I remember years ago when our five children were much younger, people would regularly say to both me and Catherine, “I don’t know how you cope with five!”. But for us, it had just become our ‘normal’. We re-define our normality according to that with which we become accustomed. And I suppose that’s something of where we are today, living through what are chewy, tough circumstances, but something that has become our normality. It doesn’t mean to say that we have become desensitised and stoical in the face of hard realities and future prospects, or that we treat people’s kindness and sympathy with any disregard – far from it, we cherish it – but it means that it doesn’t feel like a black hole that’s constantly pulling us in. There’s a rhythm and everydayness in life we’ve adopted, undergirded by the Father’s everlasting arms that means I can presently sit in front of the fire as I write, a typical homely winter’s day scene, Catherine can be upstairs sorting some clothes, Lydia in her room on Facebook, Josh out at a friend’s house for the night having a jam session with his guitar, Tom at university reading for an essay, Ben and Dabi sitting side by side at the Mardon Rehab Centre and Simeon…well, I’m not sure where he is at the moment. Part of that rhythm also allows quiet tears to come and go for us from time to time, both folded into and a part of the everydayness as past, present and future all meet. I sat next to one of our five during the week as tears flowed, set off by some passing old memory which had highlighted the fact that future memories including me might not be there to be made. Again, it’s a part of our normality – the painful part – learning to lament. I’m conscious that it’s something scripture shows, especially the Psalms, pouring out our hearts to each other and God, openly and honestly yet trusting that His way and purpose is somehow always and ultimately good.
So it was with a sense of the everyday that Catherine and I saw my oncologist last Thursday, having had a CT scan a week earlier. Ayman Nasser, my main oncology doctor and one with whom I’ve developed an easy rapport, took us through what they’d found. And that was? Precisely, nothing new – my tumour remains unchanged. In one way, viewed negatively, the ipilimumab has had no effect on the tumour itself – neither an expected inflammation and nor any shrinkage. But positively, it has not grown nor has the tumour proliferated into further tumours in my lung. Ayman personally had not seen this before and was not sure exactly what it meant, but when I asked him if it was an ‘OK’ result, he nodded and said, ‘Yes’. After some further talk around a variety of subjects, we left for home. But we left not only feeling completely easy about what we’d just heard, but actually quite content as it has helped clarify our thinking as we seek guidance for our future.
For Ben, we continue to nurse concerns. As one friend said yesterday, he is still ‘a very ill young man’. Whilst this journey of recovery is inevitably going to involve the occasional ‘one step forward and two back’, we feel we’re seeing it happening more often than not. He came out and joined us at church near the Mardon Centre yesterday morning, having also been at home for most of the previous day. But he’s aware that walking for any distance is both risky and difficult because of dizziness, shakiness and the real risk of a seizure, but even simple tasks using his hands are slow, even unsafe, because of the trembling sensation he experiences in all his limbs. We’re meeting with the neurologist on Wednesday for a ‘round table’ discussion involving some of his therapists. Hopefully it’ll provide useful information which will help our perhaps over-eager expectations. We were glad Dabi was able to spend part of last week with some Brazilian friends in the Midlands and we continue to pull information together to support an approach to the Home Office to either extend or alter her visitor’s visa.
I was encouraged to read these words from Isaiah last week, words which seem apt both for Ben and for us all, containing so much promise and hope…
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint (Isaiah 40:28-31)