Hi
my husband has third time recurrence of gbm. ( previously had two surgeries, radiotherapy and TMZ) his oncologist has now moved him on lomustine. He seems pretty quiet and withdrawn at the moment. I don’t think there will be a third surgery as there is tumour in places they could not operate last time.
Does anyone else have a similar story/ journey. He won’t ask for any idea of time frame left which I understand but as the person left wanting to make sure all is as well planned as can be I would find some comfort in an idea of time frames, of course not to share with him.
Hi Dek
a warm welcome to the community. So sorry to hear about all that you and your husband are going through. Life's cruel.
I supported my late husband through his GBM journey. He was first diagnosed in Sept 2020 and after surgery and the initial 6 weeks of radiotherapy he declined all further treatment, a decision I had to respect. (You can read the gist of our journey in my bio) As a result I'm not perhaps best placed to support with any queries about lomustine. I'm sure others will be along shortly though to share their words of wisdom.
I totally get not wanting to know the timeframe. We were initially told in Sept 2020 that G had 12-15 months. In the end he had 3 years, 2 months and a day. Timeframes are published averages based on best guestimates and no one is average. Everyone is unique as is their GBM journey. I found the timeframes we were given quite stressful as his wife and carer. Once the "best before" date was passed I was fretting about how far beyond it we would go. Our last timeline was given in Feb 2023 when the oncologist passed us off to the local palliative care team saying G had a few days, potentially a few weeks. G passed away on 27 October some 8 months later....go figure.
I get the wanting to be as well planned as you can be ahead of time and that's a sensible thing. Have all the difficult conversations "just in case" and get those ducks in a row as best you can. Talking about the end of the journey is hard but it does help to know what the person wants so it is worth the pain of the conversation as it saves pain further on when perhaps they are unable to tell you. G told us he wanted to die in the hospice. He 100% did not want to die at home. He was scared that it would be painful. Our local hospice were fabulous. We got to know the community team over those last 8 months and when the time came, he was admitted to the hospice and kept medicated so in the end he knew nothing about it. The hardest part was watching....
Morbid as it may sound, funeral planning is also an area to think of. What kind of service do they want? What do they want to wear? What music do they want played? These things are important and if we don't ask when we can then you could be left floundering in the dark a bit as I was. All I knew was that G wanted cremated but wanted a headstone. I did ask casually one day what did he want to wear and he said something smart and casual.
Take this journey one step at a time and try not to fret about the "what ifs". Easier said than done. GBM journeys are an emotional rollercoaster ride for all involved but you will get through it. There are no hard and fast rules and things can change in a heartbeat. What I will say from experience, when you reach the final phase of the journey you'll know in your heart what's ahead. Keep in close contact with your medical team, your community nurses, your local hospice and they will guide you through whatever is to come.
For now though, enjoy the time you have and make memories. G wanted to live the best quality of life rather than the longest life. His last day that he knew anything about was a good one. He cycled in the garage on his bike for 3 hours, went out for the afternoon with a friend and had a huge ice cream sundae and a trip on a local ferry then a nice drive home through the countryside. I draw comfort from the fact that he'd had a good day.
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 that 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.
Please also take care of your wee self. Don't underestimate the toll this journey is taking on too. Take time for yourself where you can to recharge your batteries, even if its only 10 minutes to walk round the block or to sit with a coffee and a book.
I've waffled enough. If there's anything I can do to support, just ask.
For now though I'm sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
