Husband has glioblastoma

HI sillylinda

a warm welcome to the online community. So sorry to hear about all that's going on.

I supported my late husband through the 3 years of his Glioblastoma  and had a love/hate relationship with his medical team to be honest. He was able to have surgery and the neurosurgeon and his team were fantastic. The oncolocogy weren't so great. G was passed into the palliative care phase about 8 months before he passed and I was left feeling that the oncologist couldn't wait to hand us over. We never heard from him again.  I guess what I'm trying to say is don't go looking to neurology for support. Focus on building the local support network around you both.

Being passed into the palliative care phase was the best thing that happened to us all as a family during G's journey. We got to know the local community nurses and the local community hospice team. Having a local phone number that I could call 24/7 and know that help was at the other end lifted a huge weight from my shoulders.

G chose to die in our local hospice and they were fantastic. They wrapped their arms round all of us and ensured that he passed peacefully and pain free. The staff had got to know us as a family so we weren't surrounded by strangers and that was a huge help.

Everyone's journey is unique. Take it a day at a time. Its an emotional rollercoaster ride for all involved so please make sure that you take some "me time" to recharge your batteries too.  I personally drew a lot of support from this community. There's another couple of groups you might want to explore-

 Cancer carers forum | Macmillan Online Community

Glioblastoma multiforme brain tumour forum | Macmillan Online Community

I've written a few blogs for MacMillan's community blog space. These two might help too in some small way

Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

“I’m fine”: how do you really cope as a carer? - Macmillan Online Community

 This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

If there's anything I can support with, just ask. I'll be open and honest with you.

For now though I'm sending you a  huge virtual hug and lots of strength.

love n hugs

Wee Me xxx

Thank you so much for all of that. I have got community support so hopefully I can call on them to help me make the right decisions. I’m not at work at the moment. Not able to care and work. 

Hi Sillylinda,

I hope you are holding up. It is a rollercoaster.

My husband was diagnosed in January, following full seizures on the 2nd of January. He will not be receiving any treatment either. He is also on steroids and anti seizure tablets.

I have been trying to read everything I can online, so I’m aware of what to expect. The oncology team gave us the diagnosis and explained that treatment was not recommended, they then asked my husband whether he wanted the prognosis, which he did not, so that was that. 

He has not been able to have a proper conversation since then and is now at the point where he will repeat words or only answer yes or no. So I feel like we were never able to talk about certain things. 

He had a fall on Monday and had to go back to hospital, which made him very angry with me. He has been very loving and affectionate until now. We are now waiting for a bed in our local hospice, as I am struggling with all the demands this condition brings as he is now bed bound. We have no family locally. 

What has upset me is that there is so little understanding of the effects of a glioblastoma, even within the hospital staff. Today someone called me to discuss discharge from hospital as my husband ‘refuses to talk’. I had to explain that he struggled to find words, even though the few words he says are very clear. He can largely follow what is being said, he does not have dementia. 

I also have to remind them that he cannot use his mobile, so he is not updating me on what he is being told by the medical team. They expect patients to be in touch with family. 

Our GP and local teams have been brilliant, but I feel that this is a disease that goes too quickly for the support to keep pace with our needs. He was very fit and independent before, running his own business. This changed overnight and has been a huge adjustment. I have had to take time off work too, as he cannot be left alone. 

We have focused on creating memories around food and enjoying meals, as this is the only pleasure left to him. I have rented a wheelchair to get us out and we have been to friends for lunches and dinners. He still enjoys music. i requested a blue parking badge and this came through within a week and has been a huge help.

i hope you have lots of support from your GP, district nurses and palliative care team, as they have the best understanding of what you might need day-to-day.