Just got out of A&E

I suppose you will have a meeting with a neurosurgeon to discuss your options, and possible surgery. Unless they decide it's not operable and they then send you to the oncologist. Most commonly they/you will want to know what it is exactly, so you need surgery/biopsy to check it out. If they propose only biopsy, or even no biopsy, I would then go see another few surgeons to get second opinions. How much steroids are you taking? And why did you go into the A&E in the first place?

I woke up drooling to the point of drowning. Then speech got worse be worse. 11 sent me to AE  who thought it was a stroke and sent me home . Folliwing night bad speech and facial spasms tic wife drive me back. Admitted to acute ward. Then kicked out for Covid space

Hi there, I am sorry this all sounds horrible. I had no idea hospitals were so full either. Although I was also kicked out of ICU for someone else who needed it more and that was 10 years ago, no Covid then. Have you had an MRI yet or just a CT scan? You can now wait a couple of days to see what they say.

MRI shows tumour in right parietal cortex. Peripheral not too deep. Want to attack this. The barbarian is not at the gate, they are sitting in my innermost sanctuary. 

HI Mat

a warm welcome to the group. Sorry to hear about all that you are going through. I can empathise with where you are at emotionally.

I'll try to allay some of your fears as best I can based on my experience of supporting my husband through his brain tumour journey.

In  July 2020 he had a "funny turn" while out running. (He's now 52 and a marathon runner) He lost the ability to form words, to speak and to read. Move forward to early Sept 2020, after going to an online GP and a hospital referral, an MRI showed he had a tumour in the Broca's area of the brain (the bit that controls speech, language and understanding).

The next step was a referral to the neurosurgeon to discuss the MRI and CT scan results and to plan a way forward. Initially they spoke of doing a biopsy but a few days later decided the better plan was to do a craniotomy to debulk the tumour. After his surgery, he had about a month's recovery time then he was given 6 weeks of oral chemo and radiotherapy in combination. 

Easy for me to say, but please try to remain positive here. Focus on the known elements and not the "what ifs". Write down all the questions that you have for when you get the oncology appointment through. These can be overwhelming and its easy to forget to ask what you really wanted to. If its written down then you can take those notes as a prompt.

We were advised at the outset to look to getting the financial affairs in order- will and power of attorney- so personally, I'd advise you to do that. It's not going to do any harm.

This group is a great source of support and I can see you've already been chatting in the posts below. It’s always good to talk so remember you can 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 helpful. Stay positive. Stay strong. 

love n hugs

Wee Me xx

OK - I'm back.

Surgeon says Glioma. Surgery, chemo and radio

My mental state is disastrous I have to deny the facts or I  simply wouldn't be able to walk about.

Pointless stupid way to go. Wife will be OK, there's cash and the house is nearly paid off. Lawyers are in train. The practicalities seem simple. Put your affairs in order, then leave the planet.

I have no idea what people even mean when the say "process" this. Seriously ? I can process it just fine. Emotionally I'm rubble.

Do not despair. You can wait to see what the biopsy shows. There are patients who live many decades with a glioma. I would advise if you go for surgery you need to go to the best surgeon money can buy you. I would recommend Mr Stapleton. Of course (brain) surgery is like a live violin or piano recital. If you see what I mean.

HI

one step at a time here. So sorry to hear that you're struggling with all of this but its a huge amount to try to process. It takes time. Be patient with yourself.

Try to remain positive till they tell you what type of glioma you're dealing with.

In our case, the neurosurgeon shot straight from the hip and painted a bleak picture from day one. They gave him 12-15 months. That time was up on 26 November and he's still here. 

My husband has still had a good quality of life for the past 15/16 months. I guess part of it depends on where the tumour is in the brain and what it could impact. His was all in the speech/language/understanding bit. Physically he's still in good shape. He ran 13 miles yesterday. In fact, without a word of a lie he's run more than 2250 miles this year. That's his coping mechanism. Yes there are things he wants to do and covid restrictions have prevented them from happening. He has had to accept they may never happen sadly. 

I guess what I'm trying to say and not saying it very well, is that yes things might not be great but there are still positives. 

Take things one day at a time and when the day looks long and a bit bleak, take it one hour at time. Don't be too hard on yourself for how you are feeling. This overwhelming rollercoaster of emotions is natural. 

Hang in there. Sending you a huge virtual hug.

love n hugs

Wee Me xx

I must admit to being curious to how losing language affects him, and you. Trying to keep chin up and all that but it's all front.

Thank you. Proably best words. Do not despair. Hard though. Pretty much an abyss right now.

And yes, virtusos