Life after Bobby: Week 1

I can’t quite believe that as I’m writing this Dad died over a week ago.

He was originally diagnosed with bile duct cancer in September 2007. At the time his odds were pretty gloomy for making Christmas – a very rare cancer, the statistics on cholangiocarcinoma do not make for pretty reading, by the time it is detected it is often too late to do much more than offer palliative care. My Dad was, of course, an exception and chose to fight it in his way. He was never prepared to just accept what he was told, don’t get me wrong he wouldn’t question the judgement of the medical staff caring for him, but he would identify their most optimistic and positive angle and build his hopes on that. This positive approach meant that Dad lived with bile duct cancer for five years and two months, throughout that time he had many medical interventions, he had stents fitted and drains, major surgery to remove his bile duct and resection his liver which left him with a Mercedes Benz shaped scar he was rather proud of, he had complications along the way including MRSA (which was a complete bitch), he had chemotherapy as treatment and later on palliative chemo too.

The upshot of all this is that we knew Dad had limited time, he received his terminal diagnosis over two years ago and he accepted he would not beat his illness about six weeks before he died. Accepting he was actually dying, was not the same as giving up though. My Dad did not lose his battle, he did not succumb to cancer, he did not give up his fight and accept his illness – he stoically, bravely, steadfastly lived his death as he has lived his life, with a positive mental attitude and a concern for others. Dad’s last week was supported by the Hospice at Home service from Rowcroft, this enabled him to remain at home which was amazing and it also enabled him to die his death his way, for which I’ll be forever grateful. Dad didn’t want to die in hospital, he didn’t want to be defined by his illness, he never really was; in my eyes at least he was defined by his approach to his illness, not by it, he lived every last minute of wellness that he could.

A week on life is busy. I think most people have been told, the announcement went into the local paper yesterday but we did also try and contact most people beforehand. Mum is doing ok considering, well I think we all are, there are ups and downs but mostly ok. We all seem to be dealing with the situation slightly differently, which is no real surprise in our family. I was talking to my sister this week (cuddles with my new niece twice in a week – there are some huge silver linings to this situation) and she described it as shocking that Dad had died! There are many things that it feels to me, but shocking just isn’t one of them – but I guess that’s it, everyone is different, and everyone’s experience is different and we all have different coping mechanisms.

My biggest concern is that I’m not patient enough, with anything or anyone. I’m tired, bone tired, somedays feel like walking through treacle, but I know this is relatively normal. The one thing I wasn’t prepared for was the physical ache! It was like I’d been punched in the chest, it’s easier now, and I’m not sure whether it was stress or a strain from crying, but when people said grief hurt I had no real idea that it would be a physical pain. I know mentally and physically there’s been a lot going on of late, especially in the last month, so I’m not too worried and on the upside I have started craving vegetables (and no I don’t just mean crisps), I actually feel like I want to start eating properly – which is something after at least a fortnight of cake and other sugary badness as the ever frequent pick me up. The downside of such a crap diet is that none of the stacks of potential funeral dresses I have fit! I have Dad’s words ringing in my ears ‘What does it matter, it’s not a fashion parade you know‘ and yet it’s important to me, I want to look smart. I’m confident I’ll get it sorted.

The other thing we have to get sorted in the next few days is a eulogy for Dad’s funeral. I discussed Dad’s funeral with him in recent weeks and asked whether he minded if I spoke about him. If I’m honest I almost didn’t want to ask because I was worried he’d say no – he was quite a traditionalist at heart. However he was fine with it, as long as I didn’t go on for too long. I’ve spoken with my Mum and sister, got a few ideas from my brother, hoping to get a few stories about life in Cadets, and have a beginning and an end – it’s just the middle that needs pulling together now.

It’s a welcome challenge to be honest, a great distraction, I suspect the real skill will be required in condensing all that we have into something coherent that really captures who Dad was. The photo that keeps coming to mind is this one, it’s Dad with his PICC line when it was removed a few months ago, messing around and posing for a photo – safe in the knowledge that one day it might make it onto this blog, well here it is and somehow I’ll capture that spirit in words by next week.

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4 thoughts on “Life after Bobby: Week 1

  1. your post (and blog) just warms my heart. my dad (and my family) started his journey with bile duct cancer this year. he sounds very much like your dad. thank you for sharing. you were lucky to have your dad… and he was extremely fortunate to have you. 🙂

  2. Thanks so much for this post. My dad died of Cholangiocarcinoma 3 days ago and I can relate to all these emotions. Thanks for making people out there facing similar challenges know that they are not alone. I am From Nigeria and my dad passed away in Germany thousands of miles away from home, just he and I but it was worth every memory.

    1. Hi Francisca, I’m so sorry to hear of your loss. Cholangiocarcinoma is very rare and there isn’t a lot of information online about it, so I’m glad my blog has proved useful. There’s a series of posts about ‘Life after Bobby’ (in the menu on the right hand side) that documents the last year since my Dad died; if there’s one thing I can promise you it’s that you’re not alone and there is no rule book for grief and loss – do what feels right for you and take care of yourself, G

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