Advice (GBM4)

My ex-partner (father of our children) has been diagnosed with an aggressive glioblastoma multiforme tumour.  We are already a month in and nothing has happened in terms of his treatment.  Surgery is not possible.  His short-term memory is affected and he has fluctuating capacity (no LPoA).  He is a brilliantly talented man but cannot hold onto information, so each time he is told about his diagnosis, it is re-traumatising.  I don't know how long we have left with him but he and our 2 children (both adolescents) are my priority.  The heartbreak is unbearable; I don't know what to be doing. 

I feel time is slipping away.  I want to have conversations about our children, what he wants for them but I don't know where to start because he can't remember his diagnosis.  He is constantly questioning though because he is so intelligent - he knows something is not right, but he can't make sense of it.  Any advice would be greatly appreciated.

Parents
  • Good morning. It must be worrying for you all. I have  had GBM4 for nearly 3 years now and had 2 fully grown up children. I get frustrated sometimes as I forget words and have trouble pronouncing them. My personality changed as a result of this. I have been told despite surgery, and chemotherapy and radiotherapy my tumour has returned and is now inoperable. My wife attends my consultations as I cannot retain the information given and she writes it down. During my lucid moments I recorded messages for them to listen to in future. Take each day at a time is the best advice I can give. If you have any questions please feel free to ask. 

     

    John 

Reply
  • Good morning. It must be worrying for you all. I have  had GBM4 for nearly 3 years now and had 2 fully grown up children. I get frustrated sometimes as I forget words and have trouble pronouncing them. My personality changed as a result of this. I have been told despite surgery, and chemotherapy and radiotherapy my tumour has returned and is now inoperable. My wife attends my consultations as I cannot retain the information given and she writes it down. During my lucid moments I recorded messages for them to listen to in future. Take each day at a time is the best advice I can give. If you have any questions please feel free to ask. 

     

    John 

Children
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