This isn’t a group I thought I’d be joining

Hi Jules6789

a warm welcome to the group. Sorry to hear about all you are going through. Not knowing is far worse than knowing.

My experience is all related to supporting my husband with his stage 4 brain tumour journey. He was diagnosed in Sept 2020 and to be honest, started off in the private sector and was then routed into the NHS so that may have tweaked the timescales. I also suspect that each health authority is slightly different. He had an initial scan on 21st August at the local private hospital and the consultant saw "something" that triggered the referral into the neurological science institute attached to a nearby NHS hospital. He had further scans on 26th August  then at the first meeting with the neurosurgeon on 4th Sept we were told what type of tumour he thought it was. Once that had been identified, because of the stage of it I suspect, things moved quickly and he had surgery on 9th Sept.

I would have hoped you'd have heard something by now. I'd suggest that you call your GP in the first instance to chase up the referral. if you were given the name of a consultant at the time, perhaps call their secretary to chase up an appointment.

I'm not about to patronise you and say "don't Google" as its human nature to do just that. Try though to focus on the facts and not the "what ifs" if you can and remember that there are hundreds of thousands of different types and grades of tumour. Everyone is unique here.

Please reach out to this group anytime. It's a really safe supportive space and I've drawn a lot of support from it over the months. There's always someone around who gets it, someone to listen, hold your hand and offer that virtual hug when its needed. You're not alone here. We're here with 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, try to stay as calm and positive as you can. It's an emotional rollercoaster so please remember to breathe.

Sending you a huge virtual hug, love and light

Wee Me xx

Hi,

Thanks so much for your warm welcome. 

I know it’s an Astrocytoma on my right middle frontal gyrus - Whatever that means. Have to wait for an MDT before they come back to me I guess 

I wish I could focus on the facts, but I don’t really have any bar that - I had signed the lease on my new business premises for the next 5 years to start 2 days later  So I’m twitchy to say the least. I really need to work a lot of hours myself to make it work and I don’t have the resources to pay another wage to make it work. 

I think you’re right about the googling, but it’s difficult when you aren’t told anything. 

I have called secretary’s they just say they don’t have access to any info.

I do seem to have “global treatment” on my life insurance. Does anyone have any information on how this works? 

Thanks in advance.

Lots of love,

Jules!

I read your story before posting mine by the way. Am I right in thinking he’s the marathon runner? Or someone else on the thread, I can’t remember now. Amazing story though!

Thank you for sharing! 

HI

yes he is. I've no idea how he is still managing it but he's still running and is entered in the London Marathon in October. There's stubborn and then there's him!

Love n hugs

Wee Me xx

HI Jules

might be worth a call to your insurance company to clarify the policy conditions but my understanding is that it covers you for medical treatment abroad depending on the condition/circumstances. The insurance company should be able to advise if you're covered and how you use it if needed.

Love n hugs

Wee Me xx