine’s Manchester network), to staff Shine’s annual North Retreat in early March.  Shine’s retreats give attendees the opportunity to have a break from the stresses of living with cancer while also getting to know others in a similar situation.  

Ten of us settled into a spacious and comfy farmhouse that we had hired for a weekend, in a small village not far from York. Everyone was free to do as little or as much as they liked throughout the weekend. The only thing that we asked was for everyone to muck in a little bit (if they were able) with the cooking and tidying up.  If our Tesco delivery was anything to go by, we knew that we definitely weren’t going to go hungry!

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Tesco delivery!

Once everyone had found their rooms, we all settled in and got to know each other over a lovely home-cooked spag bol.  Some people had been to Shine events before and knew a couple of members of the group, but for others this was the first Shine event that they had attended.  Everyone understandably had some anxieties about spending the weekend with new people, however that soon dissipated when we realised that we were all in the same boat.  

On Saturday, most of us braved the British weather and headed off to the local market town of Beverley for a bit of an explore around the shops and market stalls, and we also grabbed a bite to eat while we were out.   Afterwards, we headed back to the house to either rest, play games, or go for a wander in the surrounding grounds. At this point we were also joined by the lovely Rachel (who used to volunteer to run the north East network)! pasted image 0 (5)

Once we had spent some time catching up, it was time to jump in some taxis and head out for a lovely dinner in the local village pub.

Sunday was again a relaxed affair. Some of us stayed at the house to play games, while others went off for a walk.  The walking route ended up being a bit longer than anticipated but everyone ended up safely back at the house in time for a home-cooked roast dinner before half of the attendees packed up and made their way home.

On the final night, those of us who were left had some drinks and played some more games….Cards Against Humanity anyone?!

The next day, we were all sad to leave because it had been such an awesome experience! Those who had come not knowing anyone now no longer feel quite so isolated (especially as we have an active WhatsApp group to stay in touch) and the general consensus from everyone was that they would definitely recommend our retreats to other Shinies!

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Pub!

On that note, the next retreat that we have planned is in Dorset from 17th to 20th May!  If you are interested in finding out more, please drop me an email to find out more (rosie@shinecancersupport.org)!

Great Escape: reunited!

2018 Escapee Caroline shares her experience of our Great Escape Reunion, a one-off event celebrating five years of weekend retreats for young people with cancer.


I was lucky enough to be able to attend the 2018 Shine Great Escape (read my fellow Escapee Rosie’s blog about it here), and I was invited to the Great Escape Reunion almost as soon as I had accepted my place on the Escape itself!

It turns out that 2018 was a year worthy of celebration: the Great Escape that I attended was the fifth weekend away for young adults with cancer that Ceinwen Giles and Emma Willis had organised since Shine began. In March, Shine organised a reunion event in London, inviting all of those who had attended a Great Escape to come along and celebrate the anniversary with them.

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Some of the 2018 Great Escape attendees reunited!

The afternoon began with tea, cake, and conversation, which gave us time to chat with our fellow Escapees and meet those who had attended in previous years. While it was a great opportunity for many to catch up, for the 2018 attendees it was also a chance to get to know each other better. Although we all feel a strong bond with our ‘tribe’ as a result of the Escape, there are still so many things that we want to learn!

Once we’d warmed up and helped ourselves to a piece of flapjack or four, the Reunion continued in true Escape style – with Sharpies, crafts, and collages. Although some Escapees remain defiantly unartistic, everyone took part in creating collages to show how the experience had affected their lives. It was amazing to see how much one weekend away could change our perceptions about cancer and our attitudes towards living with the disease.

After the activities came a potted history of the Shine and the Escape from Ceinwen and Emma, including stories about how they’d manage to convince friends and friends of friends to sign up to voluntarily spend a weekend at a hotel in Bournemouth with a group of young people with cancer – hardly the most glamorous of mini-break ideas! We are all overwhelming grateful that they pulled it off, as the next portion of the afternoon showed. Representatives from each Great Escape gave short presentations about their experiences and gave us an insight into what everyone had been doing since their Escape. This part of the afternoon was emotional for many reasons. It was fantastic to see photos of weddings, exciting trips abroad, and new babies, which gave us optimism for our futures beyond cancer. However, the moving tributes to those who have sadly passed away since attending their Escape reminded us all about what it is that brings us together. After the presentations, we raised a glass not only to Ceinwen, Emma, and the volunteers, but also to the wonderful Escapees who are no longer with us.

