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Pamela - Bile Duct Cancer, thread 4, London has given me a chance!

1000 replies

WilsonMilson · 08/07/2023 13:35

New thread as I see the old one is about the run out.

OP posts:
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74
mommybear1 · 09/07/2023 19:28

Thinking of you @WilsonMilson wishing you all the strength possible 💗

EarringsandLipstick · 09/07/2023 19:37

I am so so sorry OP. It's hard to fathom the utter nightmare you are experiencing. I am praying for some relief for you & a more positive update tomorrow. It's very limited I know but you have so much goodwill coming from everyone here. ❤️

Lostatsea10 · 09/07/2023 19:41

I’m so sorry to hear how hard it’s been for you. I hope you have an easier night tonight and get some rest.

thebestveggiesausagesarelindas · 09/07/2023 19:42

Sending so much love and good wishes and hope for the pain to ease, and for tomorrow to be better.

ChristmasCwtch · 09/07/2023 19:42

Thinking of you. I hope you have a more peaceful night tonight 💐

Sunnysunbun · 09/07/2023 19:43

Praying for you and sending love. X

PhoenixIsFlying · 09/07/2023 19:44

Pamela, my love. You have been through so much. Praying that the pain relief comes quickly. If you could just be relatively pain free and get some sleep, I'm sure that would help. I'm sure that will come soon. You have been so brave. You have made the journey over here, coped with surgery and scans. I hope with everything in my heart you can get pain relief quickly now. You have the will of the mumsnet world behind you. Sending love ❤️

keepmovingon · 09/07/2023 19:46

When sleep does come and it will you will feel so much better. You are an inspiration to me. I hope sleep finds you tonight x

Mydoghealsmyheart · 09/07/2023 19:53

I’m so sorry to read that you are in such pain and suffering. I really hope that the pain specialist has visited and can implement a plan to help. With love and prayers.

WhiskersPete · 09/07/2023 19:56

Thinking of you this evening Flowers

Twinsmummy1812 · 09/07/2023 20:09

I’m so sorry they haven’t been more productive with managing your pain and distress. Your poor body is being battered internally and externally isn’t it? I also pray that they sort your pain relief out and you get a good amount of comfortable sleep. Love to you and your family x

StellaJohanna · 09/07/2023 20:15

Dear Pamela,
So sorry to hear about the pain. I hope and pray that something has been fixed for you by now and you are resting and will get some sleep tonight.
We are praying for you at our church. and for your husband and son, and mother. Bless you, darling - just keep going.

StampOnTheGround · 09/07/2023 20:27

I'm sorry to hear you've been in such pain Pamela. I'm sure Kerr has been looking after you as best he can. I hope you have a lot less pain tonight and things take a turn for you x

YukoandHiro · 09/07/2023 20:55

Sorry to hear you're in pain and suffering. I really hope tonight brings you more pain relief and a better outlook in the morning. Xx

VariantHela · 09/07/2023 21:17

❤️❤️❤️❤️

legosunqueen · 09/07/2023 21:25

Pamela, so sorry to read your update, I hope that the pain can be managed better for you. Sending love & positive thoughts Flowers xx

Farmy · 09/07/2023 21:26

Dear Pamela

I’m following and rooting for you. Sending love and strength and wishing you as much comfort as possible.

At the risk of being annoying and in attempt to be vaguely useful, I’m going to offer two pieces of advice re pain management. My lovely dad had a horrible cancer (different to yours) and awful pain. So I only have his experience to go by and am by no means a professional.

  1. The pain managent team (nhs, pre-covid) never really explained to him/us how oramorph worked and it turns out you have to take it before the pain strikes and kind of build it up🤔Easier said than done of course… but perhaps if there’s anyway to anticipate the pain this may somehow help. Perhaps ask your docs about this.

  2. It was only when he finally got to a hospice was dad's pain actually under control. The pain management team never really got on top of it. A quick appointment every 2 weeks with minimal instructions (see #1) and a message of “it’s all a bit trial and error when it comes to pain relief” was very disheartening and my poor dad was left floundering. Hospice care on the other hand was excellent. I cannot sing their praises highly enough. They looked after all of us, but mainly totally sorted dad. He was reluctant to go in for respite care for the first time when things had got too much, but after he did, he was very confident that that’s where he wanted to be for end of life care. Not sure how it works with you being under private care and also away from home but in our experience the hospice was a godsend.

Best wishes and hoping for a quiet night full of sleep for you 🌻

WilsonMilson · 09/07/2023 21:31

The phoenix rises once again. So, I pulled my shit together, thought no way am I defeated and got on with the day. Started really badly and honestly I still cannot fathom the pain I was in (and scared of the coming night now) but I’ve now been put on a slow release morphine tablet, took it at 7.30pm, and can have top ups if I need to.

I wouldn’t entirely blame the doctors as frankly this kind of cancer is just painful no matter what you do with the size and placement of the largest tumour, it’s displacing organs, pressing on nerves, stopping body functions working, so it’s just a shit thing. Unless you knock me out totally, there will be some level of pain. Taking a deep breath is still painful because it’s extending into the diaphragm are and it is what it is. Speaking is a total chore and takes a lot of energy so I do it in short bursts only, which makes me sound a bit short with Kerr, but he understands. As long as the pain is manageable (up to an 5) and I can get to sleep I will deal with it.

One of the issues is where the drain is situated is exactly where my only comfy spot for lying down was, so kind of limited now in finding a spot I can get any comfort from. We are experimenting heavily with pillow placement.

Walked to the family room and back which felt like an achievement - it wasn’t far, but it was far enough for me to pick up thy bag and walk.

This evening we went on what ended up feeling like an epic journey to Regent’s Park. It was too far and I regretted it - really sore and bumpy coming back and not an ideal wheelchair to be in. Live and learn, smaller journeys. Here I am though, I’ve aged a hundred years in my face, lost all the weight from my arms and face, but now also have gigantic feet and legs. Great combo! But I’m out and I’m smiling and I’m going to see what lies ahead tonight and hope for the very best. Faith, hope and love. ❤️

Pamela - Bile Duct Cancer, thread 4, London has given me a chance!
OP posts:
Mummyoflittledragon · 09/07/2023 21:32

I’m so sorry you’re in such pain.

Can they not just set you up with a morphine clicker?

I insisted I was set up on one after major surgery. The surgeon didn’t prescribe it for some reason when I’d had it with the first two major surgeries. The nurses asked a doctor to prescribe it.

If you have to wait for pain management tomorrow, they may suggest an alternative but try and get it in IV or injections to limit side effects.

Mummyoflittledragon · 09/07/2023 21:33

Cross post. Go you! Xx

loobylou10 · 09/07/2023 21:36

I hope your pain is manageable tonight Pamela. Sleep tight. X

Letsgoforaskip · 09/07/2023 21:37

Yes go you!!! All I see in that photo is your heroic smile. As you say, keep channeling that inner phoenix!!!! 🔥🦅
Hoping that tonight is a world apart from last night and the morphine let’s you rest. 🥰

FairAcre · 09/07/2023 21:38

Sending you love and courage xx

Pansypotter123 · 09/07/2023 21:39

Wow! I hope you have a better night tonight after being out in the fresh air. And let's hope that your pain relief kicks in soon to enable you to have a good night's sleep. Love to both of you 💕

LesLavandes · 09/07/2023 21:39

That's a lovely photo and I'm sure the change of scenery will have done you good. Glad they're trying a different medication for your pain. I hope you get a sleep tonight. ☘️

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