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Pamela - Bile Duct Cancer, thread 4, London has given me a chance!

1000 replies

WilsonMilson · 08/07/2023 13:35

New thread as I see the old one is about the run out.

OP posts:
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74
Jennalong · 12/07/2023 05:25

@Twinsmummy1812

awww hope you were the one taking the photo ? The love in his eyes is beautiful.

Ollifer · 12/07/2023 06:05

Morning Pamela, best of luck for today 💐💐💐

Mummyoflittledragon · 12/07/2023 06:15

Jennalong · 12/07/2023 05:25

@Twinsmummy1812

awww hope you were the one taking the photo ? The love in his eyes is beautiful.

I agree. Such a lovely soul.

Good morning Pamela. I hope everything goes well today. Xx

WilsonMilson · 12/07/2023 06:31

Darkest of all nights. I can’t sugar coat this one, it’s been the worst night of my life pain wise by a long way. I’ve had unbelievable pain in my upper back, the sort that makes of practically impossible to take a breath, and my heart rate is through the roof. I’ve had the slow acting morphine and I’ve also had everything else I’m meant to, took what felt like a bunch of oramorph top ups during the night but at a few points was practically still screaming with pain. I think it’s to do with the portacath insertion as the pain is at the back of that and right lung areas at back - is if a blood clot, is it just settling, has it annoyed nerves? Do not know but do know I simply cannot get into any comfortable position at all. Kerr is beside himself and just so worn down by it all. He was up with me a lot but sleeping now.

I’m just so sick of being mutilated, drains coming out of me, making it hard to do anything normal. The swelling in my body is beyond belief, I can hardly take a few steps for the solid feeling in my legs and the distension of my abdomen. I have absolutely no clue how the hell I can possibly do chemo today. It’s at 12pm now, was meant to be 9.30am but got delayed. And yet if I don’t, then what? Nothing gets any better and I die. Maybe I die anyway - I certainly don’t want to carry on enduring this. I just can’t. I am in actual hell, the sort of which I could never imagine possible. I’ve seen a few of my elderly relatives die and it wasn’t like this.

Not going to lie, I prayed for release during the night, I prayed to be taken away from this increasing hell. I wonder constantly if I did the right thing coming here or if I would have been more peaceful at home under hospice care. I am sick of this hospital as lovely as they are. I can’t eat much at all, I’m so grateful for the pain free moments in the day, which I was hoping were becoming more easy to find with medication, but I’m back to before square one and I’m defeated and scared - if morphine doesn’t even work, then what? It also makes me feel sick, despite having anti sickness stuff. I keep thinking that no one would let a dog suffer this. I just want them to help me slip away painlessly now.

Being discharged to friend’s house tomorrow how can I go in this shape? Currently sitting on the edge of the bed not knowing what to do with myself and using writing this down as some sort of futile distraction. Just want to sleep peacefully.

OP posts:
Iwantanapnow · 12/07/2023 06:34

Oh Pamela
You have endured so much. I have no words of comfort for you other than to say that we are here supporting you. Much love to you - you are beyond brave.

SerenadeOfTheSchoolRun · 12/07/2023 06:36

I can’t imagine how hard this is for all of you. Sending love and praying for strength and pain relief for you.

WaterWall22 · 12/07/2023 06:40

You poor thing. How horrible. Hang on in there. Thinking of you. Xx

GreatBigBeautifulTommorow · 12/07/2023 06:42

Speak to the hospital team, if your pain is no where near under control you shouldn’t be discharged.

there are lots of different anti emetics for nausea and options for pain control.

