Our experience so far with bile duct cancer

Hello

As someone who often reads this site and other sites for help and support I thought I would try and return the favour and post my experience in the hope that it may help someone else in the future. With bile duct cancer being fairly rare, I think the support and advice and available is fairly limited compared to other cancers, so I hope this post will help contribute to the sharing of information and experiences. Apologies for the length of the post, just including any info I think may help. 

Initial hospital admission

My 64 year old father visited the doctor for a routine appointment in December 2018 presenting with severe jaundice (I cannot believe we didn't press him to go to the doctor sooner, looking back he was like one of the Simpsons, but he was adamant he was going to wait for his scheduled appointment and that was that). He was referred straight to the Royal Gwent hospital and treatment began swiftly to alleviate the jaundice - biliary drain inserted to relieve the bile build up caused by the tumour. The procedure is not done under general anaesthetic and Dad suffered terribly with pain during the procedure, which unfortunately set the tone for much of his future operations - they would be painful anyway, his anticipation of awful pain probably exacerbated things. Anyway, this drain wasn't draining the bile as quickly as they'd like, so he had to have another drain fitted on the other side. This time they used different drugs during the procedure (thank goodness as Dad was adamant he couldn't go through it again), and it wasn't as bad (Dad was hallucinating through the whole thing and was *very* cheerful when we visited him later!). 

Biliary drains

The surgeon preferred to use the drains rather than stents as there was a smaller risk of infection, but I will say that the drains were very difficult to deal with. Dad had no end of trouble with the one, after insertion it took a week to get it right and he was back and forth radiography getting the placement sorted, and he was stuck in hospital just to get this sorted. He was admitted on the 11th December and was finally let home on Christmas Eve, which is a long stay for what should have been initial diagnosis and a relatively simple procedure. The drains were also difficult to live with on a day to day basis (and Dad had them for 5 months!) they caused him pain at the site and having two bags strapped to your legs isn't good for your confidence or ability to get around, or your ability to lie down comfortably. And who wants to go out and about like that? We would empty them at home ourselves but they did start to smell after around 2 weeks, and we had very little support from the hospital. I had to ask them for straps to put them around Dad's legs, I think they would have let us go with him just carrying them. We didn't have any replacement bags either or any advice about care. We had a health visitor come round and she could change the dressings, but in terms of the tubes and bags she couldn't really do very much. Eventually after a later procedure at a hospital with more specialty we had more advice and support. So if anyone is providing with bags make sure you get advice about dealing with them, replacing them and keeping them clean. All in all, they did do the job in reducing the bilrubin levels, but I'm not sure if the pay off was worth the discomfort and trouble they caused - the mental effect was more significant than I thought. Any the irony is he ended up with an infection down the line anyway, so part of me does wonder if a stent would have been the better option in the long run. 

Pain relief

Just a word on pain relief too - Dad was prescribed morphine to take twice a day and then another quick acting morphine (Oromorph) to take as and when. He reacted awfully to the Oromoprh, confused, snappy/nasty, couldn't do his puzzles etc., he was not himself on them at all. He came off it and switched to tramadol/suretec(? sorry for the spelling) in the future and did much better. Don't be afraid to mention side effects and get drugs changed if you don't think they're working for you/your loved one. 

Diagnosis and first steps (

Then in January after analysis of the many many scans Dad had (be prepared for countless scans and pokings and proddings), he was diagnosed with bile duct cancer, but the scans seemed to suggest it was operable. We then had an appointment at the Heath Hospital under the specialist liver unit. We were told all the possible outcomes (surgeons don't sugar coat things), and told that surgery is the only possible 'cure' for this cancer (of course chemotherapy can and has been successful in giving patients some more years of life), and made aware of how many hurdles we would need to clear. Firstly we needed to get the jaundice levels down, nothing could happen until then. That took a few more weeks. Then it was a laparascopy to see if any of the cancer was in the stomach lining (often cells are too small to show up on the scan). If this was clear, the next step was a portal vein embolization procedure to cut the blood supply to the half of the liver they wanted to remove in order to grow the remaining health side. Then six weeks to allow this to grow, then a scan. If the scan showed no growth, they wait a few more week, do another scan, and if still no growth then no surgery. If the liver did grow, then they could proceed with surgery. They took some blood tests and we went home. 

Recommendation: monitoring and blood tests 

Dad hadn't been well the day of the appointment - he vomited in the surgeons office, but we put it down to anxiety. Then in the middle of the night we had a call to say the blood tests showed his potassium levels were dangerously high and to go to the hospital immediately. Not sure what caused it but some more fiddling of the medications and another stay in hospital and he was right. Another recommendation - listen to your body if things feel different and go to the GP for blood tests in between the waiting stages. The lack of contact with the hospital/departments was terrible looking back. You have to be pro-active. 

