Thanks everyone for your comments - it's a real boost to read this stuff.
Two weeks after the 2nd Radium 223 injection and I haven't quite got the pain meds sorted - it's a balancing act with those old style scales that bounce up and down for a while everytime something changes. So it's 600mg of Pregabalin daily, + 37.5 microgram Fentanyl patch, 4mg of desamethosone, and 8 paracetamols. I feel a bit spaced out (I'm chuckling as I write this) - can't thing why, but the pain seems manageable. There are moments when it flares up pretty bad, but usually dies back down just as quickly. I'm trying not to use the abstral too much as I need a really high dose to be effective and I don't want to overdo it. Mobility is a bit issue, but like the pain it's difficult to find any pattern over the 4 week cycle. Some days I can walk quite freely, and barely need the stick. Other days I can't manage without the stick and I'm staggering about rather than walking. The pain too is perplexing. You'd think that it would be bad in the early stages of the cycle, and then slowly improve, but I've had days in the first week that have been almost pain free, followed by days when it definatley isn't pain free. I'm hoping that by the end of the third week I'll get some real respite, like in cycle 1 and be able to "live" a little more.
I'd hoped to spend part of today going to the shops and a couple of nearby garden centres, then spending the rest of the day pottering around in the garden. But the pain in my right leg meant no chance of driving - even just a few miles. It's hard to figure - I can't sit down for even a minute during the mornings without a huge surge of pain, which I can only deal with by standing and wondering around. Exercise like walking seems to help. Later in the day something changes, and sitting down, and even driving becomes possible. But it's so unpredictable.
I guess I have to get used to this, and instead of making plans for what I'd like to do days in advance I need to wait and see what happens on the day. This is so very different to the way I've been used to living. But things have changed, and I need to change too - there's really no alternative, and moaning or complaining ain't going to help, so better get on with it.
Lyn - thanks for the links. They were interesting reading. Andy Ripley got almost 5 years of quality life after diagnosis and showed so well how to live well until the cancer finally took over. He seemed to do well at getting on clinical trails. Not the case for me - oncologist did mention some stuff, but I could tell from the way he was talking that is was just pie in the sky, so I never put any stock in the idea and now I've just forgotten about it. If anything comes up I'll try it, but I'm not sitting by the phone waiting. I fully understood what Nimeniton was talking about - these thoughts have been with me too, more so recently. I know there is going to come a point (probably when metastatic spinal compression cripples me) when hope runs out and quality of life fall too low. I've already decided that at such a point it's time to throw in the towel, check-out or however else you may put it. The doctor from the Hospice has come out to see me a few times - on the last visit she commented that my lounge was plenty big enough for a hosptial bed! Whilst the idea of a new bed with a comfortable mattress and all that adjustability at the push of buttons on a handset does hold some appeal, the reality would be that I'd be a prisoner in my own home, unable to move about, and completely reliant on other people to do everything for me. That's not living, and in no version of my future could I put up with it. So we can forget about the hospital bed in my lounge - I'll have to take matters into my own hands by that time...
Michael - don't get worked up about the PSA numbers. I've just hit 10,000 and I just rolled my eyes when the doctor read it out. It's like whatever is left of my cancer riddled prostate is spinning out of control and all it can do is produce evermore PSA - pretty useless organ I'd be well rid of. I'm just curious as to how high it finally goes. The specialist nurse at Weston Park told me PSA is a bit like smoke. You can have a fire roaring away (like an aggressive cancer) and producing very little smoke, or conversley you can have a fire that's smouldering away producing loads of smoke but very little heat. It's best not to try and read too much into these numbers - all my oncologists have told me this, and whilst I'm always curious to know what the latest score is I don't dwell on it. In the early days I used to plot the figure on a piece of graph paper stuck on the side of my fridge. I worked out if I tried to plot the numbers now I'd be in the attic.
Getting the Radiotherapy and Radium 223 was a real minefield for me. At first, back in February I was told that neither would be on offer, because of - well reasons I can't now recall, and probably didn't understand at the time. But shortly afterwards, and after various scans and blood tests, and being transferred to a new oncologist I was given a low (way too low) dose of EBR - I was told I'd reached the limit for treating the particular area which was affected. But, shortly after that there was a change in opinion, and I got a huge dose of EBR, and that really had an effect. I never questioned any of this - just leaving it to the experts to decide what was best. A few weeks later I saw the oncologist again, and we had a long conversation about where I was at, how difficult it was to predict what was going to happen next, the risk of further nerve damage and the chances of Radium 223 actually making any difference. Chances were about 50/50 of it working for me. If it did it could extend my life into next year. if not it would just be an unpleasant experience I could have done without. How did I feel about going into palliative care? Hmm, been here before. Palliative care to me means end-of-life, and I'm not ready to accept that - I simply feel in myself that this is not my time, and I still have a life that I'm continuing to live, and I'm happy with it, despite everything that's happened recently and the massive changes I've had to accept. So, 50/50 - I've had far worse odds than that in the train wreck this is my life - bring on the Radium. It's not been as easy as I hoped - by far the most difficult treatment I've had to cope with, but every problem has some sort of solution, and so it comes down to management, and not giving up.
