Standing up to bile duct cancer

It’s just over six weeks since I last blogged about Dad and his journey with cholangiocarcinoma (bile duct cancer). This Friday as I watched StandUpToCancer on Channel 4 I realised that I missed blogging, sharing my experience and discussing the situation we find ourselves in as a family.

I’ve discussed my blogging with Mum and Dad recently. They have known I’ve been blogging but never read it, or really paid too much attention. However, just lately my Auntie complained about a post I wrote when my Grandad was dying, she didn’t like the photo and reckoned that my Grandad wouldn’t have approved. I thought long and hard about this, and have spent hours musing it since and still disagree, my Grandfather spent most of his life writing letters to the local paper and I think he’d have loved to have blogged if he’d been born at a different time. Anyhow, my Auntie complained to my Mum but didn’t say anything to me, which left me in a bit of a dilemma. I guess my blogging is quite selfish in a way but I also believe that I do consider whose details and situation I’m sharing.

The upshot was that I had a lengthy discussion with my parents and shared a number of posts with them. My Dad seemed quite relaxed about the whole thing, in fact I felt quite proud when I’d read him a couple posts and he said he thought it was like reading a book, I may yet compile some of the posts into a book for him if he is still around at Christmas. My Mum however was still a little reluctant, and what that’s meant is that I’ve just felt a little less comfortable about posting since then. I’ve always shared my own experience of Dad’s illness, but it’s impossible to do that without disclosing details that I’m not (right now) confident my Mum would be comfortable with. So I’ve hung fire for now, I have a few draft posts that I may publish at a later date, or I may just keep them for myself. I’ve not posted about Dad in six weeks, but to update people who have asked, in a nutshell his health has started to decline even more in that period and he has been suffering from severe fatigue. I’m delighted that he’s been in the local hospice for the last week and while not completely sure we’re hopeful they will get his symptoms under control, and with support from their community team he should make it home again yet. That’s about all I’m going to blog for now.

Anyhow, this post was mostly because I wanted to draw people’s attention to Stand Up to Cancer campaign #StandUp2C. You can get a flavour of it from the video, it was a night of fundraising hosted by Channel 4 that raised over 6 million to fund cancer research.

The underlying focus of the campaign was the odds around getting cancer (1 in 3 in a lifetime) and the need to fund more research to cure it. My Dad has bile duct cancer, cholangiocarcinoma, and it is incredibly rare. Cancer Research UK estimate about 1000 people are diagnosed with cholangiocarcinoma each year in England. I’ve not quite figured out whether having a rare cancer is a good or a bad thing; in a way you’re more interest as a medical mystery, but the downside is there is little solid evidence to base decisions on. You also don’t tend to bump into anyone who has experience of the same sorts of cancer, which is part of the reason why I blog my experience of Dad’s cancer.

Anyhow I digress, I quite like odds and numbers, I’m a little geeky like that. So this weekend I had a little play with Infogram. I used the Cancer Research data from 2009 to produce an infographic that shows UK top ten cancers and tries to show bile duct cancer in relation to others, for some reason I can’t seem to embed it, but you can view it here.

3 thoughts on “Standing up to bile duct cancer

  1. Just wanted to let you know that your posts about your dad have been helpful for me. My father also has cholangiocarcinoma. I love how honest you are and how you write about them. It helps me just knowing someone else is having similar thoughts, fears, doubts, etc. Wish you and your family luck with everything.

    1. Thanks Mel, really appreciate the comment. It never fails to amaze me that people actually read my blog, never mind find it useful, so is good to hear am not alone. I hope your Dad has a similarly good run of living with it, or even better might actually beat it! Lots of luck to you and yours too.

  2. I’ve also found your posts about your dad extremely helpful, I lost my husband to this dreadful cancer in april after only being diagnosed 7 weeks beforehand,I’ts been good to read about someone who has had a chance to fight and see his 2 new grandchildren,I hope your dad keeps going for a lot longer.My husband was only 67 and my daughters and I are heartbroken,hopefully in the future they will find a cure, in the meantime my thoughts are with you and your family.

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