I started having what I now know were seizures in December 2009. I remember my first one exactly as I was coming back from watching Macbeth!! I thought it was a panic attack as I had been ill in 2008 with a bit of a breakdown. They became more frequent from roughly one a week to one a day. I didn’t really say much except to a few friends as I just thought everyone would be thinking, “oh no, she is getting ill again”! I did tell my mum, as they were getting worse, so I went to the doctors in 2010. We didn’t know what to make of them, they were all down my left side and it was a very strange feeling really, so the doctor gave me a self referral form to see a neurologist. I promptly lost the form and just carried on as normal.
I was getting very tired and didn’t feel right at all. I then went back to doctors in July 2011, as I think I knew things weren’t right. She made the appointment for me to go to see a neurologist in Norfolk and Norwich. He then got me an appointment for an epilepsy test – an EEG – and then I got an MRI appointment through.
It was on Sunday 9th October that I had the MRI done and I carried on as usual during the week. I got home from work on the Thursday and a letter from the hospital was waiting, asking me to come over on the 14th, which was the next day. I must admit it was really only then I thought something wasn’t right. Although I did convince myself that the new coalition government was getting hospital waiting lists down and they wanted me off their books!! 🙂
My mum took me over and I was taken into the doctor’s room accompanied by a nurse, sat down and was asked if I had anyone with me…of course I knew something was very wrong then!! My mum was brought in and I was told I had a brain tumour and saw the scan. My mum went to cuddle me, I nearly punched her, I didn’t mean to but it was very surreal.
The consultant said he had already been in contact with Addenbrooke’s Hospital and I had an MDT already working on my case. That was that I suppose, then I went to Addenbrooke’s for a meeting and was given three choices: have it out under full general anaesthetic, but this was not a good idea as due to the location of the tumour on the right had side of my head, I might come out with no good use of my left side; or have an awake craniotomy (!!!); or not have anything done and basically let nature take its course…so an awake craniotomy was decided on! Eeeek! I had it done on Friday November the 3rd.
The Awake Craniotomy
Mr Price performed my surgery, it was the most amazing afternoon I’ve ever had, and I know that sounds odd but it’s the way I’ve remembered it.
I’ve remembered it with fondness. Everyone was so kind and I can remember the radio was on in the theatre, Andy Williams came on singing Moon River and I’m sure we were all singing it. That song means more to me than anything, it’s hard to listen to but at the same time it’s very comforting. In my head I remember talking to everyone about all sorts of things!! Just general chitchat whilst having brain surgery!
Everything went okay; it wasn’t frightening at all, more so the actual thought of having it done rather than the procedure itself. I was in hospital Friday to Tuesday, and went back two weeks later for results. It was a Grade 2 anaplastic oligodendroglioma, and was a bit bigger than a golf ball. There is still some left; it won’t ever really go away I don’t think. Mine is a ‘watch and wait’ situation, and I’m going back on April 26th for an MRI as I haven’t felt right but I’m sure it will be fine (fingers crossed).
It’s all very daunting and life changing isn’t it? It makes you look at life very differently indeed.
My family have been amazing and my friends have been fabulous, I’m moving back to my house soon as I have been at mum and dads. My wonderful friends gave my house a makeover and it’s just beautiful.
I’m left handed and really struggle now with my left hand, so I’m adapting, which is annoying but you just have to 🙂
I named my tumour! She is called Tulip the Tumour, as my friend calls me flora! Had to laugh otherwise I would cry a lot!!
I’m a mum I have 2 boys, I’m 39 I want to live