I have stage IV prostate cancer, with which I was diagnosed in 2004. My wife, Jacqui, is now registered as being my carer.
She had resisted registering while ever I was on the drug Zytiga, on which I had been placed on repatriating to the UK in 2017, as I had generally coped with it well -- apart from a little confusion. When this failed, about two months ago, I was placed on a strong dose of Xtandi (enzalutamide), and the side effects began to pile up. The confusion deepened, and was joined by fatigue, while physical side effects built up too -- fluid retention, aching joints and muscles, tender teeth (!), dry and itchy skin, restless leg syndrome and tender testicles. This encouraged her to register officially as needing to care for me.
At the time the Xtandi was prescribed, in front of Jacqui I expressed concern that my treatment options were becoming limited. The oncologist answered vaguely by saying that new treatments are in the pipeline and only awaiting Nice approval. I think the lack of specificity disturbed both Jacqui and me.
Regarding my current treatment, the low point came about two weeks ago when I was reduced to hobbling like an old man (I am 63 and previously did not hobble at all). Every muscle had developed some rigidity, making movement challenging. Even my rib cage was aching. Jacqui and I were in a motorway service station at the time, where we had stropped to use the loos, and I could see both the fear and frustration writ large on her face as she strove to walk with me but also to get us away from the madding crowd. Thankfully, the oncologist saw the sense to halve my dosage and I am now much improved.
Jacqui is not (yet) a member of this community. So, I shall take the liberty of asking a couple of questions on her behalf:
1. Are there any carers in the community who face similar situations in their partners?
2. How do you cope with the frustration and fear?
3. What do you cope regarding the nagging sense that your partner is on a downward slope regarding both treatments and disease?
My apologies if this is not relevant to this community, but I will pass any responses on to Jacqui.
