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'm so sorry the outcome of today's meeting wasn't more positive. There doesn't seem an adjective strong enough to describe the way you have been treated since your diagnosis. I'm saddened and enraged for you and everything in-between.

I really hope the hospice is able to get your pain under control tomorrow and that it helps with clarity of thought for whatever plan lies ahead.

I'll continue to keep you and your family in my thoughts x

This is utterly barbaric, I am absolutely furious and raging on your behalf Pamela. I am sadly not surprised that you have had to fight for even the most basic of humane care. One would like to think that we can trust the system when our lives are literally on the line but clearly that is not the case.
As a PP mentioned, please ask Kerr to contact your GP and follow up with the hospice.
I can also recommend St Vincent’s in Dublin where my sister in law was treated. She went through various hospitals and did not hold back when she felt she wasn’t being treated correctly and even she was happy with St Vincent’s xxx

I’m so sorry Pamela that you’ve had such a horrific day. I second what other posters have said. You, or your family need to push back hard. I am saying this from experience. Please, please don’t accept waiting any longer. You have waited long enough. I am so angry that you have been so badly let down by the NHS. I am thinking of you all and you are in my prayers. Xx

So so sorry for this update, Pamela. Have been thinking of you and yours, along with everyone else here.

The kindness and warmth towards you, and the anger on your behalf at your treatment delays, are also incredibly moving.

I wonder two things (and do forgive me if this is not the time or place). Could this thread be moved to mumsnet classics, as the outpourings of kindness and love are incredible. Maybe others can draw strength and inspiration from it. Secondly, I'd like to make a donation to a nominated charity on behalf of this, so that some good can come from this madness. For me, I'll donate to the Panzi Foundation - their incredible work in DR Congo at repairing the shattered bodies and lives of women and girls afflicted by dreadful rapes and assaults in the ongoing war there - like the love and warmth towards you and your family here, it is a beacon of light in darkness. https://panzifoundation.org/. Maybe anyone who reads this can donate to a charity of their choice, and it is for Pamela.

Love, as always, Rachael

Dear Pamela

I’m so, so sorry for what is happening to you. Sometimes life is desperately unfair.

unfortunately I have experienced exactly the same situation with my DF a few years ago. its almost word for word. From the awful uncaring nurses in the ward to the delayed MDT meetings where nothing was achieved just loss of hope and despair.

I truly regret not kicking up more of a stink at the time. I tried to get my dad to leave hospital and go home, but he was of the opinion that he was where he needed to be and held the opinions of the staff in high regard. I on the other hand wanted to throttle them.

And then it was too late to move, too much pain, too far a distance. I think the hospital staff conveniently delayed things to make their lives easier and I’m really still angry about that even now, so many years later.

stay home Pamela, surrounded by those who truly love and care for you. Stay home with dignity. I wish you peace and peace for your family in the difficult times ahead.

Thinking of you and sending you and your wonderful family positive thoughts and prayers, dear Pamela.
JoJo - California, US

Still thinking of you and your family, Isabella x

Sending out to you.

I have been through similar with my lovely husband and he stayed at home with us.

I wonder could they get you a hospital bed? We were given one for him. So much more comfortable. And adaptable. It worked wonders.

So sorry to hear your update. How desperate and unfair. Wishing you lots of love and strength x

Oh Pamela, I am so sorry to hear your latest update. Be assured that we will be here for you to listen whenever you need us. I'm thinking of you and your gorgeous family.xx

My heart goes to you and reading today's entry has brought a lot back.

I hope the hospice and family sun management people will really help you. They helped us. And not just my husband.

With much love .

family sum = pain management

So sad to see your update Pamela, thinking of you and your family, sending you lots of strength and love xx💞

Dear Pamela, I'm not usually an optimist, Im very much a realist, but even I read your words and think this CAN get better. Holding you in my heart x

thinking of you
agree with asking for a hospital bed, for more comfort

Oh Pamela
I am so sorry. It sounds like they just keep kicking the can further down the road. I think where there is life there is hope but you must balance that with reality and your own comfort, and also but lastly take into account your loved ones.
It's a terrible time and you owe no one but yourself xx

Dear Pamela. I've been checking in every day and following your journey. I'd so hoped it was going to be more positive for you and I'm so sorry you are in this situation.
This lack of urgency and care beggars belief......my friend had her own cancer journey last year and was at a far less poorly stage when she was given pain relief in a syringe driver. From the pain you described yourself as being in today, I'm assuming you don't have that in place? Unbelievable.....it's the least that should have been done for you. She had a cocktail of pain relief and anti anxiety meds....it really helped her.
I'm sending you a virtual hug and praying you get some situation changing treatment very soon. Xxx

I hope the pain management team organise a syringe driver for you. May your days be peaceful. Sending love across the seas.

Totally awful how you have been so failed by the nhs. I hope you can find a way to be a bit more comfortable so you can work out your next step. Hoping they've prescribed some better pain relief!

Have been following both threads. Just wanted you to know that you are in my thoughts and prayers.

This would not be helpful. This is not your story to share.
Pamela, you are in my thoughts at such a difficult time x

And Pamela has stated explicitly that she absolutely does not want this to happen.

I wouldn’t dream of sharing Pamela’s story anywhere. Sorry, I expressed my anger with Pamela’s heartbreaking situation in a clumsy way. Sorry. I’ll ask for my post to be deleted.

Oh stop 😥