I’ve always said these blogs would be an honest account of my situation. Whether it be good, bad or ugly, I’ve wanted to give the full story of what my life has been like since I was diagnosed with stage four kidney cancer.
And this blog is no different. In fact it tops the lot in terms of difficulty – for both writing and, I imagine, in reading. I hope it’s not too much – but this is the truth.
Most of it ain’t pretty – but try and hang on till the end. Cause there’s a nice little surprise I’ve wanted to share with everyone for a while now, and I think this blog will prove to be the best time to do it!
Wow. What a day. What a few days and what a few weeks it’s been. I’m not sure if I’ve got the energy to finish this blog but it’s now over a week since I’ve been home and I’m desperate to write an update so let’s see how this goes. There’s certainly a hell of a lot to say.
And that’s because life couldn’t be much further away from ‘normal’ right now. Every single day brings a new challenge that neither I nor my family have faced before. But we’re getting by. We’re coping. And more than that, we’re making real progress each and every day.
Yes, it’s tough. But we start each day with a deep breath and a smile, and we end it by telling each other we love each other and that tomorrow will be even better than today. That we’ll make even more progress. We’ll get there, we’ll figure it all out.
Happiness. It’s that ultimate feeling we all strive for in life. To wake up in the morning and have no worries about the day ahead. To live in the biggest house in the street, drive the fastest car, or get that promotion at work you know all your colleagues have been fighting over.
For others it could be sacrificing success to start a family, or simply an unachievable light in the distance that seems so far away.
Whatever form it takes, happiness is like that utopia we all strive for. Yet for most of us, we don’t even know where to start – or what it looks like.
It’s exactly two months since my last blog – my longest dry spell since I set the whole thing up and shared it with the world. I do sometimes have stints when I simply can’t be bothered but this break has been different. Too much has happened and the last few weeks especially have been mad.
There’s been a birthday holiday to Barcelona that we had to cancel the night before, a week in Yorkshire that was nearly cancelled but thankfully wasn’t; but more importantly there have been too many stints in hospital, and an MRI scan that showed things have turned seriously for the worse.
I try to be quite jovial and jokey about my situation on this blog – and in life – because I don’t really see what I’d gain by acting any other way. And that won’t change. But I want this particular blog to be a serious one, in order to shine the spotlight on a decision made earlier this week that has left me in disbelief.
Not only that, but its consequences could impact on thousands of other kidney cancer patients across the UK, both now and in the future.
June. What a great month it is. The start of Wimbledon, supposedly the start of Summer and this year, the start of the European Championships.
But June 2016? It’s been horrible. The sooner it’s over, the better. The weather’s been atrocious, we’re out of the Euros at the expense of Iceland and the country is in political and economic turmoil post-Brexit. Thank God for the England Rugby team.
However, through all that genuine doom and gloom – and all the fear and worry – I’m hoping to give you just a little ray of light to perk up what is otherwise a pretty gloomy time.
That’s because, for me, June has been better than most.
There are a couple of posts on this blog and website that for whatever reason I have really put off writing for days. It might have been bad news or I might not have been feeling particularly well, and it would only be when someone would ask innocently: ‘Have you updated your website yet?’ that I would get down to it and start writing.
Thankfully, this isn’t one of those occasions. Driving home from Manchester yesterday, I couldn’t wait to start typing. Not because we’d had a landmark scan or particularly good news or anything – but because I just felt really, really good.
Until a few days ago it had been an awesome start to 2016. With my first IL-2 treatment completed I caught up with friends new and old, set up this website, went on day outs and fell ill just two or three times in seven weeks – something unheard of before Christmas. I woke up every morning feeling more and more like myself, and would smile as I ran my fingers along the cancerous lump in my neck with the knowledge it felt smaller than yesterday.
And that’s what made last week’s news all the more surprising.
When I was first referred to a professor at The Christie Hospital in Manchester and told about a treatment called IL-2, I didn’t really want to know much more. There could be loads of pieces like this already over the internet, laying out what it’s like to have IL-2, but ignorance was bliss. I didn’t want to know what I was getting into.
But now I’ve experienced it I thought it would be worth jotting down what’s happened so far. If it helps one person prepare for it then I guess it’s worth it.
Only two hospitals in the UK administer cancer treatment Interleukin-2 and it’s not too hard to see why. It’s seriously expensive for a start, but it’s also quite new and very intense.
I will always remember when it dawned on me that doctors were taking my case seriously. It was the end of September 2014, and I had just been admitted into hospital. I was three weeks into a brilliant new job as news editor of the ambitious Stratford-upon-Avon Herald, and in my mind I was desperate to make a good impression – even if my body wasn’t.
When I had accepted the job I really did think I was fine. Yes, I had lost weight and was struggling with my energy levels – but I just thought I was unfit. So it was a big shock when the call from Warwick Hospital came.
I certainly didn’t think I warranted the ensuite room they had given me. It was situated next to dozens of old and frail people who all looked genuinely ill, while I was sat in bed all day happily watching DVDs and reading magazines. Nevertheless, the doctors seemed worried. A couple of days of blood tests followed before a CT Scan eventually revealed a four-inch tumour in my right kidney.