I type this with a very heavy heart...
My gorgeous 43 year old wife was diagnosed with a GBM Grade 4 last Christmas and had surgery to debulk just two weeks into the new year.
Radio & Chemo x 30 days followed from February to the end of March.
Following that First Line Chemo from May until August when it showed the tumour had progressed.
Second Line Chemo (Lomustine) started at the end of August with her first cycle but sadly before the 2nd cycle, her blood platelets were too low to continue and as such the treatment was delayed a few weeks.
Unfortunately in that time, my wife's symptoms really took over, over a period of 14 days:
All of the above in just that 2 week period aside from the mobility issues which started to feature about a month earlier.
Just as I was getting people in to help get a stairlift / grip handles / door steps sorted to assist her, on the same morning the Community nurse that viewed her just 3 weeks prior, was left shocked and as always I asked for honesty with her outlook. I was told she had days to weeks to live.
So on Friday, a very hard decision to look at moving her to a local hospice - we hadn't really got to that stage of the conversation with my wife and with very little communication taking place I had to make an awful decision to follow the recommendation - mainly as I had to factor in the wellbeing & future mental state of my two sons (aged 9 & 10). They themselves had seen the decline, the incontinence, I just couldn't put them through anything more at home if it was turn even more graphic than that.
Sunday I had to have 'the chat' with my two boys, people always say that kids are resilient, and I hope that's the case with them. We made a conscious decision in August to tell them that the tumour would end up winning, but I didn't expect to have to tell them in November that mummy only had a couple of weeks to live and that she would be leaving our home to head to the Hospice. It was the hardest conversation I'll ever have with them.
It's been absolutely the worst two weeks of my life.
My 9 year old son has come up with a fantastic idea of bringing Christmas forward, so we're going all out for it on Friday & Saturday (all being well) with Christmas hats & jumpers, Christmas music, presents from mummy to the kids that I'm wrapping tomorrow (even though Mummy is barely conscious now having slept most of the time in the last 7 days), and her friends to come in and not say goodbye, but to say 'Merry Christmas' instead to make it softer for everyone.
The whole point of this post was to give a feel of what to possibly expect as time goes along, and to make the very most of any time that is available to you as families.
We are heartbroken that things have happened so quickly.
One last thing, I always tried to remain one step ahead with what would eventually happen and did find this particular website very helpful (even though I was ticking off the items one by one very quickly) as it kind of told me how long was left and up to now has been proved mainly correct - one question I always tried to get an honest answer to, but appreciate everyone is different.
Anyway, thanks for reading, sorry it was such a long post.
I hope I'll have a few more days with my gorgeous wife in the hospice, and get to enjoy our early Christmas.
Thank you.
Oh Rockwell
I am so sorry to hear that things have taken a downward turn so quickly. Life's too cruel for words.
I love your 9 year old's suggestion about Christmas. Kids are so resilient and inspirational at times. We could learn a lot form them It'll be an emotional couple of days but I hope you can make some fond memories too.
Merry Christmas to you all
love n hugs
Wee Me xx
ps kids are fly too..... expect them to suggest Christmas pt 2 in a few weeks 
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi Strawberry Blonde
Welcome back. Waiting for results is torture. Every three months we were expecting to hear bad news...sometimes we did and sometimes we didn't. Not knowing is a thousand times worse than knowing. I used to wish there was a wee lid on G's head that we could lift and go "oh that's what's going on in there."
Please don't let these posts/stories scare you. Everyone takes a different route through this journey. Ours was longer and less dramatic than many. In some respects I realise we were lucky that we really only had a few weeks towards the end where G was ill and then a week when he was bedridden at the very end. He couldn't have coped with being physically impaired for any longer. The medical team will not let your husband suffer. We spent a 5 days in the local hospice at the end and those nurses moved heaven and earth to make sure G was pain free and comfortable. It was very peaceful in the end. They also wrapped their arms round the whole family and took great care of us.
If there is anything I can say or do to allay your fears here please reach out. I'll be open and honest with you.
For now though I'm sending you a huge virtual hug and lots of positive vibes for Monday. You're coping here so much better than you give yourself credit for but you'll just need to trust me on that.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I hear you. G wanted very little information too. We quickly came to dismiss any timeframes that were mentioned as they are only best guesstimates based on published averages and no one is average.
Initially G was given 12-15 months, That timeline would have run out at the end of Nov 2021. In Feb 2023 we were told he had a few days, a couple of weeks at best. In Aug 2023, we were told to have all the last conversations we needed to have as he only had a few days. He didn't pass away until end Oct 2023.
Throughout G was obsessed saying initially he had five years then he became fixated on it being six months then six weeks. Even the week before he passed he was telling the Dr that he had six weeks. There was nothing to be gained by bursting that bubble of denial.
Sending love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