sending pain free thoughts 💐

petuniasandpetals · 12/07/2023 06:42

Hi Pamela
I am so sorry that you are in such a bad place. It's truly terrible what you are enduring. I have no words to offer but I just feel I wanted to reply quickly so you can see my message.
Honestly...how can anyone know, ever if they are doing the right thing? All choices have both upsides and down.
You have the hope of life but are in agony. The other way you had no hope.
Whatever you choose know you can be certain that your family know you tried your upmost to fight.
You may have a better day. I do hope so, I know there have been some moments of relief for you.
I am an amputee and chose a level of amputation that meant I endured much more pain than I needed to. I know that's not the same situation as yours but I wonder too about the choices I made.
My best friend died this year of breast cancer and felt she had to keep fighting for her family. As it was she succumbed to an infection but I know that was not entirely her choice.
Awful times - sending you great hugs x

Skinnermarink · 12/07/2023 06:43

I must be misunderstanding because they can’t discharge you in that state, can they? Why would they do that??

daisies30 · 12/07/2023 06:43

Dear Pamela, what a nightmare for you , the pain sounds intolerable..your family and mumsnet supporters are holding you tight ..the doctors will know what they are doing & I'm praying for relief and a good sleep for you xx

WinchSparkle80 · 12/07/2023 06:45

Oh Pamela this sounds so difficult. I wish you nothing but love 💕 can you get stronger pain relief? is there anything better than morphine?

You are here to fight another day and sending you all the strength to fight through today… one day at a time 💚💚💚

Munchyseeds2 · 12/07/2023 06:50

I wish there was something I could write to make you feel better😢
They can't discharge you in this state, maybe back into NHS or hospice for respite and pain control?? X

girlswillbegirls · 12/07/2023 06:51

Dear Pamela. I'm a terribly sorry. The doctors should be looking at pain management new options as soon as possible. I really hope they will find a good drug combination that would allow you to have your much needed sleep. I am going to keep praying for you today to find some comfort and some rest xx

Lougle · 12/07/2023 06:53

That is incredibly difficult for you, Pamela. Have they given you a prognosis of how likely the chemo is to help? I don't think you're unreasonable for wanting it all to stop and I think it's worth asking those difficult questions about your options so that you feel that you are still in control of the process.

Being discharged in acute pain is not acceptable, so I hope they get on top of it today.

Needapadlockonmyfridge · 12/07/2023 06:58

Pamela I am so sorry you are in so much pain.

I would agree with others; surely they can't discharge you until pain is under proper control?

I hope they sort that out for you PDQ.
Xxx

HaveYouHeardOfARoadAtlas · 12/07/2023 06:59

I’m sorry it’s been such an awful night. I think definitely talk to them, tell them you don’t feel well enough to be discharged/that you’re worried about pain management and see what they say. I don’t think they should discharge you without better pain control l

Skinnermarink · 12/07/2023 07:00

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Letsgoforaskip · 12/07/2023 07:01

I am so sorry to hear of your extreme suffering; as you say, no loving creature should have to endure this. Sending you all love and rooting for today to bring hope, peace and rest. 🌷🌻

Willmafrockfit · 12/07/2023 07:02

we are with you and your family Flowers

Pansypotter123 · 12/07/2023 07:04

Sending love 💕

GnomeDePlume · 12/07/2023 07:05

Another one thinking of you.

The decision to go to London was the right decision for you at that time. It wasn't a mistake.

I'm wishing you peace this morning. The picture is of sunflowers taken on my allotment last year. Sunflowers turn to face the sun throughout the day. I hope you can find a little sunlight to turn your face to today.

Pamela - Bile Duct Cancer, thread 4, London has given me a chance!
Ohpleeeease · 12/07/2023 07:05

Reading your update and holding your hand, so so sorry you are suffering xx

Fuckitydoodah · 12/07/2023 07:06

It seems utter madness that they would contemplate discharging you as you are. I hope someone sees some sense on that front.

It sounds like hell. I hope this is a case of things being worse before they can get better.

I'm so so sorry you are having to endure any of this. Life can be unbearably cruel.

Sending you lots of love and hope ❤️

Martamaybe · 12/07/2023 07:08

Thinking of you . I hope so much that today is a better day and the pain management is sorted out . Like others I don’t see that you can be discharged in so much pain . Bless you and your family.

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