The long middle

Hi 

Thank you very much. I am going to down load the app and practice. 

When I was given a more terminal diagnosis, I was in such a great mental space. Probably the most at peace in my life. I would really like to be back there again so will go to see my therapist again and work on things. 

Hi 

Thank you for your message. I unfortunately do not have any good response to systemic treatment. Only surgical intervention seems to work, so feel the eventually the cancer will pop up somewhere inoperable. But will try to concentrate one day a time and not wasting life living in fear. 

During and after my first PCa treatment(s) I rarely thought about the "future" in terms of the illness. 

More difficult to ignore when recurs and categorised incurable, palliative only. While usually I can still shove it to back of my mind (I am very lucky in respect of decapeptyl and darolutamide side effects), today I can't! Actually feel quite sad and, worse, worry for my partner of 7 years. We were both widowed before we met and TBH have both been newly happier than most of our preceding decades.

I am feeling guilty for letting us get so close and then "leaving" her. 

A bad day in the maybe-not-so-long-middle. 

Good luck all, Dave 

Oh, I can only wish and hope for a long middle. I'll take it. I may not have the luxury. Too many 'mets'. Or maybe a miracle treatment will buy me something with a quality of life yet. Who knows?

I am learning to live by the 'piece of string' philosophy. I just can't rid myself of everyday life's petty and far from so minor and not time-consuming annoyances and people yet. I want to relax, enjoy, appreciate. Not yet succeeding, and time feels so terribly short, one way or the other. Does it even therefore matter?

Trying to be me again, yes. Trying to clear out the crap and enjoy it. Trying to make my death and affairs easy for Hubby. Trying not to care about scrimping and saving so much on foods and costs any more (one benefit). Spending Hubby's inheritance

This was my initial and over riding feeling when we first got my prognosis - sadness and a feeling I would be abandoning my husband - however, I have come to accept that I won't be abandoning him, I would stay if I could.

Meanwhile I've lit some candles to brighten this dark morning and am enjoying my coffee. 

Hugs to All

https://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?unlocked_article_code=1.X1A.jYA4.ubYRm7ko70QI&smid=nytcore-android-share

This piece is very good at explaining about ‘how long do I have to live question’ 

That’s another really fantastic piece on this topic. As I am sure I have mentioned many times before, I have never asked for a prognosis and never been given one. But I avidly devour research papers and am pretty certain I am one of the lucky ones in long tail survival, at least for now. Yet every 6 months when I ask my oncologist whether I should keep my portacath, using hospital resources to have it flushed every few weeks because it’s not currently in use otherwise, she says yes. Oncologists themselves haven’t necessarily caught up with what today’s treatments can sometimes do for people. 

Enjoy the long middle, folks, and let’s hope it lasts. 

Hi

I just have my port flushed every 3 months. Imperial and MSK in New York both recommends 3 monthly flush. There have been many research on this. I try to stay away from the hospital as much as possible. 

Yes I have seen the research. I have stretched my hospital to 6 weeks but it was a bit of an effort!

My oncologist is not too bothered about the flushing at all. I just call up when I wanted it done.