Sometimes Blogging Makes A Difference

Suddenly, as never before, my blogging is making a difference.

I've been interested in blogging for a few years now, and posted up lots of bits and pieces. I couldn't say that I've been a serious blogger however. I haven't posted often enough or on consistent topics enough to build a big following.

Up to now I've used my blog to share ideas and news as a bit of a dilettante. I've never seen it as a way of creating change. This assumption has been completely knocked sideways however with the reaction to my two most recent blogposts: Christmas in the Hospice and Atul Gawande on End Of Life. Suddenly blogging for me has surged into life. It's become something that is leading real people to take real action, in line with the hopeful title of my blog!

In those two posts the topics of my writing felt a little unsafe. It felt risky to write about the prospect of my own death, how I intend to prepare for it. How I intend to live as well for as long as possible with the people I love before and until my death happens.

I decided to be as open, honest and simple in my writing as I dared. I think people who read my blog appreciated this approach. I feel that this led to some major results:

First of all I noticed that the numbers of people reading the blogposts was unprecedented, people had started getting in touch, and sharing the posts on facebook and twitter. The stats for hits on my blogger account spiked dramatically. It's hard to express how the adrenaline can buzz at the sight of few dry numbers when you know these means hundreds of people are reading and sharing your writing!

I've since been privileged to be contacted by people living with cancer and their relatives who have got in touch to compare notes. I know from my own experience that there's nothing like making a connection with someone in a similar situation to make you feel less alone. I've had real inspiration from Ben Ashworth whose approach to his bowel cancer is no less than heroic, and by amazing coincidence lives just round the corner from me. I also appreciated the support I got from Vine House and from the Preston Gentle Approach to Cancer Group.

 I was also contacted within hours by the public relations person from St Catherine's hospice who has shared the blogpost on St Catherine's own website, which makes me feel truly honoured. We've been talking about how to share some of the messages in my post more widely: I'd like people to understand that hospices help not just in the last days of a person's life, but help people in the way they were helping me, such as helping people find ways to manage their pain. (I also got loads of other kinds of support while I was there, including some handy advice about benefits), more than 50 percent of people using the hospice's support are for similar reasons to mine.

I'm also interested in understanding what makes the best human support 'person centred'. I think many people at St Catherines showed real person centredness in how they worked with me and other patients: they showed their own humanity and recognised ours too in hundreds of little ways. My previous job as a person centred planning coordinator was about discovering what those hundreds of little ways are and helping more people be able to use them in care settings, so I feel really passionate about this.

 We're putting together a press release with more information about my visit to St Catherine's, and my whole cancer story to see whether this can help improve people's understanding of what hospices and palliative care are for and get across some of the other important messages about achieving the best kinds of human caring, which we hope will feature soon in the local press.

I was also delighted that local microblogger 'Blog Preston' was interested enough to share my post on that blog too!

I'm also delighted by the response from Helen Sanderson towards these posts. Helen is one of those unusual people who is incredibly skilled at taking ideas and making them into something real, that makes a real difference to real people. She has a genius for getting to the crux of what matters, of summarising and simplifying so that the tools and approaches she shares feel easy and natural for many people to use. The 'One Page Profile' is a brilliant example of this talent.

Helen also has a talent for bringing together wonderful creative passionate people with deep values and commitment. This means I'm absolutely blown away to see that my blog is part of what has inspired her to start working on a tool to gather together people's end of life wishes on one page. Already within a couple of days since I posted at least one hospice and several experts on end of life care have stepped forward via twitter to indicate that they want to be part of trialling such a tool and making it work: A simple tool that helps people facing the end of life gather together what really matters to them and ensures that this becomes part of their support.

Wouldn't it be wonderful if a tool like this becomes something that really helps many people express and share their end of life wishes, and then truly live well and die well?

I'm trying to grasp exactly why these two blogposts have precipitated such action and potential change. Partly it is because they are timely, on topics where people are already doing good thinking and have ideas they want to develop. I think however it is also because I am now delving into the well of my own lived experience. I'm writing about difficult times and difficult thoughts and trying not to shrink from expressing myself clearly and honestly, even if that's a little bit scary.

I intend to continue blogging in this vein, and I'll certainly try to do my part in helping St Catherine's,  Helen Sanderson and others with their work around End Of Life. If my prognosis after my last scan is correct, then I would like the experience of the last months of my own life to be genuinely useful to other people.

I wonder whether I can do this by writing not as an expert, but as a human being.

Ostomy Advice and Resources Blogs

Since getting my ostomy, I've been interested in the resources available online for ostomates (people with ostomies).


My operation scar and ostomy bag

My ostomy kit
 

An ostomy is simply a surgical diversion of the bowel, so that your poo comes out of a hole in your stomach rather than out of your bottom. I tell people that my bum is now there purely to bring aesthetic pleasure to the world, as while I have my ostomy, it has no other practical use.

