navigating conversations is harder each day

My dad was diagnosed with Stage 4 Lung Cancer 5 weeks ago.  He has spent the past 3 weeks in hospital as the cancer has rapidly spread from the lung to the brain spine and muscle.  Does anyone have experience of really aggressive brain metastases?  The cognitive changes are increasingly difficult. He knows who I am which is great but his intellect is deteriorating daily. he is losing himself to the disease.  It has not been helped by the fact that for the past 10 days he has been on a Covid ward (he contracted it from the previous ward) and has not been allowed to have visitors (understandably) So we have not seen him or been able to do anything other than talk to him daily. I am just so afraid of how he is going to look when we are allowed to visit again.. and that that high dose of steroid is just frazzling what is left of him.  I just wanted to know how other people in a similar situation are coping with personality/behavior changes.   thanks x 

  • Hi

    So sorry to hear about your dad. Cannot share exactly the same as my dad did not have cancer but we lost him bit by bit to a number of seizures and he was in an out of hospital. Towards the end he was in a high dependency care home and even there he could be quite difficult to manage.

    In some ways when he died it felt like a relief that he was no longer suffering but then the feeling of what do we do now cut in. There was also a sense of relief that we did not have to organise all the care and then hit with guilt for feeling that.

    Hope some of that helps you perhaps feel less alone, you are dealing with really impossible circumstances and from what you post it sounds like you are doing a really remarkable job.

    <<hugs>>

    Steve

    Community Champion Badge

  • Hi, I just wondered how you are doing? I’ve just joined the community and found your post as I’m going through exactly the same. It’s so hard to see this happen to someone for whom you care so deeply. How are you now?

  • Hi Susie, sadly dad passed on the 26th April.  He was in the hospice and the nurses were with him.  He had a clot and so it was very sudden (he had been eating a sorbet that morning) and chatting to the nurses then he fainted and didn’t regain consciousness.  

    we are devastated.  The loss is so painful but equally so glad it was painless and quick.   From diagnosis to death dad had 12 weeks 9 of which were in hospital/hospice.   

    how are you doing?  All I can say from the experience is just spend as much time as you can remembering the good times.  X 

  • Oh no, I am so sorry to hear this. Sending you my absolute heartfelt sympathy, that must have been a real shock if he was chatting with the nurses just that morning.

    Thank you so much for your reply and I hope I haven’t dragged up any difficult memories. I suppose I was wondering what to expect from here really, as it can’t really get much worse at the minute.

    I’ll most definitely just keep remembering the good times as there haven’t been many for the last few months. Thank you again for kindly replying. Take care. Xx

  • It’s the feeling of helplessness seeing someone you love in that much pain.  Make sure to be kind to yourself and take time for you.  Anticipatory grief is real.  Have you got a diagnosis?  Have you been given a time frame or discussed any treatment?  Xx