I’ve heard lots of people bandy the word ‘inspiration’ around in various contexts and it’s weird what and who some people take their inspiration from. I’ve also had a few people say I’m inspirational which, honestly – really no false modesty at all here – I find quite uncomfortable. There is nothing inspirational about the way I handle my condition – I cry, shout, wobble and snot my way through it most of the time. And you just muddle through, I absolutely guarantee any one of you would just, well get on with it. Because you have to. Because no amount of hiding under the duvet and not answering the door will make it go away. And yes you would come to value your life in the way I do, if you were faced with potentially not having a very long life. There’s a sense of urgency that brings you a lot of freedom, freedom that’s not available to most other people. If I want to fritter money away on shoes, or book extravagant holidays, or do things completely spur of the moment and screw anything else, I can. Who could possibly argue with me? This kind of behaviour isn’t inspirational in the slightest, it’s indulgent. And why not.
I said in an earlier post I wanted to be more inspired, more of the time. I have to be honest and say I can sometimes be wary of getting too friendly or too close to anyone else in the same situation, I’ve been there before remember – that lady I knew died and it completely freaked me out, set me back for weeks. But recently I’ve found my inspiration in the words, attitude and spirit of someone I’ve never met, but have come to feel very close to. I mentioned my cancer twin, Ellie, a little while back and we’ve been in regular email/ twitter contact for a while. She was the one who brought the newest fairy godmother into the clan (new hair). There are some elements of our respective situations that are quite similar – we’re both triple negative which in itself is on the rarer side, we were both in our late 20s when first diagnosed, both recurred very quickly and have had similar treatment regimes since then. We’ve both had numerous holidays wrecked cos of this nonsense. However there is one very big difference between us – our whole outlook, and the amount of courage it takes both of us to just keep going. Ellie’s cancer is more advanced than mine, in that more organs are involved, including her brain, meaning her treatment is arguably more vigorous. The poor girl has to have her whole brain fried on a regular basis, I cannot even begin to imagine what that is like. I hope I never have to experience it. Yet the biggest difference is that she really and truly IS an inspiration. Read her blog and be amazed, and humbled and ashamed that you ever have any cause to moan when you hear how she is. And it’s not about poor cancer girl, isn’t she brave, far from
it – she is sadly not the only young woman to have ever been in that situation and I hope the world’s scientists are on the verge of curing this shitty, shitty disease. It’s more about her positivity, her determination, her humour and her grace. It’s unbelievable. Her most recent posts involve how she was hospitalised over the new year period, in a hospital far from home, away from the doctors who know and care for her, with a skeleton staff who don’t know what they are doing. And she was on the cancer ward. When I ended up in the Royal Free with a blood clot that week in July, the one that put paid to our holiday the first time round (incidentally today would have been the day we flew out for a second attempt, and hasn’t the weather been lovely?), I too was on the oncology ward, where there were some seriously ill people and MY GOD IT WAS AWFUL. Just the most terrifying thing ever. So I get exactly what she means – the fears she had for Tom are exactly the ones I had for Andy. The frustration when you feel when a nurse isn’t listening when you tell them your veins really are shot and can they wait for someone to come along who knows how to cannulate, but they have a go anyway and balls it all up.
So yes there are certain tales in Ellie’s blog that ring very true. This is the kind of shit we have to deal with, you don’t just trot in every 3 weeks for chemo and get on with your merry little life on between, there are setbacks involving infections and low blood counts. And blood clots in your jugular. But what is really unfamiliar is Ellie’s unfailing ability to stay calm and resolved and steely.
That, my friends, is inspiration. Get some here www.writtenoff.net. A big hug to you Ellie, my hero. I look forward to meeting soon xx