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.

Oh Pamela I’m so sorry that you’re suffering like this. As PPs have said, you surely can’t be discharged home/to your friend’s house. Surely hospice care is an option?

Sending gentle hugs and a photo of our trainee guide dog puppy who fell out of bed and carried on snoozing.

Sending much love from here. x

Good morning, lovely lady!
So very sorry that you have suffered such pain and hoping that the medics can get it under control quickly.
As pp's have said you made the decision that was right for you and your family at that time and you were very courageous to undertake that journey.

I continue to hold you and your family in my thoughts and send you love and positive energy.

I agree with this. There are definitely other options than morphine for pain relief. Fentanyl patches could also be considered. At the moment, this needs to be the priority I think. The chemo and immunotherapy will be much easier to cope with if you’re not using all your energy coping with severe pain.
Praying for strength for you and your family.
Faith, love and hope as ever from this little corner of Essex. X

So sorry you have been in so much pain Pamela, I really hope they find a solution for you soon. Fingers crossed for the chemo, you're amazing! x

Oh Pamela. My heart goes out to you. I sincerely hope your pain and discomfort gets under control very soon to allow you some peace and clarity. Xx

Morning Pamela.

Today is not the day for putting on any brace faces for Prof. He needs to know how severe your pain is and that it needs to be under control before you are discharged.

Tell him how it is, let him read your posts here if that’s easier. Whatever happens please don’t leave the lovely hospital until
you know that your pain is under control throughout the day and night.

sending love xx

Pamela - from the other end of the world (NZ) I have been following your story and your beautiful words since the beginning. You have such strength and fortitude. NZ is lucky enough to be embracing the Māori world, and one of the things you hear here is Kia kaha, kia maia, kia manawanui , which kind of means "Be brave, be strong, be steadfast". You epitomise this. At such a difficult time, my thoughts are with you (and to be clear - I'm from the UK but these words in te reo are so appropriate).

I’m so sorry you are in so much pain, it’s heartbreaking reading your update. I hope and pray they will find something to give to you today to help ease your pain xx

Sorry you’re having to endure so much pain Pamela, it sounds horrendous.

Please be honest with Prof B so they can get the right team/appropriate medication for you today.

Thinking of you lovely lady, sending love and hope xx

I'm so sorry that you're in so much pain and have had an awful night. Please, as others have said, be honest with the medics about how you're feeling. Realistically, what benefits will chemo give, or is it going to create more awfulness? I would be having a big think about whether it's worth it if it's not going to improve things.
Holding your hand and thinking of you and Kerr, and your family back home.

I’m sorry that you are going through this crap.

I'm so sorry Pamela, that is super shit. When my mum had cancer and end of life care it was so frustrating that they couldn't get the pain under control properly as living with that level of horrendousness makes you want to give up anyway.

From my experience with a family member things can turn better fairly quickly and I hope this is the case for you. If that doesnt happen, know this - when my mum died I was young and she was the most amazing mum. The pain of losing her was hideous but 7 years on and the pain has lessened and I use the tools she gave me in life Every. Single. Day. She lives on and has an impact on my life and my children's lives constantly and in that sense, she never really went. I am so glad she is at peace and better a shorter fulfilling life than a long unfulfilled one.

Thinking of you and sending so much love

Xx

This sounds like severe neuropathic pain. It is often unresponsive to opiates.

Ask if they could do a coeliac nerve block

Just want to say how bloody brave you have been and continue to be - please like so many others have said get the pain management team on this as soon as you are able. And yes ask the questions regarding chemo and what difference it will make - you need to be free of pain most importantly and you have made the correct decisions based on the situation so far and I believe you and your drs will continue to do so .

Faith Hope and Love

Xxx

I have nothing to add that has not already been said as you have had some lovely caring advice, I hope the can alleviate all if not most of your pain.
Thinking of you still x

I'm so, so sorry you are having to endure all this pain, it sounds Medieval and I hope that today they try alternatives as the opiates clearly aren't working.

I really hope that they can do something to help today. We're all rooting for you here. xxx

Oh gosh that sounds fucking awful.

Sorry if I've missed this info but do you currently have a syringe driver to deliver constant pain relief and anti nausea etc? My mum used to carry hers around in a handbag, it was brilliant and allowed her to get on with life rather than lying in bed in agony. She also used to sometimes have a small dosage of midazolam running through it to help anxiety and to aid her sleep.

You really shouldn't have to be in this much pain, I'm angry that no one seems to be getting it under control for you. They can try other drugs apart from morphine or in addition to it - think my mum had fentanyl and another medication for nerve pain too.

Praying they help you today and you can get some rest and some comfort from what sounds like absolute hell.

Pamela, I’m so sorry you and your family are going through this and you are in so much pain. Praying for you and thinking of you constantly. X

So sorry to hear you have had such an awful night Pamela. My heart goes out to you. And to poor Kerr.
(My husband lost his last wife to breast cancer & now has to help me through bowel cancer, its so awful for loved ones seeing us suffer.)
I really hope you can get your chemo today, & I hope it works fast.
Sending love & hugs & a picture of my daft cat, who loves a delivery. My stepson was trying to take his trainers box upstairs & she jumped back in it 3 times while he was trying to pick it up. 😄

Oh Pamela love. Last night sounds unimaginably difficult. Sending so much love xx

Darling Pamela, I have no words, I thought being in a caring medical environment would bring you hope and a new lease of life but the pain you are in sounds intolerable. You owe nothing to anybody. Please ask them for help, share your fears, get reassurance and substantial pain relief and make your own decisions. Whatever you decide will be brave.
with love Caroline

Just thought I'd repeat this from SecretDoor in case it might be overlooked

This sounds like severe neuropathic pain. It is often unresponsive to opiates.

Ask if they could do a coeliac nerve block

Oh Pamela I'm so sorry but not entirely surprised to read your latest updates. You definitely did the right thing coming to London when you did but would agree with the others on this thread that you need a full and frank discussion now about what chemo will achieve, how it's likely to make you feel etc.

this is clearly a very aggressive cancer you have. Is the chemo likely to stop it in its tracks or is that impossible?. I've never gone through chemo myself but from watching friends who have I know how gruelling it can be. But they were NHS and I know private chemo uses better more expensive drugs so perhaps that won't be such an issue for you. You're clearly very unwell despite the truly beautiful photos you post of yourself and I would be concerned you'd find chemo very hard.

Whatever you decide, we will still be here supporting you. I send you much love as ever
Penny xx

Oh Pamela I’m so sorry that you had such an awful night. Hopefully it has been your darkest one. Xxxx

I've been following your posts and you (and your family) have not been far from my thoughts and prayers each day. Please please be upfront with the doctors. Make sure they know about your pain and discomfort so that they can tweak the pain meds for you. I'm a nurse and would be horrified if one of my patients was trying to put on a brave face. I really hope that the chemo goes smoothly, and that the pain gets under control. Lots of love xxx