Bile duct cancer

Hi 

I am so sorry about your situation. It can’t be nice to feel you’re in “god’s waiting room” as you so eloquently put it and with no help. 

I think maybe you’ve fallen through the cracks in the system. Are you in England? I know that in England the ongoing palliative care is usually provided in the community. If you were in hospital because of a cancer issue, for example pain or a blocked bowel, then you might be looked after by the hospital’s palliative care team. But otherwise, the care outside hospital is led by the community and primary care team with your GP in charge. 

If things were running properly, a letter would have gone to your GP from the hospital outlining your situation and handing over the care. I think you have to assume that things are not running properly and take matters into your own hands. 

If I were you, and excuse me if you’ve already done this to no avail, I would make an appointment with my GP to talk about the lack of care over the last three months and find out what services he or she can refer you to. There must be an end of life service and the sooner you get a referral, the better. 

I hope this is helpful and that I haven’t got everything wrong. At any rate, welcome to the community. 

xx

Hello oldchinahand

I am so sorry about your diagnosis, I hope you find some comfort here. Have you seen an oncologist? If you have, I would contact them and ask what is happening. It seems unusual that you have had no support from Macmillan.

Do you have friends and family who you can turn to? 

You are not alone here, take care

X

Hello ,

I had typed a lengthy response but lost it when I tried to post it.  I am on my phone so it was probably my phone rather than the site.

I had said that I think that this is your first post in this group so welcome to the group.  It must be extremely difficult to get told that there is no treatment available at any time but even more so whilst everyone is isolating.  The other responses cover most of what I would suggest.  Your GP can assist with referrals to Macmillan or Marie Curie and your local hospice our palliative services.  It will be difficult with the current restrictions but they will offer something.

I did have a look at your profile but you haven6put anything in it.  Even a little information avoids you having to repeat things.  If you click on other members usernames where they are highlighted it can give you an idea of what others put.

It is difficult at the moment when we can't meet friends or family for a cuppa and a chat.  Feel free to join in the conversations on this site.  I am sure you will find people welcoming and supportive.  I hope to talk to you again soon

All the best.

Gragon