My husband was diagnosed in June last year. He had successful surgery to resect the tumour followed by the standard radio and chemo which he tolerated really well. He then started his 6 cycles of chemo. From post surgery to the beginning of December he was just like his old self and I was lovely. However he started to get a bit forgetful and confused in December and we were told it was probably a delayed response to the radio and him overdoing things. On Christmas Day he had an episode where he could move his left leg. The episode was short live but occurred 3 more times over the next few days. It became apparent that this was most likely due to him having small seizures (something that he had not had up to this point). I started to fear the worst. On 7th Jan he had his scan after 3 cycles of chemo and that afternoon I was called to say that they had seen swelling on his brain and he needed to start taking steroid that day. Alarm bells were really ringing now.

on January 10th (my husbands 50th birthday) we were given the worst possible news. His tumour had grown back. We were told about the second line chemo and that it has only a very small chance of being effective. A week later we went back to clinic for review and his first course on lomustine. 

We are due to go back to clinic next week for his next review and second round of chemo but I can see that his cognitive skills are deteriorating. Those alarm bells are ringing loud in my ears and I am already fearing the worst.

We stay positive because you have to or else you would never get through.

To some extent I have already lost the man that I love. When we go out it’s like I’m looking after a child. 

We are trying to get him onto Avastin (we are struggling with getting him off steroids) and have started next generation gene sequencing and hope beyond hope that they find something that they can use against this bastard of a disease!

It’s a constant emotional rollercoaster on a continuous loop and it’s draining. 

 Most days I can stay positive and not let it all get on top of me. Some days (when he has a particularly bad one cos he’s overtired) I really struggle. Today, as you might have guessed, I’m struggling.

  • Oh wow. I can Feel the pain in your words. We are going through a fast forward version of your story. My sister who is 53 was diagnosed with GBM4 jan 3rd 22 and operated on 7th jan 22. Although the operation was successful her recovery is very slow. To this day she is too weak for radiotherapy so they opted for chemo first. Only to then catch covid. This had further delayed her treatment. Her headaches are intolerable and has ended back in hospital with only 4 days at home. We are waiting another MrI before they decide what to do.  

    i wish I had words of wisdom for you. Anything to bring you comfort. Just know that your not alone. 

  • HI Lottie71

    I hope today is a brighter day. 

    My husband was diagnosed GBM4 in early Sept2020 so I can relate to the emotional rollercoaster ride that you're on here. It's unrelenting and like you I feel stronger some days than others. Must have been something in the air yesterday as I had a bit of a meltdown too. I bumped into a close friend unexpectedly and all they asked was if I was ok and I burst into tears and sobbed all over them. Did me the world of good!

    My husband was 51 when he was diagnosed. A week after his initial diagnosis and 2 days before his surgery, he had a seizure and I feel I lost him to an extent then. He was never the same person after that. His tumour has impacted his speech, language and understanding and has left him a bit like someone with early stage dementia. It's like living with an over tired unruly toddler most of the time!

    This group has been a great source of support to me. There's always someone around to listen who gets it and someone to offer a virtual hug when its needed. 

    It’s always good to talk so remember 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.

    For now, I'm sending you a huge virtual hug. Hang in there. You're doing great here!

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • We’re on a particularly rough stretch of track at the moment. The day after writing my post my husband had another small seizure and then another later that day. His anti seizure meds have been increased and touch wood the seizures are under control buts he’s so tired all the time and his confusion is worse if anything. He’s still eating like a horse though so not everything is doom and gloom. 
    I’m so scared we are heading towards “the end” and I can’t bear the thought of a world without him in it.

  • Hi Lottie

    sorry to hear its been a rough few days. I hope things settle back down for you both. At an educated guess, I'd think the seizures would have taken it out of him more than he maybe realises so fatigue and confusion are to be expected. If it lingers longer than you're happy with, I'd suggest you link in with your medical team to put your mind at ease.

    Confusion can be so hard to deal with. I find myself getting frustrated at times with my husband's confusion and really have to bite my tongue.  

    My other half hates taking his Keppra. He hates taking any medication. He keeps saying "But I don't need it. I've not had a seizure for months." When I explain "Yes, I know that but that's because you're taking the Keppra" He argues but "I don't need to take it as I'm not having seizures." and on and on it goes....  that's where the compromise in his level of understanding can be really hard to live with. I'm trying to resist using the "mummy voice" with him! LOL

    He too eats like a horse which surprises me. I do wonder if he snacks so much because he's forgotten he's eaten dinner mind you. He's a stick insect so its not causing any issues other than when I go to get a snack they're all gone!

    Stay strong. Stay positive. 

    sending you love and hugs

    Wee me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm