Hi to anyone reading,
Off the bat, if you're on this or similar forums, I'm sorry for everything you're going through either directly or a loved one.
My dad (73) was diagnosed with bile duct cancer in Nov 20. This was after a wholly unexpected kidney failure some months before that. At that point, he eas suffering from severe jaundice and even with those symptoms, doctors took months to diagnose the tumour. At the time of kidney failure, he underwent surgery to have a stent placed in the duct to alleviate the bile build up.
Have done an awful lot of research over the months and have come to appreciate the rare nature of this ugly monster. My dad was told he would have at best, 3-6 months without chemo, 6-10 with. After consideration, he chose not to pursue chemo - on the premise he would rather have 3 - 6 months of a somewhat decent quality of life than 6-12 where he would be taken out for half with the chemo.
Some specialists my brothers spoke to advised that this type of cancer has an incredibly fast development and metastatsis when it really gets going. Up until perhaps 3 weeks ago (7months on from diagnosis, up to a year since he actually had it), my dad was as active as a 73 should be. Taking regular long walks, laughing, eating normally. But within 3 weeks, he's deteriorated to the point he is almost immobile, eating next to nothing and having to take several rounds of morphine for the time he is awake.
As a family, we've come to accept the terminal nature but it's breaking our hearts seeing him deteriorate the way he is. Palliative care teams are fantastic but there is only so much they can do. Especially overnight when his pain is excruciating. We've been advised that end of life is now nearing and all we want to do is to help relieve his bloating in the stomach, have him eat and be able to laugh again.
im not really even sure why I'm posting here - truth is this time of night I'm just waiting for him to wake up so I can give him meds and constantly search on sites like this for ways to be a more effective carer. I'd be lying if I said I didn't just break into tears on days I see him go through so much pain.
ive read an awful lot about others experiences and I want to send out as much energy to those of you have that have sufffered, lost or are in that stage. I personally always imagined something like cancer, let alone such a rare type, would hit my family. But cancer doesn't care about who you are. For anyone who is diagnosed particular with cholangio, I can say a few lines. Act fast. Do your own research. As great as the NHS is, they will miss things. Delay scans. Misdiagnosis or not diagnose at all. And with this particular type of cancer, time is your single most vital element. Jaundice and yellow eyes, extreme fatigue, stomach pains - these are all big signs. Go for the chemo. I wish my dad had but he is his own man and we couldn't convince him otherwise.
And whilst I will always be happy to talk to anyone about my experience, I guess I'm also reaching out in case anyone has special tips from their own experiences on how best to handle the next few days/weeks, whatever my father has left.
Sending the most positive vibes and strongest sense love to anyone out there in any suffering, whether directly or through the loss of a loved one. May God/the universe/whatever you believe in, shower you with the ability to manage the sadness
