Another nice bunch of folk ...

Hi Able

It a long and very personal journey and even with all your "issues" you are doing great - you know at the end of the day you need to go down the treatment path.

I noticed yesterday you had been away from the forum for a few days and almost put up a "Good Luck Tomorrow" post but then realised - well, it just wasn't the "right" thing to do in your case. - Don't judge me by that - just a personal thought.

I wish you well today - keep us posted on how it goes - assuming you go through with the surgery.

As I have said before we as a Community are with you and as you found out so is your local PC group.

Best wishes - Brian.

Morning Brian and thanks again for your interest in my situation and your support.

Once the reality of surgery actually hit me I think I decided then that I was very unlikely to go though surgery, ever, irrespective ... and at some suitable point, book two tickets to Switzerland for the wife and I (her idea because of her dementia). I guess people need to be in our minds to understand why that would be our choice.

So now it's just a matter of how we contact anyone in the NHS to request RT, none of the 20 numbers we tried to ring at around 4:30 yesterday were answered to be able to ask for advice or support and we only managed to get though to a Night Nurse number st UCHL to ask them to leave a message for the surgery team, apologising for our non-attendance. The number given to ring to cancel wasn't answered either. No reply was ever received from my email to me 'care team' and because of my procrastination issue, I just left it. I even emailed my Oncology Specialist / Nurse at UCL, stating my position).

So it was frustrating (because I hoped I had done enough to notify them) being rung at 8am by the surgery team asking why I wasn't there, frustrating that I couldn't get though to anyone yesterday when they might have been able to offer that slot to someone else.

Hi Able, Thanks for the update. I can understand your feelings regarding surgery - reading back through your posts I feel deep down you knew surgery wasn't the answer for you and that in hindsight - yes - you should have cancelled the surgery option earlier in the journey - however you can't go back in time and I an not judgmental.

I hope that your team can sort you out on the HT/RT pathway as soon as possible and that this is a suitable treatment for you - we as a Community are here for you and there is plenty of help available to you.

I am aware of your personal circumstances and that you have a number of issues to deal with - I am aware that this is also a public forum - I have some resources that I can suggest and that we may be able to give you some further support - you don't have to accept the offer of help - if you do would you like me to put my ideas up on this forum or do you want to message me in my personal inbox and we can discuss this "off line".

Take your time in replying - there's no rush and I won't be offended if you say no to my offer.

Best wishes - Brian 

Millibob said:

reading back through your posts I feel deep down you knew surgery wasn't the answer for you

In my case, it was (technically) an answer for me and likely the most sensible one from a long term survival POV, given it's easier to have RT after surgery, not quite so the other way round. So that's the 'practical' solution.

However, that doesn't consider any 'human' issues in the process and the bit I had assumed wasn't significant, until that was I was actually faced with the inevitability of the event, that escalator pushing me ever closer to the da Vinci machine and that's when the penny dropped and I hit the emergency stop button.

But it wasn't 'just' the actual surgery ...(I'd hopefully be asleep though that bit), it was the prep, the catheter, stockings, drains, possible stoma, the pain (I'm not good with pain and have only just recently been 'ok' with needles and blood drawing etc), the recovery, the 14 days, the 6 weeks, remembering (and being bothered) to do the PF exercises (no mater how often Squeezy Man reminded me [1]) and the thought of having incontinence and ED for any time period was all too much. Now, the chances are there with be some or that with RT, just that it doesn't actually require the 'robot scissor-hands' bit.

[1] When, when confronted with such things and without having convincing reasons 'why' or belief it would avert the actual situation (eg, 'better / quicker isn't the same as none)... and when in light of everything else, when you really / actually don't care how long your future might be? And that's not said with any regret or theatre etc, it's just a statement of fact, like with all those who would rather carry on drinking or smoking because a life without would be no life at all? We aren't all created equal.

