Bit of a long shot. Is anyone an expert in jaundice in adults, particularly cancer related?

[FranklyMeDeer]

My Mum has pancreatic cancer and has been referred to palliative care as she is too unwell for any treatment.

Following an ultrasound scan a couple of weeks ago, she was told that a stent to her gall bladder wouldn’t ease her jaundice as it is most likely caused by the secondary tumours in her liver. However family members are noting that it appears to come and go, she varies from being extremely yellow to being almost a “normal” colour. Could this indicate that she does in fact have obstructive jaundice which could be treated with the insertion of a stent? Also, is it possible to tell the type of jaundice (obstructive vs hepatocellular) or the severity of the jaundice with any blood test results? She was offered a further scan to check if her bile duct has blocked since her previous scan at her last appointment however she later cancelled the scan as the whole process of getting to hospital is too tiring and uncomfortable now. Therefore is it possible that she has both obstructive and hepatocellular jaundice which causes the variation in visual symptoms?

My own feeling is that my Mum is not well enough to tolerate any further treatment regardless of the answers to the questions above however I think it would put many family members’ minds at ease if we could be sure that we hadn’t missed any opportunity to either improve her quality of life or to extend her life at all.

TIA :)

[debka]

What a difficult journey. Pancreatic cancer is such a bastard. I would agree with you- an operation would not improve your mum's quality of life. I would be surprised if a Dr would sanction it, bearing in mind she is receiving palliative care.
Wishing you and your mum well, and that she has a peaceful end to her life.

[mineofuselessinformation]

From what you've said, it doesn't sound like her bile duct is totally obstructed as the jaundice hasn't continued to build.
There is a procedure available to insert a stent, but it isn't always successful (the first go-to type of stent is done via endoscopy, in case you didn't know that).
My sympathies to you and your DM.

[GinIsIn]

Pancreatic cancer is a shit, shit thing - I am so sorry. We were in a similar situation with my DF. To keep my mum happy he pushed ahead with the stent. It didn't work. I would agree with you that it's kinder to spare the intrusion of another procedure. for you.

[FranklyMeDeer]

Thank you. It really is a shitty thing. She's comfortable and settled at the moment which I think is more important than running after the slight possibility of maybe extending her life, at the risk of major discomfort to her. I think that one family member in particular is grasping at every small possibility of treatment even though we're well past that stage now. I can understand it, we feel so helpless, but we have to be realistic. Thanks again.

[mineofuselessinformation]

I'm so sorry, Frankly - I didn't look properly to see the poster's name.
For my DF (I'm not saying this would be the same for your DM, by the way), it was an attempt at an endoscopy that caused everything to go pear-shaped.
I know the feeling of family members wanting you to do something else. Go with your gut feeling. You know your DM best, and can help and support her to make the decisions she wants to.
It's easy to look back and wonder if you should have done or said something differently. Ultimately, it is you supporting your DM to live out the rest of her life in peace and as comfortably as possible. If you don't feel it's right, it probably isn't.
I so wish for you that you weren't in this awful position.

[FranklyMeDeer]

How are you doing mine, if that's not a dumb question? It's such a shitty, shitty thing.

I don't think she'd tolerate anything invasive, she can barely sit up in bed. There are just one or two family members who, understandably, are clutching at every perceived chance. I emailed her consultant's secretary and the consultant replied stating that even though the jaundice is intermittent, her other symptoms mean she's not well enough for treatment. I think everyone's reflected and realised that the aim now is for her to be comfortable and settled.

[mineofuselessinformation]

I'm kind of ok, here and there, to be truthful. I get caught out by things that bring it back, and then of course I get upset (big waily sobs in my case).
Anyhow, thank you for thinking of me.
I'm pleased for you that your family are now 'on side' with you.
It's such a difficult journey, but it sounds like you are doing all you can to make sure your DM is comfortable.
Remember that, it is important, especially if you waver about what your DM would want.
Massive hugs to you.
I'm so glad you replied as I thought what I had said had been too much for you.
Pancreatic cancer is an awful disease, and you only find yourself knowing about it when it affects one of those closest to you.
Please keep posting if you want to, I know I found the thread I had very helpful and supportive - and it was also a place where I could come and vent my feelings, even if I couldn't in RL. It's a place where no-one wants to find themselves, but sadly some of us do. Keeping my arms around you, Frankly.

[phoria]

I'm no expert by any means but my mum had bile duct cancer and had several unsuccessful attempts to insert stents to help with the build up of fluids and jaundice. In the end they inserted a drainage bag so that the fluids had somewhere to go. This helped prolong her life by a few weeks. Could they perhaps give this a go (if there is a blockage in the bile duct)?

[phoria]

Just to add it's a minor procedure so should be tolerated by your mum if she's frail. Also so sorry you're going through this OP. Cancer is a complete bastard.

