Pamela thread 3 - Bile Duct Cancer, off to London!

[WilsonMilson]

Just starting a new thread.

Pamela sweetheart of course you need a bedpan ,think how you would react to someone in your care who needed one .You'd be kind and competent .The nurses will be this plus doing it all on auto pilot .

Girl in bed next to me when I had major surgery was ignoring all nurses advice ,downing her own pain killers .Got v constipated .Cue manual - she shouting "feels like you've got your whole arm up there " and then ....posting the output all over her social media .
You are a dream patient .

Regarding pain and morphine - it really messes with your head and your emotions (as does general anesthetic ) .I was convinced I'd woken up in the 1950s!

Different people respond differently to different meds - IV paracetamol is good .But maybe contraindicted by other stuff going on in your body .

Love to you ,to Kerr,to Jacob and to your mum .
One breath at a time .

You poor thing. The pain, and challenges you're facing post-surgery are so hard. Echoing everything that's been said, you are amazing, in so many ways. Hope your conversation with the Prof is helpful & with a plan moving forward 💐

Pamela, I haven't posted yet, but have read all of your threads. You are being so brave. Fingers crossed for good update.

Morning Pamela, well done on getting through the op. Best of luck with your discussion with your doc today - I have everything crossed for you! Hope you'll feel a bit better once you can have something to eat. Sending you very best wishes x

Paracetamol is contraindicated with jaundice. Pamela you remind me so much of my late friend and work colleague who fought stage 4 lung cancer for 17 years. She was always so upbeat and positive and quietly defiant even when the doctors gave her bad news. I'm in Dublin and I will ask my mum to add you to her prayers, as I'm not a prayer myself.

You are doing great, Pamela. Just keep going x

SO glad you made it through the op safe and sound. Hugs, again and even bigger , from Australia. x

Oh bless you Pamela, I'm not surprised you feel like you've been run over by a bus...
Don't be stoic about the pain or about asking for help when you need it
Hoping you feel a little better over the weekend xx
Kerr was a 🌟 to post but please don't feel like you have to

Pamela
if it makes you feel better, I've done the bed pan thing too, I was in France and I was almost in tears and the nurses thought I was a right wuss!

much love to you xxxxxxx

I had Oramorph for pain once- never again. I thought it would magically take all the pain away, it didn’t. Just felt sick and dizzy… and still in pain!
You look pretty good to me! considering all you are going through. I think a bit of make up /self care helps us feel a bit better! 😊 and more human.
Glad to see movement on the operating front, the jaundice may be improving but you can’t see the difference yourself yet. Things take time.

I could tell you a little story about going on holiday decades ago in Greece, some feta cheese, very bad drainage at the hotel and a carrier bag 🤣🙈I’ll leave that to your imagination! believe me, the bed pan was way more dignified! lol

Take care, keep your strength up- anyone would feel weak going through that. 💐Keep going xx

You’ve done very well to be so coherent so quickly after a big op. My husband has some very funny stories to tell about me after my bowel cancer surgery. Every five minutes I would tell him what the surgeon had told me after I woke up, he just humoured me bless him. He had to read my text messages out as I couldn’t focus at all and respond on my behalf - I think it was mostly variations of ‘tell her I love her’ in a slurring voice lol.

Shame they didn’t give you a catheter so you’ve one less thing to worry about for the first day or so, I was very grateful for mine. But yes the nurses have seen it all. It’s like childbirth, you do have to leave your dignity at the door but they are so kind and want to help.

Please do speak up and ask for better pain relief. The anaesthetist had a range of drugs for me to try after my pca was removed, depending on my pain levels. You shouldn’t have to be in pain.

Thinking of you Pamela. I have my own experience of cancer- stage 4 so I recognise so many of the feelings you describe. I really hope you are getting some comfort from this thread.

So much love and light to you and your little family Pamela, I’m so glad that the surgery went as well as could be expected and I’ve got everything crossed for the next few steps.
Oh God, the cardboard bedpans, I had major surgery a few years ago and had to use them for about 48h afterwards, so grim but nothing that the nurses haven’t seen before!
I will hold you in my thoughts and am sending you a pic of my happy place in the hopes it will bring you some light xxxxx

17.5 mg since 10pm last night isn't a lot @WilsonMilson so you can definitely ask for more if you are still in pain. Do make sure you tell them how painful it is. You shouldn't need to be in pain.

The op sounds like it went well. Sorry to hear about the lung mets. Low sats will make you feel rubbish, but it's good that they've given you oxygen.

Whahey Pamela! , great to hear how you are coming through day by day.

Here’s my belated Happy Birthday to you, something to wriggle your toes to…

You’re doing so well straight after surgery Pamela, keep going and be carried by our faith, hope and love x

I have good news on 2 fronts!! Goodness knows good news has been in short supply recently.

Firstly, the wonderful nursing staff arrived all singing Happy Birthday and brought me a lovely platter of cakes. So thoughtful, so kind. My treatment here was been world class. There is nowhere I would feel safer or more like they are doing absolutely every single thing they can.

Secondly, and most importantly. My bilirubin levels have dropped almost 50 points since last night. Still high, but going in the right direction. Prof B arrived and is just the kindest man in the world, honestly I have him at practically Jesus levels at this point. He is very hopeful that things will continue to improve as the bile drain seems to be doing it’s job well, and that as long as we get below 50 (a way to go get) then chemo and immunotherapy starts Wednesday!!!!!!!! The surgeon is keen to keep the drain for now and not stent as it’s a long structure and stenting may in fact hamper the success of then drain. So I go about with a bag for a while - so what, don’t care. As long as it works I’d happily do anything. The hope is that the chemo and immuno work really well, blockages get better and the drain comes out.
The ascites drain is to come out later today. It’s taken over 2 litres. I’m still massively bloated but they reckon that’s enough for now. I’ve gained 6k in 3 days according to the scales they weighed me on a wee while ago, and I’m definitely far more plumped up all over (actually look better for it) but apparently that’s the masses of IV fluids I’m taking and general retention.

I’m almost scared to post this in case anything now goes drastically wrong, and I’m still feeling epically shit so it’s very hard to believe, but this is good, right? Also, he’s not that concerned about the lung right now.

So, faith hope and love!! Is it working? Is the collective really helping? I truly believe it is. I’d have died if I’d not had this opportunity. I have a chance. That’s all I wanted, a chance to live.

I love all your messages, I read every single one. I’m sorry I don’t have the energy to reply individually but please know I read and appreciate them all.

Fantastic lovely Pamela!!!! I will raise a glass for you tonight (something tells me you would be raising one with us if you could!). Fabulous lady- you are showing us all the meaning of human spirit and kindness xx

Faith, hope and love indeed! That is excellent news! You are looking beautiful too! All everyone needs is hope and you have that now, brilliant stuff x

So happy to hear some good news! The more your bilirubin levels drop, the better you'll feel. I was lucky that mine plummeted really quickly and the difference was immense. Good luck with the treatment. You really are getting the best treatment at last.

Pamela
I am reading this with a lump in my throat. You deserve some good news. So please that there is positive news and real hope xx

Fab update! You look lovely and what kind staff x

Been following your story, and want to wish you love and best wishes. So glad to hear positive news xxx

Great news that the drains are working and the bad numbers are falling. Fingers crossed it all carried on in the right direction and you can commence chemo next week. Will continue to send positive thoughts to you and Kerr. x