I'm not sure why I was initially told that I couldn't have Radium 223, or why the change of mind. Unlike many others on this forum I'm not much good at actually understanding the detail I'm given - back at diagnosis, when I had the DRE / Biopsy I was told loads of stuff about how unusual my case was, and how the doctor who did the biopsy collected loads of extra samples (urgh - that biopsy went on forever - it fealt like a torture scene from Game of Thrones) and sent them off to different labs for analysis. When I met the oncologist for the first time she had a huge folder on the desk, looked up at me and commented on the complexity and how it was "not textbook". I never understood any of it. Perhaps my way of dealing with the situation - I'll let the doctors deal with all that - they're the experts, and I am definately not. It was also at this point that I decided two things. Firstly, I'd fight the cancer with everything I was offered, and I wouldn't give up untill I was finally beaten into a quality of life that fell too low. Secondly, I'd put my trust and faith in the doctors and medical staff - they have the knowledge and expertise, not me. So their advice is what I follow.
I know what you mean when you talk about feeling strangely calm. I get that a lot. When people find out I have cancer they seem to get upset about it and start being sorry and getting a bit emotional. I did when I was first told I had cancer. A doctor I have (thankfully) never seen since told me quite bluntly on the 30 July 2019 (my 58th Birthday) I had advanced cancer, I wouldn't see out the year and should put my house in order, and get this - that this was Gods plan for me. I kinda switched off a bit at this point, but I recall him going on a bit more about God. The nurse sitting slightly behind him looked uncomfortable and embarased. I left the room in a state of shock and spent the next 20 minutes staring out of the window on the stair well. I drove home on auto-pilot and for the firt time in years even had a few tears - how could this be happening to me. It kinda ruined my birthday among other things, but 24 hours later I'd found the strength from somewhere to start to deal with it. I saw my GP later that day. He looked at the reports and information and was baffled. Even in the worst case senario it would take far more than a few months for the cancer to kill me, and when I mentioned the monologue about it being Gods work we both started laughing - I mean seriously the wrong wavelength! Like I say, I've never seen that Doctor since. The talk with my GP put me strangely at ease - we talked and were both quite upbeat about it, and it's been like that ever since. The alternative is to fall into anger, self pity, and the "why me" mentality. All of which are completely unhelpful. So don't go there. It is what it is and accepting this is the only way to go.
I do recall how my life changed dramatically over just those few days. I looked at what I was spending my time on, and how much was spent of stuff that really didn't matter. So I stopped doing what seemed like loads of things that had been important, and now I realised weren't. It was high-summer, and I went for long walks in the surrounding countryside - everything seemed a bit more real and in-touch, kinda hard to put into words. I was signed off work, so I'd just get in the car and take off for a few days, or a week and go where ever I fealt I wanted to go - road trips (the answer to all problems). It was a sureal time, and in a way it's continued ever since. My life was turned upside down, so I went with the new flow, despite all the agro of having terminal cancer - I just started to move on in a new direction.
Now I've said this to people over the last nearly 4 years since diagnosis, and I don't think anybody has really understood, judging by the look on their faces. These years have been amongst the best of my life. I've looked at my life and how I was living and chucked out all stuff that really doesn't matter. I'm more intouch with the nature around me and appreciate every day like I never did before. I have been so fortunate to have a good medical team looking after me (my travels have taken me to many countries where someone like me would get no medical treatment at all - imagine how awful that must be). I have been able to travel to places I only ever dreamt about and experienced things that have really made an impact on me, making my outlook on the world different and changing me as a person. For all this I'm truley grateful. It's ironic that all this has happened because I have cancer, and that my time on this Earth will be cut short... very short. It's a bittersweet experince - on the one hand I've been able to live, for a few years at least, the kind of life I've wanted and indeed needed - on the other hand it's not going to last for long. But even now, when things are starting to fall to pieces, I still feel generally happy and a little unconcerned about my situation. Despite all the limitations I now have to cope with, when I wander out of the house on my frequent local walks I'm always smiling, and that's the way I want it until my time comes.