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Mum with metastatic bile duct cancer

13 replies

2littleonesx · 31/07/2023 22:23

Hi everyone

Just need someone to vent

My mum was struggling with constipation at the beginning of June, sent on 2 weeks cancer pathway, no answer.
Ended up in A&E with billary sepsis due to a blockage in the bile duct.
Endless scans, ERCP, mrcp, colonoscopy, 4 x CT, you name it.
Called in today and told it is bile duct cancer that has spread through the liver and bowel and is now in lungs, nothing they can do and we are talking weeks not months
Absolutely devastated 😔 has anyone been through the same?
What to expect? Thank you xxx

OP posts:
Knackeredhamster · 31/07/2023 23:19

Hi, not the exact same but my mum was diagnosed with non Hodgkin's lymphoma a few weeks ago, she's now end of life care.

I started a thread yesterday 😞

I'm so sorry. You must be in shock, disbelief, all the things. It's all encompassing and surreal.
I'm not much help. But you're not alone
Xxxx

Notinhampshirenow · 01/08/2023 16:10

I am so sorry you are going through this. A few years ago my lovely dad had this very cancer. As you have already experienced - it is a brutal diagnosis. I always felt that it was like waiting for a car crash that you knew was really going to hurt. Try to make memories - we laughed together right to the very end - and make sure palliative services are line up now (district nurse/Marie curie/hospice). These people were amazing and made the end incredibly peaceful for my dad.

It might help to get in touch with the AMMF who not only can advise on best treatments/second opinions but also have a message board full of amazing people who can advise on the multitude of ‘smaller’ issues that crop up.

2littleonesx · 01/08/2023 22:46

Thank you both so much for taking the time to reply and I am sorry you have experienced the same. Life is cruel.

Please could I ask what to expect in the late stages? Xxx

OP posts:
winterchills · 01/08/2023 23:19

Absolutely horrendous, so sorry!

RosesAndHellebores · 01/08/2023 23:23

@winterchills how unnecessary.

Hugasauras · 02/08/2023 22:01

2littleonesx · 01/08/2023 22:46

Thank you both so much for taking the time to reply and I am sorry you have experienced the same. Life is cruel.

Please could I ask what to expect in the late stages? Xxx

Hi OP, so sorry to hear your news. My mum died a month ago from metastatic breast cancer that had spread to her bones and liver, so although not quite the same origin of cancer, probably a similar pathway.

Everyone is different but I can let you know how things went with us to give you some idea.

My mum was actually pretty healthy and was quite positive about her chances of living quite some time, but in the space of a couple of weeks the tumours on her liver became very aggressive. The last 24 hours were very quick - she went into hospital in the morning with some pain, and it turned out her liver was basically giving up. She was retaining fluid, but didn't want any invasive treatment at this point, so she was given painkillers and made comfortable. Originally we thought at this point she might be sent home and still have a few days/weeks, but as the fluid retention worsened, her breathing became worse and she had to go on oxygen. It was at this point that we entered the final few hours stage, and the doctors were quite clear with us that she would not get any better at this stafe.

She stopped being able to communicate around this time due to the medication. Her breathing was quite noisy, but the doctor said that this wasn't a sign of distress, just to do with secretions and the air passing over them. We felt she was becoming uncomfortable towards the end of the painkiller 'life', so we asked them to up the dose to maximum. When we did this, she settled into a deep sleep and her breathing became quiet but still steady. The doctor said that we could 'speed things up' by removing the bag attached to the oxygen mask that was doing a lot of the breathing work for her. We knew she wanted only palliative care, she had been quite clear, so we agreed to do that. Her breathing continued steadily for a couple of minutes and then got a little erratic, not noisy or panicky, just a missed breath here and there. Then she took a breath out and just didn't take another one in. About 60 seconds later she took one more breath and then no more.

We sat with her for a while before letting the medical staff know, and they came and disconnected all the medical equipment and then left us to sit with her for as long as we wanted. Her skin got a bit mottled after a while and she started to get cold, and at that point we decided we should get home (it was 4am) and the doctor came in as we left to do the various checks to declare her dead.

Sorry if this is a bit long and too much information, but I had never been with anyone at end of life before and had no idea what to expect, and actually I found it less traumatic in some ways (it was peaceful) but more traumatic in others (I keep getting flashbacks to being in that room with her after she had died).

If your mum is lucid and able to communicate etc just now, I would get some practical stuff in order if at all possible. Try and talk about funeral plans, it's awful but it's even worse trying to plan a funeral when you don't have any idea what the person wanted. My mum left instructions, which made our lives so much easier and we knew we were doing what she wanted. Make sure you know where financial information, birth certificate, etc. is if possible.

My mum had a copy of this on her laptop. I haven't read it all as I found it after the fact, but the fact she saved it suggested she found it useful: https://www.royallondon.com/about-us/how-we-are-run/mutuality/how-to-die-well/

There is a Before You Go section which has practical and emotional stuff and also stuff about dealing with things after death.

