Someone contacted the church office recently, wanting to know if I was still alive! A fair question really—they’d read my book and suspected the worse. Well, despite my lack of blogging recently, I’m alive and enjoying the life God has given me.
This week I’ve celebrated my fifth birthday since diagnosis. And today my CT scan showed that I am still no evidence of disease. It’s over three years that I’ve been N.E.D. I’d prepared myself for bad news—somehow expecting that I’d have to change my name to E.D. But my results show no change. Thank you God!
Most of you will not know that it’s now nine months since my last cycle of chemo. It’s a real joy not to be poisoning myself every three weeks. Some of my regular side effects have disappeared. Others like fatigue, chemo brain, and anxiety continue. It’s been wonderfully liberating not having to plan my life around three weekly cycles of sickness.
Four years is a very long time to have non-stop chemotherapy. It’s tough physically and emotionally. It’s hard to keep getting poisoned when you are not sure if it is working or necessary. I was prepared to stay the course whatever, but a number of doctors raised questions about whether, after showing good results for so long, it might be worth taking an extended break. So in November last year my break began. I’ve had three scans in this period, and each one has show N.E.D. My break continues.
I described my circumstances to people the other day as like being in a battle zone. Through the years of chemo it was like I was wearing body armour to protect me from the enemy. At the beginning the enemy lines were clearly visible. After I became N.E.D. it changed to a fight against a hidden opposition—like terror cells that can pop up anywhere. I didn’t know where or when or how the enemy might appear, what shape it might take, or what it might do to me. My oncologists believed the enemy remained real and would seek any and every opportunity to attack. So the body armour was essential—I was urged to stay with the chemo indefinitely. The strategy was vigilance, protection, prevention.
Now that I’m not taking regular chemo, it’s like going out without the body armour. The enemy may or may not be present—there is no way to be sure. There are risks. The cancer may raise its head again. We cannot know. I’ve received mixed advice from the medical experts. They cannot tell me anything decisive. Scans are clear, but their scope is limited. Nothing microscopic will ever show on scans. Some say the cancer is still there—simply because they don’t believe treatment can cure my cancer. I’ve been described as a ‘super-responder’. My results are off the charts and there is no data out there to definitively advise me what to do.
So I will stay in touch with medical updates, clinical trials, and the latest in treatment strategies. I will keep talking to my ‘cancer buddies’ about what they are experiencing and discovering. I will continue three monthly CT scans and introduce six monthly MRIs of the brain. I will gradually increase my exercise and try to eat well. But mostly, I will remember to number my days, using the time that God has giving me to trust him and live for him. I will thank him for his saving love, for his gift of life, for the blessing of family and friends, and for the honour of praising him.
I want to honour my family for supporting me on this long and often painful journey. It’s been hard for them and I owe them a huge debt of gratitude.
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