Five things I wish I knew when my Dad was dying of cancer #cholangiocarcinoma

Last November my Dad died from bile duct cancer, cholangiocarcinoma. Bile duct cancer is an incredibly rare cancer with current estimates of 1,000 new case in the UK each year and 2,500 in the US and an annual incidence rate of 1-2 cases per 100,000 people in the Western World.

Search twitter for people talking about most cancers and there are hundreds of tweets, search it for cholangiocarcinoma and there are a handful of faces. One of those faces is Myra Kohn. Myra’s father was diagnosed with bile duct cancer in April 2012 and has been receiving treatment ever since. I’ve been following Myra’s Dad’s journey on twitter and was devastated to see that this weekend he was admitted to hospital and has not yet regained consciousness. He has dangerously low blood pressure and Myra and her family, while hoping for the best, are almost certainly preparing for the worst.

Back in November last year, a couple weeks before Dad died I wrote a blog post called: 5 things I wished I knew when my Dad was diagnosed with cancer. Myra got in touch to say thank you. She had also paid me a fantastic compliment in July last year when we were discussing blogging, she said this:

So as the last few days have progressed Myra and her father have never been far from my thoughts. I keep googling ‘What time is it in Puerto Rico’, to keep track of what is happening over 8000 miles away, with a family who I have never met, and yet whom I feel remarkably connected. There is very little any of us can do to ease their situation, I’m not religious and don’t pray, but I do blog, and I’ve done my best to blog my Dad’s journey with cholangiocarcinoma and so I offer this post to Myra, her family, and anyone else who stumbles across it in such a desperate situation. I wish you all virtual strength.

What follows is five things that I wish I knew when my Dad was dying of cholangiocarcinoma. I’m not suggesting they will be similar to anyone else, I don’t offer them as truths, I offer them as crumbs of solace in the hope that they may help those who find them.

1. Time slows down and fastens up all at the same time when you’re waiting for someone you love to die

My Dad took an age to die, a couple weeks all told and he was unconscious for about a week of that. My Dad died to soon, it was over before I’d had a chance to tell him enough times how much we cared. Both of these are true, I suspect there is never enough time, but deep down now I know Dad knew he was loved, I know he knew we all cared, and I know he’d be proud of how we dealt with his death, as much as we are with how he showed such resilience and dignity in his death. At times I remember getting incredibly inpatient, I remember wishing it over so he did not die on my cousin’s birthday (his favourite niece, he was never going to do that really), I remember wishing he would somehow gain consciousness just once more. We had a brilliant healthcare assistant from the Hospice at Home team who quite sternly said to my unconscious Dad ‘In your own time Rob, there’s no rush’, turned and looked me in the eyes and told me ‘He’ll go when he’s ready and not a moment before’. I felt guilty for weeks afterwards, what would she think of me, wishing him away. Of course it wasn’t that, and I don’t worry about that any more, she was right, she was focused on Dad and that was the right way to be. There’s certainly no roadmap for death or end of life, and there’s no linearity to it either. It is such a mix of emotion and experience. So worry not about time and instead focus on the experience.

2. It’s true what people say, you do need to eat, drink and sleep – it’s a long journey ahead of you

Of course the difficult thing is that you have to balance the unknown, the lack of timescale, the courageous spirit that you’ve seen your loved one exhibit, with a few basic needs. Everyone nags you to eat, to drink and to get some sleep. In the early days of Dad’s death I was petrified of sleeping, when I look back at it now I wish I’d got more sleep then because I sure could have done with it later. It is incredibly hard to leave someone, even to goto the loo, or to goto work like I had to for my leaving do a couple days before Dad eventually died. In the end I used to focus on what would Dad say, he’d have hated the fuss and would have wanted life to go on. So we tried to balance that. It’s almost a year later and I’ve still not got back into a particularly good diet or sleep regime. No excuses, I’ll sort that soon, but do take the time to look after yourself too.

3. Most people don’t know what to say, but they do care 

This is a biggy. I’ve blogged before about people’s discomfort talking about cancer, or talking about death. I’m fairly confident some of this is cultural, but in the UK we’re mostly rubbish at it. What I realised very quickly though, was when my Dad was dying, and shortly after his death, people didn’t know what to say, but I know they did care. I received emails, texts, DMs, tweets, cards, flowers, cookies – all sorts of acknowledgements but very few people were able to actually talk about Dad’s death. That didn’t matter really, they were able to talk about him, and about the impact he’d had on them and their lives, and that was really comforting, especially the facebook comments and messages from his cadet colleagues and former cadets once he died. I think it’s really safe to assume that even though most people don’t know what to say, they do care, they’re just fearful of making a bad situation worse.

4. Your hands and feet go cold when you’re close to death, but…

Once Dad lost consciousness, and it became clear he wasn’t going to regain it (he did that a few times), we asked the hospice team what the signs were, how would we know when he was close to death. It is surprisingly hard to find out what happens when someone is close to death, and there was no way I was risking googling at that time. The one fact that did come true was that eventually, as his heart shut down the blood flow to his extremities reduced his hands and feet went cold. The ‘but’, of course, is that my Dad was never going to be textbook; three times in the course of the time he was dying his hands or feet started to go cold, there was much checking and concern and we readied ourselves for the worst, only for them shortly after to start getting warm again. In the end my Dad died just after 7am and from memory his hands had started to go cold an hour or so before, his feet didn’t follow suit at the same time and we joked they were just well trained due to the miles of walking as a postman. It may be a useful indicator though.

5. It’s ok to talk about it, your experience, your Dad, your hopes, frustrations, all of it. It’s what we’re here for.

At the time of Dad’s death I’d been staying at my parent’s house for a few weeks. I had been working at home, writing handover notes preparing to leave my job, and I had not really seen many people or spoken to anyone except family and medical staff for weeks. I remember feeling anxious about contacting my closest mates to let them know what was happening in case it was another false alarm, my Dad was a bit of a prodigal patient when it came to his cancer. He had defied so many odds it felt slightly surreal to really believe that this was it. I had also gone a bit quiet on twitter (a relative concept of course) but I was concerned people didn’t need their day ruining with me tweeting about death or dying. This is something I consider a lot, I joined an #endoflifecare online conversation last week and fear I may have offended some people with the volume of my tweets. I think it’s important that we speak about death and dying, and I was provided with the greatest virtual support, complete strangers sent tweets, close online friends (who I had never met in person, most of whom I still haven’t) sent messages, one or two sent messages in the middle of the night that could not have been more perfectly timed. When Dad did die I felt the need to blog, to share it, to acknowledge it, and again the support I received from this virtual community was humbling to me.

So Myra, please do share your journey with us, if you wish to. Tweet often or sporadically. Share what you can and wish, when you can, but know there is always someone thinking of you. I hope one day that we may meet in person and share more of the journey’s with our fathers, and I very much hope that your experience is as positive as ours was. Much love.