GBM4 Advice

Hi Braintumour support welcome to  the  forum and that sounds  like a good idea. Im wondering if you might like to give the Macmillan Line a call with a view to discussing with them the possibility of maybe becoming a Community Champ who would maybe be able to look after that thread of the forum. 08088080000.

Hi Gail Thank you for replying, I will definitely give them a call. What does a Community Champ do? 

Hi BrainTumourSupport

a warm welcome to the group and thanks for offering to share your experience with the members. 

I'm  currently supporting my husband  (52) through his GBM4 journey so I understand how tough it is and suspect it's going to get tougher as time goes on.

What I have learned over the last 20ish months that I've been in this forum is that everyone's experience is similar but different. Everyone's tumour impacts in so many different ways. In our case, my husband's GBM4 impacted speech, language and understanding. His short term memory is more or less zero and his ability to read is severely compromised. He can manage 3 or 4 words then he's lost. Physically though he's incredible. He 's a marathon runner and is still able to run around 60 + miles per week and is entered in the London marathon in October. He ran the Manchester marathon back in April in a PB time of around 3hrs 15mins- incredible from someone who was given 12-15months to live in Sept 2020.

We've had a shoddy experience with the NHS I'm sad to say. Since he decided in Jan 2021 that he wanted no further treatment they've pretty much washed their hands of us other than to do maintenance MRIs. The lack of consistency and clarity/honesty in communication throughout has been shocking. 

My key question to the oncologist when we get a video call appt is "what should I be watching out for?" "What should I be concerned about?" Every time the answer is "Headaches, nausea and seizures." "No s**t Sherlock, I've been watching for these since the start of Sept 2020! I have been advised that the most likely thing to happen is a massive stroke or seizure and that it could happen anytime. 

I guess my initial question to you would be - what was your experience of the end of the journey?

love n hugs

Wee Me xx

Hi Wee me,

Firstly, Thank you for sharing your experience with this horrible disease with me. I understand how difficult this time is but it sounds like your husband is doing amazingly during this time especially with being a marathon runner! That’s incredible! 

My Dads GBM4 also impacted his understanding, memory and language. His movement was also severely affected by the tumour and he found it hard to walk a few steps some days.

I’m glad you have mentioned about the NHS as we had a very similar experience. My Dad decided that he didn’t want anymore treatment towards the end as it was doing more harm than good. From then on, we never had any contact other than to do MRI check ups. I have found this group to be so helpful when my Dad was going through this as sometimes when you need answers or worried about something etc, the NHS aren’t anywhere to be seen.

Towards the end of my Dads journey, it became very difficult. We had a hospital bed put in for him as getting up the stairs was no longer an option. He would sleep 90% of the day and wouldn’t want to eat at all. It was even difficult to get him to have drinks. He became very weak where he couldn’t walk or even talk as he had no energy. He also suffered towards the end with terrible headaches and sickness. We made the decision to take him into a hospice as we felt it would be safer than him struggling at home.

In the hospice, he suffered terrible seizures. He was on a driver for his medication at this point but he wasn’t eating or drinking. On his last day, he suffered a massive seizure and after lots of medication to calm it down a little bit just so we could say goodbye, he passed away.

If you ever need to chat, please don’t hesitate to drop me a message. It is such a difficult time but You and your husband sound like you are doing an incredible job during the circumstances and I am sending you all the love and support for you both to get through this x