May 22, 2012 - 7:46 am
I had surgery in 2002 on Oli II after I had some seizures the year before; I was 33. The surgery went well and the only side effect I had (and still have)is epilepsy. I didn't need any other treatment. He told me that its the slowest growing tumour someone could have and that it wont re-appear for another 10-15 years but that was only a guess. So I was very happy to hear that. 10-15 yrs seemed a life time away and I presumed that I would have an operation every 10 yrs or so; I could deal with that. Never did I once look up any information about the tumour. I had a couple more MRIs after the surgery and that was that. I just got on with my life hardly ever thinking about it.
Well, not until my epilepsy started getting worse. I kept having to have my meds increased. I became quite concerned so I went to my GP and requested an MRI scan. It was then discovered that the tumour had regrown;only 6 yrs after surgery. I was devastated.I was told that I would carry on having MRI's-the watch and wait approach.Each MRI result came back saying 'no significant change'. So again, I stopped worrying as the tumour wasn't doing anything (so I was told).Then last year, out of the blue, the surgeon who had performed the surgery sent me an appointment to come and see him.I thought it was probably routine so I phoned up to cancel it as it was a 3 hr round trip I couldn't see the point in going all that way for a 15 min appointment for him to tell me that there was 'no significant change' !! I was given a message via his secretary saying that it wasn't urgent but he would like to see me so I had another appointment a couple of months later. That was for Oct last year.
I wasn't a least bit worried, after all it wasn't 'urgent' and there has been 'no significant change' so it was obviously routine. How wrong was I. I sat in his office staring at a image of my tumour, totally shocked as I had no idea how big it was (bout 4x4cm-I had thought 2x2cm at the most)and the fact that he told me that it was very dangerously close to my motor and speach centers so I will be requiring another operation, 'sooner rather than later', were his words. You might as well have punched me in the face I was that shocked.
I eventually had my appointment in London, 5 months later. It was a 12 hour round trip including a 1 nights stay) for only a half an hour appointment. I was told how dangerous my condition was, that no-one would risk operating on me as the risk of causing permanent damage to me was too great. He gave me two options. Carry on with the MRI's, watch and wait, or awake surgery. The option of surgery seems vague as I have to have lots of tests first to determine whether I am suitable for this form of surgery. I received a letter from him 7 weeks later asking if I would like to proceed with the tests. I said yes.
So, in 11 yrs, ( apart from seeing surgeon to say op went well) I have spent a total of 1 hr with surgeons telling me about my condition. 1 whole hour in 11 years.
Apart from me and my family and friends, no medical professional (apart from my local GP) actually seems to care about me and what I am going through. My so called oncology nurse has phoned me ONCE to ask how I am! And that was to ask me how the appointment went in London.
Is this how it goes? What on earth am I going to do when I start to really get ill? I read all of your stories and you are all going through hell. So I now know what is to come and I hate it. I hate the thought that I am going to get really ill then eventually die of this and that I am going to drag my family through it with me. There seems no hope and no one who know what I am going through for me to talk to. I think I am slowly going mad. I don't know how to be brave, for myself, let alone for my family.I just don't know where to go from here.