Ta da - Ladies and Gentlemen, the results are in!

2 minute read time.
I have always known that my bloke was one in a million, but it seems that was a little underestimation! Turns out, given today's results that he is one in a billion. Let me explain ...... After sitting in the waiting room in the hospital with interview stomach of what seemed like an eternity we were called through. We thought we were seeing the specialist uro-oncology nurse from the department so we were somewhat surprised to see both her and the consultant in the room. (Gulp!) They tell us they have the histology results back and that it is, as they expected, an aggressive invasive cancer. Then they tell us that is is rare ..... not just rare, but ridiculously rare. There have only been 40 cases ever reported in the world of clear cell adenocarcinoma of the bladder, and only six of them have been in men. What they do know is that it is unresponsive to chemotherapy, so that is not an option, so chopping it, A's bladder and his prostate out is his best course of action. We then discuss the vagaries of the surgery - from hours in theatre to how many tubes A will have in him when he comes out etc I think the Consultant thinks it is funny I have bought my notebook in with over 30 questions and am scribbling them down frantically as he answers, a bit like a Urology version of Mastermind! And then at the end we get to the key question, "So what's the prognosis?" And he said THEY DON"T KNOW. No, really. Not a clue as to what the future holds with this as there are just too few people ever to have suffered from it and only six of them men, two of whom died from other causes (thrombosis and renal failure) before the outcome became apparent. This is the Universe throwing me a curve ball. How can I worry about the worst case scenario if I have no idea what it is?!?! Very funny when you think about it. I think it has proved quite liberating for us both. The idea that the future and what it holds is totally unwritten ......... we will fight and the future will be as it may. We have a smidge under 4 weeks til surgery. D Day is 13th August (luckily not a Friday) and in the meantime we have to throw as much protein at A as we can muster ..... and he needs to get fitter. This puts him in tip top shape for the surgery. We got lucky with the date too, we are already going to the theatre on the Friday night the weekend before and a classical outdoor proms & fireworks on the Saturday. We have decided the icing on the cake for the last pre-op weekend will be to move our engagement party forward and have that on the Sunday - so three big days of celebrating (bring it on!) Last night we went to see Bruno at the cinema. Honestly I laughed so much my sides hurt but was also so shocked by much of it that I sat with my hand over my face for at least half. Not something to watch if you have delicate sensibilities that's for sure, but A and I giggled like kids all the way through. Fabulous! ;-) Hope the rest of you all having a good weekend, despite the rain. T x
Anonymous
  • FormerMember
    FormerMember

    Hi T - Enjoying your blogs, but sorry to hear about A. I know what it's like to have a rare form of cancer - it is pretty isolating. But preparing for surgery by getting as fit as poss, eating really good foods etc, it's good because it enables you to focus on something, makes you determined to start from a strong position. I wish you both all the best - let me know how things go. jeanie x

  • FormerMember
    FormerMember

    Good luck to you both, yep I too know what a rare cancer means.  My oncoman at the Royal Marsden had only see 6 previous cases on the nasal septum in his years there at the Marsden.  I didn't have time to get fit, as I was whipped in that week for surgery, then chemo and rads, they threw the kitchen sink at it.  Again, good luck to you both.  Were off to see Bruno Tuesday, I luv a good larf.

  • FormerMember
    FormerMember

    Good luck to you both, yep I too know what a rare cancer means.  My oncoman at the Royal Marsden had only see 6 previous cases on the nasal septum in his years there at the Marsden.  I didn't have time to get fit, as I was whipped in that week for surgery, then chemo and rads, they threw the kitchen sink at it.  Again, good luck to you both.  Were off to see Bruno Tuesday, I luv a good larf.

  • FormerMember
    FormerMember

    Hi T, hope you and A have a great weekend too.  Pass on my best wishes for the forthcoming surgery will you.  Hope everything goes well.  Christine xx

  • FormerMember
    FormerMember

    Well, if the weather is warm on a Sunday afternoon you can always come and have a swim!!

    He would have to be one in a billion cos you have never been happier!  Looking forward to partying and you know where I am if there is anything you need or if I can do anything

    Much love to you both always xxxxxx