Not The Scan We Wanted But There’s Still Hope
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.
In the weeks between my immunotherapy treatment and follow-up appointment, there were probably only one or two ways in which I could try and estimate how well it was working. The first was how I felt day-to-day, while the second was the size of the lump in my neck. Both gauges filled me with confidence. When my neck lump first popped up it felt pretty big, and although it would often shape shift, it would always go back to its original size. But not this time.
It definitely felt smaller and I wasn’t getting any chest infections like I was before. One night in a loud pub would usually be enough to put me out of action for a few days but that wasn’t the case anymore.
I did have a small spell at Warwick Hospital in mid-February when I had a fever and some unexplained pain at the site of where my kidney used to sit, but a scan showed there was no disease there and the mystery went unsolved. I was discharged after three days and the pain disappeared in five.
So I felt pretty good as we drove up to Manchester the night before my scan. I’d just had a brilliant week with Gemma, spending the whole day in Birmingham before two in Cardiff to visit her little sister at university. I’d experienced pains again, this time below my ribs, but it wasn’t enough to stop me enjoying myself and it certainly didn’t scare me ahead of the appointment.
The Christie Hospital, being the brilliant thing it is, recognised the journey up was a long one and arranged for me to have a CT scan and the results on the same day. It’s a luxury hardly anyone is afforded in the NHS and it made our lives a lot easier. So by 10am I’d had my scan and was all booked in to see my consultant by 3pm.
One of the sad things about my time as a Manchester patient is that for me, the city only exists inside those hospital walls. I’ve never had time to visit any of the sights, or go shopping, because my treatment has always come first. During my IL-2 I did have the odd look out of my third-floor window, but the pale ward walls were often more enticing than the overcast, industrial landscape.
So with all that in mind, we headed outside for a couple of hours while waiting for my appointment. We drove to the nearby village of Didsbury, which had a nice High Street, before parking our bums in a good-looking restaurant. It had some board games, so we ordered some food and played a bit of Scrabble, my dad following the word ‘Yo-Yo’ with the word ‘turd’. So it wasn’t high quality stuff. But we were nice and relaxed, and safe in the knowledge that ignorance can sometimes be bliss. I certainly felt better before the appointment than after it, anyway.
Now back at the hospital, my consultant started by confirming what I had suspected – that the neck lump had shrunk by a centimetre. The lymph nodes near my trachea had also got smaller, by 0.5cm, and the IL-2 had clearly had an impact in these areas.
However – and this is a big however – it wasn’t such good news with the rest of the scan.
My left adrenal gland – the only one remaining after the other was removed in surgery – was inflamed, and a previously indeterminate nodule there was now growing. Not only that but it was already 4cm big, more than double its size back in December. My consultant said it was some of the fastest growth he’d seen and was now my biggest concern, even putting the next round of IL-2 in serious doubt.
There was also the bombshell that the cancer had moved into my bones, with a small nodule in one of my vertebrae causing a compression fracture in my spine. It sounds worse than it feels right now but it’s definitely causing me problems, and was probably the cause of the mystery pains I experienced that put me in Warwick Hospital not long ago. What may be happening is that the nodule is somehow affecting nerves nearby, which in turn is causing pain anywhere between my diaphragm, my right side and my back.
There were also two small nodules spotted in my pelvis, but thankfully they’ve not caused me any trouble so far.
All of this was obviously a big shock – probably the biggest since the initial diagnosis almost 18 months ago – because we knew IL-2 was a big opportunity for me and to face being taken off it after just one cycle was a tough proposition.
I urged my consultant to consider another cycle before undertaking an operation to remove my left adrenal, as apparently you can get by without them with the help of certain drugs. And he has gone away to think about it, for which I’m really grateful!
That’s not to say it’s IL-2 or bust – far from it. A new drug, called Nivolumab, might become available in the coming weeks and I could become one of its first patients in the UK – possibly even with a second cycle of IL-2 and surgery included. Either way, my consultant is superb and has my complete support in whatever route he chooses. We’ll find out in the coming days.
After a decent chat about the results, their consequences and further options, we headed home. It was a quiet journey, filled with reflection from all of us I think, but there were no tears. All of us who went up – mum, dad and my fiancée Gemma – still felt some positivity about my situation and there are always options available if you look hard enough.
Yes, we did all need a couple of days to let the result sink in, but on the third we all just seemed to spring back to life. My family went back to work, I went back to the year 2026 on my mammoth Football Manager game – basically, things just went back to normal.
I even enjoyed a cracking evening celebrating a mate’s engagement before heading off to Birmingham for a night out with a group of friends from university – some of whom I hadn’t seen in more than five years. It was an incredible night and showed how having a good time with old pals can make any situation better.
Anyway, I hope this blog isn’t too crammed with bad news because I don’t feel like it should. I have noticed a definite shift in how I feel physically since the appointment, but mentally I still feel solid as a rock. The back and side pains are causing me the odd issue, and it also took me a good few days to shake off a fever earlier this week, but I even played a bit of indoor cricket at the weekend so things can’t be that bad!
I’ve probably said all this before but it really is this simple: If I’m having more good days than bad, I’m still winning. And right now, I’m way out in front.
PS… While we were driving home from Manchester this song, of all the songs in the world, came on the radio. It felt right to post it.