Kay's Story

In May of 2008 I was diagnosed with a re-growth of brain tumour. I could write down the medical terminology but the words would probably take up the entire page. All you need to know is that I had a tumour in my brain towards the back. I had been diagnosed with a brain tumour not less than a year before in August of 2007. I had this headache constantly for about a month, but I thought that it would just go away. One night I went into work and couldn't lift my chin up off my chest. At that point I thought to myself 'This isn't right', and went to a hospital here in Nashville. I told them about what was happening to me, how I felt, and the fact that when I was five I had my first brain tumour! Knowing my history they rushed me straight upstairs and gave me CT scan. After, a doctor told me they had found something but didn't know what it was, and that they would like to do an MRI scan and have a specialist take a look at me. They found it to be a tumour, probably a re-growth of the one I had operated on when I was five. I remember when they told me I was more scared of phoning my mom and telling her. She remembers everything from the first one and I didn't want to put her through that again. I opted to go back to England, where my mother is and where healthcare is free. Just those three days in hospital, the two scans, and the specialist came to just over six thousand dollars! And I can't get health insurance as I have a pre-existing condition, so I don't qualify.

So, there was a big hold put on my life I was 24 and, not to discriminate against any other age, but time lost in your mid-twenties seems like forever. You are still trying to build a life for yourself. After four months, two operations, many weeks in hospital, a bout with meningitis and a whole galaxy of drugs (setriods being by far the worst becuase they make you really fat!) I came back to Nashville, thinking that all of my bad luck was behind me. I mean I've had pretty much the same thing twice now and I was still only 24, surely it can't happen again, right?

Wrong.

One of the stipulations put on me by my neurosurgeon was that I had to have an MRI every six months here in the US and send the images over to her. When I got back, I admit, getting a scan was not at the top of my list of priorities. I felt fine, I thought I was fine, and I had a lot of stuff to catch up on in trying to build my life again. After a few times of my mother telling me to go and get it done, I did. I sent it off and thought no more about it.

Then in May of 2008 my mom phoned me from England, she sounded nervous, almost frightened. She told me that it had grown back. It was more aggressive than before and there was a chance that it had become cancer. I was on my cell phone in the middle of a busy street and I started crying...But something somewhere in me wasn't surprised and almost expected that call. I put off for as long as I could not going back to have the operation. I wanted to have a summer here, I wanted to have the 4th of July here. I knew that the more times they operate on a place the lower the chances of surviving are, so it could be my last summer. I even considered not having the surgery and letting myself die. I knew that after the surgery it would be rough and if it could happen again now, perhaps it could happen again in the future and I didn't want to be at the whim of an illness. But eventually I decided to give it a try. I went back to England on the 5th of July 2008, went into hospital on the 8th and had the operation on the10th of July. I remember going into the prep room before surgery, never once have I actually been scared in all the operations I've had. I look at it this way; firstly I will be asleep, secondly me being afraid helps no one and may end up doing me more damage, and third it's in the hands of the surgeons now, there is nothing I can do.

The night before I went down to surgery I had my last cigarette. After the surgery I was in hospital for a couple of months. Again I got meningitis, again I couldn't see properly, again I had problems with my speech, and again I was forgetting everything that happened around me even things I had just said. After a few weeks I was called to go and see the Oncologist. They had done a biopsy of the tumour which thay had removed, and it was cancerous. A detailled plan of what they intended to do was laid down in front of me, radiotherapy, chemotherapy etc...It would take about a year. I fell silent and I don't think I spoke for a few days. It wasn't the fact I had cancer, it wasn't the fact that I had to have all this treatment and it wasn't the fact that I knew all of this would actually make me feel worse. It was the fact that I would lose so much time. I was 25 and everything that I had had was now gone. Over the course of the next couple of months I had to let go of my apartment in Nashville, I wasn't going to come back to the job I had there. I trained as a dancer, I can't do that any more. I wouldn't see alot of my friends again. I couldn't imagine anything worse.

The radio therapy started. To stop your head from moving around they make a plaster cast of your mouth, like when you are fitted with a pallet brace. They then make this into something which fixes your mouth to a head brace, which is fixed to a bed. The only problem is I couldn't lie down on the back of my head as I had a huge sack of brain fluid that had not drained. When it was pressed this would give me terrible headaches. They had to figure out a contraption for that too. Radiotherapy was horrible. It was uncomfortable, it was everyday for six weeks, it made you really tired and sick and it made me lose my hair where the laser was directed. I had a reverse mohawk going on. I was bald down the middle of my head with hair on the outside. Like so many other people losing my hair was the most shocking thing to happen. I prised my hair. I used to have long thick dark locks that fell into ringlets. I loved my hair, I was like Samson.

Then came chemotherapy which was a largely experimental drug called Tramozolomide. It lasted for six months and it was awful. It didn't make me go bald though, but it did make me sick and tired all the time.

I had a LP shunt fitted into my spine (actually a second one as I had one fitted after the previous brain tumour but it no longer worked), this was supposed to help drain the brain fluid that had built up at the back of my head. I had it put in in December of 2008. It was horrible. I was extremely sick because it was draining too much and I couldn't stand or else I would get pressure headaches, really dizzy and fall over. I should've stayed in hospital, but I didn't want to be there and it was Christmas...On New Years Eve I was taken by ambulance back to hospital to have an emergancy operation to remove the shunt. I could stand after that. What a great feeling to be able to walk, stand or even sit up. Believe me I won't ever take it for granted again.

Eventually everything came to an end and I am back in Nashville again. This type of tumour can grow back again so I have to have MRIs every six months and go back to the cancer hospital in

England every year. It has taken a long time, the first (or really the second, but the first I remember) was diagnosed when I was 24...I'm now 27 and it's still not completely over. I carry the scars and the memories of the last two and a half years with me. It is really hard to try to rebuild your life, especially when you have lost so much time. But I am not bitter, not in the slightest. Having cancer made me a much better person, I used to smoke and drink...I no longer do either.
There are so many other stories that I have as a part of this, so many experiences that come out of this, if I was to write them all it would turn into a book. But maybe one day, hopefully, we'll get to meet, have a coffee and a good chat. You could tell me your stories and I can tell you some more of mine. I would like that.

Take care,

k