As those of you who frequent here occasionally will know I have been blogging about my dad’s journey with bile duct cancer, cholangiocarcinoma, for a while now. My last post focused on talking about cancer and it wasn’t a particularly considered post from my perspective, it was a bit of a brain dump. I’ve been considering it since and have discussed it with one or two people. When I go back and re-read it, as I just have, it is a little raw, probably a bit idealised, tiny bit self-indulgent, and worse of all at risk of creating an elephant in the room that didn’t previously exist.
My reasons for blogging about dad’s cancer are threefold a) to raise awareness of bile duct cancer and to be something for others to find if they or a family member are facing a diagnosis of cholangiocarcinoma, 2) a little bit of selfish therapeutic ranting, and 3) to build discussion. I have been blown away with the support I’ve received since blogging about this stuff, a particular thanks go to @mac1610 @hadleybeeman @scotbaston @amcunningham @kmachin @rufflemuffin @monstertalk @kateebbutt @patientopinion @socialtechno @tomarse99 @dalekdoctor @skingers all of whom have commented on my past two posts and of course those people who haven’t joined the online discussion but put up with me in real life and I know I can rely on when I need to like @katiekatetweets @rich_w @juniorc0 @niccombe and @fergusbisset.
I think it’s fair to say that I’ve not really cracked the discussion bit. I know there are one or two people reading and lurking who have yet to comment or open up the discussion – not least because they have a different perspective on this stuff. I would really *really* love to hear from them too at some stage – on here – so we can actually start a conversation that others can join.
Last time I was blogging about how to discuss or talk about cancer, especially with regards to bad news. I was a little concerned that this post actually created an elephant* in the room for some people – where previously there hadn’t been one! The overall message I was hoping to share is that there is no right or wrong way to approach it – just do what you think is right. I definitely don’t want anyone treating me differently because of dad’s situation – and yet by mentioning it I risk creating a situation where people have to approach things differently. This is a bit of a dilemma. Consequently I’ve not been sure about whether to continue blogging – just because there is so much going on at the moment and I’ve not wanted to turn this into something that is too self-indulgent; I’ve decided I’ll just blog when I can with a big fat disclaimer that what you get is raw, not really too considered and I’d love it if people would question and discuss things here.
As an update, last week we found out that Dad now has multiple tumours and further surgery is not an option. Him and mum have had a final meeting with Mr Stell, his surgeon at Derriford, he’s now waiting on an oncology appointment from Torbay to hear what options are for managing it so I guess we’re all still in a state of limbo. On the plus side, we do have a few certainties – we know what he’s facing, we know that he won’t get better, we know that we need to make the most of time now – yes I know, we should all make the most of every day but how many of us do? So it leaves me remembering it is all about perspective. I do genuinely consider us to be lucky in many respects and I know that whatever the future holds we’re lucky to have had three additional years with dad which we wouldn’t have had without the fantastic care and support he’s had throughout his treatment.
*Disclaimer: Using this phrase may well have been a deliberate ploy to ensure I could include a picture of elephants in this post!