 People with ostomies quickly build up a kit, a set of bags, wipes, sprays, pastes, scissors and other bits and pieces. I thought it would be useful to have an online kit of useful websites.

Particularly useful I think, are people's own blogs, where they share their experiences of living with an ostomy, and the condition that led to them needing one. Lots of bloggers have Crohns or Colitis, others have had bowel cancer, others have urostomies (some people have two bags). Every individual's experience is different, but what unites us all is our stomas and the ways we learn to cope with them.

One that impressed me today was by Jessica Weatherby called "Guts and Glory". I particularly liked this post on Bags Tips and Tricks where she shares expertise that only someone who lives with a bag everyday could gather. Jessica's story featured in the Daily Mail.

The Adventures of the Stoma Bag Lady is another good blog. I love this post "I Cant Fart" which lists 5 things people might not know about ostomies.

Colitis and ME is another great blog - this is by Victoria Marie, a key figure behind the 'Get Your Belly Out' campaign which encourages people to overcome some of the stigma associated with the stoma, by sharing pictures. Loads of people have done it - the GYBO facebook page is here, and people are using it to seek and give each other support and advice with all kinds of life issues. Another handy facebook resource is 'My Bags For Life', another ostomate fb community full of positivity and helping. I've had good support and advice from both pages. The Colostomy Association have a private facebook group which currently has 2739 members!

The Great Bowel Movement is a blog that aims to keep people talking about poop:

"We see our community fighting hard for this, doing their part in social media, through blogging, and through starting conversations, to make IBD and ostomies household names of topics of conversation. We seek opportunities to share our stories and bring all the aspects of these diseases into light, to tell everyone that we can about IBD.
But sometimes these awareness efforts have a sneaky side benefit, and that’s to help ourselves. Often when we present the question “What’s one thing you would tell to someone newly diagnosed?” one of the most common responses is, “You’re not alone.” You are not alone. You aren’t being singled out, you’re not the first one to go through this, and you’ve got a huge community of others that understand and want to lend support. And the value in putting our stories out there, not just for people unfamiliar, but for people intimately familiar, is priceless"

This story about Mark's Day on the Beach is worth a read:

"My family and I have always enjoyed the beach, and our goal this past summer was to spend time on one, soaking up the sun and swimming in the ocean. I had a little challenge, though: I’m a one-year colon cancer survivor with a permanent colostomy and a small hernia alongside my stomach. My stomach bulge is bigger than the average person’s, and that’s something that can’t be hidden on a beach"

Pretty Gutless posted this great guide on how she changes her ostomy bag. It's on tumblr, which made it easy to illustrate with loads of photos, stage by stage, which makes it really easy to follow.

I don't think any list of Ostomy blogs would be complete (not that this list is complete by any means!) without Stolen Colon, this collects together lots of different people's stories. There's some great advice here on what to do when your bag gets filled with gas.

A great Youtube Channel by an Ostomate is Laura's blog Ostomystory. Here's an excellent account of how she changes her stoma bag, it's had over 150,000 views!
 

There are plenty of myths and fears around ostomies and Blood Poop and Tears does her best to clear up 13 of them. Here's myth number 10:

"Myth #10 – I don’t know anyone with an ostomy
We are sneaky little MFers. Trust me if we don’t want you to know, you won’t. I once had a friend ask me ” Are you wearing your bag?”, (as if I had a choice). Ostomies are easily hid and concealed. Before I had an ostomy I was always shocked when I met someone who had an one because they didn’t have a sign on their head or a swarm of flys around their poop stench. We look just like you do."

One of the really best blogs is Vegan Ostomy. Being vegetarian or vegan with an ostomy has an extra set of challenges all of it's own, but this blog is rich in advice and resources that will be useful to everyone, including meat eaters. Nearly all the blogs I'm coming across are by women, so I was really pleased to see this post with a clothing guide for men.

I've given a bit of advice of my own. Here I talk about challenging stigma around stomas and cancer, and here I give some of my own tips for getting through chemotherapy.

If you want to do more than connect online, there are support groups out there. Eakin Cohesive has made a list of many groups around Europe and the Anglophone countries. They've also put up a pretty good list of some of the various online resources for ostomates.

I know that I've really only scratched the surface of some of the really great blogs and accounts that are out there, many of the blogs I've linked to link on to great lists of bloggers. If you know of a blog or website I've overlooked here (or write one yourself), I'd love you to share a link to it in the comments below, you'll be helping me by making my blog more comprehensive, and giving me and anyone who reads this post more of the information we need, as well as promoting your own blog!

I'm also hoping at some point to put up a list of great twitter accounts that cover ostomies (for example @uncoverostomy who also blogs here http://uncoverostomy.org/blog/  and @colitisninja , many of the people I've already mentioned are also on twitter - I'm always looking for new people to follow, so if you want to share your twitter handle, you can post that below too!