Plot twist recap:
well that's a that's plot twist to my life I didn't expect..
On my 65th birthday (17th Feb) I was diagnosed with a f'ing incurable brain tumour.
Things moved fast and by March I had brain surgery which removed 90% of it.(debulking)
The tumour is was officially confirmed as a "high grade Glioma”.
The surgical team very upbeat about removing 90% of tumour.
I started treatment to slow what's left down.
30 days of daily Chemo anti sickness and and Radiotherapy (the "gamma knife" at St James in Leeds)
now finished 21 sessions. Disappointed it didn’t really do much for the tumour
now on chemo which is reducing the tumour.
Could not be in better hands - all the hospital staff are so good.
Fingers crossed I get a good handful more years.
What is the treatment
Fyi about the radiotherapy: it Is a concentrated proton beam to burn just the tumour hence the mask to keep you still and the computer uses the last mri to know where to target. Its quiet and users like me can see sparkly lights while it is working with a smell of ozone but they say there isnt any. Its burning away the tumour inside it which makes me very very tired for a few hours afterwards.
The chemo therapy is designed to rewrite the DNA of the tumour to stop it growing back. Little side effects except for doziness.
Hi Man on the moor and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I don't have the same type of cancer as you, I know what a whirlwind of treatment, tests, etc life can become.
The online community is divided into different support groups and I can see that you've already found and joined the glioblastoma multiforme brain tumour group, which is a great place to ask questions, share experiences and get support.
When you feel ready, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
