Hi, I hope knowing minds me comming on here looking for more information/advice. I have a brainstem glioma which hascome from a condition I have called neurofibromatosis (nf1). It causes benign lumps to grow on nerves. This one has been slow growing and has started to show symptoms.
It is inoperable due to the location so I am starting a 6 week course of radiotherapy on Monday along with taking a chemotherapy drug called temozolomide.
I have tried looking on the 'brainstem glioma' group but I can only see older posts. I am worried about the side effects. I already feel so fatigued on most days and know things will probably get worse.
I know everyone is different but I am already (prematurely) worrying about how long recovery from treatment will take for getting back to work.
Sorry to be rambling on, just dont really know what to expect.
X
Hi and a very warm welcome to the online community at what sounds like a very worrying time for you.
As you know the community is divided into groups so can I recommend that you join the glioblastoma multiforme brain tumour group as this will give you the opportunity to ask questions and share experiences with others who have this type of cancer. I've checked that this group is active, as you said the other group wasn't, and there are several posts over the last few days.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
When you have a minute it, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit 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.
Sending a supportive ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
