Hi everyone, I've just found this forum and how many stories are so similar to my mums, she is 56 and very healthy and then one week before Christmas she starting getting confused with terrible headaches, on Christmas day we took her to the hospital where over the space of 5 hours we found out that she had a brain tumour and it was cancerous, unfortunately it took us 1 month to find out it was glioblastoma, and what makes my story different to a lot of others that I've read on here is that they told us it was inoperable. It makes me wonder how many glioblastomas are inoperable as I struggle to find any examples of this and life expectancys when not treated. The tumour I'm told is very aggressive and behind her eye. If anyone else has been told there's no treatments available I would really like to hear how they dealt with this, It's been 2 months now and I'm so grateful that my mum is still able to do certain things, however she is starting to sleep a lot now maybe 80% of the day, I know every diagnosis is different but I am curious how close to the end she is, she's still eating and drinking really well and able to understand what's going on. Again reading everybody's stories has really touched my heart and I share all of your pain, I'm only 24 and I never imagined this happening to my mother at my age, life is so cruel.
Hi Leigh,
Welcome to the group and sorry to hear the awful news about your mum. There's no simple answer as to when a tumour is inoperable. My wife's tumour is in her right frontal lobe and after initially being told it was inoperable they did decide in the end that they would try. We had a close colleague though with a GBM in the right frontal lobe that wasn't. It just depends exactly where it is down to the millimetre and the patient's current condition and any co-morbidities.
Is your mum being given any treatment at all? Radiotherapy and/or chemotherapy? Has she been referred to a palliative care team yet?
It's natural to want to know how long she might have but it does depend on a lot of factors. So even a good internet search is probably going to give you a very wide possible range. The rule of thumb I've heard used by palliative care teams and is cited here quite a lot is if symptoms are noticeably worsening month to month then it might be months if they're worsening week by week then it might be weeks or if they're worsening day to day then it could be days. However this is a very rough rule and her palliative care team will be able to talk to you about this based on her specific circumstances.
Don't forget to take care of yourself through all this and do use this group for any question or to just vent. It's OK to not be OK.
All the best,
Chris
Hi Leigh
a warm welcome to the group. So sorry to hear about your mum and all that you are going through. Life's too cruel.
I'm supporting my husband (now 53) through his GBM4 journey. He was first diagnosed in Sept 2020. Our kids are around your age (23 and 25) so I can empathise with how you are feeling. It's breaking my heart watching them have to deal with this at such a young age.
Everyone travelling this journey is unique and there have been stories on here of people where sadly the tumour has been inoperable for a variety of reasons. The common theme seems to be steroids and anti-seizure medication but your mum's medical team are the best to advise on all aspects here.
Timescales are a tricky one and to be honest, one I treat with an element of caution. We were told my husband had 12-15 months in Sept 2020. He's still with us, albeit he is now approaching the final phase of this journey. Timescales are best guesstimates based on published averages. No one is average - we are all unique.
I took the liberty of looking up some info for you from the main website. It might help a bit Supporting someone | Macmillan Cancer Support
This group is a safe and supportive space so please reach out anytime. As you've already seen there's always someone around who gets it, someone to listen, someone to hold your hand and to offer that virtual hug when its needed. You're not alone.
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 make sure you're taking good care of your wee self here too. You've had a lot to process and get your head round so please make sure you take "me time" to keep your own batteries charged. Even an hour chatting to a friend over a coffee can make a huge difference. It's not selfish to do this, its essential to help you stay in the best condition to support your mum. This is a gruelling emotional rollercoaster ride but you will get through it.
For now though, I'm sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
