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Well, if diagnosis, chemo and surgery hadn’t already churned up the emotions, today’s appointment would have.
Day 18 post neo bladder surgery – we went in for the follow up apt with the surgeon, and were surprised that they took the Foley out! We were expecting to clamp for a couple weeks (according to the ET nurse). Tim was glad to be rid of it, given all the complications. That was the only good news though. 🙁
The pathology report didn’t come back as we hoped. He is PT3bN1 and has to go for more chemo. Soon. We just don’t know how that is possible, with him so weak and still recovering. His incisions are fine now and with the Foley gone, he is tube-free, but he is soooo skinny and fatigued! And now he will get no real sleep for months…void every 90 minutes for a week, then every 105 minutes next week, every 2 hours the week after…how can a person stay sane doing that?
Coming home hasn’t been easy…Tim constantly needs to void, and has had two accidents. I bought the entirely wrong size Depends. And forget 90 mins, he is up every 20 minutes going to the bathroom, because he feels like he is always leaking.
But – oh so worst of all – more chemo. I guess I had allowed myself to believe that they could get all the Transitional cell with the surgery , and that the chemo had killed off the small cell. They took 30 lymph nodes and 1 node has metastatic cancer in it. I wish I knew if that was good or not…if the stage/grade was hopeful or not…but I know, from losing my Dad to non hodgkins lymphoma, that once it is in the lymph nodes, that is a harbinger of very bad news.
2013…you have been a very long hard year, indeed. We really needed a “healthy” break…instead, it’s back to Juravinski.
Sorry for wailing, everyone. Just needed a place to do it.
Tim and Teresa:
When I got my Foley out my uro told me he wanted me soaking wet for two days. I was! Continence can take a few days or weeks to achieve and Depends with two pads stuck on either side of the front are a help in the meantime. Yes, the bathroom becomes a constant companion, but the length of time he can go without going will lengthen. It’s not fun, but it is do-able. Large pads on the bed keep it from needing changed. And an alarm can keep him drier once he gets to a point where he can actually keep from dribbling (sorry for the image).
The accidents may be embarrassing but don’t let them be. Accidents do happen! And at 2 years, 10 months post op they still happen on occasion to me. Get some instruction on the Kegel exercises as they will help.
More chemo is not a pleasant prospect at all (understatement of the day). And I suppose you will just have to accept the advice of the professionals who have seen this all many times before and know what they are doing. It’s why you have the best docs looking after you at a top cancer centre. You need to be able to place your confidence in them while at the same time not being shy about asking “why” and “are there other viable options”. Clearly you want the best chance at the best outcome so getting the best treatment is paramount.
You did say one lymph node. Don’t let worst case scenarios frighten you too much when at the moment that is not what you are facing. Try to keep focussed and centred. Sadly with cancer there are no guarantees, but then we all know that going in and have no choice in any case. Pray, trust, rely on your medical team and know that while it may not all be good, it is “all working together for good.” When it’s all you can do, it’s all you should do!No way I can top what Greg has told you. Just my full support and love . Hang on tight. This can be done.
Maybe get some of those drinks that give help with nutrition? Ensure..things like that. Vitamin juices like V8?
Main thing is to get well . Sometimes it seems to take so long. I have been free for 4 years now after a year of
treatments.He can do this.. just be his shoulder to lean on. Take care of yourself too,
Love, Jeanne
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