And as for the 2018 Escapees? Although we weren’t convinced that we would have much to report after only a few weeks apart, we had managed to achieve a surprising amount: a few new jobs, several dates, a couple of people returning to work, and some meet-ups already in the calendar for later in the year. And then, of course, the few thousand (!) WhatsApp messages we had exchanged with each other since leaving Bournemouth. It seems that a Shine Great Escape isn’t a Shine Great Escape without a very active WhatsApp or Facebook group!

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Fond memories of the Escape…

The reunion came to a close with a group discussion about the future of Shine, and how we could ensure that more young people are able to benefit from everything the charity has to offer, then a delicious buffet.

 

I’ll leave you with a few comments about the day from my fellow 2018 Escapees. Thank you again for everything Shine, and all the volunteers who have contributed to the Great Escape!

‘It was great to chat to previous attendees and see that they are still benefiting from the Escape and have gone on to make good progress. Also, it was nice to see that they are still good friends with each other years later. The Escape has a long-lasting impact and doesn’t just fizzle out after leaving the bubble of The Grove.’

‘I get really tearful thinking about our Escape and the Reunion. I feel like I belong with you guys, where I don’t belong anywhere else.’

‘[Our group photo from the Reunion is] my work screensaver!! I look really happy, which makes me smile, and when I have a tough day it reminds me that we’re in this together.’

What is a ‘Great Escape’? To learn more about the Shine Great Escape and how you could apply to take part, check out our website here

Lost and found: Friendship after cancer

Life isn’t easy if you’re a young adult with cancer.  So many things – work, family, energy levels and that sense of invincibility – change all at once. One thing that most of us would like to think is that our friends (especially the close ones) will stand by and step up when they’re needed.

But what if you’ve got cancer and a friend ghosts you? In our latest blog, one of our Shine members, Catherine, shares a letter she wrote to a someone who was a close friend before cancer, but who disappeared once her diagnosis was confirmed. Take a read, share, and do let us know what you think.


Dear person who was my friend before cancer,

We were so close. Together we drank tea and wine, exercised, and chewed the cud over life, the universe and everything. We knew each other’s secrets. We cried together. So naturally you were one of the first people I told about my diagnosis seven months ago.

Since then, you’ve pretty much disappeared. Daily messaging has morphed silently into monthly texts, and the message is always prefaced with “I’m sorry I haven’t been in touch, I’ve been so busy….”. You might ask how I am, you might not. Occasionally you’ve suggested you might have time next month – but you never follow up and actually book something in. On the few occasions I’ve asked directly for help, you’ve been too busy.

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Catherine with her two children

You once said to me “I know I haven’t been around much, but this is a long road, and when your help has tailed off, I’ll be there”. For months I believed this. I imagined you were waiting until you had time to do something ‘big’, something equal to the size of the heap of shite I am going through at the moment. I know you’re a perfectionist and I thought maybe you were just holding on until you found the time to deliver the perfect care package. But here I am, almost at the end of chemo, and I’m still waiting.

Other people have stepped up incredibly. People I hardly know have brought us food, taken the kids out, sent messages, diarised my chemo dates so they always remember to send a note. These are people with jobs and/or one, two or three kids, they are chief executives, teachers, full-time mums, opera singers…. busy people…. but somehow they have found time. My overwhelming feeling is one of gratitude and humility. But still, there’s you.

Actually, I don’t need you to have done any specific thing. I’ve had so much support it’s been amazing ,and most gaps have been filled. During the low moments of chemo, when I’ve thought about telling you how I feel, I imagine you asking what you should have done, and the things that pop into my mind sound so petty – why didn’t you just pop round for a cup of tea? Ask me if I needed anything when you went shopping? Waited for me on the school run so we could walk together? But it isn’t the absence of any of these things in particular. It’s the absence of all of them. It’s that I thought that you cared, that you would be there, that you had my back, and it makes me so sad that you don’t.

