newly diagnosed glioblastoma abroad

Hello Everyone,

I am looking for some advice and support.

My father in law was on holiday in New Zealand, when he quite suddenly took ill. over the course of 2 weeks he became more confused and less stable on his legs, then quite suddenly had a seizure, after which he was airlifted to hospital. Initially the medical team thought this was a brain bleed, but after CT and MRI it was confirmed to be a tumour. Just over a week later he had surgery to debulk and they sent material in for a biopsy, which after several days confirmed a glioblastoma multiforme.

He has since moved onto a surgical ward and is currently stable. We would like him to be brought back to the UK, however we have been told that he needs to wait for the air to resolve which is in his skill following the surgery. Otherwise it would be too dangerous to fly with the different air pressures. So we are currently waiting and keeping him stable and comfortable. We have been told this can take 2-3 weeks. We have also been told he most likely has only several weeks maybe a few months to live. So it feels like a race against a ticking clock.
For this reason all his children have been to NZ to see him to 'say goodbye' in case he will not make it back home alive.

It is difficult for him to speak. When he does manage to answer questions, we have noticed he doesnt know where he is and/or when he is. He can be very restless and often attempts to remove his feeding tube and iv.
His facial expressions are quite bland and nothing like he used to be/look. In a way it feels like there is 'nobody home'. He sometimes recognises us, sometimes he doesn't. He can walk a few steps, but needs 2 people to support him to keep stable. Swallowing is difficult, but he can eat some puree'd foods.

My questions are mostly around treatment options. We havent spoken with an oncologist yet. From my research I understand that the standard treatment would be radiotherapy combined with chemotherapy. However as I understand it, this will only (possibly) slow the process of a tumour growing, not resolve it.
If he was to have this treatment, is there a chance of him being more like himself again? or would it simply keep him in his current state?
What have side effects been like for other patients? was there much discomfort?

If you have manged to read this far, thanks very much!

  • Hello Dutchie23

    I'm so very sorry to hear about your Dad's diagnosis. Undoubtedly this is a difficult time for you all and natural that you will have questions about what options may be available to your Dad if his health stabilizes enough to return home to the UK. 

    Hopefully if we've any members here who have experience with this diagnosis and treatment they will post to share their stories with you. In the meantime, it may be worth speaking to our team of nurses or contacting The Brain Tumour Charity. While neither will be able to give you exact answers, I'm sure they will be able to help with some information, advice, and support. If you'd like to talk with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. 

    I'm sorry that I've not been able to be of more help. My thoughts are with you all. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hiya Dutchie23 

    I'm so sorry to hear about your father in law, how terrifying and sad. 
     

    My dad was diagnosed offically in January and his tumor debulked soon after. My personal experience has been that he is perhaps a bit less confused now, 3 months on. At first he seemed exactly the same but I've noticed some mild improvement more recently. I will say that my dads symptoms sound less severe than your father in law and of course everyone is different. 
     

    He is due to start radiotherapy soon (there's a delay because his craniotomy scar is infected) and we have been advised that a lot of the damage has already been done and its more likely that we won't see much improvement from here. 
     

    I've read hundreds of posts on forums (the Macmillan community forum for Glioblastoma is really good if you are looking for more support) and everyone's story is different. The unknowns are so difficult. 
     

    Sending lots of love and support to you and your family. I'm so sorry you are going through this x