On an emotional level, use the time you have now to say whatever you want to say. Don't wait until you think it's the end. We didn't think it was the end and it turned out within hours that it was, and there are things I would have liked to say to my mum and conversations I would have liked to have had that I wish I'd had earlier.

This might sound weird, but make sure you have recordings of her voice. I was v upset as I thought I didn't have any and would forget what she sounded like, but then I remembered she had sent various videos on WhatsApp for my young DD, and I was able to retrieve those and back them up so I will always have a record of her voice.

Use the time you have to spend as much time with each other as possible. Leave no regrets about things unsaid or time unspent. And if you are with her when she passes, as horrible and upsetting as it is, it's also a profound privilege to be with someone when they begin their journey onto the next phase of whatever there is, whether you are religious or not. I'm not, but I found that it was quite a spiritual thing almost, as well as being deeply, deeply sad and difficult. Take the time to be present in the moment, don't panic or rush to get the medical staff - there is no need to hurry in that moment. As she is passing, take the time to recognise that you are with her, that you are together as she is embarking on the next phase of her journey, whatever that might be, and allow yourself time to sit there and take in the moment. There's a shitload of stuff that comes after, but it will come regardless, so take the time when it's happening to be unhurried.

Sorry, this is extremely long, but it's fresh for me and I hope some of it at least is helpful. I'm thinking of you and your family, it's an awful, horrible time, but make the most of the time you have and leave no words unspoken about your feelings.

How to Die Well book - Royal London

Spearheaded by Royal London, How to Die Well is a book of insightful essays, inclusive cultural conversations and all-important resources for anyone dealing with death. Register now to get your free digital copy.

https://www.royallondon.com/about-us/how-we-are-run/mutuality/how-to-die-well

maxbabi · 02/08/2023 22:19

Hugasauras · 02/08/2023 22:01

Hi OP, so sorry to hear your news. My mum died a month ago from metastatic breast cancer that had spread to her bones and liver, so although not quite the same origin of cancer, probably a similar pathway.

Everyone is different but I can let you know how things went with us to give you some idea.

My mum was actually pretty healthy and was quite positive about her chances of living quite some time, but in the space of a couple of weeks the tumours on her liver became very aggressive. The last 24 hours were very quick - she went into hospital in the morning with some pain, and it turned out her liver was basically giving up. She was retaining fluid, but didn't want any invasive treatment at this point, so she was given painkillers and made comfortable. Originally we thought at this point she might be sent home and still have a few days/weeks, but as the fluid retention worsened, her breathing became worse and she had to go on oxygen. It was at this point that we entered the final few hours stage, and the doctors were quite clear with us that she would not get any better at this stafe.

She stopped being able to communicate around this time due to the medication. Her breathing was quite noisy, but the doctor said that this wasn't a sign of distress, just to do with secretions and the air passing over them. We felt she was becoming uncomfortable towards the end of the painkiller 'life', so we asked them to up the dose to maximum. When we did this, she settled into a deep sleep and her breathing became quiet but still steady. The doctor said that we could 'speed things up' by removing the bag attached to the oxygen mask that was doing a lot of the breathing work for her. We knew she wanted only palliative care, she had been quite clear, so we agreed to do that. Her breathing continued steadily for a couple of minutes and then got a little erratic, not noisy or panicky, just a missed breath here and there. Then she took a breath out and just didn't take another one in. About 60 seconds later she took one more breath and then no more.

We sat with her for a while before letting the medical staff know, and they came and disconnected all the medical equipment and then left us to sit with her for as long as we wanted. Her skin got a bit mottled after a while and she started to get cold, and at that point we decided we should get home (it was 4am) and the doctor came in as we left to do the various checks to declare her dead.

Sorry if this is a bit long and too much information, but I had never been with anyone at end of life before and had no idea what to expect, and actually I found it less traumatic in some ways (it was peaceful) but more traumatic in others (I keep getting flashbacks to being in that room with her after she had died).

If your mum is lucid and able to communicate etc just now, I would get some practical stuff in order if at all possible. Try and talk about funeral plans, it's awful but it's even worse trying to plan a funeral when you don't have any idea what the person wanted. My mum left instructions, which made our lives so much easier and we knew we were doing what she wanted. Make sure you know where financial information, birth certificate, etc. is if possible.

My mum had a copy of this on her laptop. I haven't read it all as I found it after the fact, but the fact she saved it suggested she found it useful: https://www.royallondon.com/about-us/how-we-are-run/mutuality/how-to-die-well/

There is a Before You Go section which has practical and emotional stuff and also stuff about dealing with things after death.

On an emotional level, use the time you have now to say whatever you want to say. Don't wait until you think it's the end. We didn't think it was the end and it turned out within hours that it was, and there are things I would have liked to say to my mum and conversations I would have liked to have had that I wish I'd had earlier.

