Please give me some advice

You have been through a huge shock and processing is different for everyone

for me I had to compartmentalise my worry - and send my 'energy' into planning and action ( just a day at a time !) . I am not sure if that works for everyone but for me it was about focusing on what I could have some control over to keep me calm. If you can chat to someone - even if its samaritans , I believe you can start to reflect and slow down your panic. Good luck and take care 

Thank you for your reply. It has definitely been an enormous shock. I really want to be able to cope in that way, I think I just need to figure out how to process it and get my ahead around it first. It’s such a lot to come to terms with 

HI Mummamel

a warm welcome to the online community. So sorry to hear about your mum. Life's too cruel for words sometimes.

I can empathise with what you are going through as I supported my late husband G through the 3 years of his stage 4 brain tumour journey. Nothing prepares you for the initial shock and disbelief of any diagnosis. 

Not knowing what journey lies ahead is a 1000 times harder than knowing what your are dealing with. For now can I suggest that you write down all your questions, fears/concerns and take those notes to the appointment. They'll act like a script and help keep you on track and from forgetting to ask about something that's important to you and your mum. These early appointments can feel quite overwhelming but remember there is no such thing as a stupid question. Please promise me you'll steer clear of Dr Google. He's a scary dude. Focus on the facts as you've been given them not the what ifs. Easier said than done I know

There is some generic info on the main website. I've pulled together some links for you and your mum.

Supporting someone with cancer | Macmillan Cancer Support

Cancer diagnosis | Macmillan Cancer Support

Understanding primary brain tumours | Macmillan Cancer Support

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

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.

For now though I'm sending you both a huge virtual hug and lots of positive energy. You are coping so much better than you give yourself credit for here but you'll just need to trust me on that.

Love n hugs

Wee Me xx

Hi Wee Me,

I am so sorry to hear about your husband and you are right, life really is cruel sometimes isn’t it. It’s only been a day and I’m already looking at the world in a completely new but bad way. 

thanks for pulling together all those links for me and on my other post as well, it’s really appreciated and I will be sure to look through them all. 

the waiting and not knowing is definitely really hard, I have no idea what we are dealing with him but I’m under no illusions it’s not great going by what the doctor said. Hopefully next week we will hear more from the MDT meeting. I really hope there is a path forward and they aren’t just going to write her off straight away. 

thank you again so much for your help and kind words x

MDT meeting was yesterday and we’ve had a call today to say mum needs to go in tomorrow for an appointment. My dad hadn’t said much else about what they said over the phone just that they will need to biopsy it (not tomorrow but soon) does this sound like normal procedure? He looked very teary when he got off the phone so can’t help but think he’s not telling me something. Would they have given bad news/prognosis over the phone like that or am I just being paranoid? I know it’s not gonna be good as know the outlook for someone with a glioblastoma but I just want to know what’s going on 

Yes, a biopsy is normal procedure. Although they can tell a lot from scans its not conclusive. I was asked if I just wanted the biopsy or the tumour removed which seemed sensible if they were opening my head anyway. 
ive been given bad news over the phone initially. However I am the person with the tumour not a relative. 
every case is different but I would not be pleased if my health were being discussed with anyone other than me! Hope it goes well

My mum has given permission for my dad to take all the phone calls as she’s getting very confused at the moment so hence why they spoke to my dad. I’m hoping they also give her that option as it seems like the most practice thing to do, assuming it can be operated on. Absolutely out of my mind with worry especially as the dr in the hospital when she was admitted and delivered the news said they probably wouldn’t biopsy it. 
I hope that you are doing okay and thank you for replying to me 

HI Mummamel

scary times but I can empathise with what you've said.

With G the MDT initially said they would biopsy but a few days later changed their mind. The appointment we had 2 days after the MDT decision was the pre-op assessment where we met the neurosurgeon to review the scan images and discuss the plan.

Its not impossible that they've said to your dad that based on the images it could by X or Y. With regards to timelines, these aren't necessarily accurate even when they are given.

Are you able to attend the appointment with them? These early appointments can be quite overwhelming and it might be an idea to go along if you can. I'd suggest either way that you and your dad write down all your questions, fears. concerns and take those notes to the appointment to try to ensure that you don't forget to ask about something that's important to you all.

For now though, focus on the facts as you know them. Don't think on the what ifs and please steer clear of Dr Google. He's a scary dude.

One step at a time here. 

Hope you get some answers, even if you don't like them, tomorrow as not knowing is a thousand times worse than knowing. 

Sending you a huge hug and lots of strength

Love n hugs

Wee Me xxx

Such scary times. May I ask why they changed their minds? Unfortunately my parents don’t want me to attend the appointment with them. I think they want to deal with these appointments alone which I understand as they probably don’t want to have to worry about my reactions as well. But I’m a control freak and chronic worrier so it’s tough for me to not be there to ask the questions. X 

Hi

I get it - parents instinctively want to protect their children no matter the age of the adult child. Not easy on you though as you're getting it all second hand. My kids were 20 and 22 when their dad was diagnosed and we didn't take them to any of the pre-surgery appointments. They were present for all others, although most of them were video calls which was far from ideal.

The neurosurgeon explained to us in G's case that he was 95% confident from the scan images that G's primary brain tumour was a Glioblastoma. Due to G's age (50 at the time) he said he wanted to operate as soon as he could. Our timeline, even considering it was during lockdown was scarily fast. G got his initial diagnosis of there being a "something" on 26 Aug. The MDT initially said to biopsy but we got a call on 2 Sep to say that they had reviewed the images again and changed their minds. We saw the neurosurgeon on 4 Sept, had the pre-op appointment on 7 Sept and G's craniotomy was 9th Sept. By 16 Sept we had the pathology back on the golf ball sized mass that confirmed it as being a glioblastoma. The timescales they gave us were scary but G way outlived them all. Initially the neurosurgeon said 18-24 months then revised that post-op to 12-15 months. G lived for 3 years 2 months and a day from his initial diagnosis so I quickly learned not to trust any timeframe that was mentioned.

Sorry if this is scary but I want to be open and honest with you. Just because this was our story doesn't mean that this is what your mum is facing. There are thousands of different types and grades of tumour. We were unlucky and got hit with arguably the worst of the worst.

love n hugs

Wee Me xx