help i feel so alone and been told I’m not a viable candidate for surgery x

[Tinks123x]

inks1

Thank you for excepting me I got diagnosed with bile duct cyst in 2020 I’ve been sick since I was 9/10 years old I’m now 40 my symptoms are getting worse but I’m not a viable candidate for surgery and am on no treatment I have stave iv or when first diagnosed I was 1b have I got cancer no one is telling me straight but every where I read it says it is please help not on any treatment and in pain daily and sick daily x

[RugbyMama]

Hi there

Your post doesn't make a lot of sense. You say you've been ill since you were a child but you don't say with what. You then mention bile duct cyst and then cancer - have you been advised you have a cancer diagnosis?

You might find the British Liver Trust helpline is your best source of support.

[BritishLiverTrust1 Partner British Liver Trust]

As RugbyMama suggests, you may find it useful to talk things over with one of the nurses on our helpline. It's open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Readlots]

Hi, it sounds as if you need some support. The nurses on the British Liver Trust helpline are wonderful, try giving them a call. If you are in England you could ring your GP and ask to talk to the community nurses, they are excellent at identifying what support you need and putting it in place.

[Tinks123x in reply to Readlots]

Thank you I’m just so confused and scared xx

[AyrshireK]

Someone should be sitting down with you and thoroughly explaining your results and what all this means. Do you have someone (a friend or relative) who can attend appointments with you to help you decipher what is being said. You are allowed to question your doctors and make sure they help you to understand what's what. If you don't have a friend or relative then there are also advocacy services who can support you at appointments.

You shouldn't be left in the dark or only have part of the story, you need this situation explaining to you properly and to see what treatment options are available to you.

Sad that you have been left alone with all this worry. Knowing the support my hubby needs at all times with appointments etc. I know how much he'd struggle without help so someone needs to step up to help you.

Thoughts with you and hope someone can help you deal witht his situation.

Best wishes

Katie x

[Tinks123x in reply to AyrshireK]

Thank you I’ve been trying to get answers for the last 4 years been in hospital 68 times in the last 3 years and was in for 5 months last year but they missed my cyst and ignored all my symptoms putting them ptsd my gastroenteritis is always off I have been waiting for a year for a new ng tube and I’m trained with ng feedings so it takes some stress off the nurses but the swelling is getting worse and pain and sickness every day in my upper right quadrant and all around the back and my skin is so itchy I was told I’m not a viable candidate for surgery as they don’t think I will make it off the table but my symptoms are getting worse daily I have no life but I’m just a number they put the misdiagnosis down to Covid xx

[AyrshireK in reply to Tinks123x]

Have you asked for support from the PALS - Patient Advice & Liaison Team at your hospital? They should be able to make enquiries on your behalf and feed back with answers. nhs.uk/nhs-services/hospita...

No one should be left in the situation you are and the PALS team should be able to help.

Katie

[Tinks123x in reply to AyrshireK]

I tried pals I even tried contacting the surgical assessment surgeon and am still waiting for a callback and my surgeon gastroenterologist is always off sick x