By Neil, Radiation-Induced Lumbosacral Plexopathy, United Kingdom, March 4, 2018
My story starts in the summer of 1976, when I was just 21 and diagnosed with testicular cancer. Surgery and six gruelling weeks of radio therapy followed, and then followed routine check-ups weekly, then monthly, then six monthly, then let's not bother any more with my oncologist. I remember our parting consultation very clearly. He told me that I was now more likely to be run over by a bus than die from the cancer, but that I might just want to be on the look out for severe digestive/bowl problems. If they arose, he suggested that I go back and see him. Oh yes, and he appologised for not having taken my sperm for safe keeping before the treatment...
And that was that, really. Years came, and went. Every time I had a stomach upset, my innards churrned in more ways that you can possibly imagine, but life generally went on. Yes, I had some interesting things to say whenever applying for life assurance (very useful when applying for a mortgage!) and on job applications, but it was almost as if I had imagined the whole thing. (Actually, to tell you the truth, maybe I did. After the first of thirty pelvic radiotherapy treatments, I was so out of it that you really would need to ask the people who looked after what went on.) Eleven years after treatment, a lovely daughter came along and, yes, all was good.
OK I've always had a tenedency for colds to turn into touch of bronchitus, and I did go through a period when I got severe leg cramping and started to walk a bit oddly, but as my practioners said every time, lots of people do. But what no one so much as suggested was that my radiotherapy was coming back to haunt me - until. that was, 2014, when I had had more falls than were good for me, and I was despatched to see a neurologist. A little over a year later, the conclusion was that - having ruled out every other possibility - I had Radiation-Induced Lumbosacral Plexopathy. He'd never seen it before, and I've not met a clinician, therapist, social worker or whatever that has since.
It's extremely rare, it's progressive, it is incurable - and I remember my parting consultation with him with clarity similar to the one I had with my oncolgist. He said nicely, if a little bluntly "Goodbye, and Good Luck."
So, there we have it. Then I was finding walking stick helpful. Now, if I walk at all, it is with two elbow crutches, and we carry a wheelchair around in our specially adapted car.
Ah well, just think what I would have missed if the cancer had got me....but, equally, just think what might have been different had I been forwarned. OK, the practitioners still would have been unable to stop the condition, but their effeorts to help might have been more useful - and I could have got on with ticking things off my bucket list while I still could.
It's too late for that now....