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!!

Your post was full of pain - horrendous unmedicated physical pain and almost topping that the unbelievable mental pain of inaction and so much lack of care from the people that are meant to care the most. Some of the pain can be managed though and it is time for the hospice team to come in and get on top of the pain so that you are able to make decisions about what next not clouded by unrelenting pain.

Other people have walked in your shoes but without the skill or the platform to articulate it. You speak for them too and we are all listening and hearing you loud and clear.

Come hell or high water you've got to get to lnd

London. So cross I pressed send in error. Please let us help you.

Would you consider going to Dublin hepatobiliary specialist centre St. Vincent's. I mentioned it before. It is worth a shot, motorway all the way, no flights, and a second independent opinion could be well worthwhile.

There are reciprocal health arrangements/agreements under the Common Travel Area. Not sure what's covered though.

Just a suggestion, and thoughts and prayers with you as always on this awful day for you.
Siobhan, Dublin.

I was so hoping for good news. You have been monumentally failed by the NHS. Heartbreaking you are in so much pain and given so little hope. I hope at the very least the hospice manages your pain.

I am so very sorry you have been failed so badly.

Perhaps the wheels need to be set in motion for the journey to London. This could be unrealistic given your pain is not under control but I send you so much strength in the hope you can muster enough for this trip.

Please do not fake positivity for us. You be as real as you damn well please. Sending much love xxx

Oh Pamela. I am so sorry and horrified that you are not getting treatment quick enough. I can't get over the lack of pain relief.

We are all gunning for you

Love and hand hold
Pamela - Belfast/Brighton

Sorry I've not read the full thread but why all the fuss about stenting you ? It's literally a 5 minute procedure, I had it done a couple of years ago. They don't even make an incision......it would make a massive difference to your quality of life. Would going private be an option ?

Dear Pamela, I'm so so sorry to read your update and I'm so angry about the way you have been treated. Their lack of urgency is just terrifying, I can't believe you're 7 weeks in and no closer to actually getting any treatment. The pain they are leaving you in is inhumane, I'm so sorry. I hope to god there's some way you can get to London. Shame on the health care system that has badly let you down.

I think about you and check for updates every day. I hope you get some help soon.

Sending so much love and best wishes,

Lou xx

Unforgivably shit.

I am so so sorry.

Cry today and tomorrow, think about London - or maybe @keyboardkat 's suggestion?

You don't have to be 'brave' and smiley - you have every right to be furious, tearful and raging. let it out and then let those who love you offer you some comfort. Sending Love from London x

Good grief, this is just shocking. Dear Pamela, I don't know what to say other than I am thinking of you so much and send all my love. You have deeply touched all of our hearts on here. I just hope tomorrow you can receive some actual pain relief. You are a remarkable woman. Xxx

Dear Pamela, I've been reading your messages and I'm so sorry and sad that you have had such bad treatment with the NHS and that you are feeling so ill while trying to deal with this.

It sounds like you need a plan of treatment to get you back up to strength for the chemo, not the hopelessness you are getting. Can Dr Bridgwater recommend anyone near your home who might be able to start this off that he could work together with? To start by getting a second opinion?

Is their anyway you could borrow or hire a campervan as that was you can rest for the entire journey, alternately special assistance can help you at the airport.
Thinking of you and sending lots of healing thoughts for you.

Oh just... So so sorry to hear this, words fail me. Inexpressible.
You sound wonderful, strong and honest while going through the toughest of times.
That feeling of helplessness and not-knowing must be beyond frustrating for you and your family.
Don't forget... don't give up, enjoy your lovely moments when you can. We're all rooting for you. Xx

I hope Prof Bridgewater has some useful suggestions and here's hoping the hospice team can help sort the pain tomorrow

Wishing you strength to get through to Monday and a smooth procedure for the stent.

So they are waiting for yet another week

So sorry that you are being treated in this appalling way. I am a doctor and don’t understand how they can justify making you wait a week for a stent. Stenting is the best option to improve your symptoms and give you a fighting chance at chemo and immunotherapy. I know getting to London seems like the impossible right now but I really hope there’s some way you can manage it. I’m appalled by what’s happened to you and wish I worked where you are so that I could help fight on your behalf. Sending love and will be thinking of you xx

Pamela

I feel ragey for you, but sadly, based on NHS experience over the last 15 years or so, I can't say I'm surprised.

I think you will get more pain relief help tomorrow.

I'm thinking of you xx

I’m so so sorry you are in this situation and I am so angry at the lack of help the nhs have provided. It’s truly horrendous, I wish there was more we could do than offer kind words and prayers ❤just know that there are many of us all over the world thinking of you each day. I hope the hospice team can get you comfortable and free of pain.

Pamela, I am so sorry to read of your update today. You are right to feel every emotion that you do and to feel well and truly let down by the NHS. I have been following your posts from the beginning as my family member was diagnosed at the same time, I am beyond sad / distressed to say we face the same awful INHUMANE delays and we are in London.

Macmillin’s website has an online community with specific cancer forums and I thought I would mention this as you may find it helpful even just to read threads and feel somewhat connected to others going through the same, sadly so many posts share the tone of nhs delay but there is lots of helpful information on there from others and also a friends and family forum for your family too.
Macmillan have a campaign re the NHS delays
https://www.macmillan.org.uk/advocacy/campaigns/what-are-we-waiting-for

As others have said, I hope you have morphine / will have access to it asap. Am so sorry again to hear of your awful time and wishing you more comfortable days ahead of your stent.

I am just so sorry, appalled and incredulous at the abysmal lack of care and treatment you’ve had. It utterly stinks.
I’ve been hoping so hard that you would get better news, it’s so unfair.
Just wish I could think of something useful to say but words fail me so I’m send love and very much keeping you all in my thoughts x

Oh Pamela, I am truly sorry you are being treated so appallingly
Where's the compassion? It's beyond outrageous that no attempt has been made to manage your horrific pain
It's good that Kerr is liaising with Dr Bridgewater. He also needs to contact GP for some urgent morphine for you, which will be slow relief then oramorph for breakthrough pain
You don't need to be positive tell it how it is, if it helps even a tiny bit, you're human with feelings, not a robot.
You, Kerr and Jacob are always in my thoughts
Much love and a very gentle hug
Judith in Wiltshire

Just sending love.