Wednesday, March 7, 2007

On Blogging Cancer - a reply to Lauren and Rob

Lauren and Rob commented on my first entry on this subject and it has given me food for thought. They have actually emailed me with further comments and I've linked right to their website, Memory Pebble, which is a grand example of what a "cancer" blog should be (what a horrible ugly word is "blog"). First of all, I must say thank you both for your comments, and your website/blog is wise, witty, entertaining and informative. I must also thank Lucia and Barakta for their comments.

I've given a brief summary as to why I started this blog on our profile. Some are very personal and some are to give something back.

The personal can equate, I am sure, with the what I will euphemistically now call, and forgive me, the “Bunny Rabbits and Angels” posts. It is a form of personal catharsis, and, I guess, keeping family and friends informed. It's not meant for wider-world consumption. Except it is out there on the web for the wider-world to consume. It is part of our blog as well (and as well as occupying me and keeping me out of mischief during the long lonely times I spend without my partner and children – see the entries on last Christmas for examples). However, I do wonder whether this is the right format. I have friends who put out a round-robin newsletter as an email attachment to keep their family and friends informed of their news. There are emails themselves.

A sub-category of the "Bunnie Rabbits and Angels" post are the In Memoriam posts ... I really don't know what to say! I am sorry. But for the sake of your loved one, please give something back. Lucia here has just posted about the death of Josie Madeline Grove and her parents' wish to commemorate her, her courage and her smiles by setting up a charitable foundation to support leukemia research, people with leukaemia and their carers. Josie didn't want "Bunny Rabbits and Angels".

I admire Sophie's Diary (link on right) as it's written by a young girl, now of an age to write about her experiences on the web – without “Bunny Rabbits and Angels”! I admit an eight-year old does not have the enquiring, intellectual and literary skills of an adult – but I've used the term “activist” and she is one! She relates her day-to-day life as an eight-year old who just happens to have leukaemia.

Rob – you expressed that we don't know what sufferers and carers are going through. Yes, every case is different. Us carers don't really know what our children are going through. They cannot express themselves like adults. However, perhaps we can extrapolate a bit from what adult sufferers go through. But, as I've said before, at least our 3-year old forgets from one day to the next and has no vision of mortality. As carers it is shit, that's what is common. In our own limited experience so far, every carer is saying to every other carer “your experience is far worse than mine”!

The other sides: I want to give something back and I want to be informed. In the UK our treatment is free and unconditional – fuckin' marvellous! Praise to the system of the NHS! I am grateful. And I feel I want to give something back! I'm trying to pay back through this blog, Lucia through her blog, her work with YOBS and the Teenage Cancer Trust. Patty (in the U.S.) by establishing the Paediatric Oncology Resource Center (links right). Josie's parents ...

Information: can you get enough of it? For me and Patty, no. For other people with cancer and carers, they don't necessarily want as much. But to some extent or another, we all become “lay experts”. The depth of information available varies – most is from charity sites. But the blogs of people with cancer and carers can be important sources of information. We do have a perspective that is different from the medics.

The charities have a role in informing the wide world as well – otherwise they wouldn't be getting the donations. But their reach and our own need widening. And the world needs to see us not as “victims” but as humans.

Which brings me to a final point – entertainment. Each of us is human. For each of us our interests are diverse, for each of us, there IS more to our lives than cancer. If we can entertain the wider world, then they will come back to our blogs and perhaps learn something about cancer along the way. Additionally, the entertainment can provide ourselves with some relief along the way. For that reason I have linked to Auspicious Dragon and the recently departed Cancergiggles on the right.

Lastly Cancer Activism – it's a term I am coining because of our own experiences, because of those of Patty, Lucia, Auspicious Dragon, Cancergiggles, Sophie, Josie, yourselves etc. I haven't thought it through yet ...

P.S. Rob and Lauren - on reading Memory Pebble you made me cry with the realisation of how much I am missing the experience of watching Kezia growing up - the laughter and tears, playing and talking ...


Anonymous said...

Angus, your narrative sections are as important as the rest (even if you do decline to use bunnies and angels). Although, obviously, your lives have been turned upside down by Kezia's illness, you are still people, a family, who have lives separately and together. Kezia does little-girl things, Jaime plays football and goes to school, etc. etc. It's as important for your readers to know all this as to know all the technical/medical stuff, especially in the light of your developing stand on Cancer Activism - if you don't want to be seen as simply "victims", "sufferers", "carers" etc., but as PEOPLE who have the right to be treated in a humane way and who need help to lead the full life to which you all have a right, then you need to represent the full life. Sentiment is not sentimentalism, so keep at it.

Angus said...

Little-girl things! You make me shudder! But I lost the fight against girly pink a long long time ago (probably when she was about one day old!).

You are, of course, right about the narrative. It gets a bit thin on the ground when I'm not with them. But hopefully visiting in April and you'll get a load of it and photos to boot.

Lucia promises to blog on the term "survivor" tomorrow - and check out her report and photos of the Teenage Cancer Trust conference "Find your sense of tumour"! 700 cancer fighters in one room - Wow!