[FranklyMeDeer]

Sending a cuddle right back to you mine, please don't worry about saying too much, I'm the kind of person that wants as much info as possible which is why the family have put me in charge of information gathering

I'm not coming on here much atm, but today I need the distraction.

Mum has deteriorated further over the past couple of days, we're now just waiting for a bed at the hospice for her, which we're desperate for as she's completely unable to get out of bed now. Even though we have carers in x4 daily, because of being unable to get to the commode she needs more personal care than she's willing to let us do for her. That is of course, assuming that there will be a bed in time, which in turn means that someone else has died and their family is grieving which is a horrible horrible thing.

I'm on the other side of the country but am on my way over this afternoon.

As it happens, today is the anniversary of my dad's death.

My mum is being typically stubborn and kept telling the hospice people that she was doing great at home. My brother has been looking after her this week and he's on his knees with the crapness and sadness of all this. He's had to ring and chase gp, nursing etc (as I did last week when I was there) as we've just been left to it. The hospice nurse rang and took mum's word that she's ok and never even tried to speak to my brother about what was really going on. I'm pretty pissed off about this as we've been telling the hospice nurses all along that she is proud and stubborn and has underplayed how unwell she is all along. My poor brother had an awful experience with her yesterday around struggling to get her to the commode, and then her getting panicky and breathless for hours afterwards. And they think that a woman this unwell is able to make reasoned decisions about the amount of care she needs. I can't get my head around it.

[Babyroobs]

Sorry to read what you are going through. If I were you I would ring the hospice back ( they should have a 24hour telephone service) and explain the situation. Say that you and your brother can no longer cope as her condition is deteriorating quickly. Ask them to arrange admission asap. Hope you manage to get a bed soon.

[mineofuselessinformation]

Tried to post earlier and lost it, sorry.
Have you spoke to the hospice staff yourself and explained DM is putting on a brave front? Don't think I'm pressuring you - you have more than enough on your plate.
As for your DM, I wonder if she is afraid because she knows this last move will be the final one, so is trying to put it off.
It sounds like DB needs a break, could they at least offer respite care (which hopefully could become permanent)?
It all sounds so difficult, I really feel for you.

[FranklyMeDeer]

Hi. Mum went downhill very quickly on Thursday night and died on Friday morning. We're very shocked by it all. Her final few hours were not pleasant. My brothers were with her and had to fight to get nurses here to give her medication. She was peaceful when she actually passed though.

Right to the end, we just couldn't seem to make anyone else understand how she was minimising. We explained so many times, but they kept saying they could only take her word for it. I suppose they have to protect the patient and agree to their wishes but this was just ridiculous. She was a very unwell lady whose family were struggling to look after her. Whenever anything was eventually put in place (eg carers, commode etc) she'd deteriorated again and was on to the next stage but then we'd have to fight for the next level, because she'd tell the nurse she didn't need it when it was plain to anyone with eyes in their head that she did.

My siblings and I are on a weird comedown from all the stress. Very surreal days.

[mineofuselessinformation]

Oh, Frankly. I'm so sorry to read your DM passed away. Massive hugs. Xxx

[mineofuselessinformation]

Just coming back to say, the stress totally echoes with me - I felt like a robot when dad was ill as I knew I couldn't let my emotions get in the way. All the time, you're second guessing yourself and trying to do the right thing, aren't you?
As for the coping thing, dad didn't get the pain score business at all - he just didn't understand it and was really too confused to try. We too felt like people weren't really listening at points.
Take some time to take it all in, I know I'm only now beginning to realise what's happened, and try to accept it.
It's a very difficult journey. You have my every sympathy for your situation.
Take your time, don't be rushed in anything. Take some time off work to reflect, and to gather some courage to face the arrangements. (I hope it's not too hard for you to read, but we are having family flowers only. Writing on the card for my flowers was incredibly hard and emotional).
Look after yourself, Frankly. What you're going through is the most awful thing that anyone has to face.
To repeat myself, I'm so sorry for you. Xxx

[Southsearocks]

I lost my mum 18 months ago to cancer. What you are describing is how I felt too, it is totally surreal and you have my every sympathy. Take good care of yourself right now. Losing your mum is profound Thinking of you X

[Xmasfairy86]

Sorry to read this. It truly is a horrific disease. Glad she was peaceful at the end

[Ifyoubuildit]

So sorry to read the this OP, it's sad and for me quite scary. My FIL has just been diagnosed with PC and there's nothing that can be done. I'm so sad for him, for my DH and for my DCs. He's such a lovely man.

I hope you have the time and space to mourn your DM, my deepest sympathies to you and your family.

[mineofuselessinformation]

I don't know if you're still reading, Frankly, but I want you to know I'm still here if you are.
My journey is probably not the same as yours, but if you want to pm me or leave a message on here, I'm listening.