Hi there,
I am new to posting on this forum. I'd like to stay anonymous so feel free to just refer to me as 'rainy'.
In January of this year, my partner who is 27 years old, was diagnosed with a low grade glioma in the frontal left lobe of his brain. Up until his very (and very violent) seizure, he was a very healthy, normal man with absolutely no signs of any sort of health issues.
We were in hospital for about 3 days until discharged. He was put onto steroids and keppra (I forget the long, medical term) and sent home. Whilst on the steroids, he had all side effects that came along with it. Such as increased anger issues, fluctuating sex drive, bloating, etc.
In this time we had been referred to a specialist neuro surgeon and he explain to us what kind of tumor he had.
His example was the following: "There's two types of tumors. Imagine having a bowl of custard with a cherry on top. You pluck the cherry out and its gone. Now imagine smashing a potted plant on the beach. You pick it up, but there's still dirt everywhere." Sadly, he told us his tumor was the second one, so only 70-80 percent can be removed through surgery. Chemo / radiotherapy will be looked into after.
He has had a few more seizures since then, more hospital days and increased seizure meds. Despite being on the maximum dosage, he has seizures still and constantly feels them 'coming on' -- he feels triggered by everything and is always on edge. Doesn't want to go out, even to walk the dog.
A few weeks later, we got a letter from the hospital to say our surgery would be scheduled for early April. Whilst it isn't far away, it feels like an eternity still.
My point of this post is, I am struggling to deal with this. We are currently staying at his parents, so he always has support around him if he needs it, and I can go home to my parents, should he need personal space.
I am absolutely terrified what will happen post surgery, as there is a very good chance of personality change and memory loss. I know that is selfish of me, but I don't know how I will cope if he becomes a completely different person to whom I know and love.
His parents and family are very kind, but my own are not, so I don't have anyone to speak to about my internal struggles. I always put on a brave face for him, because I don't want him to know I am worried or sad and put any stress on him, as this is a huge, life changing thing for him and all of us.
I called the Macmillan support line over the weekend and completely broke down into an ugly, sobbing mess. It did help, but my worries are forever there. It keeps me awake at night and I am on the edge of a mental break down at any moment.
Any advice would be really helpful.
I hope you can make sense of my post!!