But thanks for your offer of help but I believe I know I what I need to do (big picture, not even the PC), I just need the willpower to do it.

Edit: It seems the NHS is closed for any level of admin from 4pm Friday to 8am Monday so I'm going to wait till Monday and see if I can contact someone anywhere who is willing / responsible for my baton in this journey and put me on another tack. I really don't know who that someone is right now as I've never made contact with them (various bodies have contacted me by phone, app / portal / email along the way to just tell me about 'stuff') to know where to start but I guess I'll just start ringing Monday morning as see what comes up.

Hi Able - Okie Dokie - No problem- but you know where we are if/when you need anything - the offer's still there.

You take care - get your stuff sorted - life goes on and everything will kick start Monday morning.

Just keep us posted with your PC journey - we can at least share that bit with you.

Best wishes and no hard feelings - we are still here when/if you need us.

Brian.

Millibob said:

Best wishes and no hard feelings - we are still here when/if you need us.

None taken (or ever likely to Brian) as I'm pretty thick skinned where this sort of communication is involved.

And as for the help ... that's a difficult one, given we all seem to be quite different re our needs and wants and for me, (and please take this the way it was intended), is only really help, if it actually helps (me and directly in this case).

So unless you have a magic wand that could put me though PC surgery and have me wake up in a year with the cancer gone and no side effects, or rid my wife of dementia, or sort out all the other 'stuff' I need to sort out, then at the end of the day, it's not actually going to 'help' (me) in any tangible way? You might suggest something that could help, I'd agree it might and that it was a good idea ... then just carry on as before. In my bigger picture it just becomes more noise, more clutter in my brain. ;-(

That's not to say I don't get anything from the discussions of course because I do (and appreciate anyone spending any time, trying to help), even if only a sounding board for some thoughts or ideas, but short of someone knowing who is supposed to be in my 'Care team' and getting them to offer the actual care that someone in my position might need to navigate / choose / get me started on some actual / direct solution to my situation, I'm not sure they can help?

And the help I need isn't likely to come via the likes of The Samaritans or The Alzheimer's Society, it's real people actually doing real world things 'for us', that make real solutions happen. And in that real world they rarely can, like so far, no meeting or event we have attended for the Mrs has mad *her* feel happier than just out with me. She isn't on her own or lonely as many may be, we are a team and so (luckily) don't need anyone else.

So real help is what we need, like the mate who stepped up and offered to drive me into UCH (partly because of the train strikes, partly because it was just easier for me, especially on the way back) and pick me up again, even if I changed my mind back at 4am.

But this last minute realisation that I didn't want to go though surgery (as you correctly spotted, and never did), the last minute bit is something the wife and I resolved years ago around invites to social events. I would say yes if she asked if I would like to go to some party at the end of the week. Then during the week the thought of going just depressed me more and more till as I was supposed to be getting 'dressed up' ready to go, I would announce I wasn't going (but would take her if she wanted etc). She would be annoyed, not because I didn't want to go, but that I had said yes in the first place. So we made an agreement, I would generally say no and might change my mind later (and most places we would likely go to wouldn't mind that) and was happy for her to go if she wanted and would take her there etc. Some places she did, others not and I was perfectly happy being called 'miserable' behind my back or whatever, as long as they left me the f-alone. ;-)

However, it wasn't quite the same with this PC surgery, it was (is) sort of life and death, but whilst logic seemed to prevail at the beginning (surgery allowing for RT afterwards), I hadn't really considered the practicalities of it all, it was just a term, 'surgery'. Maybe if I had ever had surgery before the penny might have dropped sooner or even at the beginning?

Hi Able

I fully understand where you are at in your situation and the last line of my last post still stands.

The "Reaction" I've sent is a "Man Hug" with my best wishes for the future.

Brian 

Millibob said:

The "Reaction" I've sent is a "Man Hug"

I don't mind what sort of hug it is Brian ;-) and I did / do appreciate the offer etc.