My husband was diagnosed in 2017. I found this forum quite helpful in the beginning, but haven’t been here for a while. Mainly as my husband - Anthony- has survived so long. Apparently he’s in the top 5% of survivors, which I am so grateful for, until recently.
He is now in decline. The tumour is stable still. But the damage from radiation is now taking its toll. He’s a fighter Anthony, but seeing him like this is heartbreaking. The tumour site is left frontal lobe, so all his right side is affected. Mobility is poor, yet still gets up for the toilet. The last 12 months we have seen a slow decline in general. Over Christmas he stopped eating - saying there was ‘nowhere to put it’ when offered food. That turned out to be a tablet his Gp started last year for an apparent uti/prostrate problem, that ended up having a catheter put on, which was totally unnecessary. Urology advised us in December he had never had a water infection!! As soon as I stopped the meds for prostrate trouble he started eating again.
He has been referred to a neurologist, who says in his letter (that was supposed to suggest reducing seizure meds), that he has “worsening encephalopathy”, due to late effects of radiation. He’s going to be “ increasingly drowsy and unresponsive”. He suggests the GP arrange sufficient palliative care.
Hes been under palliative care with the local hospice since the beginning. Told he would last 12/18 months by the oncologist at the time.
Is anyone else going through this? I just want to make him comfortable, but he’s been wearing an eye mask for months now, saying his sight is going. (Had 3 eye tests - can’t find anything wrong). Becoming unable to say what he wants. Has moments of despair. Talking to a work friend who passed away a couple of years ago from lung cancer. Said he was hiding behind the curtain. I just went along with it.
Im really sorry if I’m upsetting anyone who’s just started this journey, and I have put off posting on here for a while. But please, if anyone has any tips/suggestions etc….
HI Rosvar63
oh what a long journey you have had here with your husband. You must be exhausted. I supported my late husband through his GBM journey for just over 3 years so I can empathise with your situation.
Our oncologist moved G under the local palliative care team about 7 months before he died. I felt at the time that that was just his was of washing his hands of us but with the benefit of hindsight, it was the best thing he could have done. The local team were fantastic and were available 24/7 should we need them. Simply knowing that there was a phone number I could call day or night and that someone would be there to help me was a huge weight of my mind. I'd strongly suggest you reach out to your local team and explain what your current situation is.
The eyesight thing I can relate to. G had issues with his eyes for most of his GBM journey. We were told it was the tumour interrupting the messages from the eye through the brain and not actually an issue with the eyes themselves. G described it as tunnel vision that eventually became very narrow in one eye. He tried an eye patch but with little success.
To be honest, as a family, we humoured G more and more during those last few months. His speech was poor as was his understanding. If he was talking nonsense, we let him. None of us had the energy to explain to him that he wasn't making sense, Early in his journey, he made us promise that if he was talking gibberish, we were to tell him. My daughter tried that once and he sulked for 3 days.
Everyone copes with this journey in their own but I found it easier to take the path of least resistance. I let him do what he wanted to do or felt like doing within reason, making sure he was as safe as I could keep him. In early August, after a short stay in our local hospice to bring seizures under control, I actually had the chat with the dr that I couldn't guarantee to keep him safe if they allowed him home. She understood and acknowledged that.
As a starting point, I'd suggest you talk to your GP and take it from there. They will be able to advise what support they can provide to help here (every area is different) and perhaps put you in contact with your local hospice community team.
This is a safe and supportive space so please reach out here anytime. You're not alone. We've got you.
For now though I'm sending you a huge virtual hug and lots of strength. This is a gruelling emotional rollercoaster tide and my heart goes out to you.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thankyou wee me 
.
we have been under the local hospice for a while. We have visits from “hospice at home” every couple of weeks and they tell me to get in touch if needed. However, when I have I’ve always/usually been passed back over to the GP, who you can only contact now online, completing a form, between 8-10 in the morning. I find it all long drawn out and off putting to be honest. I’ve mainly contacted them re:constipation, due to the morphine tablets he’s on. It’s a vicious circle and I’m drained with it all. But I won’t be giving up - I think I need to pester the Gp again to hopefully come out and see him personally.
ive just read about your journey. So gruelling and sad. Anthony had just turned 55 when he was diagnosed. Thankyou for taking the time to reply.
love & hugs to you too xx
Sheila.
