Earlier this year I was diagnosed with a grade 3 brain stem tumour. I had no symptoms at all, it was only caught as i have regular mri scans due to having neurofibromas and I had a brain tumour that was between the brain stem and spine 20 years ago which was surgically removed . The current brain tumour isn’t on my spine, this time it’s deeper in the brain and cannot be operated on, so this being incurable isn’t great to hear at 33
I am currently on week 4 of 6 radiotherapy and chemotherapy, and will be having additional chemotherapy treatments afterwards.
it’s getting difficult mentally now as I still feel relatively well so I know I’m lucky that side effects are minimal, but the worst is actually my hair coming out due to the radiotherapy. The oncologist said that this chemo won’t make my hair fall out, so it is just the radiotherapy causing it. It’s coming out in handfuls every time i touch my head. The radiologist said it’s not all going to, just where the beam entered and exit. It’s not helping that friends and family say that they get that much fall out when they wash it, I used to have no hair fall out at all.
I am just trying to take everything one day at a time, which is fine most days, but if anyone asks how I am, I feel worse about everything. I try and act strong so people aren’t asking what’s wrong
has anyone else felt like this?
Hi charlotteLG and a very warm welcome to the online community
Although I didn't have the same type of cancer as you I do know how scary having a cancer diagnosis is but you've come to the right place for support.
As the community is divided up into different support groups could I recommend that you join the brain cancer group which is a safe and supportive place to ask questions, share experiences and get support.
There is also a group specifically for people with an incurable diagnosis which has lots of supportive members who will totally understand the mental stress having an incurable diagnosis creates. The group is called living with incurable cancer and is only for people with an incurable diagnosis.
If you'd like to join both or either of these groups just click on the links I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and 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 pop something about your diagnosis and treatment in 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 '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.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
