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.

me

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.

How I told my five-year old I had cancer…

In this post, Shine member Steph tells us how she talked to her son about her diagnosis. What are your experiences of talking to young children about cancer? Please share this post and add a comment if you like.


When I was diagnosed with cancer in July 2016, my first thoughts were ‘I just need to get through this for him’ – ‘him’ being my nearly five-year old, Theo. We’d arranged a fantastic party for his fifth birthday and all I was concerned about was being there for it.

As it happened, the first part of my treatment was booked in for a week after the party. This was such a relief. The sun shined brightly that day and it couldn’t have gone better.

I knew, though, that I had to tell him about my cancer because there were going to be things he’d see, and things that would come as a surprise to him. Perhaps everything he was used to might change. Who knew at this point?

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Steph and Theo

I read a book that was written to help you tell your children about a cancer diagnosis, and I was genuinely saddened by it. It talked about the family getting angry and the diagnosis not being the child’s fault, and about parents getting cross but telling the child not to blame themselves. Then there was a picture of utter chaos: dad was in the kitchen in his pyjamas, there was a knife in the fish tank, the dog was eating the kids’ cereal and the kitchen floor was flooded. It was absolute carnage – it simply looked to me like daddy wouldn’t be able to cope. This was not at all what I wanted Theo to see or understand. The book and the tale it told just really didn’t work for me.

A different approach

I wanted something that said, ‘no matter what happens, Mummy is doing her absolute best for you, and doing everything in her power to be OK’. So I decided to write a poem. I needed it to be personal to Theo to help him understand that the future might look different for a while, and that Mummy wasn’t going to be well.

Dear Theo,

Mummy has written this for you, it’s a rhyme, 

And wants to read it to you from time to time.

For now, mummy does feel a little sick,

But a cuddle from you would do the trick.

Sometimes mummy will stay in hospital for the night,

The nurses will take good care of her, she’ll be alright.

You know you take medicine from a spoon,

Mummy has medicine too which’ll make her better soon.

The doctors are doing all they can to make her well,

Why not even wish her a get well soon spell?

Mummy is trying her absolute best,

But sometimes she needs a little rest.

You are all she thinks about day and night,

And dreams about you and her flying your kite.

As always be the loving person you’ve always been,

You’re the bravest boy mummy has ever seen.

Theo’s reaction

The first time I read it to Theo, he smiled and said ‘wow, it rhymes!’. I knew, though, that he’d heard the underlying messages. I was lucky too that when Theo was with his dad, he’d read it to him as well. Theo heard the poem over and over again, and even asked for it sometimes. I think it prepared him for the next few months and taught him that there was likely to be a fair amount of change coming.

As changes were on the horizon, I told him when they were going to happen: a stay in hospital, surgery (and therefore he’d have to be extra careful and not jump on me) and losing my hair. Theo never really asked any questions and dealt with it all very matter-of-factly – a little like me, I think.

Theo really didn’t like my wig though and wanted me to just ‘be me’ and not hide behind it. My hair is growing back now, and the other day he asked if I could shave it again as that’s what he preferred! It struck me that no matter what, children love you unconditionally – and even if I’m feeling different or unusual, to him I’m normal and I’m his mummy.

I also visited Theo’s school as I didn’t know how he would be affected by my illness and if it might come out in class. The school were fantastic: they set up an Emotional Learning Support Assistant for Theo, with whom he had a chat with once a week. It seemed that no matter what was happening, I was still his mummy, and he simply told them what was going on at that point in time. It gave me a great peace of mind to know that the staff were looking out for him when I wasn’t able to do so.

Looking back

I find my poem hard to read now as it brings back so many difficult memories. At the time, my priority was to make sure that Theo would be okay, and that I got through everything as easily as I could for him.

I’m so glad that I didn’t go in all guns blazing with that book, and that I took some time to think about what was right for us.

If you like the poem or think it would work for you, too, then feel free to read it to your children.

If you’re affected by any of the issues that Steph has discussed, you can join our private Facebook group and find peer support.

If you’re free on 19th May, join us at Shine Connect 2018, our annual conference. We’re having a session specifically for parents going through cancer who want to support their children. More information at shineconnect.co.uk.

You can also look at the list of useful organisations on our website

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

Real Life Guides – Dealing with other peoples expectations

recovery

Following the last post when I said that this came up in conversation at lunch and also following this picture on our Facebook and twitter getting a lot of agreement…we have decided to tackle this topic in our real life guide series….

What happens after cancer treatment ends? (assuming a good result) Life goes back to ‘normal’ right?  maybe not….

A lot of people tell us that the end of treatment can feel like the end of a conveyor belt – you have been so busy with treatment and appointments and focussed on getting to that last treatment, what happens when you get there? Instead of relief , happiness and ‘normal’  there is quite often abandonment, fear and anything but normal!

In Shine we call this the ‘should be era’  You should be back to normal – you should be happy – you should be….etc etc  We know what we ‘should be‘ but sometimes (quite often actually!) that is not reality.

And what happens if you don’t get good news following your treatment….what do people expect from you if you can’t say you are cured and ‘moving on’?

So we need your help….Share your experiences of what other people expected of you either during treatment or afterwards?

Have you had stupid comments, downright rudeness or have people completely ignored the fact that you are dealing with cancer?

What did you do about it? Smart comments, sulking, conversations? (or all of them!!)

By sharing your experiences, positive and negative, we hope to publish a ‘real life guide’ that shows that you are not along with these experiences…and gives you some pointers to cope well with this type of thing….

You can comment below or email emma@shinecancersupport.co.uk

Thank you!