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.

@WinchSparkle80

I'm a bit further north than you (if your user name means what I think it does)

it's been sunny, raining, grey, sunny....🙄🙄grey & warm now with patches of blue.

The Girls are in Hyde Park for Lana del Rey. So I'm looking forward to a late night taxi run. Hopefully to local train station, not London!!

I hope things are going well for Pamela, & her & Kerr are just enjoying some time together. (Be good to know she's ok though).

Dear Pamela, I’ve been praying for you and will continue to do so. You write beautiful, I loved the photos. Sending love and positive vibes to you and yours xx

Here’s a view for you Pamela from a beach about 50 miles south of where you are now. Sending you some of this sunshine and hope you can imagine the sound of the gentle crashing of the waves.

Hi everyone. Just a really short update as didn’t want to leave you all without a message today. Struggling here.

Had a really bad evening and overnight. Just seemed to totally crash. Abdomen has blown up to enormous sizes again, along with hips and thighs - not ascites apparently, looks like lymphoedema but there was word of something to do with albumen and protein but I was kind of out of it at that point. Just pain and pressure.

The pain last night was like nothing I’ve ever experienced or would want to again. I was honestly praying for release. I thought my insides were going to explode. I was given oramorph but it just didn’t touch the sides. Think I had it about 5 times and also codeine and paracetamol. No relief. After basically being up all night, at 7am they gave me a morphine injection which did help a bit and allowed me a couple of hours sleep. I have a pain specialist coming later on to put together a plan for long release morphine as I simply cannot do this anymore. I am done.

My biliary drain is leaking and the dressings are having to be changed every few hours.
I had yet another CT scan this morning (honestly I was in floods of tears, I’d barely slept and the thought of lying flat in that machine getting yet more radiation was just more than I could stand). I did it and it only showed a difference of a slight hemotoma beside the stricture of the drain, so no major issue or change, likely a result of the rummaging about and the operations.

Still quite yellow with dark pee. Still feeling awful. Have zero clue how I can possibly be strong enough for chemo on Wed. Just want the jaundice to go. Eating is extremely difficult. Have managed soup, a yogurt and a Fortisip so far today.

Still trying, not giving up, but have had a really upsetting and traumatic time since yesterday evening.

@SoSadForCav It’s sunny now ☀️ I was at Hyde Park last weekend for TT - lucky with the weather! Hope all had fun at Lana Del Ray!

@WilsonMilson so sorry to hear you’re not feeling too great. My DH always says, at least you’re in the best place 💚

I reckon morphine by drip is the way, oramorph doesn’t always help everyone (used to just make me sick) so ask Kerr to advocate for you on this. Pain team defo will help.

Huge hugs and love, keep going, keep fighting you are so brave 💚

So sorry to hear you are having such a rough time @WilsonMilson. Hope you get some proper help with the pain and that everything settles down soon so you can get your chemo.

Pamela, what have the doctors said, you seem to be suffering terribly, have the pain team seen you? Palliative nurse for ,continuous pain relief? You can't go on in pain like this, it needs to be controlled?

So sorry to hear you haven't been great sweetheart @WilsonMilson - the pain team will sort your pain out for you. Hoping you're feeling more comfortable soon.

You're amazing!
Despite all your devastating troubles with your health, despite travelling and being treated far from home, despite emotional trials and pain management with morphine, you have still managed to keep everyone informed about your progress with your health.
You have managed to stay upbeat and wear lovely eye makeup for your surgery.
You even got your partner, whilst waiting after your surgery, to update Mumsnetters on your situation.
Wow. Incredibly inspiring.

Oh Pamela, you poor thing. It is a really bumpy road after any op with highs and lows. Factor in how poorly you were going into surgery your body is really being put through it. I’m Sorry you have experienced such pain and fingers crossed the specialist can help you cope.
We are all with you, 24 hours can make such a difference, faith, hope and love to you. X

Sending love Pamela, I am filled with admiration for you and so sorry you’ve had such a bad night and day today. I hope you get the pain relief you need xx

So sorry Pamela, It is awful to hear that you are suffering. It sounds horrendous. I hope everybody is doing what they can to help you and make you feel more comfortable very soon. 💜

Oh, love, you are really at the coal face. We are all here with you, I do hope they find a solution to the pain which works for you. In this day and age no one should have to go through that. However, it is for a reason and your strength is testament to that 💪 lots of best wishes and postive vibes to you and your family xxx

Sorry you’ve had an awful day and night. I’m glad the pain specialist is seeing you later, I hope they take away as much pain as possible and that you can rest. Xx

I am praying that they finally get on top of the pain very soon x

Pamela, I am so sorry to hear how horrible it all is and you are justifiably feeling very very low....please remember one thing, and whilst I know it can be perceived as 'trite' the saying, 'its always darkest before the dawn' will be true in your case. You will get the pain under control, it will happen, and it seems likely that the pain is the result of all the internal bruising and general interference caused by the surgery, and not, because there is anything worse happening. Everything feels awful just now, but time, and good pain relief will get you better again....so try your best not to dwell on this very moment, but try to see ahead just a short way to a time when you will feel better....it will hopefully be tomorrow, so when you awake - you will notice the difference; Let the pain team know what is required, don't you dare 'underplay' it! Let them help you. Don't even try to be brave, you don't have to be and no one expects it. Just make sure you are clear about how much pain relief you need - sending love to you - you are a wonderful woman.

Oh Pamela im sorry to hear you are in so much pain. I hope you can get long release morphine sorted and that the pain team are with you soon

I'm so sorry that you've had such an awful experience and that you're suffering so much pain. You're being so brave but you shouldn't have to be, it's not fair. Thinking of you and really really hoping that things improve and you can start chemo.

So sorry to hear this Pamela. Try to hang on in there - the first day or two after surgery is always awful, but it will get better. Try not to think too far ahead - just concentrate on the here and now and the pain specialist's visit, which will hopefully culminate in improved pain relief that allows you to get some sleep. Trust that after some proper shut-eye, everything will be better in the morning. Keeping everything crossed for you and sending you much love and healing white light.

Oh Pamela I’m so sorry to hear you had such an awful day yesterday. The pain must be absolutely awful. I hope the pain specialist sorts you out with some top quality pain relief so you can sleep and gather your strength a bit before chemo. 💐

So sorry to hear you had such a terrible night Pamela. I know it's extremely difficult (I cant even begin to imagine just how difficult) but please, please try not to fret about whether you will be strong enough for chemo, because once they arrange a better pain management plan that is more effective, I believe you won't feel that way.

Pain that you can't escape from can really make you feel helpless and sap your energy physically as well as mentally. That alongside all the poking and prodding and transporting back and forth to machines and problems cropping up along the way is enough to make anyone feel defeated. But you aren't. You are young, you are in exactly the right place, with the right people, and you can do this. Once the pain is better under control your focus can change and your inner strength and determination can come front and centre once more.

You are so brave, and we know you can beat this 💪

We may encounter many defeats, but we must not be defeated.

I'm so sorry. Hope the pain specialist can help get you more comfortable.

Pamela, I’m really sorry you had a bag night, which in turn makes the next day awful too.

Please god you will get pain relief and in turn mental relief really soon.

Sending you much love

Sorry to hear you're not feeling so good today Pamela. Thinking of you x