Why reading about Cancer on the web could be a problem for you

I love the internet – what would we do without it? Problem is, there is so much information out there about cancer. Looking for information about your cancer or about your maxillectomy will lead you down many dark alleys. I know, I searched. But you found this site and I hope that it helps.

I personally went looking for other people who had this - not so I could see what they looked like or what their obturator was like (not in the first instance anyway) - I was looking for them because I wanted to know that there were survivours! I know that sounds dramatic, but unless you have had cancer I don't think you will ever understand it. Cancer is SUCH a major word, it just sounds likes death when you first hear it - "I'm sorry Will but the pathologist found cancer cells", which of course was actually heard by me as "I'm sorry Will, you have Cancer and you could die..."

For years, for ever, I have never thought of Cancer, other than what you hear on the news. I heard of people getting it, but I have been very fortunate not to know of any family or friends get it. When you do have it, you suddenly get exposed to this world that has been living with you in parallel, suddenly you become more aware of people that have Cancer. Stories about others become more important - why? For me, I simply wanted to know that the person was ok, that they got rid of it. That they now lead a normal life - ultimately, THAT I WILL DO THE SAME!

Because of this I spent many many hours reading about Cancer, about others with similar Cancers - some stories were lovely, some were horrible. But what I found the worst was forums - the people there are lovely and all, but what did my head in the most was reading a post from someone, who had something very similar to me, who in 2008 had surgery and then NEVER POSTED AGAIN?!? What am I to think of that? Did they not make it? Does that mean I won't make it? Oh no! Etc. Etc. Etc. I thought the worst, so will you, I think it is natural.

The best advice I can give to you is your cancer and diagnosis is YOURS, it isn’t a statistic, it isn’t a number – it is yours, right now – therefore, if you read anything about survival rates, post-operative problems or anything else that would be classed as negative – that’s NOT YOURS, that was another person or group of people – it isn’t you.

Now I know, you’ll read that and you will probably take it in and agree with it after all it is probably only common sense, then sometime later today, or tomorrow or another day you’ll read something negative out there and it will set you back again – happened to me and if I am honest, it still does (I’m writing this 5 months after surgery) – I have days when I wonder if all is ok, will it come back, is it back – will I die?! This I think is being human, probably our greatest yet most destructive gift – knowing our own mortality.

The way I see it – the game isn’t over, until the crowd has gone home – so read as much as you want, it might help you, it may not – just remember your situation is yours, you’re not a number and no one has written about you, well, unless you have done something infamous! :-)

Listen, I can only write this now, I couldn’t have written this 6 months ago – I was in pieces – just know something, at some point you will be past the operation, you will be healing into your new life and things will feel better again.

I can’t tell you how you are going to be, how you will get through it, if you will cope, how quickly you will heal – all I can do is tell you that I did, as such, you can too.

There is hope and plenty of it. This is what I wanted to share.