Thorough - or lying by ommission?

OK, entirely unsurprisingly my tongue biopsy proved positive and on Thursday I was told "very small", TNM "zero" so far. "Best guess, surgery..." This, despite requested further tests (presumably re spreading), I found relatively encouraging. Yesterday a head/throat MRI - again, understandable and logical further check. I was also referred for a CT scan - booked for Monday. I suppose I should have asked "of where?" but I didn't. Have now received CT details through the post - "thorax, abdomen and pelvis". I can only assume that for reasons undisclosed to me there is something that strongly suggests that the sprerad is extensive and that tongue presumably a secondary not primary site. I really think I should have been told this on Thursday. 

I am not prepared to fight a losing battle on so many fronts! I need as much time as possible to put my affairs in order, buy my unwell wife a more suitable house and arrange my own death. I thought frankness and clarity supposed to be norm these days - clearly not. The man seems to have bottled out of imparting the harsh reality. How he could have thought that this in THIS patient's best interests beyond me. 

  • That's great news DJ, glad to hear it. Obviously if you could have had the triple 0 it would have been better, but save for that 1, 0, 0 is as good as it gets.  Glad to hear you're sounding more optimistic and I really hope your diagnosis remains as is.  Still, even if one of the classifications nudges up you're still looking good and it sounds like you're in good hands too :)

    Best wishes for the surgery and here's hoping your advance directive isn't even consulted!

    Take it easy, LJx

  • Thank you both. 

    Wine diet sounds attractive - except that I'm a 15 years, 1 month, 2 weeks and 3 days non-drinking alcoholic (and yes I always know exactly how long!). I understand the one day at a time philosphy only too well! Of course, should I be told "only a few months" then it'll be back to the two bottles of brandy/gin a day quite quickly.

    So, for now carry on with my  exercise regime of either 4 miles brisk walk or 10-15 miles cycling per day according to weather (to keep the COPD at bay) and to be fit enough for surgery. 

    Carry on.....

  • :D

    I like you're thinking.  Congrats on the sobriety that's incredibly impressive especially in today's society.  I'm with you though that if we were to get 'the news' then we should go out and do all the things that are allegedly bad for us but very enjoyable!

  • Having skimmed your own posts, Twin Two, all I can say is you are braver and 'arder than I - and to take time to Post kind words on others' Threads is nothing less than incredible. My very best wishes to you.

  • Thanks for saying that dj, but not at all.

    I'm just a stubborn b* :D  Mental illness took a good part of the first 30 years of my life and I'm enjoying it now whether my body wants me to or not!  I'm pragmatic about death, it's a part of life.  I'll fight this disease as hard as I can, but if it takes me then I'm happy that I can say I've lived.  There are still things I'd love to do and see, but I have an abundance of memories of amazing views, great laughs and interesting experiences.

    Our horrible minds get away with dragging us down too much, and having learned how to (for the most part) stop that, it saddens me when I see others not having learned those skills yet.

    Whatever happens to any of us, we owe ourselves to live each day we have and do stuff we enjoy.  It isn't selfish (as long as we're not hurting others obviously), doing stuff we enjoy often involves helping others anyway.

  • A sound philosophy methinks. The world has always depressed me, but I have never suffered from depression - I know the difference very well, my wife having been in the grip of chronic acute depression for significantly longer than the 48 years I have known her. 

    Makes your efforts on behalf of others even more courageous.

  • Surgery tomorrow.....can't recall being this - not to mince words - frightened since.....well, not a subject for this Forum!

    Seriously, had I researched GA survival stats earlier I would have refused even this first shot treatment. At my age and with my COPD, more likely to kill me in immediate AND short to medium terms than the cancer.Probably 1 in 5 tomorrow. Altho' the longer term stats are thin on the ground and difficult to interpret, not encouraging.

    But my daugher is keen that I give it a go and I promised her, so onward...

     

  • Well....survived the GA and the surgeon came to see me on his way into work yesterday morning (rather than leaving it to usual "doctors' Ward round" which I thought was nice!). Managed to laser excise what he had hoped to reach and found nothing which had not expected. Removed quite a lot, so will be plenty of marginal tissue to analyse. Really very sore - but then as another doctor put it.....cut away a lot of your tongue, it's going to hurt! Some surprise expressed that I can talk pretty well. My Surgeon's attitude remains one of "cautious optimism" that his keep it simple philosophy might do the trick.

    Have to confess that the GA and surgery rather shattered me - now got to finalise bringing my wife home for her final weeks/months.  

  • And tomorrow back to see Consultant - if daughter manages to get here to be with my wife in time for me to get to QMC. If not (and I did try to put my appointment back an hour or so given that same hospital was only able to discharge my wife on condition that I was at home to be carer but to no avail) , then I guess I will be considered as having discharged myself and I will no longer be a patient. Probably as well, as I cannot spare time for any treatment even if I were to need/accept.

    Least I've been back on solid food for 4 days, so a bit stronger than a week ago.

    At least I've not had time to worry about me. 

  • Looks like I cut this story short.

    3 years down the line, latest check up shows no recurrence nor any cause for concern. Laser excision alone did the trick.

    Let's hope hormone therapy (started 3 mths ago) and ERT (begins early July) for localised prostate cancer works even nearly as well!