Homepage – Forum › Forums › Muscle Invasive Bladder Cancer › New and looking for hope and info › Reply To: New and looking for hope and info
Hi again and thank you for your replies and emails. I can tell this site and its members are going to be a great support and resource for us. My husband, the ‘Tim’ in TnT, is doing ok for now, some pain and discomfort but mostly it’s about dealing with the emotions, the unknown and the fear. We are just trying to get through the days till Wednesday, when we get more information. I am going to try to assemble a list of questions to ask the surgeon. I am told the appointment is only 15 mins, which is not a lot of time to get info on such life changing news and decisions. I will ask for the scans and path results, thanks for that advice. I have a question though about asking for a second opinion, which I have seen is something that is suggested: I think, based on what we have been told, that we are at a good hospital for this (all our city’s hospitals send this stuff to the same single hospital) and that we have good doctors – the first was the head of the department and the surgeon we are seeing is the second highest. I am inclined, therefore, to accept what they tell us and not seek another opinion, also because I worry that will signal we are difficult and result in less urgent, or considerate, service. Also, I don’t think we can stand the delay it may cause…knowing this is inside him makes Tim very restive and eager to ‘get at it’ rather than constantly waiting and thinking about it, plus, it gives it more time to grow and invade. But! what if getting a second opinion means he could somehow keep his bladder and we made a horrible mistake taking everything at face value?
We have other worries, of course. What if it has spread beyond the muscle wall into other organs? How will they know that unless they CT his whole body? What about pain management? Tim has been clean and sober in recovery for over 14 years – he counsels guys in recovery and has received many awards for his volunteerism and ‘giving back’ service (can you tell how proud I am of this guy? 🙂 I love him so much!) He is not too worried about it, but I am a bit. I suppose it goes without saying (tho it feels a bit ridiculous to post this) that we are both worried about the effect on intimacy – we are still kind of in the honeymoon stage! Tim is worried that having his prostate removed will effect him ‘chemically’ – ie put him in a depression, but I don’t think I have read that anywhere. We are both quite worried about finances and how much time off he will need. Tim was laid off from his job in 2011 and needed almost a year to find another position, depleting his EI (there are not a lot of maintenance supervisor jobs in our area, lots of competition from laid off steel workers). We were so grateful when he found a job last October at a great place, but he does not have enough sick time accrued to cover this and has no benefits or STD. He is worried they will give his job away, and I am worried about making rent! I work full time as well and can’t afford to be off much, how will he care for himself after surgery when I am away during the day? I am also worried about his hospital stay – how will will be able to stand being in there so long? He could barely handle 2 days for the procedure. I am reluctant to type this part, but it has to be said, Tim is a smoker…we know, we know. 🙁 It’s a moot point now..though he also worked in silk screening and paints all his life, but really, the cause is no longer the issue. He quit cold turkey upon diagnosis, lasted 48 hours and almost lost it (after 30 years of it, understandable). The doctor and pharmacist both said why are you doing that now?! Get through this first, then quit and with support and a program, so that is what we are doing and I have an appointment with a cessation specialist to figure it out – we are committed to it, with obviously the best motivation. That being said, I worry he will lose it in the hospital, going that long without smoking, and maybe do damage to his tubes or something. He is a big, strong, street-wise, inner teddy bear type, and I worry how different he will be after this process, losing so much weight and muscle and condition, will he still be able to look heroin addicts in the eye and tell them to “sit down, stop talking, start listening!” ? or not flinch when an addict in withdrawal pulls a knife on him? Will he still be the same person? Oh – I am just a bundle of worry, aren’t I? 🙂 I only meant to log on to say thanks, and look, I spewed paragraphs of paranoia and fear at you all – my apologies. I will get a grip soon, but actually it did feel therapeutic to name the fears. My family is loving and supportive and we have a wonderful church family too, standing with us…and if love has impact, there is tons of it…I promised before God to stand with him in sickness and health and I will do whatever he needs…just hoping I can keep my own weaknesses under control when he needs me to be strong. I could hardly stand seeing him in so much pain at the hospital during the bladder spasms. I lost my dad to non-hodgkins lymphoma when I was in my early 20s, I think echoes of watching dad suffer influence how I handle Tim’s situation.
Thanks for ‘listening’ — sorry it was so prolific!
Teresa