I was kind of calm about going for the blood work, EKG etc today, right up until she drew 8 vials of blood for various testing, and put a permanent waterproof wrist band on me saying absolutely not to be removed until after surgery or they won't do the surgery (like an admissions arm band but yellow with plastic cover over it). Looking at the info on it it's all about blood transfusion. In addition also learnt yesterday that I am no longer scheduled for day surgery but overnight. Can any of you highlight if you've gone through this why when most having TURBT are day surgery patients and don't seem to go through the “just in case transfusion needed". I've spoken to a couple of other bladder cancer TURBT patients here locally and neither of them had to go through this. Does it mean my tumour is a lot more complicated than most and there's a stronger chance I'll bleed profusely or any other light any one can share with me.
Have to admit I was starting to calm down a lot compared to the first few days after finding this tumour but after today and the nurse calling me with questions pre surgery, I'm starting to get real worked up again. Nurse was quite abrupt when I tried to ask any Questions on the phone.
The only time I had a few minutes with the Urologist was during the one initial cystoscope and no one else has told me much at all about what to expect except for you kind folks sharing that have walked this road before me. Is all this day surgery now overnight stay minimum and blood transfusion prep commonplace for this type of surgery or not?
I know you say Dr Google isn't your friend and I agree so much with that, but it's hard not to go down that route when you get very little info or any counselling. Also after visit with GP yesterday learning that 75% of the time that this cancer reoccurs hasn't helped me either on whether I should just leave well alone than have the TURBT and it spreads quicker. So many say their bladder tumours were like pretty coral, whereas mine looks like Medusa and all knarly/knotted like. Am I just a crazy woman or are all these swings in feelings normal going through all this?
I had my initial bladder surgery about 30 years ago. I was sent to emergency to be admitted asap. Had surgery the same day and spent 4 days in hospital. I was told after the fact that I came very close to losing my bladder. So I did lose a loonie sized chunk. I healed well but you end up having cystoscopies frequently. I have had many recurrences over the years, always nipped or burned off during cystoscopy. I was told that bladder cancer is considered a chronic cancer that has to be watched. Very treatable. I never had any chemo or radiation or any other type of treatment other than surgery. Have not had a recurrence in the last ten years but still have an annual cystoscopy.
Hi @DMT thank you for sharing your experience. It's so encouraging you've managed well 30 years from initial findings. THANK YOU so much.
I'm also surprised that when I asked the nurse on phone yesterday, and she had to check as wasn't sure, if they use Blue Light (supposed to highlight more cancerous cells than white light that can make some cancer cells appear normal), she came back saying “white light”.
Sorry guys, my minds just started working overtime again here tonight after today's and yesterday's call events. Thanks again to you all that so kindly share so very much here. I look forward in time to sharing with others coming behind me, especially on the emotional roller coaster we all find ourselves in.
@Boby1511 Thanks for sharing, really appreciate that. GP apparently wants me in on Friday morning to discuss results from yesterday's other tests I went for on bloodwork etc - normally he tells me results on the phone! I'm also beginning to lose my appetite for food and have discomfort/tenderness under my sternum = not sure if that's maybe anxiety related. This whole C thing is a real emotional rollercoaster and I envy those that are so positive in their journey's. So thankful for all the support and understanding here I've received.😁
In some ways I was lucky. I had emergency surgery. Sure I knew the was the plan, but when I went into hospital, I got transferred to another hospital in a couple days, then one day at the new hospital and then surgery. I slept right to surgery! I was very ill at the time thou. Was not even aware enough to get scared! I remember the surgeon came into my room as they arrived to wheel me to surgery, he said he was going take care of me. Became very real at that point. I told him I was scared. He held my hand. Very nice man. I don't even remember them putting me out. Maybe I passed out, I was pretty ill.
Phone call or in person with doc. My doc told me I had a recurrence over the phone. He was nice.
I think anxiety/stress can bring symptoms. Don't be too hard on yourself.
Trust your team. They are going to do the best they can for you. Success is also their goal.
I had all the complications in surgery and after. 2 heart attacks, death, resuscitations, ventilator, blood transfusions, blood clot, abscess… I made it to recovery, I'm on the other side.
Positivity: It takes time, time to accept, adjust, heal….
I lost my mind in the beginning (after recurrence)! For a few months! Drowning in depression and fear. I really should have taken some happy pills.
Takes time to get comfortable with yourself again.
Take it at the speed you need. You will find your way.