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!!

You absolute gem. The anger is appropriate when you come across this apathetic view from the consultants! I wish you strength and a practical means to get to London to start treatmentX

Pamela I am so sorry that things are not moving quickly enough.

My DM found the itching terrible but the carers would smear her with e45 cream which helped a bit plus cutting her nails down to avoid scratching herself in her sleep.

The macmillan nurse organised a hospital bed to be delivered to her home. I wonder if this might help with your sleeping but I can't say I have ever found them comfy but we did throw a mattress topper on it to make it softer.

❤️

Sending love and prayers to you Pamela - glad you've got some anger in there, it'll help spur you on to get the best treatment available.

Hi Pamela. Sorry to hear your update and how slowly everything is moving. I am shocked at the lack of treatment and the pointless hospital stay you had. I hope you can make some progress at the appointment tomorrow. Love to you and your special family. Take care 💜

It is so sad reading of your anger and frustration with the medics Pamela, and you are quite right to be very annoyed. Surely when someone is as ill as you are, the first priority is to make you comfortable, sort your pain, and arrange follow up as quickly as possible, and of course give you reassurance.

There are prescribed meds available for cholestatic pruritis, which sounds like the itch you are enduring at the moment. I am stunned that this issue, amongst all the rest has not been addressed to give you some relief.

You are in my (and your thread friends) thoughts and prayers, as always.

Hi Pamela,

Lovely to hear your update about doing "normal" family things over the weekend. We lose sight of how important things like that are done we?

I'm raging on your behalf about the treatment you have received over the last few weeks. It's absolutely unacceptable. I'm praying for the new prof to have the same plan as the London prof so you don't have to travel to London. Is there any way to request the two speak to each other??

Kerr sounds like an absolute diamond. This is absolutely in no way comparable but when I first lost the use of my legs and couldn't get upstairs I would have to sleep on the sofa, I would insist my DH went to bloody bed but he would not budge from the incredibly uncomfortable chair next to me as he wouldn't leave me alone either.

Good that Jacob got some fun time with friends too.

Thinking of you always xx L from West Yorkshire

I hope you make some progress tomorrow Pamela. 7 weeks! i dont know what else to say Thinking of you

Yes the fannying about they have been doing for 7 weeks is giving me the rage too

Anger is completely understandable in this situation. Is it worth planning getting to London just in case tomorrow doesn't get the speed of resolution you are hoping for? Just looking at different transport options for you. You only get one shot at life so try and grab control where you can.

Your update, whilst sad and frustrating was lovely as there is just so much love there in your family. I'm glad you have found a way for Kerr to help with the pain and be close to you as well. It's lovely he's sleeping on the sofa with you.. these situations are exactly why we say our marriage vows and he clearly meant his.

Thanks for taking the time to update us all. I've been thinking about you over the weekend and I'm really praying for a positive outcome for you xx

Pamela, I feel the anger for you, I really do. I am so angry that you have been let down by the NHS, i don't understand why that hospital you were in did not transfer you to one that could stent you with their transport facilities.
I really hope your appointment tomorrow is positive and they can place the stent in.
Regarding London, does you BUPA have any cover to travel with a nurse. I only know about repatriations to where you live, but I am unsure if there is that option via medical insurance. It might be worth Kerr calling to ask. And if you need a wheelchair, use one. You will be in a much better state at your appointment that walking if that is exerting you too much.

Lots of love. Thinking of you often xxx

Bless you Pamela ❤️ you are so strong 💪 sending you a big gentle hug 🤗 I hope there is someone reading this with a private jet to get you to London 💕 how about a Go Fund Me page? You so so deserve it xx

For the sleeping - try topping your mattress with a not quite fully inflated airbed. It really helped my dad.

I was just thinking this, the collective might of mumsnet must be able to find a jet for a fairly short flight....stranger things have happened
I hope tomorrow is positive and things actually begin to happen x

If you can't get a private jet 😉then whatever airline is flying you from Belfast to London will (as you probably know anyway), provide assistance all the way, from check in, fast track security, wheelchair, first on, first off and the same at the other end. Just ask for it at booking.

Could someone put out an appeal on local radio to get you in a jet to London ? Honestly people will want to help don’t feel bad about asking . A colleague of hours was given zero hope for her husband and they had young children . She fund raised over £100000 on her own to get him immunotherapy in Germany as the tumour was apparently in the wrong place for the NHS to approve the treatment . We are now 3 years past his abandonment and he is doing ok and is now clear of cancer .

In all the darkness your words bring a lightness. Pain and fear are the darkness- love is the brightness ❤️

Sending love from Bangor and thinking of your lovely wee family. NHS in NI is shocking isn't it? We need an active government! (That's another topic).

Hi Pamela
I can't stop thinking about you and your family.
I hope beyond hope that you have a successful appointment with the doctor tomorrow and that he is of the same mind as the London professor. If not then it has to be London .

I think that someone out there could get you here. I believe someone on Mumsnet will know someone who can get the ball rolling.
Love to you all- you are a beautiful family xxx

You have every right to be angry. Hopefully a credible plan will emerge by the end of tomorrow. xxx

@WilsonMilson I didn't know what to say until now but I kept thinking of you during the weekend. It's completely understabable you feel so angry about how the system is letting you down. With acute cases like yours, its terrible, outrageous and completely not acceptable.
I hope you will be able to travel to London and see that fantastic consultant and follow chemo and immunotherapy under his team. I keep my fingers crossed for you.

I am reading you for a while and just want to say how inspirational you are.
There is so much love and kindness in every word you say, in every sentence.
I will keep thinking about you, sending you love. xx

From a quick look it is around €10,000 for a light plane Carter from Belfast to London. I absolutely would be willing to chip in if others can?

Is it beyond the realms of possibility that someone on Mumsnet has access to a private plane for a short flight? Stranger things have happened and dearest Pamela, if anyone deserves this, it's you and your family.

Praying it won't be necessary and that you can receive the treatment you need in Ireland but it's great to know that you have somewhere to stay in London if necessary ♥️

I can't be the only one who has checked this thread many times today and was so relieved to read your post, even though the content was heartbreaking. I am very angry for you at the wasted time and the apparent disinterest of the consultants. Please garner hope and strength from the posters who have had loved ones in a similar position; so poorly, yet they are now in recovery/had many more years with the right treatment.

Love to you and your family and I hope that tomorrow brings the best possible news under the circumstances xxx

As would I ♥️

first of all, you are bloody amazing…..

dont be proud, set up a just giving page, tell me the link and I for one will donate. If you get no where tomorrow, then London it is.