I’m sitting currently writing this at 2.50am suffering from an increasingly irritating case of itchiness over parts of my body and an area of rash on my arm and stomach. The itch is such that it’s keeping me awake. I can do nothing for it except scratch and I am going to have to head into hospital today to have myself examined for possible side effects – the first – of my treatment. I’m hoping that writing will help as a distraction. But I’m not sure how successful it’s proving to be.
It’s happening, however, less than 16 hours after Ben was re-admitted to the main hospital having suffered a couple of major seizures yesterday while firstly in a physiotherapy session then back in his room at the rehab centre…and this despite the fact that he is on the maximum dosage of anti-seizure medication. He’s had a few bouts of sickness and vomiting this week which may have unhelpfully removed some of the drug from his system, but we seem to have landed on a ‘snake’ and slid back a few places on the board. He was taken in an ambulance from the rehab centre and admitted to A&E where he was drugged, assessed and, after a CT scan, sent to the High Dependency Ward for further monitoring and tests. The scan proved clear and by last evening he was waking up when prompted, sometimes replying, sometimes not, and then falling back to sleep. On top of all this, big concern has been expressed by one of the consultants over his weight loss, which has up until this point received little attention.
But it’s happened during a further week of what has seemed to be like ‘snakes and ladders’ for him, me and us. Some days he shows signs of improvement, but other days it feels like he’s slipped. He’s been suffering from continuing shaking in his limbs and his ability to walk for any distance is extremely limited, often needing to sit down after only a few steps. But then, with his godfather Andrew visiting on Thursday, he appeared quite animated and well, and the two had a lively discussion about planes, computers etc, Ben adding a bit of humour along the way. Home with us however on Saturday, and with two old school friends visiting, he seemed to me to progressively deteriorate as the day went on, collapsing into a wheelchair as he returned to the Mardon Centre later.
Ben, Dabi, Catherine and I had met with consultant neurologist, Dr Harrower last Wednesday to discuss progress. It was a good meeting, but one which showed he has a long way to go….his forecast stay in Rehab was described as ‘months’. Positively, Tim Harrower explained that repeat scans had indicated progress. His latest scan showed that structurally his brain had ‘resolved’, and that the signal changes which cause seizures appeared more under control. However, he explained that so far there have been no positive results for any cause of his seizures. He is treating them as “idiopathic” (unknown cause) at the moment. Yesterday’s seizures and re-admission to the main hospital no doubt add further question marks to the mystery for the neurology team to solve. It’s left us all feeling quite wrung out and with few natural reserves to draw upon.
I had my own chewy moment late last week when a requested report on my condition arrived through the post. I’d asked for it to be written so it could be included to support our case with the Home Secretary for Dabi’s visa to be extended or altered. The report however was stark. Referring to our first meeting in October last year, my oncologist wrote, ‘…we also discussed the fact that the current median survival of patients diagnosed with metastatic melanoma is in the region of 8 months.” He went on, referring to my ipilumumab treatment, ‘although you have had no significant side effects so far, it remains possible that you could still develop immune related adverse effects of melanoma which, as we discussed, may be life threatening particularly if they affect organs such as the liver or the bowel. Current published data suggests that ipilumumab will produce a prolonged period of disease control in 20% of patients. He concluded, ‘In summary, therefore, you have a metastatic melanoma, stage four with an 80% probability of disease progression despite first line treatment with a median survival, given that we are now four months on from your original diagnosis, of potentially 6 months. You remain at risk of potentially life threatening serious adverse effects of the ipilumumab treatment.’
As I read it, I felt myself internally wilt. I already knew it all, but reading it on paper was brutal. However, just as I was reading it, Bruce and Beverley, some dear Kiwi friends from our days in Timaru where Ben was born in 1991, were ‘strangely’ prompted to write to us. Half an hour after reading my doctor’s report, sitting in a dark haze and mindlessly flicking through emails on my phone, I read Beverley’s words to me and Catherine…
“….However you are all constantly in our prayers and Catherine, I especially ask for you to know the Lord’s presence. To see your husband and your son suffering at the same time must be extremely hard. I can’t imagine what it must be like. Remember, “When you go through the waters I will be with you, through the fire, you will not be burnt.” You are not forgotten.”
Those words especially from Isaiah 43 were like balm for my soul. I sat with tears in my eyes. Father had known what we were going to read from the hospital – and it had to be read. But He also knew what we needed to read, needed to know and so He prompted a friend 12,000 miles away, a friend from Ben’s birthplace, to sit and write.
We are certainly not forgotten, and we were strengthened. And we’ve been strengthened by a small number of particularly special messages, gifts and offers of generous help from friends near and far, from churches and folk with whom we’ve shared life over many years. It was special to have Simeon take me out to lunch last Sunday for some father/son time, talking about all that’s going on, the effect that it’s having and, without any easy answers, strengthening each other.
Looking to the Son, who suffered such agony to save us, we can face today. I can, like King Hezekiah of old, lay out my letter before God and look for His deliverance for us, in whatever form that takes, all the while knowing that we’re never alone.