Taking One Step At A Time – My Toughest Blog Yet
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’ll be typically British here and give it some understatement but I’ll try and get to the point. My situation has become a little more precarious. I’m currently lying in a Coventry Hospital bed in an oncology ward with a belly full of morphine (so go easy on the quality of my writing for this one!). Today is Tuesday, and this morning I was due to have more life-saving surgery – this time to my spine.
My latest scan – an MRI – took place last week. I needed to be sedated for it because a previous attempt had failed after I lay down on the hard board and started to screech in agony. After approximately four seconds staff realised I couldn’t do it, so thankfully for the latest effort they dosed me with drugs and put me to sleep.
On awaking, I was told some horrible news. It was tough to hear as at The Christie – where I am usually treated – everyone speaks so positively, as if it’s completely plausible that I might beat this. Here, however, the conversation didn’t go as nicely. The doctor spoke to me as if I’d been told months ago that I was terminal. Rather than be sat down in a nice room and the news be broken gently, she stood in front of me as I lay in a ward bed with just a curtain separating me and my family from everyone else. It wasn’t her fault and I now understand why it happened like it happened, but she was pretty blunt and it wasn’t pleasant, and it wasn’t the ideal scenario under which to be given bad news.
However – HOWEVER – don’t read that paragraph and think the worst. Please. Because even if I am *officially* being labelled as terminal, I’m not upset or even particularly fussed about it. I still believe. So do my family. So do my friends. And when I go back up to The Christie, I’m sure my doctors will do everything they can to put me on a treatment plan that gives me hope for the future. I’m content with my situation – so let’s get that out the way! I ain’t done yet!
So anyway – back to the surgery. The plan is for me to be waking up later today with a lovely big scar up my back. I’ll have had rods inserted into my spine to help with its structure while surgeons will hopefully have managed to tear away parts of the tumour that are surrounding and pressing upon my spinal cord. The surgery is very, very urgent because my spine is so precarious, but it will hopefully give me a number of months where I can get about by myself.
Driving and living a normal life? We’re not setting targets so let’s just wait and see. But the point is that it gives me a chance. And even though it will have undoubtedly been a tough and risky operation, if it has gone well then I could even be home by the weekend. I could be climbing the stairs and everything! Either way, I’m confident the surgeons here have the capabilities to do as much as they can.
I say as much as they can because they won’t have been able to get the whole tumour. It’s grown too large and there are other small tumours now present in my spine anyway. The Nivolumab treatment I was on – and now won’t be – worked wonders elsewhere but unfortunately in my spine it just didn’t do the job. It’s strange because my appetite – a key sign of how well I’m doing – has actually been very strong while I’ve been in hospital. It probably means that the other soft tissue tumours around my body are still shrinking – thanks to the Nivolumab’s cumulative effects – but that the spinal tumours are still growing.
I still believe in Nivolumab, and I was actually due to be a guest speaker at a conference in Brighton on Wednesday to share my experiences of the drug with the company that makes it – Bristol Myers Squibb. When the time came to cancel my appearance I was gutted – after all, how often is it that people actually want you to spend half-an-hour speaking about nothing but yourself? Normally I’ve got to put up with friends and family who just do it because they love me! It’s been one of a number of things that I’ve had to shelf thanks to this latest setback.
The others include a short break to Barcelona that my fiancée Gemma bought for my birthday. It sounds silly now – to think we nearly did that – but I was doing so well when she booked it and the turn downhill I’ve experienced really did take place very quickly last month. Hopefully we’ll get to rebook another time. It’s a place I’ve always wanted to experience.
Thankfully, a week after the spell in hospital that caused the Barcelona cancellation, I was well enough to join Gemma and her family on a lovely trip up to Yorkshire. It was nice just to get away for a week and let’s face it, what’s better – Barcelona or Bridlington? Ride the land train to the Bondville Model Village, and you’ll know the answer.
However, another thing I did miss was the incredible 36-strong team that ran the gruelling 10km Wolf Run on Sunday. While I was hauled up here being cared for by a team of brilliant nurses and doctors – getting access to everything I wanted – they braved the mud, the obstacles, the hills and water to finish the race and in the process raise thousands of pounds for The Christie Hospital in Manchester.
I had a great shock on Sunday night when Gemma’s family and my Mum all turned up in their Wolf Run t-shirts and told me about their day. It was a real morale-raiser and it’s no co-incidence that Sunday was a good day for me in terms of pain levels. I was comfy all day in the knowledge that such wonderful people were raising money for such a wonderful cause. Thanks to everyone who donated. You are life savers! And you have already helped raised over £6,000 for the hospital through off and online donations. Incredible! You can imagine how much positivity that has given me personally as I head through such uncertain times.
Anyway, I’ve gone off track again. It must be the drugs.
One of the strangest things about all this has been the fact I’m on bed rest here at Coventry. It means I’m not allowed out of my bed. For anything. And it’s been one of the toughest aspects of being in hospital. It sounds easy – just lying in bed all day pressing a buzzer if you need anything – but it isn’t.
I’m not even supposed to sit up much when I eat but I’ve seemed to get away with it. My Dad and I actually got told off by one doctor after he helped me walk to the toilet and back. It really didn’t go down well as I’d literally just been told that I wasn’t to go anywhere. I think my Dad in particular got a dirty look or two for being so irresponsible! It was pretty funny to see his face! But at the end of the day, if I can still do something – I’m going to do it. I know the risks. If I fall then there really is a high risk that I might become paralysed. That sounds scary but I’m not fazed by anything.
Every day I’ve had doctors come round and poke my legs with a stick to see if I still have feeling in them. And I definitely do have a small amount of numbness in certain areas. But on the whole they’re ok. I can still stand on them anyway – although don’t tell the doctors that, as I shouldn’t know the answer! But when the curtains are closed I can’t help but try. I’ll always push myself to the maximum and this is no different.
Right now, writing this blog, I can genuinely tell you that I feel content with my situation and with my life. I have amazing friends and family, an amazing fiancee, an amazing team of people around me who will support me through anything and ultimately, a very strong mindset that I really don’t feel can be broken by anything. I really don’t feel scared by any scenario, and I’m confident I can make a success of the surgery and get back on my feet.
So with all that in mind, hopefully, by the time you’ve read this, surgery will be finished and I’ll be in a bed somewhere recovering, setting myself the lofty goal of sitting in a chair again, or walking 20 feet to the toilet and back, or even hauling myself up the stairs!
Beyond that? Let’s just wait and see. Because right now it’s a case of taking one step at a time. Literally, and metaphorically.
Until next time… X
*UPDATE* – I never did make it home by the weekend, but the operation did go well from a technical point of view. The surgeon managed to remove a lot more of the tumour than he first thought he’d be able to, and he’s confident I’ll get back on my feet.
However, it hasn’t quite been that simple so far. The first couple of days after surgery were agony on my spine and the pain needed to be put under control before any progress was made. That has since happened, but it will be a slow progress as my legs are still extremely weak.
But I’ll get there. My determination has never been stronger – especially when I know how much support I have on my side! With everyone’s help I know I’m going to get to where want to be!
Thanks again for reading,