Long live the fighters

I woke like a bird at 4 am, eyes wide open, on high alert – my brain assessing threats even before my mind was awake. I was not going back. To sleep.

After 18 months of all-consuming stress, illness, hospitals, sleepless nights, constant worry, and stomach-turning turmoil, today was Fred’s ‘end of treatment’ clinic appointment – the critical day we find out the MRI results following brain surgery, 6 weeks of radiotherapy and 36 brutal weeks of chemotherapy.

Did it work?

At 5 am I went for a run, to move my body to calm my mind, a way to control the uncontrollable. Taking care to avoid treading on three grates, it felt harder than it should. I’ve learnt over recent years how stress affects my body but today, indeed the last year, there’s no room for being down on myself – we have far bigger battles. Our arena looks different now. There have been moments in the last 18 months I haven’t been able to move, or if I’d manage to take myself out for a run, I’d stop and burst into tears. But this time I kept it together.

In the run-up to today, I felt an uncomfortable sense of peace. Ironically, less worried than in previous weeks and months. Fred had been doing better in the past few weeks, now 6 weeks since his last chemo – there were signs he was returning to his former self.

I have been incredibly in tune with his every feeling over the 18 months since this hell we found ourselves in began. Every pain, every complaint, every ailment, every movement, every vomit, every spoken and unspoken word. How I felt a direct response to how he is. As today came closer, my motherly instinct told me it was ok, but I started to wonder if I was delusional, was it a coping mechanism? I knew the matter was in the hands of the MRI result – not my gut feeling.

I decided to wear pink, ‘a positive colour’ and swapped jeans for a pair of bright patterned colourful summer trousers. Even though there was only a glimpse of the sun, it felt like a minor brave choice – not letting the fear of dressing inappropriately cheerfully win. And so, I felt I was coping well until my bodily reaction overtook my innate confidence as soon as we set foot in the hospital. I saw a robin on my morning dog walk, and a solo fox cub (Googled it – some believe it’s good luck) ran in front of the car into the grasses on our journey to the hospital, all ‘signs’ backing up my instincts. But still, the fear and the risk were – are – very real.

Heart-pounding and avoiding premature eye contact for the risk of interpreting (or misinterpreting) body language we headed to the ‘teenage cancer’ waiting area. Fortunately, on this occasion, we didn’t have to make small talk and were directed straight to the consultant’s office. We walked behind the nurse, and I told myself not to read into her walk or read her expression. “I’m so nervous” Fred said as we entered the room. “It’s here,” his consultant said in response and pointed to the screen. “The end of treatment plan”, it took me a second to catch up, in the meantime she began to fill in the blanks. 

“There is nothing of concern on the scan”.  

“Nothing to report – it’s all good” 

There is scar tissue from radiotherapy, so you’ll never have a normal scan but there was no sign of disease. 

And proceeded to explain the next steps – a scan again in 6 months unless we have concerns earlier. And then every 6 months until 2 years post-treatment when the risk of it returning is lower so scans will be every year until year 5 – and then you’re considered cured.

When I wrote ‘remission’ in my Notes app (so I had something to refer to later when my mind started asking questions) it autocorrected as ‘tension’. I typed it again…

r-e-m-i-s-s-i-o-n.

This time my phone accepted it. After exhaling the last 18 months of emotion into one guttural cry in the clinic room, I did too. 

We know there is still risk but the outcome today is the stuff of dreams. We know too well not everyone is so lucky. We also know luck can change. But right now, we live. And we have all the doctors, nurses, surgeons, clinicians and importantly research to thank. 

My boy has fought so hard to get here. The bravest, strongest soldier. One day we may tell the whole story, but right now we live for today. And today was the best day.

It wasn’t just the robin and the fox. After we were told the good news, and my tears of relief were released, the lights flickered and a wave of light passed through the room, a sight so odd the consultant said, “Is there anybody there?” as if we were in a séance. Logan and I looked at each other, he knew exactly what I was thinking. “Yes” I replied, there is someone here. And I went on to explain who it was.

The army had rallied. 

Long live the fighters.