Friday, February 16, 2007

On Blogging Cancer

There are various kinds of leukaemia and cancer blogs and websites. Obviously we all have our personal preferences to what we read and my cup of tea won't be the same as other leukaemia/cancer sufferers/carers (or anyone else for that matter).


First, on blogs in general – in normal circumstances I haven't got the time to go through all your archives to read the story from the beginning. And you haven't got the time to go through mine – so you're a new visitor and you will say “that's interesting“ to the current post and “can't be bothered” to everything else. We are selective in our reading.


Additionally, too long a list of links is a waste of time (to my thinking, I know John, Alex, Kathryn linked on right will disagree!) – I haven't got the time to visit every site you've listed. I'm much more likely to visit a link in a short list because I know you really go back to these sites again and again so they must be interesting. Equally there are lots of sites about cancer but since alot of the information out there is the same, there's not much point in linking to it. I'm keeping my link list short.


I'm also beginning to feel that perhaps the chronological format is somewhat limiting. For example, the posts I've written on drugs are educational to both myself and I hope other carers/sufferers – gradually they are going to get hidden away in archives. Yes, I know there is a labels list, but you'll have to scroll down and click to get to the post. A Drugs section would perhaps be more useful – for that reason I'm toying with the idea of a “proper” site (such as Patty Feist's Pediatric Oncology Resource Center or Auspicious Dragon) of which the blog is just a part.


Cancer sites and blogs come in a variety of overlapping flavours. But some common categories do emerge.


Charity sites:
these come in various flavours. Some support scientific research, some are to support cancer sufferers and carers. The best are very informative (see the link to Leukaemia Research on ALL at right), alot provide only summary information on treatment, drugs etc. This is probably enough for many readers.


Scientific research:
most of this is hidden away on overall medical research sites such as Biomed Central. There are some research groups which have sites, but these are generally networking sites for practitioners and researchers with news of meetings, projects etc rather than the actual results of research. What I'll term layman's science i.e. beyond summary information but not as turgid and specialist as scientific papers, is very hard to come by – information on the Pediatric Oncology Resource Center (link on right) is a notable exception.


Sufferers and carers:
in general the best are by adult sufferers and the worst are by adult carers of young children.


The very best of the former do not limit themselves to their illness. They have diverse interests and write about these as well as their illness. They are often witty.They are often activists in some way or another (though they may not define themselves as such).They are not self-pitying and do not want your sympathy. They would probably be blogging even if they weren't ill.


Blogs by adult carers of young (alive and deceased) children are, I'm sorry to say, generally abysmal and certainly of little interest to the wider world. Such sites abound on the cancer webring to which this site belongs (link at bottom of page). Sure they are cathartic, sure they provide news to family and friends. But all too often, they are exercises in gushing sentimental self-pity. They are often characterised by horrible sickly sweet wallpaper, horrible gifs of bunny rabbits, angels etc and lots of links to sites of the same type. They may provide some other parents with comfort but I'm afraid they leave me cold. Worse – they make me want to vomit. I know how small children and their carers suffer, I don't need to hear about yours. Give me information and facts to help us get through this. Entertain me.


Teenage cancer sufferer blogs are a sub-category. Generally they are quite good as teenagers have the diverse interests of adults. Ok I might not know the pop-groups they are referring to but they talk about other things as well. And, of course, I'm not really their targetted audience.


There's my two ha'pence worth – like it or lump it.


I reserve the right to go off topic and talk about anything I damn well like” .


7 comments:

Lucia said...

Would the type of website you are reffering to begin in a C and end in a .org ? I feel the same about them, I just feel like saying stop trying to get pity and type something useful. I just discovered how whiny and non-descript my past blog is and I'm in the process of making it better. Also blogging led to my website, not the other way around. I found blogging too limiting too.

Anonymous said...

Angus, no-one could ever describe you as a bleeding heart! Bleedin' awkward, maybe... Go for it!

Jessica

barakta said...

