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.

I'm so sorry to read your posts. Sending you peace and restful thoughts.

This beautiful prayer can be helpful in dark times:

Lord,
it is night.
The night is for stillness.
Let us be still in the presence of God.

It is night after a long day.
What has been done has been done;
what has not been done has not been done;
let it be.

The night is dark.
Let our fears of the darkness of the world and of our own lives
rest in you.

The night is quiet.
Let the quietness of your peace enfold us,
all dear to us,
and all who have no peace.

The night heralds the dawn.
Let us look expectantly to a new day,
new joys,
new possibilities.
In your name we pray.
^^
Amen.

So sorry to hear that you are suffering so much pain.

You and all your lovely family are in my thoughts and prayers. ❤️

I hope the doctors can suggest a good way forward for you today.

You are being so severely tested during your night times Pamela. I’m really sorry for the terrible dilemmas and the doubts which torture now….along with the pain.
Try to sleep whenever you can during the day in between the prodding and poking and procedures.
I’m praying for a small beam of hope, comfort and peace of mind for you to cling on to.
And, for Prof B, I know he has a handle on the physical workings of your body. He believes you have a chance but I’m praying he has some better understanding of your pain situation and personal situation as well.
You are a long way from home and you have indicated that troubles you a lot.
Pamela, if you possibly can, hang on in there and concentrate on the day you can get home again, to your comfy nest in the sun room.
In Wales, we are all still lifting you up.

I'm so sorry to read your updates. I wish I could come and sit with you just for a while.
You are in such an impossible position.

Only update us if you are able to and if it helps you pour your feelings out.

So many people are holding you in their hearts Pamela.
Sending love. xx

Pamela what an awful choice if that's even the right word. I hope you find some relief. Always in my thoughts xx

Thinking of you Pamela x

I'm so sorry to read your update. I keep thinking of you and wishing there was a way to help, aside from prayers. I know little of the process you are going through but just hope you can get through this difficult part and find the light at the end of it. However I know when in the midst of it, it can be hard to look ahead and you just want the pain to end.

I am so sorry Pamela. Please tell your team about all your symptoms and real pain level with your team, esp pain around the port incase it's a blood clot, and they will help make the best treatment decisions.

Sending love and hope you can still get to do chemo if that is the best course of action. Its so hard with cancer there are so many endless treatments and sometimes it's difficult to choose balancing quality as well as quantity of life. But lots of people are here thinking of you and hoping there's a way to make things a bit better.

God that's been a shitty night for you.
I remember working nights and that was awful- waiting for the dawn when the world is still sleeping. I can't imagine what it was like for you and hubby.
Sorry you're suffering @WilsonMilson Pamela.

So sorry things are so wretched for you just now. Really hope they can sort your pain levels out. Sending love and strength. Xx

Im sorry to hear you’re in so much pain. I wish I knew what to say. I know it probably doesn’t feel like it but you did the right thing by going to London - it was the only thing you could do in your circumstances. Jacob will always know you did everything you could. I pray for pain relief for you and the strength to start chemo.

Oh sweetheart, I am so sorry to hear the pain and despair in your last posts.

May God bless you and keep you.
May the light of His countenance shine upon you.
May He grant you peace and relief.

At the moment you were sending out your message, I was hobbling home. The sky had gone suddenly overcast. If you look carefully at the second picture, you might be able to see the rainbow.

Can you ask to see a pain specialist ? Have they suggested fentanyl patches ? At this point I'd be wanting everything they can chuck at it. As you say we wouldn't let a dog suffer like this. ((Hugs))

I'd also be asking instead of discharge to your friends if you can discharge to hospice - they are so much better at this stuff, holistically as well.

Hopefully the chemo reduces the tumour quickly and helps reduce the pain.

Are your family due to arrive soon ?

I’m so sorry about the distress you’re in and the awful night. Please be very, very honest with Prof B and the other doctors about how you’re feeling today.

