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Original poster

Nervously waiting, could do with a hand hold if there's one going spare?

58 replies

bloodywhitecat · 15/06/2021 14:02

In around 45 minutes we will find out if DH is a suitable candidate for a trial treatment for bile duct cancer. Regular chemo isn't really cutting it for him and his tumours are continuing to grow so we could really do with some good news (although I am banking on it NOT being good news because it is the only way I can cope right now). The wait is always the worst, right?

OP posts:
FireUnderpants · 15/06/2021 14:47

I remember your threads from last year and was thinking of you yesterday. Hope it's good news for you both xxx

boon · 15/06/2021 14:59

Good luck xx

CantEnjoySummer · 15/06/2021 14:59

Fingers crossed for you!!!!

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FinallyFluid · 15/06/2021 15:01

Praying here.

Emelene · 15/06/2021 15:10

Praying for you. Smile

Original poster
bloodywhitecat · 15/06/2021 15:25

Well, it didn't happen. Again. This is the second time we have sat waiting for a call that didn't happen. Please don't get this cancer, there is no help out there.

OP posts:
Whosaidit · 15/06/2021 15:26

So sorry op.

KitBot · 15/06/2021 15:29

I'm so sorry. I hope something else comes up very soon for your DH. Thanks

dollophead · 15/06/2021 15:34

I'm so sorry. I hope you get better news soon.

RaineyMae · 15/06/2021 15:49

So sorry to hear that. That sucks.

Atalune · 15/06/2021 15:52

Blood hell. So sorry you didn’t get a response. That’s just not good enough.

RampantIvy · 15/06/2021 15:52

So sorry it didn't happen. I remember your OP about your DH and have often thought of you Flowers

Original poster
bloodywhitecat · 15/06/2021 15:57

I don't know what to do. He has called the PA of the Professor who is dealing with his case and left a message on the ansaphone. I have emailed the Professor but what else can we do. It honestly feels like no-one gives a fig. His clinical nurse specialist never gets back to us, the oncologist at the local hospital cancels appointments at a moment's notice and DH is left hanging on for scan results and to find out what's next. We already know the tumour is growing. It feels like the NHS just don't care.

OP posts:
mcmooberry · 15/06/2021 16:01

Oh God this is painful to hear that they aren't making you feel they care about the outcome. I hope you get good news and they let you know they are considering his case even if they are crap at communication.

FinallyHere · 15/06/2021 16:07

Holding my thumbs for you.

ineedaholidaynow · 15/06/2021 16:11

I am so sorry they are making a bad situation even worse Flowers

Alternista · 15/06/2021 16:26

I’m so sorry. Is making a noise with PALS an option?

DianeCherry · 15/06/2021 16:33

I'm so sorry OP. Hand hold here, what an awful situation to be in. Do you have any option to go private?

Misspacorabanne · 15/06/2021 16:38

I'm so sorry op! Don't give up! Fingers crossed for better news soon xx

Myxisaprat · 15/06/2021 16:50

Oh I’m so sorry xxx

spiderlight · 15/06/2021 16:56

Sorry they didn't call. I hope you manage to speak to someone soon - the uncertainty and waiting must be unbearable.

whatadayagain · 15/06/2021 17:20

I’m always reluctant to email/ telephone drs etc. It goes against the grain. But my friend who is a consultant told me I must do it - she said it’s the people that do this that get a reply, and it’s possible to do it politely.
Just keep reminding them you’re there waiting for an answer. It’s awful waiting and waiting, when actually you’ve probably fallen off their radar.

ohfourfoxache · 15/06/2021 17:33

I think you probably need to raise this with PALS

And if you don’t get a satisfactory resolution then go to the chief exec’s office

I don’t say this lightly, and ordinarily I would suggest asking your GP to step in. However under the current circumstances that’s just a waste of time because your GP is likely to be on their knees with work and are unlikely to get a response anyway

Only other possibility is contacting the lead CCG for the Trust (if you need help finding this out then PM me) and they might be able to raise directly with the Trust on your behalf

Sadly you’re not alone, this shit is happening A LOT. There just aren’t the staff or resources available and people who need help are slipping through the net Sad Angry

Original poster
bloodywhitecat · 15/06/2021 18:17

Emailing the professor worked.

The Professor at UCLH just called, he says the tumour is not suitable for the current trial but DH is suitable for the PORCUPINE 2 trial starting in July/Aug (and if anyone can make head nor tail of what that is then please let me know) But at least we know...

OP posts:
Whosaidit · 15/06/2021 18:19

@bloodywhitecat

Emailing the professor worked.

The Professor at UCLH just called, he says the tumour is not suitable for the current trial but DH is suitable for the PORCUPINE 2 trial starting in July/Aug (and if anyone can make head nor tail of what that is then please let me know) But at least we know...

That’s good op. Fingers crossed for that trial then Flowers