I must say that is what kept me reading your blog the distinct lack of angels, fluffy clouds and cute pink/blue or just foul backgrounds.

I run a mailing list for people whose have bone anchored hearing aids (BAHA). Some parents have 'websites' which make me want to puke.

In fact there's only one sensible parent-site and that guy is an engineer who has uploaded sensible matter of fact information with pictures and descriptions of things he did to make his child's life easier. The idea being for other people to copy his solutions if they're useful.

Lauren said...

I have to wince and laugh at the same time at this post. I'm sure my husband Rob echoes your sentiments, yet he's stuck with a computer-illiterate wife who needed/wanted a way to inform family way back when. All I could manage (or so I thought) was the dreaded "begins in a c, ends in org" style. Background choices are limited, and made worse by the input of Fergus (four years old when this started). So I occasionally apologize in an entry for the ongoing presence of balloons. Sometimes I'm funny, more often mind-numbingly newsy, only rarely self-pitying. I guess I just want to say that blogging wasn't the point when I began (for christ's sake, I didn't even know the term). I'd rather have a cooler feeling format, now that I know better, but I don't have the kind of family and friends that are going to find it all over again. Thus, I leave the cooler feel and the real blogging up to Rob, and I plug along with the balloons. And despite the presence of clouds and bunnies and such atrocities, some of those other moms (as they almost universally are) have provided me with pretty real support when needed. Oh, and I think that I'd keep reading THIS blog even if you had fairy princesses cavorting on the page, because you're worth reading.

Angus said...

Lauren

First of all, thanks.

I'm glad you've found some support out there. But wading through the balloons and bunnies has been/is very depressing when you want something genuinely supportive. Lucia, with ALL, myself as a carer want real tangible support.

People like Patty Feist (link at right) really provide this.

Rob said...

Angus, I'm the husband that Lauren refers to. I have dabbled--not very vigorously--with blogging during this time of my son's ALL treatment. I haven't written for the world, or even for my friends and family. I do it mostly just to try to process what is going on. I have talked about leukemia, steroids, dead poets, pop music, random minutia. I don't presume that anyone is reading or that anyone would want to read, and I'm mostly right. Still, it has been a somewhat valuable process for me, and I can imagine that if I had a readership* I would be more likely to stay on top of the thing (but then it also might become a different kind of thing). It's an absurd thing to do, this blogging, especially when no one is listening. But I do it, sometimes, anyway.

I take the gist of your Sufferers and Carers" section to be this:

"I know how small children and their carers suffer, I don't need to hear about yours. Give me information and facts to help us get through this. Entertain me."

In fact, I don't know how small children and their carers suffer; I only know what it's like for my family. We are coping, in our way, but there are families out there experiencing different shades of the experience we are experiencing--some lighter, some darker--and it doesn't surprise me that people can learn from these other (gushing, sentimental, self-involved) stories.

At the least, we can learn about the relativity of pain, and prepare ourselves for roads we haven't had to travel yet, but may.

"Information and Facts" are hugely important too, of course, and I applaud your "Open Source" initiatives. But facts bring one kind of understanding, while narrative (one's own and others') brings quite another. They are both pretty important.

That said, I cannot bear to immerse myself in this stuff the way that Lauren does. And it's not the dancing bunnies or the angels that I have a problem with, so much. But twenty minutes of cancer narrative leaves me exhausted and anxious, whereas I think it strengthens Lauren somehow.

And that's my gist: these things may be "generally abysmal and certainly of little interest to the wider world," but that's not really the test. It's a narrow world that they (and we) are living in, one that (I've found) the wider world doesn't really understand. If, for all their sentimentality and aesthetic malfeasance, these blogs "feed" some of the families that are dealing with childhood disease (and they seem to), it's enough.

...Please excuse the over-long comment.

* Despite my "lack of readership," I find I recoil at the idea of including a link here to my blog.

Angus said...

Rob - haven't much time to respond right now. But yes points taken. Maybe I was a little heartless. Would love to read your writing as well.

Angus