The news continues to be positive for Ben as he has made further progress in the last two days. Whilst he still has tubes at both ends, one feeding him, he’s alert. At this stage, he’s best described as being like a toddler in terms of his responses – he recognises me and Dabi, is not so sure about Catherine yet, but willingly gives her a kiss when asked, and when looking at photos, mixes up his siblings. The neurologist yesterday agreed that it seems there are blocks of memory that have returned, but others that haven’t. He waves his hand in response when we go, and smiles at times. His speech is minimal, quiet and only semi-coherent: communication is at its best when he has a ‘yes/no‘ question to answer. He’s making regular attempts to get out of bed, but is told firmly ‘no, lie down’ by us or the supervising nurse, because of the tubes. The physiotherapists had him standing yesterday to do some work with him. Apart from his mental capacities needing to improve, physically he’s very gaunt, and has lost much muscle tone.
All in all however, it’s been so encouraging for us to see his progress, although we understand that the rehabilitation road ahead is a long one. The medical team hope that as test results start to come back in the next 10 days, more answers will begin to emerge about what seems to be an auto-immune condition in Ben’s body causing a form of vasculitis.
For most of yesterday, I was literally through the wall from the neurology ward having my last treatment session with Ipilimumab. The dear NHS has now emptied an eye-watering £360,000 worth of this state-of-the-art drug into my veins. As someone said to me recently, you must feel like the equivalent of the L’Oréal boy…“Because you’re worth it”! I’m going to miss Cherrybrook ward as I’ve come to enjoy my three-weekly enforced rest and relaxation session. Combined with each treatment has been an anti-histamine which makes me nicely drowsy and often sends me off to sleep. I’ve so appreciated the amazing attitude, care and attention of the nurses and other medical support staff – and that for Ben as well, especially while he was on the ICU. As far as my next steps, I’ll be having a CT scan in a month’s time. The team often find melanoma tumours by that stage to be inflamed and angry, reacting to the drug. They therefore pay little regard to this scan. However, a month on, I’m scanned again. This is the scan to which they’ll be paying particular regard as it’ll show which way it’s going.
In the meantime, when people ask how I am, I often answer as my dear old friend and mentor Simeon Damdar used to answer. Some 26 years ago, I worked as a Voluntary Evangelist for the London City Mission under Simeon’s care. But Simeon has suffered with heart problems for many years and when people asked him how he was, he’d answer, “I’m fine, I’m dandy, I’m thriving…it’s just my body that’s not so good”. I love that response. Truly one that a lover and friend of Jesus can use at most times. It is well with my soul. But I’m feeling fine and well otherwise.
Catherine and the children are all doing “ok”, although this time with Ben has hit them all variously in different ways and at different times – one copes differently to another. Tom has managed his first term studying at Cardiff really well despite the fact that my diagnosis came only three weeks after he started. He’s even got some great first grades back. Simeon has come and gone, struggling at times but supported by his mates; Josh and Lydia I’ve mentioned in recent posts.
As we continue to walk through each day, many messages come from friends. This one from Andrew, both a friend of ours and Ben from his time at Plymouth University, particularly struck a chord for me –
“In the knowledge that sickness is part of this fallen world and will one day be wiped out and we pray against it…and yet knowing that suffering is that which God uses to sanctify and that even he can use sickness for good, I hope this quote from Samuel Rutherford is of some help: ‘When I am in the cellar of affliction, I look for the Lord’s choicest wines’.”
It has been a time of discovering the ‘choicest wine’…and it has been very choice. But it’s only possible because of the promises contained in these words of scripture, penned by the apostle Paul in his letter to the Romans, chapter 15
‘May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope’