Hi everyone
I hope you don’t mind me joining in
i am mid 40s with a wife and 4 children.
I’m new here, I was recently diagnosed with a stage 4 glioblastoma.
It started out about 8 weeks ago I was sent to accident and emergency department because I’d had a headache my doctors couldn’t shift.
They gave me a ct scan and immediately told me they had found a large tumor, I was sent home next day after being told I would be discussed across various departments and they would get back to me to let me know if I could be treated.
a week later I had a call to say that addenbrookes had agreed to take me on and try and treat my tumor.
at our meeting with our addenbrookes surgeon he outlined the prognosis and treatment. He proposed to remove as much of the tumor as possible as quickly as possible because it was very large and would become life threatening within a few weeks.
he did the operation 4 weeks ago this coming Monday and it went as well as it could, I was fine to start with but had a week when they took me off steroids where I really struggled with pain.
I was then transferred back to my local hospitals oncology dept for the next stages. This was about 3 weeks ago.
I start radiotherapy in three weeks for 6 weeks alongside tablet chemotherapy and then 6 months further chemotherapy.
I have been warned I may lose my short term memory irreversibly and also may become irritable and struggle to read and write after radiotherapy. This is really playing on my mind as up to now I haven’t had any effects really apart from fatigue and headaches which I feel very lucky for. I haven’t had any seizures as yet.
I guess I’m wondering if anyone else has experience of radiotherapy and didn’t necessarily get all these side effects or is it fairly inevitable?
Ive been told my prognosis is around 12 maybe 18 months to live.
my main emotion I’m struggling to shake is guilt at leaving my family behind, not for me but for them, it will be financially harder and the children will be fatherless as well as the huge burden I’m putting on my wife as the lone parent.
Sorry that’s a huge message, lie I say I’m really new to this. Hope you are all as well as can be.
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Hi Shakeout
a warm welcome to the group. So sorry to hear about all that you are going through. Its a rollercoaster ride of emotions.
My husband (then 50) was diagnosed GBM4 in Sept 2020. He too had surgery to debulk the tumour and then the 6 weeks of oral chemo/radiotherapy. After that he decided that he didn't want any further treatment - a decision I've had to respect. His tumour was/is in Broca's area of the brain that controls speech, language and understanding. He also had a seizure two days before his surgery. His short term memory has been very poor ever since He struggles with following instructions and can only a read a few words before he gets too confused to continue. We can't blame the radiotherapy for that . He was a little more confused while going through the 6 weeks of treatment but about a month after it was over that had improved a bit. He had no real side effects form the treatment other than fatigue by week 4 that lasted for about 6 weeks. Now nearly 23 months down the line from the start we are a bit in limbo.
I've come to realise though this group and Glioblastoma multiforme brain tumour forum - Macmillan Online Community that everyone's situation is unique here. Each tumour is different (different size, location etc) and each person reacts differently. There are no hard and fast rules as far as we've experienced.
We were given a 12-15 month timeframe. That expired at the end of Nov 2021 and he's still physically doing really well. He ran a PB in the Manchester marathon in April. He's been skiing with our daughter. He still runs over 50 miles a week and has been cycling too. Just don't ask him to go to the bar for a round of drinks or go into the kitchen for more than one thing - that no longer computes. Mentally he's a bit like someone with dementia. He's had no pain or headaches that he mentions and is only on Keppra as far as medication goes. Long may it continue.
Emotionally this is a roller coaster ride for all involved. I'll not lie- its tough going some days but this online community has been a great source of support to me personally. There's always someone around to listen who gets it. Please remember that these groups can offer support for your wife too. There's also the Carers only forum - Macmillan Online Community. They're there if its something that might help her here too.
It’s always good to talk so please remember you can both 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.
I hope this has been of some help. If you have any other questions that I can try to support with, just ask.
sending you all a huge virtual hug,
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
