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.

Hi Pamela
It’s important to be realistic now and be honest with them. You might need a syringe driver for pain too.

i hope you get the pain relief you need xx

I'm so sorry to read you have had so much pain during the night.

Thinking of you and wishing you well.

I'm so sorry that you are suffering so much with pain at the moment. I have very little knowledge of how things work with pain management but it seems that they need to be keeping you in hospital until a better option has been tried and tested for you! I hope that you and Kerr are able to shout loud enough to make sure you don't leave until this has been sorted but it must be incredibly hard and draining already. I can't imagine how you are feeling right now but we are all behind you and I hope the chemo today goes as smoothly as possible 🙏 sending so much love and healing thoughts your way warrior woman.

Pamela I’m so so sorry you’re in such pain and hope you get some relief today. Sending you love and strength 💐
Lynda xx

So sorry to hear how you are suffering… life is too cruel for words sometimes.
The most important thing is to get your pain under control so that you are comfortable enough to think clearly again.
I think you/Kerr need to ask Prof B, what he would so if it were his wife/partner and family in this awful situation.
With you every step of the way Pamela.
xxx

Hi Pamela, I’m so sorry you are going through this. I wish with all my heart you get some effective pain relief very very quickly. Sending you strength and peace. X

I hope you find the strength, support and pain relief you need today. As others have said, be honest with the medical team. Don't get discharged to your friend's house without being clear on how and who you will get personal care and pain relief support from.

💐

Honestly I just don't know what to say, it's unbearable to read let alone imagine experiencing 😞 sending so much love and fortitude xxx 💕

Oh my lovely, this sounds so hard. Sending big, gentle, inadequate internet weirdy hugs x

I’m so so sorry you are experiencing such awful pain. I wish there was more we could do, I hope and pray that they can get this awful pain under control for you. Nobody should have to go through this.
I hope you have a more comfortable day ❤you’re fabulous and I am so very sorry that you are going through this xx

Can Kerr video one of these painful episodes so you can show the pain team? It may be the way to show just how much pain you are suffering with at times. Hope the chemo goes ok and you have a rapid response to it. My husband had chemo (for a different cancer) and it started to work very quickly to reduce the tumours and therefore the pain.....x

Thinking of you Pamela and desperately sorry that you are in so much pain. I hope that they get it under control today. I am so angry on your behalf, it’s just completely crap. I watched my lovely dad struggle with the pain, (different cancer, different decade) not much seems to have change. You are in my thoughts and prayers

Dear Pamela, I am so sorry that you have suffered this. You are definitely carrying your cross at the moment. Pain that profound just fills your whole being. One breath at a time, if you can manage it. Pallative care teams will find relief in anyway it is there to be had. If you are released into a hospice, you will have the confidence that they are nearby, if the pain returns. Despair is part of your emotional journey but it is an emotion on the way to acceptance or hope. Your decision will become obvious as you go on, wait for clarity. The past is gone, it's in the future that we live. Hopefully, your future includes pain free time at home again.

So sorry to read your update, I can't imagine how scared you must be feeling.

You have a lot of strangers rooting for you as well as all of your loved ones.

I agree with the suggestion to ask Prof B what he would do if it were him / his wife. They can't expect you to just put up with suffering that much pain. Sending you so much love xxx

Hugs again from Australia. Here's some of my puppies from last year to make you smile.

Beautiful Pamela, my heart aches for you. You have endured so much and your spirit still shines
Have they suggested Fentanyl?
If it is nerve pain which is pure raw agony, would they do a nerve block, so you can start chemo
Wrapping my arms around you.
Much love to you and your Kerr
Judith in Wiltshire

Sending you a massive massive gentle hug Pamela x I read your posts with tears running down my face - keep fighting sweetheart you have come so far and are an absolutely incredible woman x much love and hoping against all hope that you start your chemo and you start to have some release from all of this pain x

Just a gentle hug for you,
from
Sarah.
A Moonraker in exile on the Yorkshire Coast.
💕

Keeping a candle lit that you may have some really effective pain relief xxx

So sorry to read your update.
I wish life you just get easier for you ♥️

No advice to give but wanted to send my love and wishes. Hoping that whatever comes today brings you some peace. Remember how far you've come xx

Hi Pamela, I am so, so sorry its been so unbearable for you. And I totally empathise with that feeling of just being so sick to death of everything hospital-related and being poked and prodded, being so uncomfortable to the point it could make you lash out and irrational with those around you (not saying this is you, but that it would be understandable for anyone in your situation) and just wanting to get out and away from it all.

I can also totally understand you questioning your decision to even go, but you know in your heart the answer. You know you deserve to give yourself the best chance and sometimes there is a point that you don't want to anymore. And that's okay too, but if you feel deep in your heart that you want to know you've done everything possible, then you can do it. And you have your family to hold your hand through it all. They will be your rock, and if ever you feel you are losing your motivation, just keep them front and centre in your mind all the while ❤️

Hoping for a better afternoon for you xx
Ps this thread is going to fill up soon so if you have a moment and want to, feel free to make another 😊

Hopefully you're part way through your first chemo session 🤞🏼

I hope they've given you the shit hit anti sickness stuff too, it (according to my friend anyway) makes the world of difference!!

It's time to be very honest with Prof B about just how bad the pain is, especially at night.

Very selfishly I wish there was something I/we could DO for you.

You're a fighter darling, kick it's arse!!! Xx

Ok. So, at 7am I got my steroids, my MDT (long acting opioids - which they are upping to 20mg twice a day), pregabalin, paracetamol and other assorted meds. By 8am I felt about 30% better with the pain and my heart rate had dropped. It’s probably down to a pain score of about 4 now which is totally manageable. Why are nights so bad??

I honestly think the oramorph is a waste of time. The pain doctor is coming to see me later for more tweaking when I get back. Discharge is dependent on how I am. Was taken by ambulance to the UCHL, I’m on floor 5 and it’s really very nice. It’s very clinical but everyone is very kind. Unfortunately they have to pump yet more fluid (3 litres) into me, because the cisplatin is very hard on your kidneys (it’s gem/cis I’m having). They are confident my body will find its way back to an equilibrium after a couple of treatments. Hope so as it’s actually disabling to be so blown up, and kills any capacity for an appetite.

Here I am, didn’t actually think I would make it. Had a word with myself and thought, no, fuck it, you cannot fall at the final hurdle. You HAVE to do this. I know I do, for Kerr and Jacob, and for me too. I have literally nothing left to lose.

Here’s me and my puffy ankles waiting to start. Still in my M&S sliders as no other shoes currently fit. Onwards!!!

@WilsonMilson you absolutely can get other more potent pain relief and you can get other anti-sickness drugs. Have a very frank discussion with the nursing team. You need a review from the pain team (I presume private hospitals have them too). Anti-sickness meds can be trial and error as sickness is only partially understood and is complex.

I won't pretend they can take away all the discomfort, but you don't need to be in this much pain or this nauseous. Also, have they considered giving you anything for anxiety? Many persons in your position experience intense anxiety and associated physical symptoms - this is another thing the nursing team should help you get under control.

@WilsonMilson apologies Pamela, I should have used your name rather than your screen name!