Archive | July, 2013

What’s the point?

16 Jul

I had a nice chat to my cousin the other day, and she was asking me if it was ok that she had been reading this blog. I appreciate that in many ways it was very personal, but I made the decision early on that this wasn’t something to be embarassed about, and to try to be as factual as possible. However, she made me think about the various people reading here, and what the point of the whole thing is/was.

Teaching myself.

I wanted to understand what was going on, and I find writing things down in a way that is clear and logical forces you to clarify your own thoughts, and double check your assumptions. Maybe it is my long lost legal training, but I feel the need to ensure anything I write is backed up with facts – or at least the selective facts that I choose! There is lots of information scattered across the web, and this blog gave me a way to pull it together and remind myself where I was up to.

Informing family and friends:

With so many of my family and friends around the world, it is easier to let them know what is happening via the blog rather than lots of conversations. Treatment is tiring, and while I know people are worrying, making 10 phone calls straight after operations, or even when you are at home feeling a bit flat, isn’t easy.

Also, when I do see people it means we can skip a little over things that have already happened.

During the early stages, when I was so stressed and unhappy, I did find that everyone asked so many questions. Please please… no-one take this the wrong way – I love that you were asking, and would be upset if you hadn’t, but I did find it helpful (for all parties) to give people a little more knowledge.

why

At the start of cancer treatment, the big problem is that you just don’t know where it is, has it spread, or what is to come. The first operations were actually mainly diagnostic, plus all the scans, endless meetings with a variety of doctors, and then even more tests. At that stage things move really fast, and plans change day to day. I had to learn to stop trying to control things, and just take each change in direction as it happened.
However, logically at this stage family and friends want to know what are the likely outcomes, what are the treatment options, what’s the prognosis for various results – and sometimes you just want to say ‘I don’t know, I’m not thinking about it yet. I’m trying to take each day as it comes – but it’s great you want to know, so go read the blog for details’

(To be honest, more often it came out as ‘I don’t know – I DON’T F*%&£NG KNOW!!’ –> then tears and disappear to bed. Or I would end up in a random argument about something else. But the nice controlled statement above is what I really meant!)

Despite how calm I may have appeared on this blog, I was a mess for quite a while, especially early on. I know in the end this was a pretty ‘minor’ cancer, but at the start you can’t help but imagine every scenario, and all the fears that cancer brings with it. I spent many nights literally walking around the flat in circles – not able to sleep, and just trying to shut up my mind from worrying about everything and anything. This blog helped me by clearing my head, and removing one worry – which was how to tell people quickly and effectively what was happening.

The sleeping pills also helped!

The support of the crowd

crowdsurf

I really liked that so many people would view the blog. It did make a big difference heading into operations knowing there was goodwill coming from around the world. I’ve always loved the idea of how small the world is, and how we are held together despite long distances.

You know those maps you get on the plane – showing you path from start curving around the earth to your destination? I imagined something like that with goodwill and thoughts, all working their way to my little room in the Marsden hospital. I’m not sure I believe in the power of prayer, but the mental image of support from so many people was definately in my mind as I shut my eyes going into surgery, and it makes a big difference.

Flightpaths

Helping others:

I can see the search terms used for people who find this blog. Although the most popular is ‘legs’ 😉 , followed by ‘I’m fine’ (!!) the rest mostly are various searches by people dealing with early cancer, CIN3, colposcopies, and some heart wrenching searches like ‘how much longer will I live with cervical cancer’. They come from all over the world, and even without me posting for a long time there are hits every day.

Some get in touch with me, but many don’t, and I hope this blog has helped some people with their fears, and to understand that they are not alone.

guidance

So that’s why this blog exists! It’s overpersonal in many ways –  but writing it is easier than explaining a trachelectomy in person!