Laparascopy and PVE

Fortunately, there were no signs of anything nasty in the stomach cells, but this simple procedure resulted in another 10 day stay in hospital as it dislodged one of the biliary drains, and Dad was back down to radiology 3 times to get it sorted. Then on to the PVE - this took place in the Royal Gwent, we turned up on the day to be told there were no beds and it was cancelled. I cannot tell you how frustrated I was - Dad was a cancer patient, everything else that was to follow depended on him having this procedure on this day, and it was important that we kept things moving - time was ticking. Anyway, we got halfway home and had a call - it was back on. The radiologist had kicked up a fuss and had arranged for Dad to have a day bed in a liver clinic. I was pleased but also wary - the clinic closed in the night, what if Dad needed to stay? Would they rush him home? Ultimately that's what I think they did. If you go through cancer diagnosis and treatment with a loved one you will have many instances of needing to ask questions, stand your ground or even complain, we are not a family who likes to cause a fuss and often we accept things even though deep down we know we should ask questions, and I would really encourage you to, if you feel something is wrong, ask those questions of doctors, nurses, admin staff etc. Be polite, as often the person you're talking to isn't directly responsible, but listen to your gut and don't be afraid to be questioning. 

Dad had the PVE proecedure and basically said he thought like he was going to die (again, the mental things comes into play, I do think he gets so anxious that it can make pain feel worse. I have seen others say it's awful, others say it wasn't so bad, it can depend on the individual. Dad said he thought it was like having a heart attack (again, there's no general anaesthetic). He stayed in the care of the nurses in the clinic until the evening and was told he could go home. I accepted this as he wanted to come home and so did I, but in hindsight I should have pressed for them to find him a bed and keep him in overnight. They had just about got his blood pressure and heart rate under control and he probably was 'fit' to leave going on the vital signs etc., but given the fact he also had two drains they should not have let him home. This was the downside of having the procedure in the hospital closest to us - they did not specialise in Dad's cancer. Even the drains baffled them. In the future I would always have anything done in the Heath where they understood the condition better. 

Pain/the mental toll

After the PVE Dad really struggled with pain. We had 6 weeks to wait until we were next seen and they were not happy weeks. He was on morphine and other painkillers but in constant pain. He was very down and I believe depressed (which as a loved one has been one of the hardest things to deal with actually. My mother especially has struggled as she lives with him 24/7 ,she is wonderful and incredibly strong, but you prepare yourself for helping with the physical side of treatment to your husband/father, you don't really prepare for the mental toll it can take. You need to learn endless patience, but also find a balance between coddling and being too harsh on the patient. Don't be too hard on yourself if you're a carer and you lose your temper, or if you're a patient and you're struggling to be positive, these are all natural things to feel. We all just have to try to work together and remember that you are in this together no matter what). Anyway, we were very lucky (again) that the 6 week scan showed the liver had grown and it was all systems go for the surgery. 

Infections

So. In the wait between the scan and the surgery date, me and my mother had convinced ourselves that Dad's moaning and complaints of constant pain were in-part a mental thing, and then one day blood appeared in one of his drainage bags. We didn't know who to contact about this - another piece of advice, find out who you can contact who has specialist knowledge as early as you can. The district nurse gave some advice and we decided just to keep an eye on it, Dad's pain hadn't changed, blood pressure and temperature were normal so there didn't seem to be an infection, so we monitored it. Yet another bit of advice - don't just wait and see. Go to the doctor/hospital and get yourself seen. After an incident involving more bleeding into the bag and it spurting out all over the bathroom floor, we went to A&E at the Royal Gwent (we should have gone to the Heath, I could kick myself for not insisting we go that little bit further). After some poking and prodding by a well-meaning but clueless nurse we were sent home and told to come back to the liver clinic tomorrow. So we went back, saw a nurse, blood pressure and temp normal, the blood test showed some sign of inflammation but they said 'this was to be expected', the bleeding had subsided and we were sent home. I knew it wasn't right, I knew, but the brain is a powerful thing, you want things to be ok, you want to listen to the nurse, they know better dont they. But lo and behold, 4 days later, another big spurt of blood everywhere, and we went to A&E at the Heath. 8 hours to be seen and processed through the system, (he's a cancer patient for goodness sake! look at the drains! I must have repeated myself 100 times but no-one seemed to be concerned). They were on the cusp of sending him home I swear but a temperature spike meant they kept him in. Good job because half hour after he got a bed on the a&e bit he started bleeding everywhere again - he swiftly got put on a ward after that. 

Needless to say he had an infection, a nasty one too, one that took days of the 'bleach' antibiotics to clear. His surgeon was not happy at all that he'd been sent home from the Gwent. An artery or something had burst so he needed yet another procedure to sort it out. Dad's surgery was scheduled for the following week, after all this build up we couldn't bear to hear it had been cancelled, they were going to give Dad until 3 days before to get his temp down and get everything right. Dad was wonderful in this spell in hospital, I don't know what it was but it was like the artery bursting had relieved some of the pain and the surgery date had given him a purpose - he was like a different man, the old Dad that I hadn't seen in a while. He was so positive, walking up and down the corridor to get strength up, eating really well, all the things we'd struggled with he was doing. He was determined he was going to make this surgery date. It's perverse really, while this infection was a set back and in an ideal world it wouldn't have happened, there was something about that week on a nice ward, under the care of attentive nurses and a caring surgeon that really motivated Dad, and it just set him so well for the op. And it turns out he did it, his temp came down and he was ready to go ahead with the surgery. 