I’m not saying this is the case here but sometimes doctors can get a bit blinkered to the bigger picture and focus on ‘clinical’ outcomes. As a doctor so many times I have wanted to downplay side effects of drugs/treatments etc because I think it’ll be worth it in the long run but don’t want to ‘put the patient off’. On the other side of the fence my dear Mum died of pancreatic cancer a few years ago and the treatment she had made her quality of life a lot worse in the last months. It changed me as a person and a doctor, and rocked my faith in my own profession. I don’t think any of our intentions come from a bad place, but sometimes ‘first do no harm’ can be forgotten amidst all our medical advances. I’ve just read this back and I hope it makes some sense, sorry for wittering on.

You made the right decision to come to London at the time (the retrospectoscope is a pointless thing!) but now I think you need some very honest answers about what chemotherapy is likely to achieve, and the potential side effects on top of how you’re feeling at the moment.

Lots of love and so hoping today you can be more comfortable.

Lizzie Xxx

Oh lovely. Totally get the putting on a face thing. Also, I'm not a pain management nurse, but I am a clinician and I think they are probably playing it a bit safe with the meds because your liver not being able to metabolise drugs efficiently at this current time.

I'm so truly sorry. I think, as you've come this far, you may regret not having the chemo, again, I would always look into alternative medication and if, when you are feeling a bit better after chemo (I'm positive you will), you want to talk through this please contact me.

Loads of love and strength today xxx

Morning Pamela,

I am so sorry you are in such pain. Sending love for today, I hope the chemo can go ahead and it brings you some relief.

You are in our thoughts and prayers xx

Oh Pamela I’m so sorry you’re in so much pain. I think you need to be honest with the team treating you how bad it is and discuss what better options they have for pain relief for you.

if you don’t you run the risk of the chemo making you very unwell love. They need to know how you’re feeling so they can assess you properly xxx

Dear Pamela, I’m so sorry to hear that you’re suffering so much - it sounds utterly intolerable.
I’m thinking of you often day and night and sending love from the other side of the world. I hope beyond anything that they can start to control your pain so you can have some restful sleep xx

They say the darkest hour is that at which the sun begins to rise - looking at the time of your posting that was you at that moment.
A new day is with us and we are supporting you in every way we can. For some it is a prayer and others a fleeting thought but you have touched so many people Pamela - your smile in those pictures show someone with spirit and we won't let you down.
When you are going through tough times - a friend said to me - Live each day and when that becomes too much - live each hour. When that becomes too much - live each minute.
You do whatever you need to get though this - please don't second guess any decisions you have made. At the time of making them - given the information, thoughts and feelings you had - they were the right decisions. Gentle Hugs xx 💕

Gosh ,I'm so sorry .How utterly terrible for you all .

My only contribution would be that my experience of chemo - quite heavy duty for oesphageal cancer - was not as bad as I feared .The effects are fairly cumulative so the first doses caused me less side effects .The nausea was different to what I was expecting (which was stomach bug/food poisoning type ) and came and went more quickly .And there are good drugs to control it .
Everyone is different ,every regime is different and you are obviously not well already .
But I'm mentioning it anyway ,partly in case there are people reading about to start chemo.
With all love and strength to you and to your family .

Oh Pamela, I keep checking back to see what your latest news is. I can feel the anguish in your words and I am so, so sorry. I second the suggestion to ask about hospice care. It will be less clinical, more comfortable and they are very good at dealing with pain.

I'm going to be shot here, but what is the outcome if you have the chemo, what will it do in terms of extending your life Pamela, did prof B talk about that? As a nurse I've never seen anybody receive chemo in a cancer so advanced Pamela, you sound like you're in living hell. All I say is please ask for the palliative team, your pain will be something that they can really help with. This just sounds bordering cruel, I can't bear to read your updates as it makes me anxious. Pamela im just so sorry you are going through all this. Thinking of you brave lady.

Oh Pamela, I am so sorry, I have no words. I'm just so sorry that you are going through this and suffering so much. I hope with all my heart that they have now eased your pain. Thinking of you xxx

I'm blown away by your eloquence, you are an amazing woman. I'm praying for more strength for you to get through this part of the journey and that there are better things to come...

I am so sorry you are suffering so much. I hope the pain will lessen soon ❤️