Blogging cancer…to what end?

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!

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8 thoughts on “Blogging cancer…to what end?

  1. I hate the limbo bit – the time when all that happens is escalating worst case scenarios. A close family member has just been diagnosed with lung cancer-a lifelong non smoker,how ? why?.At the moment we don’t know the extent,where else is affected etc as the limbo is the wait for biopsy results and then planning what treatment – well you know the ropes. We were so convinced that LC was the least likely thing, with TB being more likely as they had worked in really deprived area where TB is prevalent.Tough thing is we know, their kids don’t and we have to brave face it as they will tell the kids when they know the treatment regime.So prognosis limbo, treatment limbo, honest conversation limbo. Funny you put the elephant picture up – a friend of mine had lung cancer in her 30’s(also a non smoker) and she loved elephants.I still have her funeral order of service with the elephants she drew decorating it.

    1. Hey Tracy – you strike a chord/nerve there with your statement about brave facing it and wanting to wait for info before telling their kids….of course I don’t know how old their kids are, but I can only assume that it must be a parental urge to protect your children from uncertainty. The reality is, as we’ve learnt as a family over the past 3yrs, there is very little (if any) certainty and you can spend a long time waiting to get it – only for life to be passing by in the interim. As you know we’ve been waiting for almost two months now to establish the latest state of play for Dad, we’re all grown up kids but my parents are still to some extent trying to protect us from it and maintain their independence (a similar but equally important point) – thing is, for me anyhow, that makes it harder. I’d recommend as much honesty and openness as possible – as soon as possible – it at all possible. Lots of possibles because it’s impossible to know how anyone should handle such news and information – can only make reflections from my own experience 😉

  2. I think in some ways, putting things down ‘on paper’ – whether it’s a blog, a journal or just a few notes here and there can help with drawing some of the myriad of thoughts together. I know it’s a very tough period and can only draw on my own experiences but I think knowing what’s going to happen isn’t always as bad as it might seem as it gives you time to savour together than sometimes when life is just happening, we can forget to do.

    1. Thanks CB, I think you’re right about getting things down/out somewhere. I find talking things through helps me, but at times it’s too draining and feels like too much crap to put at someone else’s feet – so yeh blogging definitely helps me, I just worry that it doesn’t serve any greater purpose than make me feel better – in which case perhaps I should just keep a diary and keep it to myself! I’m definitely far more comfortable knowing the outcome of it all, even though the irony of that is that we all face the same outcome and we never know when it might come! Thanks for commenting – really appreciate it.

  3. The youngest is 11, oldest 22 .I think the telling will happen once all is confirmed and the how to tackle is set out.I have to respect their way although I have always been clear with my 2 when there is something big going on as it can create more anxiety. I can see their point that once there is a schedule to slot into treatment wise, a pragmatism slots in – like when Clio started all her medical stuff at 8mths it was just OK this is what we do, this is how we have to function so we get on with it best as and just fret and do what you can change rather than waste time worrying about things you can’t – or ‘don’t try nailing jelly to a tree’

  4. Firstly, absolutely, is entirely up to them how they choose to handle the situation, total respect to that. There really is no right or wrong way, I think you do what you think is right at the time.

    From my perspective, the human need for a clear plan and boundaries is often what drives such decisions. I’ve always admired the patience and honesty with which my dad’s consultant handled our questioning – for the last three years the only certainty that ever existed was the type of cancer my dad had (admittedly a very rare one), everything else was at best scientific calculation or conjecture and at worse pot luck or guess work. The honesty with which his consultant shared that, and kept gently reminding us of that, was really important for my experience (and I think also for my dad and mum). Definitely no point wasting time trying to nail jelly to trees but I think the danger is that ppl get caught up in the treatment process, without processing the underlying situation, if you just hold out for that certainty – that’s certainly our family experience anyway.

    Hope they get the answers they need soon and that they are able to support each other through whatever the future holds for them.

  5. One person’s story of sharing…. and not. When my beloved sister in law was diagnosed with a second primary cancer, she opted not to tell kids (age 15, 17, 18)Her husband (my brother) followed her lead.
    My children (age 11, 13), at their request were kept up to date. This prompted my kids to make it clear if it ever happened to me, they’d want to know. I certainly took this seriously when I was diagnosed, but still opted to say as little as possible – because I didn’t feel I could properly ‘take care’ of their upset. I had my own fears, upsets, anger to deal with. It’s been 11 years for me, my sister in law not so lucky she didn’t make it. When it comes up now with my kids, am so happy and relieved that they commend me for being brave and courageous in coping ‘alone’. What relief, not to feel guilty about taking care of my needs before theirs.

  6. Hi Kathy, thanks so much for taking the time to read my post and to comment – I am really delighted that this has sparked a conversation. So thanks.

    I am delighted that you lived to tell the tale and have been able to reflect with your kids about your choice. I think a lot of what my parents have been doing of late is trying to protect us and trying to retain their independence – and while I really, truly, respect that – after all it’s my dad who has the illness, I think it’s a really difficult balance. It has been particularly difficult for me because my dad was seriously ill when he was first diagnosed three years ago and I was very heavily involved, at his request I’ve tried to be less involved this time – but it’s a really, really difficult thing to get right.

    At the end of the day I know he is trying to do what is right by him, and I am trying hard to respect that – while readjusting to the new dynamic and keeping half an eye on my mum who will be the one left needing support. Time will tell how we get on but I have utmost respect for anyone who can cope with cancer and all the difficulties it presents to them. Congratulations on beating it and thanks again for joining the conversation.

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