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Cholangiocarcinoma and end of life care. Getting no help

30 Nov 2022 02:00

Hello my mum is 83 previously to March this year was a very fit healthy young for age lady got diagnosed with inoperable hilar Cholangiocarcinoma she declined treatment as her quality of life has been really good she continued to work her part time job until a month ago and then became jaundiced and very poorly spent a month in hospital and has aged 20 years lost 3 stone in weight we are all so shocked she is now very weak an unable to walk more than 10 paces we have no support  no Macmillan nothing at all follow up only from the constant we keep getting told to go to A and E but now she refuses to go after 3 occasions of spending 3 days in a corridor on a trolley waiting for a bed is Amy one else exaspand at the end of their tether with end of life /palliative care? I'm looking after her on my own we had to 999 her into hospital and it took 20 mins for them to answer the phone and 6 hours for an ambulance as she was breathing and not bleeding ! I'm just distraught at the whole care system 

Cholangiocarcinoma and end of life care. Getting no help

2 Dec 2022 09:02 in response to Smartlee

Hello Smartlee

I'm so sorry to hear about your Mum's diagnosis and that you're struggling to get any care and support for her. It's obviously an incredibly difficult time and I can understand why you're upset and frustrated by things.  

Have you spoken with her GP surgery about the fact that she isn't recovering any support? If not then do get in touch with them and explain the situation. Hopefully they will be able to get a proper care plan put in place to support both your Mum and you as her carer. If you don't feel that the GP surgery is helpful then ask to speak to the Practice Manager. 

If you'd like to talk with one of our nurses for some support and advice then you're welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. I',m sure they will be happy to offer any support and information they can. 

I do hope that you're able to access the support that your Mum needs soon.

Best wishes, 
Cancer Chat moderator 

Cholangiocarcinoma and end of life care. Getting no help

4 Dec 2022 23:41 in response to Moderator Jenn

Thank you for your advice I appreciate it very much finally we have got her GP to refer to local hospice she is not actively dieing but needs some help managing the symptoms and pain and complications we are a few weeks away from complete end of life I think