Hello everyone , I was diagnosed with a,primary brain tumour on 25 May 2022 I was told that the tumour was a glioblastoma Idm wild type grade 4. I had a 97% resection on 24th June 2022 and am waiting to start chemotherapy and radiotherapy on
I had 24th August 2022 .Although I can accept my fate it is destroying me see my wife trying to cope .
We have been married for 34 years and the night of my surgery was the only night we have ever spent apart in all those years . She keeps asking me not to leave her and I feel devastated that I cannot do more for her , everything legal has been sorted and I think I have covered everything else else legally . But 8 do feel so bad having to leave her after all of these happy blissful years .
I'm sure 5his is quite common but I feel so bad not being able
To provide and protect her after all these years .
Thank you charlie
Hi CharlesD
a warm welcome to the group. So sorry to hear about your diagnosis and all that you've been through.
My husband was diagnosed GBM4 in Sept 2020 just few days after our 25th wedding anniversary so I can empathise with the journey you are both on. It's an emotional rollercoaster ride. I am so touched that you are so concerned about your wife and her emotions.
He too had surgery to debulk the tumour followed by the 6 weeks of radiotherapy/oral chemo combined and coped really well with it. He's a marathon runner and is still running around 60 miles a week. Physically he's in great shape. His tumour has impacted more on speech, language and understanding. He declined all further treatment in Jan 2021 and decided to let things run their course. So far so good.
It's still early days and I remember those first few weeks being completely overwhelming emotionally for my husband, our two kids (then 20 and 22) and myself. We all went through every emotion in the book and then some. I've cried oceans of tears but this forum has been a huge source of support to me personally.
When she feels ready you might want to suggest to your wife that she reaches out here too. Or if she wishes to message me, I'm happy to support where I can.
There is another group you might wish to explore Glioblastoma multiforme brain tumour forum - Macmillan Online Community.
This is a safe and supportive space so please reach out here anytime. There's always someone around who gets it, who understands, who is there to listen and offer that virtual hug when its needed.
It’s always good to talk so please remember that you and your wife 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 both a huge virtual hug. Hope the treatment goes smoothly.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi
you're not being rude - its a fair question.
It's not necessarily a straightforward one to answer. I have to start by saying he always was a control freak and stubborn!
There's a few parts to it. First off, he hates hospitals, pills, needles etc. He got it into his mind that it was the TMZ dose from the first 6 weeks of treatment that was making him feel tired and yucky. He was never actually sick but felt a bit sicky most days towards the latter half of the treatment cycle. In reality it was probably a combination of the pills and the radiotherapy. The fatigue that came with the 6 weeks annoyed him - he couldn't exercise. When the Dr explained that the 6 months of oral chemo would be double the previous dose for a week then 3 weeks off, he decided he didn't want to feel too tired and yucky to run. Running is his primary focus in life. He felt if it meant he couldn't follow his training plan for the Manchester marathon which was in April 22 then he wasn't doing it when he was told the treatment would only extend life expectancy by a short period of time. To him, quality of life is more important than quantity. He's said if he can't run then he doesn't want to be here. Hard for the kids and I to hear but we understand how stubborn and driven he is.
He's also got it into his mind that this journey is all about him and that its not impacting the rest of us. He says nothing has happened yet. That may be as a result of the impact the tumour has had on his brain. But he made the decision to refuse all further treatment off his own back. Way back on day one when his diagnosis was confirmed I promised to support whatever decisions he made and that's what I've done. Doesn't mean I agree with them though.
His was originally given a prognosis of 12-15 months. That timeframe ran out in Nov 2021 and we've been in limbo ever since with regards to what time is left. That in itself is tough on everyone. He intends to run til he drops. He ran a personal best time in Manchester in April, completing it in 3:15:28 some ten minutes inside his previous personal best. Now his focus is the London Marathon in October and yes, you've guessed it - he wants another PB. I hope he gets it.
I have no idea how he is managing this. Ask him to run 26 miles and off he trots. Ask to read this reply or to go to the bar for a round of drinks and he can't do it. The reading skills are gone and the short term memory is gone. My son watched him make a cup of tea last week and he had 4 attempts at working out what he was missing from the mug. It was the water. That's what makes this hard and cruel to stand by and watch unfurl.
That's just our story. Everyone on here is unique and going through their own personal journey. These evil tumours impact people in so many different ways. There's no right or wrong way to approach this. There's only the way that works best for you.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