I’ve tried so hard to understand why; many people have suggested that perhaps my diagnosis is just too scary for you to deal with. But I know you and you don’t shy away from tough situations; if anything you seek them out. Now I’ve given up trying to work it out. It doesn’t matter. I won’t be able to trust you again, and I don’t blame cancer for that. This dumb disease may have created the situation but you chose how to respond to it. You chose to let your addiction to being busy dictate your priorities and to leave me at the bottom of the list when I needed you most. These days I struggle to even read your Facebook updates – it’s an important part of your life and you use it a lot – because it feels like out of the half hour you choose to spend on there each day, you could have taken 30 seconds out to drop me a text.

Other people, those who have rallied round, will be new friends and I rejoice in their love and support. But I’m still sad and angry that you chose to leave me. I hope if I’ve learned one thing from having cancer, it will be how not to make the same mistake.

Catherine

Catherine says she “rants a lot on Facebook to my poor captive audience but this is my first blog!” (we thank her for sharing it!).  Catherine is a secondary school teacher who was diagnosed with stage 3 bowel cancer. She has two children. 

If you’d like to chat to other young adults with cancer, why not join a Shine Network meet up, or our private Facebook group? For more info on Shine, visit our website

Supporting the supporters of young adults with cancer – our first Shine Plus Ones workshop

Back in March, Shine held its first Shine Plus Ones workshop (we meant to publish this blog sooner – but we’ve been busy!). It was a great day and we were really happy to put some faces to the names we’ve come to know via email and social media over the last Plus Ones 5couple of years!  In our latest blog, Salma, one of the participants, explains how the day went down. We’re really keen to expand our Plus Ones group so if you’d like to get involved, drop us an email at plusones@shinecancersupport.org, or join our Shine Plus Ones Facebook group. The Plus Ones have also been meeting up for drinks in London and the more the merrier so please do get in touch!

From it’s 18th Century origins, the beautiful Somerset House by Waterloo Bridge has been a centre for debate and discussion.  How fitting then that a group of strangers should meet here to talk of something that is rarely given the platform it deserves.
Back in March, Shine held its first Shine Plus Ones workshop.  We are the other half of Shine – or in better terms the other halves.
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The wonderful Shine Cancer Support has helped and continues to support thousands of young people with cancer through it’s meetings, retreats, social events, blogs, Facebook pages, Twitter feeds – and much much more.  But behind each of these people is someone who keeps it all together, day in day out, the spouse, the partner, the sibling, the parents……We are the Plus Ones and we sometimes need help too.
Public transport did it’s best to delay and reroute us but we are not a bunch to give up lightly and eventually all 22 participants managed to make it to Central London for the workshop.
Tirelessly organised and led by Ceinwen, Emma and psychologist Jason, the day began gently.  We’d never met each other before and none of us, we discovered, are that good at talking about this stuff.

We all provide care and support for our loved ones but how do you stand next to someone with cancer and say “Hold on – what about me?”.   You just can’t do it – unless that is, you are in a room full of people who feel exactly the same way.  And this is the genius of the Shine Plus Ones group: we all get it.  There is no judgment here, you’re allowed to say that you are angry with the person you are caring for, you are allowed to say you feel depressed or that you feel you’re being treated unfairly.  These little things are actually huge.

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Some of the ways our Plus Ones deal with stress

The day was cleverly arranged to get us thinking and talking.  It was invaluable to be able to give and receive advice to and from each other.  Jason is the one though who bound the day together; his personal and professional experience really cleared the haze for most of us.  As a psychologist, he really helped us to separate what are thoughts and what are realities, and he gave us tools to deal with our stresses and anxieties and taught us to be kind to ourselves. He made it ok to have a bad day.
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The workshop gang went for drinks afterwards. They’re now meeting up regularly.

At the end of it, we had a network, an email list and a few phone numbers.  Some of us have met up already since that day – a noisy table in a crowded bar where we blended in with all the other noisy tables of people laughing and drinking.  We don’t need to talk about cancer, we don’t need to cry or shout or talk deeply about anything – but the point is that we can if we want to, and we all know it.  There is another meet up planned and there will be many more.  And hopefully our group of friends will grow over time – not because it’s a nice club to be a part of, but because out of all this chaos and heartache it’s a huge comfort to know you’re not alone.

To find out more about Shine Plus Ones, please email us on plusones@shinecancersupport.org, or request to join our private Facebook group. This workshop was made possible through the support of our fabulous friends at Travel Insurance Facilities

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.