This might sound weird, but make sure you have recordings of her voice. I was v upset as I thought I didn't have any and would forget what she sounded like, but then I remembered she had sent various videos on WhatsApp for my young DD, and I was able to retrieve those and back them up so I will always have a record of her voice.

Use the time you have to spend as much time with each other as possible. Leave no regrets about things unsaid or time unspent. And if you are with her when she passes, as horrible and upsetting as it is, it's also a profound privilege to be with someone when they begin their journey onto the next phase of whatever there is, whether you are religious or not. I'm not, but I found that it was quite a spiritual thing almost, as well as being deeply, deeply sad and difficult. Take the time to be present in the moment, don't panic or rush to get the medical staff - there is no need to hurry in that moment. As she is passing, take the time to recognise that you are with her, that you are together as she is embarking on the next phase of her journey, whatever that might be, and allow yourself time to sit there and take in the moment. There's a shitload of stuff that comes after, but it will come regardless, so take the time when it's happening to be unhurried.

Sorry, this is extremely long, but it's fresh for me and I hope some of it at least is helpful. I'm thinking of you and your family, it's an awful, horrible time, but make the most of the time you have and leave no words unspoken about your feelings.

What a beautifully written post.
My sister died of secondary liver cancer Christmas day last year and as you say it was a privilege to be able to be with her as she finally passed. Heartbreaking.
Grief is dreadful though.
OP I'm so sorry
Cancer is funking disgusting.

Sandrine1982 · 02/08/2023 22:27

Following

Run4it2 · 02/08/2023 22:55

My sister was sedated and intubated in her last two days as she was distressed with her breathing. She was very peaceful up to the end as a result. It was a privilege to be with her as she died, but also one of the hardest things I've ever done.

I agree it's lovely to have voice notes - my sister was an avid WhatsApp voice noter so I have loads about all sorts of silly things. I love playing them back.

We tried to be cheerful in the hospital with her when she was still conscious as she was optimistic to the last and didnt need people crying over her. We had lots of hospital laughs which I hang onto.

Sending hugs. Take deep breaths. Live in the moment x

2littleonesx · 03/08/2023 13:44

Thank you so much for all your replies and what a beautiful way to describe the last moments.

This is was is scary, the unknown. Walking in an utter blur at the minute :(

OP posts:
ThatDreamSheep · 03/08/2023 13:55

My Dad was diagnosed with this cancer and told 6 months. He did have some aggressive treatment and we had a wonderful 2 more years with him. It's horrendous, sending you all my love because I know how devastating it is 💓

LatteLady · 03/08/2023 14:18

Yes, I have been through this with my mum and my sister. This is going to become your time for planning, if your mum does not want to discuss her treatment and funeral with you face to face, ask her to put it in writing for the family.

Now some of the grimmer more practical things, ask if there is anyone she wants to say goodbye to or resolve a dispute with, now is the time to do it. Also, call your local undertakers to do a price comparison, they will not think you are weird, it is actually much easier than when you are totally grief struck. Also ask your mum about music, it makes life a lot easier if you know what she wanted. Get out old pictures and mark up who they are for your family.

Say thank you, we often say I love you but thank you, not so often. As her mets have spread to her liver, she will probably prefer little meals, and want odd things at odd hours, we cooked chips for breakfast one day. Give people half hour or 15 min slots so she does not tire too much. There will be a lot of waiting, so have something mindless to occupy your time too.

Finally, if she is at home and in pain that you cannot manage, call your MacMillan or hospice nurse, they can prescribe morphine whereas Locums cannot. If you do get a morphine script, call the chemist to check that they have it in stock... my sister had to go to three pharmacies to get it for my mum. And one last thing, ask the nurses to show you how to change the sheets with your mum in the bed...

And now look after you, this is a lot to take on, when people offer help take it, whether it be shopping, washing or making a meal, it will take the pressure off you and make them feel better.

KPops22 · 03/08/2023 21:18

The one thing I would add when my Dad died in of pancreatic cancer in a very short period was the feeling of absolute lack of control - that there was nothing I could do. The other blessing though is that something comes over you - empathy? love? whatever? duty? and you do cope with whatever crops up. Your emotion at the time is not as intense as you fear it may be and you see it through. I don't know if I am explaining myself very well here. I had never seen someone die before and I sat with him for 4 nights before he died. I didn't cry, I got on with the task at hand even if it was just sitting there. I was a support (or so I thought to my Mother ) but I was her whipping dog for his death. She would say things like " I told you he was really ill and you didn't seem to believe me". People are always looking for someone to blame so that was my role too which was very difficult. My Dad's GP helped with various drugs towards the end even if they " may cause the heart to stop" if you get my drift. We had a McMillan nurse the last night and that was useful as she was able to say yes this is it. There are many times that I thought my Dad had died but his breathing recovered. I'm sorry this is in random order as I recall it. I'm so sorry for what you are about to go through but don't be fearful. Bless you and your Mum, sending you strength and love x

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