Hi@mowly77 - I am also Stage IV, dx'd de novo, bone only, HR+,ER+,HER2 (low). That was 2.5 years ago and have just started my second treatment line after palbo was starting to fail. Once the drugs are dialed in for your tolerances they are pretty easy and I live a normal life.
I was just reading on the Macmillan forums about another secondary gal who had something like a two MONTH wait for treatment to begin post diagnosis, who is in a lot of spine pain and was getting fobbed off repeatedly by the hospital. Although actually now that I think back, thats how long it took from breast clinic appt to starting meds, and that was back in late 2019.
The NHS breast teams may work "brilliantly" for early stage women, but I swear to god everything slowed right down once they found the bone mets, not to mention I rarely had the same oncologist or even a breast-specific oncologist doing my monthly reviews. I switched into private care after a year of NHS fooling around, and its been much better and they found things I would not have been tested for on the NHS. I recognise that is a privileged position to be in, though it now locks me into employment for longer than I would wish.
Unfortunately the admin burden on this disease can be high at times, in addition to the physical issues, and its such a drag on moving forward mentally. But you really need to be the squeaky wheel to get anywhere, unfortunately, although I get that sometimes it feels like you are launching yet another voicemail into the black hole of nothingness.
Once you get started on treatment and things settle down it will get better, its just the waiting drives so much anxiety!