Just to say hello and asking for guidance how to lead your own treatment.

  • 1 reply
  • 18 subscribers
  • 551 views

Hi everybody. Now it is one month since I was diagnosed with bile duct cancer (choliangiosarcoma) . I feel like I'm watching somebody else story and it is not involving me. I'm absolutely devastated, as myself I'm a carer for my disable teenage son who needs constant care. 

Receiving diagnosis of something which difficult to treat knocked me down completely. I don't even have time to organise his future care SobSobSob. Disciplinary meeting will take place this week and they will decide what to with me, but as I have unfinished business on this earth I really need the best options to choose. Now, my hospital doesn't have specialist but I guess they might just give me chemo to slow the illness. 

Do you have any suggestions how to change hospital as I don't have idea. I haven't seen yet oncologist.

Thank u

  • Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    You are right that receiving a cancer diagnosis is a very difficult thing to hear and it must be doubly difficult for you as you need to arrange care for your disabled son.

    I haven't changed hospitals, so don't have any first hand experience, but this information from Macmillan on getting a second opinion might help you to change hospitals.

    When you feel up to it, it would be great if you could pop something about about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"