Pamela - Bile Duct Cancer (last thread pancreatic and liver)

[WilsonMilson]

Hi everyone, I’ve created a new thread as I am overwhelmed to see that the last one is full. You have all filled me up with your hope and encouragement. I’m keeping going as long as I possibly can!!

I am so so sorry to read your update. You have been let down so badly.

I was so angry for you last night, I could not write. (I have been since about one week in, tbh)

Now I am beyond words. What a fucking shitshow.
Is there anyone Kerr can complain to RIGHT NOW?

Still waiting, it is ridiculous.

I am sending you so much love, you are a much stronger woman than me.

I've just caught up with your thread. Not the news anyone has been hoping and praying for. Here is a rose with love from my garden. I wish I could give it you in person xx

Good God that is absolutely inhumane. I dont know what else to say Speechless Im so sorry you are being messed about like this and left in so much pain. It reads like stalling tactics on their part.

Oh Pamela, how monumentally shit. I'm so sorry today's meeting was so awful. I can't believe how they are letting your pain get so bad. Everything you read about treating cancer suggests that even if there is no cure, the pain can be effectively managed with strong drugs.

I'm praying every day for you for a miracle and that the London hospital team will come to your rescue. You have shown such incredible courage.

With my love, to you and your boys,
Karen xxx

I am truly sorry to hear this. And incredibly angry on your behalf. A monumental let down but don't waste precious energy on complaining now- that can be shelved for another time.

If there is anyway you feel you can make the journey to London, it seems like it could be the option with the most hope of positive outcome. If flying feels unrealistic, could you consider someone driving you there and getting the ferry? I know that is a much longer journey, but perhaps you could hire a large car/ van which you could lay down in. You could do it in a day. Hopefully, the hospice will provide some top-drawer pain relief which will enable you some headspace to consider your options.

Sending nothing but strength and love your way x

This is so shit. I’m sorry you’ve been let down so badly, it is so unfair. I hope Dr Bridgwater replies quickly. X

Oh Pamela, how devastating for you and you family, and all that time wasted with no one really coordinating your case.
If you have any spare effort left, put it into somehow getting to London. What's the worst?
I'm so sorry. I hope they get your pain under control tomorrow.

No words other than to say holding you in my love and thoughts xx

Really sorry to hear this news Pamela - I commented on the last thread and have followed your posts hoping you would at least get some treatment. I have also been astounded at how long things have been left. I agree with previous posters that sometimes it is worth kicking up a fuss even if not in your or your family's natures - and in this case maybe worth demanding to know why you have to wait another 6 days for a stent (if your husband didn't already do this). In the meantime I agree it is almost more shocking you have not had your pain control addressed and still have to wait until tomorrow for this - I really really hope this at least gets sorted out asap. Sending you good thoughts in the meantime from Yorkshire and hoping for some better news.

I am so so sorry, Pamela. I have been reading your threads, but not in disbelief like others, sadly, in recognition. I have stage IV cancer & very many similar delays & horrific experiences in the NHS. I thought I would die in hospital a year ago - I spent 4 days in A&E & it very nearly finished me off. I did eventually get well enough to have some chemo for 6 months, which didn’t work, but am now under the care of the Marsden in London & it’s a world of difference. If you can get to London by any means possible (the van/ferry idea was good?) you will get better treatment. But I totally understand you are in a tunnel of unreal, unimaginable pain and horror & fear & the idea of going to London must seem as far from reality as going to the moon.

You are so articulate despite your pain, and no, you don’t owe anyone positivity. I love how you put that. From a practical standpoint - please ask your GP for morphine - now. Can Kerr call them, & sort it? It’s urgent. No human being should be left in that much pain for so long. You should get some liquid oramorph to be used for immediate relief & they can also prescribe slow-release morphine tablets but you will need to use the oramorph & top up with that when you are in most pain as the tablets take a while to work.

Oh my sweet Jesus that is so sad and so unfair on you and your family Pamela. Feeling written off is the last thing you need right now.

On a practical note, I personally don't see much point in complaining. It will take everyone's time and energy and it will not change the past. You need to focus on feeling better and enjoying the time you have with your family.

It does sound like London might be the best hope? Please will you consider it and see if you can manage it. Let us help you financially so as the money you have can be used by Kerr and Jacob after you eventually leave them so as they can do something special together to get through the difficult times ahead. I also live in the outskirts of london and would happily help with anything practical you need. I do understand you want to be at home though. What does Kerr think ?

Could the London man come to you? 💔xxx

Can you send this (and the previous threads) to your MP?

Pamela that is monumentally shit I am so sorry 💜

Oh God Pamela I am so sorry. This man at the end of a long line of no one taking any responsibility for your care has just made everything worse. No wonder you feel you can't fight on. Please God may you get effective pain relief so you can think straight. And please God may some compassionate medical professional/oncologist take over and actually help you. xxx

Pamela, please be real. Be what you are really feeling and not what you think people think you should be feeling. You are a human with human worth and there is no "wrong" way to do this.

I am so, so sorry for how you have been treated. You do not deserve it. Nobody does.

The world is better for your being in it. One look at your beautiful family makes that clear.

Thinking of you and sending love xx

Oh Pamela! I want to shout at Dr Vass (on your behalf) and say that he needs to refer you now to the oncologist and stop sounding so defeatist when it's clear that he has been part of the dismal failure to care for you properly.
It's good news that he's prepared to do the stent for you but where is his sense of urgency?
I do know from my own experience of cancer that they seem to dripfeed you bad news and then suddenly seem to get a kick in the doodaas and start doing something effective. I do hope that London can offer a more positive approach even if they have to liaise with Antrim to put it in place and save you a journey when you are feeling so poorly.
That you are angry is to me a good sign because it feeds positivity even in the shittiest of circumstances and when you have effective pain relief that will help you to feel better in yourself - the hospice staff really are brilliant when it comes to pain management. Take heart from the MNs - we have your back and will support you in whatever way we can. Sending you a virtual hug 🤗xx

I am so sorry to hear your news. Hoping for better news from London and that your pain is brought under control quickly.

I hate saying that as you’re all so supportive and positive, but this has been a truly bleak day.

dont you worry about that, you can say anything you want. I wish I had some advice about what to do but I genuinely don’t know what to say. Seems crazy that you haven’t seen an oncologist yet, are there any plans for this?

I am so, so sorry it was not better news
The lack of any sort of joined up thinking/urgency is truly mind blowing xx

I really don't know what to say. I'm so outraged for you. Fucking hell. Unbelievable.
I'm so sorry for your pain, and this shocking situation. 45. No age at all. I sincerely hope you can get to London. Your team sound terrible.

I’m so angry on your behalf at the total incompetence. My son is in the NHS and always tells us to avoid Antrim and go straight to Belfast. Now I know why. I’m thinking of you and hope you and your family get the help you need x

I am so sorry Pamela this is horrendous. I can’t think of anything vaguely useful to say. I just wanted to send love x