The surgery

Down he went in the morning - we were told it takes on average 10 hours (they planned to remove over half of the liver). We were also told they could get 5 hours in and find something that meant they couldn't continue. The whole morning I was on pins, fearing a phonecall. It got to about 4pm and I felt better, they must be nearly done now? Then 5pm, 6pm, 7pm, 8pm, 9pm, 10pm, 11p, midnight. Nothing. No phonecall. Me and my mother were beside ourselves. We had no-one to contact and were too afraid to anyway. It wasn't until the next morning when we had a txt off Dad that we heard anything, the hospital never called despite taking my number and writing it on his theatre form. I was too relieved to make a fuss and accepted an apology from him nurse, but looking back I wonder if I should have made more from it if only to prevent someone else going through the same thing. As it is, Dad had a 13 hour operation but it seemed to have gone well and he was recovering ok. He was actually remarkable that next day, up in bed chatting and ate a dinner of fish and chips! I was elated, but in the back of my mind I knew this was just some weird drug effect, and as expected the next day he wasn't as good, so just prepare for that. 

Post-surgery

Generally patients stay in hospital 2 weeks after the surgery, Dad stayed in for 4 as he had a lot of complications (and the 2 week stay immediately before the surgery also meant he was behind). Dad was generally healthy pre-surgery but there were problems with the lungs/chest and breathing, with blood pressure, with levels of various things, so much stuff was just knocked off balance. But it was all par for the course really, the critical care nurse said he was slightly concerned with the lung problem at one point but eventually Dad kicked on, came off all oxygen and started to recover properly. The surgery is like being hit by a train, so be prepared for a slow recovery. Dad had zero strength and even 2 weeks later needed help to get about, but once he did start getting about he soon came on. The mental side again was tough, as being hooked up to so many machines means you have very little independence, but it's just one of those things you need to get through. Also be prepared for the usual effects - diahorrea, constipation, sickness, fatigue, the surgery isn't a walk in the park! Recovery is always one step forward and two steps back, but you'll get there in the end. 

Also Dad was very much looking forward to being free from the wretched bags, but post-surgery you end up with lots of drains and bags coming from all sorts of places! He had one drain left right up until he was allowed home, so just be aware of that!

Recovery at home

Dad has been home now for 2 months and is still recovering, full recovery can take 12 weeks and as I said he was behind, but he's started driving, come off his painkillers, is walking more and moving more and trying to build strength (he's done really well with maintaining his weight but has lost all of his muscle). And the more he does the more he thinks he can do. He gets fatigued quickly and has days where he thinks he isn't making progress as quick as he should be, and as always there's a mental battle raging (he can get down quite easily if for example he has a bad stomach or something else isn't going quite right, he needs to be cajoled - although some days no amount of cajoling will help!). But this is all to be expected and generally he is moving forward in the right direction. He's doing really well with his eating which I'm so pleased with. I struggle when he has down days sometimes and need to remind myself what he's been through - my coping mechanism is to be as positive and life-affirming as possible, and it can be hard sometimes to see him on days where he's a bit grumpy (and I'm not ashamed to admit that I get angry sometimes, I selfishly think things like "all me and my mother been through! all you've been through! and you're complaining about swollen feet! come on!" All these feelings are normal and people shouldn't beat themselves up if you're anything less than the perfect patient or carer). 

Future steps

We've since seen the surgeon and good news - the op went the best it could possibly go (R0 whatever that means, I believe it's a scale and that's the best 'score'), they could take a 3mm margin as opposed to the 1mm anticipated, and didn't need to remove as much as the liver as thought (gall bladder is long gone but we haven't noticed any obvious ill-effects from this). Dad will now be having chemo (capecetabin tablets) - the surgeon said it's his choice and it's probably only a small benefit, but as many know this is an aggressive cancer and if it comes back I think Dad will feel better knowing that he did the chemo and there's nothing more he could have done. He can also stop at any time. So i'm a bit anxious about how he will cope mentally, but like with everything else we will all be in it together and he's got himself in a good position to manage any side effects. 

Personal thoughts/struggles

The past 6 months have been the worst of my life (I'm 30 years old). I visited my Dad every day for every single stay he was in hospital (as did my mother), we are very close and I've been supporting them both through all of this. I've struggled a lot privately with anxiety and stress. I feel like now I should feel grateful that we're in this position, as we really are incredibly fortunate to have gotten to this position, but I'm also nervous about the future and dont want to 'jinx' anything. But also don't want us to waste any time and want to enjoy whatever time we are together on this earth, whether it be months, a year, years, or many many more years. I am getting better slowly, my life stopped and has been dedicated to being there for Dad, but I'm slowly doing other things outside of all that and getting back to 'normal'. What I'm trying to say is that to go through something like this takes its toll, its incredibly difficult, but if you lean on those around you for support and don't be too hard on yourself then you can get through it. 

Again, apologies for the long read but if helps anyone going through similar or answer any questions then it was worth all the typing. 

Love and best wishes to you all x