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.

  • Hello Sparklingwaters, 

    A warm welcome to our forum and thank you for sharing your moving story. I am so sorry to hear that nothing has happened in terms of treatment and that surgery is not an option and his short-term memory has been impacted. How awful that he cannot remember his diagnosis and he has to be told about his diagnosis repeatedly - how traumatic this must be for him and how heartbreaking this is for you too. 

    I think all you can do for now is carry on being supportive as you have been. I can imagine it is incredibly hard to talk about your children and what you want for them if he cannot remember his diagnosis. It's really difficult to know what to do in a situation like this. Perhaps you could give our cancer nurses a call on this free number 0808 800 4040 and talk things through with them? Their line is open Monday to Friday from 9am to 5pm (but closed this bank holiday Monday)

    I hope that you will also hear from other members of our forum who have been in a similar situation before, who have perhaps supported a loved one with a similar diagnosis and that they will be along soon to share their story with you. 

    Best wishes, 

    Lucie, Cancer Chat Moderator 

     

  • 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