I was diagnosed pre-covid, but sadly Covid made it into hospital before me so my surgeon put me on Biclutamide daily, with another tablet on a Saturday to take some of the side effects down. I hated it. Between them, the two drugs made my life a misery. I was waking up in the morning to work from home and finding myself asleep by ten a.m. and then all afternoon from two p.m.. Saturdays were a wipe out.
I rang the hospital in a lucid moment and was taken off the two drugs and this was replaced by Enzalutamide. I got my Saturdays back and I could work longer but truth be told I often had no idea of what I was doing, my memory slowly fading as though I had Dementia. (Dementia killed my father, I was his nurse, it was easy to see the same patterns occurring.) So after a few weeks of that and becoming more and more Zombie like, my GP spoke to the surgeon and I was put on injections. I got my life back.
After my operation the surgeon who had performed the operation wanted to put me back on to Biclutamide, there was a row and I refused, explaining that I had already been down that road and there was no way I would be doing that awful sleep pattern agaiun. He passed me on to the Oncologist who wanted to put me on to Enzalutamide, again I refused and thids time there was a blazing row. I asked for a second opinuon and I was passed to another Oncologist, who was methodical, took me through my results, showed me my scans and basically talked to me like I was a human instead of a piece of meat. Because he looked at my treatment history he said there was no need for either tablet and I could go straight on to the injection.
Although my PSA came down it wasn't as fast as he wanted and he talked me through the effects of Enzalutamide I had experienced and finally I relented. I would try it again in conjunction with the injection.
It took less than two weeks before my arms were covered in eczema, my neck was red, the hot flushes were horrendous and slowly my memory was fading. He retired and I was referred back to the first oncologist, all it took was one appointment. I showed him my arms and he was horrified. Then as he was making notes I was chattering away about it all when I suddenly stopped talking. There was silence and he looked at me. I said 'I am really sorry what was I talking about, I cannot remember, I have lost the thread. This happens a lot since I went back on the tablets.' I was taken off them immediately.
Within a week my arms had almost come back to normal, there was skin not eczema, my neck had cleared completely. My memory hasn't quite completed but I can hold conversations often without having to stop. Especially if I am relaxed. I have a life that allows me to travel about and meet people. I watch what I drink and eat but never again will I have to take those awful drugs.
I tell this story because I was being bullied into a treatment that was destructive and would have cost me my job. I tell this story because somewhere out there is another me who is suffering on either Biclutamide or Enzalutamide and thinking it is natural, it is not. You do not have to suffer. These tablets may be good at curbuing cancer but at what cost?