Breaking My Silence: The Update I Didn’t Want To Give
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!
October marks two years since my diagnosis. And so much has happened in that time. Yes, tears have been shed, but so much good has come from it too. Perspectives have been changed and moments have been had that will be remembered forever by those of us who experienced them.
But throughout that two years we always knew there was a very real possibility that things wouldn’t turn out how we wanted. That thought was always in the back of our heads, rather than front, because our positivity will always shine through – and I mean always – but it was there nevertheless. And unfortunately it’s now that we need to face up to that possibility. All of us.
I’m writing this blog from a Warwick Hospital bed. I was admitted a week last Sunday, and it’s fair to say my stint here has not gone well. I’ve struggled to muster any energy and I’ve been bed bound while the strength in my legs has seemed to slip away.
Even my closest friends haven’t heard from me. The silence has been deafening but I’ve simply been too ill to get in touch with my nearest and dearest. It’s been tough to stay silent but I haven’t really had a choice. Even writing this blog is a tiring process but I’m desperate to get it done.
My last blog talked of all the progress I’d been making – and I really had been making progress – but soon after publishing I felt my condition deteriorate. I went from easily getting from my bed onto a specialist turner to needing a massive amount of help from my family. Jobs that had become easy were suddenly completely wearing me out.
In a way, in my urgent thirst for progress I think I ignored those signs and pretended I was doing ok. But I wasn’t. And during one night last week I suddenly woke up fearing for my life. I couldn’t breathe and felt like there wasn’t any way I could get air from my lungs. I had chest pain which moved to my shoulder and in the end an ambulance was sent out to take me to Warwick Hospital A&E.
On arrival they gave me a chest X-Ray which revealed a massive amount of fluid on the left side of my body. There was so much in fact that my heart had moved over to the right-hand side of my chest. It was scary but it was also cool to see the X-Ray – the amount of white in it was mental but what was more strange to see was the ladder-style rods that the surgeons at Coventry Hospital had inserted into my spine just weeks before. It was the first time I’d seen the result and I thought it looked awesome!
From A&E I was moved to a ward where doctors wanted to insert a drain into my lung to remove as much fluid as they could. It’s a standard procedure but it didn’t go as smoothly as I think the doctor had first hoped. The reason? There was so much fluid that it kind of leaked everywhere. On the floor, on me – on the doctor’s shoes. It wasn’t pretty!
They said around two-and-a-half litres came out in that first go although how they measured it accurately I don’t know considering they needed three nurses to mop the floor afterwards. I felt a bit light-headed from it all at first but by the evening I was a different person – the fluid was in a box and I could breathe.
I don’t really remember much about my first week in hospital. I made progress at first I think but when tests came back it wasn’t what we wanted. In fact they went that badly that the doctor described me as the unluckiest person in the world! I’d not only picked up a nasty infection called Pseudomonas but the cancer had spread into loads of areas around the lining of my lung, chest and surrounding organs. It was basically not looking good for me.
What I needed was to get onto a cancer treatment called a TKI which could really prolong my life. But I couldn’t get onto it because I needed to be fairly fit enough to stand the side effects. So the TKI would help stop all the rubbish that was happening to me, but I wasn’t well enough from the bug, fluid and cancer spread to get on it in the first place. It was a horrible Catch 22 situation.
And that’s kind of when it started to dawn on me that I might be losing this long fight. That this might be what does the final damage. I felt more poorly than I’d ever felt before and I didn’t feel like any improvement was being made.
And on one afternoon earlier this week I had conversations with a doctor and a palliative care nurse that confirmed my worst fears. Firstly, a doctor asked me what I would like to happen in the event I had a cardiac arrest. He told me it was my call but that I was already very weak in that area and it could cause me more harm than good if they were to resuscitate.
Now, ironically, having to answer a question like that nearly gave me a cardiac arrest! But I knew my answer. I said don’t do it. And I knew that that was that. It was a strange feeling, but it made the second conversation with the specialist nurse easier. We talked about end of life care and making sure I was comfortable to my dying day. And that’s all I wanted really – to be comfortable.
In fact that’s all I really want now. To be comfy and pain free, and to be able to enjoy life to the end with the people I love.
Since those initial conversations I’ve had many others with the amazing doctors and nurses of Mary Ward here at Warwick. And what a ward it is. The staff have been incredible. No request is too much and no question too big. They are amazing. I’d love to name names but I fear I would miss someone out! Hopefully they know how thankful me and my family are – that’s the main thing. And if they didn’t know, well they’re probably reading this right now, so guys? Thank you!
It’s important to me that people don’t read this and feel sorry for me. Because I really do feel at ease with my situation. I have fully accepted it – I did pretty quickly – and I am comfortable with it. My outlook right now is this: if I am comfortable physically then I am comfortable mentally. It’s been that way for a while now.
This Monday they are planning to move me to Myton Hospice. This is with the aim of keeping me comfortable and keeping my symptoms under control. I don’t know what to expect from the experience but I know their care is just as incredible as Mary Ward, and that there are many positive things that can be achieved over there before I die.
Unfortunately, the news doesn’t get much better when it comes to how long I’ve got left. They told me that in all likelihood it could be just a few days or a few weeks – we just don’t know – but what I do know right now? I feel well enough to enjoy the company of the ones I love. And that is all that matters.
So thank you to everyone who has supported me over the past two years. Whether it be through the incredible fundraising that has taken place, whether it be the messages of support, or whether it be through the amazing friendship shown to me and my family – I am so grateful to you.
And I hope that I can end this blog with some news that will help soften the blow that I’ve had to deliver up to this point.
Firstly, earlier this week I found out some news that helped ease the news I was given – and that’s that Nivolumab has been granted approval for use in kidney cancer patients! This is the drug that had such a profound impact on my soft tissue tumours – shrinking them by at least half after just seven doses and no side effects.
Of course, ultimately it had no effect on my bone tumours, which is why I suffered a spinal cord compression, but it was the first drug I took that really started to make inroads into my rare and aggressive condition.
The news is not only good in its own right, but gives me solace as I played my own role in helping turn heads not only through this blog but when I spoke to the press at the initial rejection. As one person who has played a key role in the process said to me earlier: “Your efforts to speak out about the treatment have been essential in ensuring that thousands of patients will now have access.” To me, that means everything.
And the good news doesn’t end there, because I have a big secret to confess! A really big one. Over the past two years I’ve been focusing on a project that has both given me a positive outlook and now really excites me.
And what it is, is an album! An album of 13 songs – recorded in my Dad’s recording studio – that is being released in both CD and download form this coming week. The hard copy will be available first before a cheaper download version goes on sale, both on this website and, eventually, on iTunes and other means. It will even be on Spotify!
In the meantime, you can find 30-second teaser clips of each song both here and on Soundcloud – I hope it whets your appetite enough to want a copy!
And the album itself? It’s called Fightback, and it chronicles the past two years of my life, and I am so proud of it that I can’t wait to share it with the world. It even includes a Christmas song, what with the festive season approaching!
My hope now is that the album becomes a legacy for me, although I did get a little bit worried about that when my dad informed me his own legacy would probably prove to be his Mars Bar Party song. I would hate my own legacy to end up on a level like that!
You’ll find more information about the album and what it means to me on the Music page of this website, and I hope it leaves you with at least a bit of a smile on your face after reading the rest of this blog.
There could be events happening next week, at the Myton Hospice, that could top that news. But I’ll leave you hanging on that for now. In the meantime, keep smiling, and thank you for reading this blog. Thank you for your support. And thank you for living life to the full.