On the 3rd of October it would be 19 years since I was diagnosed with a brain tumour, and 19 years of living with one, but it’s not any more. Yes, it is 19 years since I was diagnosed, but earlier this year my oncologist told me that he could find no evidence in my MRI scan of any form of malignancy or malformation and that I no longer have a brain tumour.
For me this was extraordinary news and it took me many sleepless nights trying to process it. I kept thinking about the fact that for 19 years I have said that I have a brain tumour, but now could say I had a brain tumour. Even though there is only two letters difference in those two words, the difference in my mind has been huge.
Though this was extraordinary news, what was extremely hard about it was that in spite of my no longer having a brain tumour, the reality of living with constant pain and headaches would not change. Where there once was a tumour, there was now a bundle of scar tissue, this was caused by the 10 lots of neurosurgery and radiotherapy I have had. I was told that this was the cause of my pain and headaches and they would remain with me for the rest of my life. Scar tissue is removable surgically but only if it is in an operable location and as my tumour was always inoperable so is the scar tissue.
So even though the news about my tumour was incredible, it was really hard and a real disappointment to hear that this wouldn’t change my everyday reality of pain and headaches. I felt torn between wanting to celebrate the fact that I no longer had cancer, but also felt really gutted about the fact that my life actually wouldn’t change.
To no longer have a death threat hanging over me is a huge weight off my mind. It means that when I have a flare in symptoms that used to be a possible indication of tumour growth, I no longer need to worry that there has been some change in my tumour. I think that until you have had cancer, you have no concept of how much having a ‘ticking time bomb’ inside of you can play on your mind.
Even though I have very little memory of the years between 2000 and 2010, I somehow still have the symptoms clearly imprinted in my brain of when my tumour grew. My visual fields would become crossed, I would fall over for absolutely no reason at all, my headaches would intensify and my balance would be significantly affected. When I have had recurrences of any of these symptoms over the years it has freaked me out. Without even being remotely aware of my thought processes, my mind would automatically jump to “perhaps the tumour has grown again?”
It has been nothing short of unbelievable to think that I no longer have a brain tumour! I have actually had more years of my life with one than I had without one. I was 17 when I was diagnosed and on the 3rd of October it will be 19 years since my diagnosis. I am so incredibly blessed.
During my three nights awake after finding out my incredible news my thoughts went over the lives of friends who haven’t been so fortunate. I found myself wanting to weep for their loss, and that they never had the chance to feel as free as I now felt. I also wanted to weep for their loved ones who had to farewell their child, parent, or partner to cancer.
I don’t think that I will ever lose the extreme sense of gratitude to the Lord that I feel. I found myself wondering why God has given me this second chance. I also found myself asking, no, pursuing God as to what His purpose was for leaving me here. I didn’t get any clear answers to those questions but I had a strong sense that I wanted to continue seeking Him, and to continue living my life as fully as I am physically able to. I want to continue trying to do what my circumstances have led me to believe I can’t do. I dearly want to spend the rest of my life pushing the boundaries of what is achievable in living with pain throughout my body.
I don’t ever want to take life for granted and I hope I never will.