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

[WilsonMilson]

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

You may already have this but if not can you ask for a syringe driver? My father had one for many months and it was the first time they managed to get his pain under control and it gave him back so much more quality of life. It's not standard protocol but honestly it made such a big difference to him having consistent pain control alongside the oral top ups.

I so sorry beautiful woman. I hope you managed some sleep despite your pain which sounds unbearable. This is so awful, I hope you find enough strength for your next steps my lovely lady xxx

It’s a changing situation, for the last 2 days my pain was much better controlled and Prof B thought I would be more comfortable leaving tomorrow to stay at my friend’s. There is only so long an insurance company will pay for in patient treatment too, so there’s that, and Prof B is so gung ho about everything. Doesn’t help that I put my best face on for him as I really want the chemo treatment.
It’s just been through the night that it’s been so bad, so I can’t expect an instant solution, it’s just shit that it’s the night before chemo. It’s probably the port that’s aggravated everything, but who knows.

I’m left with, have the chemo it’s what you're here for but may kill you. Don’t have the chemo, certain death and why do you bother to come and get a painful drain and all sorts of uncomfortable things including leave home.

I guess they only discharge me tomorrow if I’m deemed well enough. Don’t know, can’t even think straight.

I'm so sorry Pamela. The depth of your distress is so evident in your posts. It's awful.

I think you need to have a very direct Ave honest conversation with your team regarding pain levels & management options, based on where you are at at this moment in time.

It's unspeakably cruel. My love & thoughts to you - and Kerr, Jacob & your mum. ❤️

You are in a place most people never are. You have questions most people will never have to answer. I am so so sorry.

I am wishing you pain relief. For sleep, For guidance and a clear head. And a path.

I know you have the love of your people.
And so many others.

Try not think right now Pam. Try to rest.

xxxx

I am so so sorry to read your update this morning Pamela 😔😔😔
Here’s my hand….. to hold yours just for a moment.

I'm so sorry too Pamela. I just so wish we could all take a little of your pain away for you. You are one very brave and remarkable person and I'm sending you, Kerr and Jacob all my love and praying you get some pain relief soon xx

So sorry Pamela I'm hoping you can go for chemo and start improving x

So sorry to hear what a terrible night you've had. I hope you can speak to the right person asap about the pain, getting answers as to why the pain relief isn't cutting it and finding an alternative. That's the absolute first priority.

I can understand the reasoning of wanting people to be in their own home (or in your case, at your friend's) in between treatments and if there's no reason for constant nursing, but not in the condition you're in, in agony. We're all thinking of you. I hope the right medical person is with you right now, dealing with this. Is Kerr awake to advocate for you if you don't feel able to?

If they can get the pain under control and your chemo session goes smoothly, I totally get that you might feel happier to be at your friend's - hospitals aren't great places to be, even with wonderful staff! - and it might feel easier spending time with your family in a non medical environment. But you're clearly not ready for that right now. Keep holding on.

Pamela, I am so sorry to hear you've had a rough night. Between the pain, lack of sleep and lack of food, it is no wonder that you're struggling to think straight and that you've had some bleak thoughts. I'm glad you can share them with us.

The good thing, from everything you've said, is that you are in the best place to receive top medical care. You won't be able to fool Prof B. He would not suggest a treatment or intervention if he didn't think it may be beneficial and that it is clinically indicated for you. It sounds like the plan for you may change from day to day, depending on how things are going. So let's see what today holds.

I'll be keeping you in my thoughts and have a candle lit for you. ❤

I am so sorry you are in so much pain and I hope they get it under control today. Slow release can be increased quite a lot from the lower starting points. Ask about OxyContin and oxycodone. the first is slow release the second for top ups. can kerr get yku a got water bottle? Ir would provide comfort and add to the pain relief by helping to relax your muscles. Sending love and comfort.

Thinking of you often and sending love xxx

I'm so sorry you have had such a bad night. I think we all wish we could take the pain away both you and Kerr. He is made of strong stuff that man, I can't imagine having to watch my husband suffer like this.

I will be holding you all in my thoughts today and praying that you can start the chemo.

Love and light ❤️

Sending strength at this time

Pamela I'm so sorry it's so hard. It is a nightmarish situation. Sending you a lot of love for this morning x

Good god Pamela, you can’t be discharged in that state. My mum was going to be sent home from hospital at one point when she was very ill with liver cancer and I was utterly terrified because I didn’t know how we would cope with her pain by ourselves. I wanted medical people around us.

Can they discharge you to a hospice instead? By the sound of it, hospices are better at dealing with pain anyway.

Oh, Pamela, how really awful for you. I hear your distress. I really hope they can get on top of the pain for you, at the very least, so you can rest and get a better day today.

Your strength amazes me..... keep going x we're all praying for you x

Praying for you Pamela, 🌻xxx

I wish there was something I could say or do to help. So sorry Pamela. I hope so much that they can get your pain under control today and the chemo can go ahead.

Sending you lots of love ❤️ I hope they can get your pain under control and that you can rest xx

I’m so sorry that you are suffering so much, sending the biggest, gentlest hug.

Sending love to you all, Isabella xx

Don't think anything you have done is a mistake, you are fighting to survive. Chemo is going to make you feel horrendous with nausea but suppose that's nothing compared to your pain. I really hope you can have the strength to push you pass this dark shitty time and when you are sat around joking and laughing with family this is all a distant memory. You can do it, Pamela. ❤️

Pamela I am so sorry you are in so much pain. what you are going through is just awful and your despair comes through in your updates.
You made the right decision at the time not only for yourself but for your lovely family, you gave them hope.
You say it’s a changing situation so I hope today it changes for the better and your pain can be managed. Faith, hope and love, we are with you x