My own experience of writing about breast cancer...
I immediately started writing about my own experience of being diagnosed with breast cancer. I thought it would be a good way to tell everyone the truth about what was going on, without needing to repeat the same information over and over again. But at first I didn't have the guts to actually tell everyone I was writing a blog! I would tweet the links to my blog posts knowing that only a handful of people I knew in "real life" followed me on Twitter, and that the chances were they wouldn't spot my tweets anyway. But they were spotted... and shared. And so I came right out of the blogging closet and shared the link on Facebook - ie with almost everyone who has ever known me or sort of known me at any time in my life.
I was terrified and embarrassed. I've never written a blog before and thought it was probably rubbish. And I'd already written quite a personal post about fear which talked about people scrutinising and poking at my wonky nipple, sweating in the hospital waiting area, anticipating hair falling out and fingernails falling off.... it was embarrassing. Would people laugh? Judge me? Or would everyone just pretend they hadn't seen it?
I couldn't believe the response. I was inundated with messages and phone calls supporting me, and thanking me for sharing what I was going through. It gave me the confidence to keep writing and keep sharing. I didn't know how to write other than with complete honesty - embarrassing stuff and all. Often when posting and sharing a link to a new entry, I'd hold my breath and start to worry. Would this be the one that got tumbleweed? Would this be the one that prompted people to start avoiding me, or give me strange looks? But each time it was ok. (Better than ok!) So I've kept writing, kept sharing. And these are (to me) the two most important things I found:
- Writing for an audience has helped me to unpick and understand my own experiences and feelings about things. If you write knowing other people are going to read it, it makes you try and find the best words, the right words, to explain and describe things as accurately as possible. I've found that it is writing that helps me fully process and understand what is going on in my life right now.
- Writing things down clears space in my head. There is SO MUCH that happens when you're diagnosed with breast cancer. Your entire world is turned upside down. It affects EVERYTHING. It is complicated and confusing. There's a lot to learn. There's a lot to deal with. I couldn't handle all that swimming around in my head. I found that once I wrote about something, I could move on more easily to the next thing. Deal with that. Write about it. Move on. Deal with the next thing. Write about it. Move on. And that's how I've got through breast cancer diagnosis and treatment to date. One thing at a time.
I also asked other women who blog about breast cancer to explain why they write...
Here are some of the answers:
I write to raise awareness, to share what I'm going through in order to help others and so I can look back and remember what happened. I didn't want it to be specifically about being black but at the same time, I wanted to show that breast cancer wasn't a "white" disease, breast cancer doesn't discriminate; it doesn't matter what colour, creed, sexuality, religion, political allegiance or country you are from. (Miranda - writes Black Chick Tit Cancer)
I wrote mine mainly as an update to friends, colleagues and family who I don't see as when I first got diagnosed and sent an email to people to let them know, I spent a whole day replying so I figured it would save me time to ask people to read my blog. I find it easier to write the truth about how I feel than I do saying it out loud.
(Daniele - writes Nelly's Notes)
I write mine for a few reasons.
1) to help me process what's been going on -when I write to explain to others I absorb the information better (and personally the more I repeat what's happening, the more it becomes reality and easier to accept).
2) to update friends and family en masse (rather than repeating the same news by email, text, phone etc).
3) to inform people about what's involved with the treatment of breast cancer (particularly my diagnosis of triple negative + BRCA1).
4) to act as an outlet for emotions I may not want to share one-to-one. Sometimes broadcasting can be easier than a conversation because it's unidirectional... I'm not looking for a solution or comfort per se, I just want to get thoughts out of my head.
(Tara - writes T vs The Big C, My Breast Cancer Journey)
To get it all off my mind.
1. It helps me deal with what I'm going through. It's great therapy.
2. It means that people get the answers to the awkward questions they want to ask but don't know how to. It demystifies things for them. It saves me answering the same questions over and over again.
3. I hope it might help others in the same situation to realise that they aren't alone and someone else gets it.
4. If I don't make it, the blog means my kids will be able to learn a bit about me in my own voice.
(Rosie - wrote Fighting Genghis and Fighting Genghis at The Huffington Post)
I write because it helps to help. I can express how I feel and I've discovered my words help others to understand their own emotions and journey better. I don't plan or think about what to write or analyse or even correct my writing I just let the words out. They tend to come first thing in the morning or when I'm a passenger in the car and I just type. It's cathartic like an emotional trip to the tip and positive feedback is like getting paid for selling old junk at a car boot sale. Addictive!
(One of the women who has written for this blog)
1. I was going to start when I was first diagnosed, despite being really terrified there was loads of funny stuff happening that made me really laugh and I wanted to share that with people, that being diagnosed with cancer wasn't as bad as you might think, you still manage to see the humour in the worst situation and it's ok to feel like that.
2. I want my friends/family/colleagues to know exactly what I've been through. Some of my best friends live in different cities/countries so I wanted to put the whole thing down in writing to fill in any gaps.
3. There are so many questions people want to know about your diagnosis/treatment but might be scared to ask in case they upset you. I try to answer it all in my blog. Somehow it's easier to publish a blog than chat face to face about the difficult stuff.
4. It's good when you meet new people who want to know more about your experience, you can direct them to the blog instead of chatting cancer for hours.
5. I hope it helps some other people that are diagnosed as I wanted to get across that none of this was as difficult as I expected.
6. I don't think there's enough representation of young, single, childless women in the breast cancer community as a whole and I wanted to put my story out there.
(Kate - writes Random Retrospective Posts About Having Cancer)
I guess the main reason I write is because I love it. It has to be the single best thing that has come from all of this - in that I have I have re- discovered something that I loved to do before getting ill or even becoming a mum.
The most important part of writing the blog, for me, is the fact that it provides an outlet.
Upon being diagnosed with breast cancer there are a thousand thoughts and questions flying around in your head, and sometimes it all becomes 'too much'. I have found that by writing things down and expressing my fears and emotions it actually works as a kind of therapy.
Initially, I would write down the things that had been worrying me and stopping me from sleeping at night - because I knew that even though some of those things were quite negative, they were also an important part of what I was going through and I didn't want to forget them.
I have never been keen on joining groups or been very good at talking to others really - but the blog has helped me connect to others in my own way and in my own time.
As a mother, it has also helped me to write down thoughts and feelings I have had about how breast cancer has affected our family. I have also tried to focus on memories and things that my children may want to perhaps read one day.
I have found that family and friends have been very moved by some of the pieces I have written, and it has helped them understand what I have been going through. At the same time though, there have been total strangers who have sent me messages asking questions about treatment or just saying that they have experienced similar feelings, which has been nice.
In a way, I have found writing the blog hard, in that it is very 'public' and almost like you are letting others read your diary - your most prized possession. Nevertheless, I think it is important, so important, to share my experience and to raise awareness of breast cancer as a young mum and perhaps somehow help someone else out there going through the same thing.
(Detrice - writes www.detricematthews.wordpress.com)
But don't just take it from us!...
A study has found that women diagnosed with breast cancer who wrote online about their experiences with cancer had fewer symptoms of depression and more positive moods. You can read a short article on this here.