Brain metastesis

Hi

I'm very sorry to read that your dad has been diagnosed with oesophageal cancer which has spread to his brain. I know what a tough time this will be for the whole family.

I'm not a member of this group but noticed that no one had replied to you yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily spotted.

Not knowing what your dad's treatment plan is must make everything very difficult and I wondered if your dad would give his permission for you to speak to his CNS so she could answer your questions.

x

Hi Kim,

so sad to hear about your dad. It doesn’t sound good. It could be better than you think though. There might be something in the plan that you are unaware of that will make him more comfortable. Palliative care is marvellous these days. You should make the most of your time with your dad without sadness or distress, which would be hard for him. 
As Latchbrook says try leaving a message with the clinical specialist nurse to phone you so that you can hear first hand what the future holds, so you know how best to support your dad.

Keep posting. I’m sorry you didn’t get a reply straight away, this time.

Brent I sent you a message a few days ago, I don't know if you have seen it. I hope you are well. Kind regards Frank.

Hi Kim, sorry to hear about your dad and not knowing what is going on. I am now on palliative care after being clear for 5 years. I asked my oncologist. Couple of months ago if my local GP's have been told about my situation, she said they had and asked why. I told her that I had not been contacted by them to offer any support. Things took a turn for the worse in September and I was given steroids to try to get me to eat more. I phoned her secretary just over a week ago and told her I had lost my appetite once I finished the steroids. The oncologist called me a couple of days later and said she would email my GP to get them to prescribe more steroids, and asked if I had heard from the GP. I told her no, I don't know what she said to the GP's but they have been jumping through hoops since. I wasn't sure who I should contact so I had a look on NHS website. Your GP is responsible for primary care  communicating with the oncologist etc. I think she reminded them of their responsibilities. You can try contacting the hospital department or as Brent said the specialist nurse may be able to find out for you. Push them for answers, including your GP. Good luck and kind regards Frank.

Thanks everyone. My Dad had told the staff not to tell us anything, though he had phoned us in tears. He is quite confused. He relented and they were allowed to discuss his condition. He has 2 lesions on his brain which is not good.I had to travel 300 miles from my home to see him and now the palliative care team are involved so things are moving forward. I think they may attempt radiotherapy tp prolong his life a little but depends on results of scans. He is more comfortable now the GP has visited and prescribed stronger pain relief.  Sorry I didn't access my messages, I didn't take my laptop with me and its been a difficult few days. 

Kim you have no need to apologise for anything. I'm glad you now have a clearer picture of what is going on and the GP has visited your dad. Stronger pain relief will keep him comfortable and more relaxed. Take care and kind regards Frank.