Advice on treatment timelines please

Hi, I was recently diagnosed with a grade 4 glioblastoma, it took 2 weeks from diagnosis to a plan and another 2 weeks from the plan to the operation. I’m currently waiting another 7 weeks for radiotherapy to start and I feel from talking to doctors  and nurses it’s a pretty normal timeline. I have a few scans and appointments in the meantime. They need to let any surgery heal before they proceed with my treatment.

I think to make a plan involves a lot of different departments and people so the plan is made by lots of different experts, or was in my case anyway.

i have to say, all of the care I have had has been fantastic, all on nhs.

best wishes to you and your mum 

HI JanB

a warm welcome to the group. Sorry to hear about what you and your mum are going through.

I am supporting my husband through his stage 4 glioblastoma journey. Similar to Shakeout mentions below, he was two weeks from initial diagnosis to surgery then about 6 weeks after that before he started his 6 weeks of oral chemo/radiotherapy. 

There are no hard and fast rules here. Every health authority differs slightly but they all seem to only have weekly MDT meetings where individual cases are discussed in detail. Every tumour is also different (different size/location/age and health of patient) so these have to be considered on an individual basis. 

I appreciate that it all feels like slow motion just now but a wait is perfectly normal. To be honest, if they were rushing it all, I'd be more worried. My husband was diagnosed at the end of August 2020 and those first 3 weeks were a total whirlwind for us a family. Not knowing is far harder than actually knowing what you are facing but please try not to Google (easier said then done and we've all done it) Wait until the medical team confirm exactly what is going on and hopefully it might not be as horrendous as you fear. Our neurosurgeon was brutally honest with us from day one so we knew my husband's diagnosis was a terminal one. That said, he's far exceeded their expectations and is still doing well. 

Please reach out through this group anytime. It's a safe and supportive space. There's always someone around here to listen, someone who gets it, someone to hold your hand and offer that virtual hug when it is needed. These first few weeks are scary and are an emotional rollercoaster for everyone involved. All these emotions are normal too so please don't be too hard on yourself here. I cried oceans of tears in those early days- some days I still do. 

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.

I hope this has been of use. 

For now, I'm sending you both  huge virtual hug. Stay calm. Breathe and take this one step at a time. You're not alone here.

love n hugs

Wee Me xx

Thanks Wee Me. The problem is, my mum has been in hospital for 11 days, and we haven’t spoken to a doctor yet so I know it a glioma but nothing else.  They haven’t done a biopsy yet.  Do this mean it’s particularly bad news? We have a meeting with the consultant for the first time tomorrow and I feel so scared.

my mum and I haven’t always had the best relationship.  She has a long history of mental health issues which I struggled with.  Of course now I feel guilty.  I already miss her, she’s changed so much.  She drives me crazy but she’s my best friend and I miss our chats.

 Thanks JanB

Morning JanB

hope your appointment with the consultant goes well today and that you get some clarity about what the way forward looks like here.

Take this one step at time. Breathe. Reach out here anytime. You're not alone. We're right here with you.

love n hugs

Wee Me xx