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:

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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.

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15 thoughts on “Five things I wish I knew when my Dad was dying of cancer #cholangiocarcinoma

    1. Gemma it is SO good to hear from you, have been thinking about you a lot and kept checking back with your blog occasionally. How’s your Dad doing? Thanks for that link, will take a look. Was just thinking I wouldn’t want anyone else to join this little Cholangiocarcinoma Kids club we’ve got going on here, but it is quite remarkable the way it has brought complete strangers together in a positive way. Sending positivity in your direction too 🙂

  1. Hey I feel you my dad died of cancer exactly a year ago on sep. 2nd I was devistated i hope you are ok i will pray 4 ya 🙂 and the saddest part is it was around my birthday 😦 he never got to see me on my first day of jr.high or he will never see me graduate or get married or any thing but he is always with me and so is your dad 😉

  2. Wow this article hit me hard. My dad was diagnosed with stage 4 cholangiocarcinoma in August. He’s in hospice now and is slipping in and out of consciousness, fighting hard. There have been so many times over the past few months where I thought, “today will be the day I lose my dad.” I’m afraid of the phone always. I want desperately for my dad to be there every time I walk into the hospice, but seeing him deteriorate each day hurts arguably more. Much love to you, it’s a terrible disease to watch as it takes hold of someone you love.

  3. My father is now going into hospice care. He was diagnosed with stage 4 bile duct cancer Christmas Eve last year. Thank you for writing of your experiences. This is heartbreaking, I’m sad we’ve all have to go through dealing with this terrible disease.

    1. So sorry to hear about your father Kelly; its such a brutal disease but Dad had the most exceptional support from our local hospice and I hope your father does too. Sending much love

  4. Hello. Thank you for this article. It helps so much to know there is a place to freely express around death, cancer and hospice. My dad just went into hospice yesterday. He has been beating the odds with lung cancer for the past seven years. Doc’s said he would live one year maybe two and here he is now seven years later. This is the first time hospice has come and it’s all beginning to get real. I still don’t know how long we have and I live in another state. I’m comforted to know hospice is there and I pray that they will tell me when to come. Of course I have an idea of how I think it all should go but the honest truth is that I really don’t know. I enjoyed reading the article and I will continue to check back for further updates. Thanks again!

  5. My dad is in hospice, at my home. Im single mom. Since I was young I always noted I was never praised or appreciated for anything good I did or achieve. My siblings are not participating in care or cost of carting while dad was diagnosed with lung cancer stage 4 , 5 months ago and not even when under Hospice. Any little thing my one sibling do, he makes it like biggest good done. I never get any prise but get his accusations. He never appreciate what I did and how I’m doing to continue care for him with hospice. ( expense, place and living expense, drive around for what is needed for his care) I’m very angry that even at this stage he can not see that I do things for him and he dose not say good job. I feel that he takes part of my siblings and makes me look bad. He blames me for somethings that I never did and then when I point out to him, he starts double blame saying no one ( means me) let him say things and blames him. Then he starts to cry. I tell him no need to cry. He says you guys are making me cry. His varying makes me feel guilty for something I am not. When I cry, I do not get consolation ever from him.

    Long haul..
    What I need help with how I make my dad more comfortable and prevent confrontations and anger argument. I do not want to live with guilt for not resolving the issue. How do I accept that I will never get good job praise from him and why do I expect it so badly?

    1. Hello, I’m really sorry to hear about your Dad and the situation you all find yourselves in. I’m not really sure I can give you any advice, but I do think you answered your own question in a way. You ask how you can make your Dad more comfortable and prevent confrontations – I think it’s about letting things go (easier said than done I know), knowing perhaps that the reason he makes a fuss about what your siblings do, is because they’re such rare events they stand out for him. They only stand out because you’re his constant. I think if you can accept he isn’t likely to praise you, then it may be easier for you. You do what you do because you love your Dad, it’s your choice (even if it doesn’t always feel like that). He loves you too, he wouldn’t live with you otherwise 😉 Just take it easy on yourself, know that in years to come you’ll have the peace that comes from knowing you’ve done your best, and you won’t need to keep convincing yourself that you could have done more. Stay strong xx

  6. Hello. Not sure if you’ll see this but I hope you do. My dad has been diagnosed with Bile Duct cancer which has metastasized to his lymph nodes and lungs. He still has the ability to walk and talk some but I can tell it exhaust him. I’m just so scared I won’t know when it’s time. He is as yellow as a dandelion and looks like he’s 90 when he’s just a 63 year old man. How fast did things progress for your father? Besides the cold hands and feet how did you know when things were getting really bad?

    1. Hi Nicole, I’m so very sorry to hear about your Dad’s diagnosis and I’m glad you found my blog (which I’ve not updated for ages) and that you got in touch. My Dad had 5yrs after his diagnosis and lasted 2yrs with a terminal diagnosis. Like your Dad he was young and it was such a shock when he turned into a Bart Simpson lookalike. Dad’s jaundice was solved temporarily with surgery to insert a stent, but it did return. I’m sure one of the things you’ve established is that there is not a lot of information out there about bile duct cancer/cholangiocarcinoma and no standard path for patients. What I would say is that we had to self refer to our local hospice (Dad’s oncologist was I think reluctant to admit he could no longer treat him) and their support made all the difference once we knew we were out of active treatment options. Looking back I think Dad was clearly deteriorating in the last six months, very rapidly in the last three (but we didn’t know that then). Dad needed regular blood transfusions and like your Dad he was exhausted without them. I think we knew things were really bad once Dad wasn’t able to get out of bed any more (last 2/3wks) but I suspect it’s different for everyone and my understanding is that my Dad took quite a long time to die. Can you contact your local hospice for some support? Does your Dad have a consultant caring for him? What about your GP, worth asking them to review and update you maybe? Please stay in touch and email me george + julian at gmail + com (spelt out to avoid the spam bots, my names are all one word) if I can help in any way/you’d like a more private conversation. Stay strong and look after you too, G

  7. I just happened to stumble across this blog after looking up things about cancer. We found out a month in February that my dads cancer was back he had cancer in his neck (squamous cell carcinoma) in his parotid gland. In February we found out it had metastasized to his lungs and liver. It is stage 4 and treatment isn’t an option really and he doesn’t want to try anything. So he is now home on hospice. The doctors have given him 6 months.For now he is doing well considering. My sister and I have moved back in with my mom to be here to help and to just be with my dad. On top of him having cancer he also has Parkinson’s. He has his good days and bad, he is still able to get up in a wheelchair and does that for a few hours every day. I’m just trying to do my best to balance my rest and life basically. Its just so hard sometimes, I know that everything will be ok. We are just enjoying the time we have left and making memories! Im just glad I came across this, reading this just helped me to realize a few things and just helped in general.

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