Brain Tumour Diagnosis

Hi Billie

i was diagnosed with a Medullablastoma in March 2018. I was devastated and feared the worst. My children were only 2 and 6 at the time. I was so scared I was going to leave them without a mum. 

I used to look at people on the telly and felt it was unfair they were healthy and I’d been given this bombshell. It’s quite normal. 

Make sure you have someone to talk to - counsellor, best friend - I had my mum - we walked down some pretty dark roads but always came out of them with a positive thought to hold onto. It’s OK to visit these thoughts, but don’t stay there. 

I had 6 weeks of radiotherapy, then 5 cycles of chemo (Cisplatin, lomustine and vincristine). 

2 years on I’m still here, taking my kids to school, walking the dog. I do still get fatigued if I do too much. 

The best advice I can give you is to not google anything - it’s full of scare stories and focus on your Road you’re walking down - everyone‘s journey is different. 
Apps such as Headspace really help too with avalanche of thoughts you feel. 

Do things that you enjoy, I really got into jigsaw puzzles - kept my brain busy but my body didn’t have to exert itself. I also ended up reading a lot of books too .

Good luck with your treatment. Sending lots of hugs 

ISS x

We are going through a very difficult time due to my husband sudden diagnosis of GB4, he has just retired at age 65.  I at times feel really angry and devastated, we have two kids who are young adults.  I would like to tell people that his consultant has told us that there are people of his age who have gone on for much longer than the possible 18 months, there are people out there who have gone on for 10 years. I am just hoping and praying that we will have much longer than 18 months!  Age is not on his side but he is very fit and has no addictions, and I am just hoping that helps!  The shock of the diagnosis is just terrible, its so unfair, but we must carry on and try to stay positive.  Last week he did a 6 mile walk, and he will carry on with as much walking/cycling exercise as he can.  There is good news out there about high grade glioma's and that is what I am hanging on to, and the same for all of you out there in similar situations!