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Hi Joey
Just a quick note. I did have a spinal done for my second Turbt. This was at the beginning of covid and they wanted to save the ventilators for possible covid patients. Anyway I found the experience quite different. I was in what they call a twilight state, you can hear and feel pressure but it is like a dream.
I found the overall recovery time easier to handle over the next few days, the only thing was my time waiting to get feeling back into my legs, it took much longer than expected, about 5 hours in recovery till I could walk.
Any more questions let me know.
Hope that helps. Have a smooth recovery. Ted.
Good Morning Jacqueline.
I understand your concern as I strongly support being an advocate for your own care. I am in about the same point in my BC journey as you. I’m 3 years since being declared all clear. ( Hi grade, aggressive, non muscle invasive.) Just had my last scope and am in the process of booking my next appointments for April. I asked my urologist about my CT for the spring and was told the spring test will be an ultrasound. I’m not due for a CT this year. You only get a CT every other year or so.
You could suggest an ultra sound as an option (my cancer was first detected with an ultra sound) or try asking your family Dr. for one.
I have found that except for my family Doctor getting the standard reports (that they may or may not look at) there is an obvious disconnect between Doctors, so your family Doctor may be willing to get you one anyway.
Anyway just my thoughts for the day.
I hope you stay healthy. Ted.
The anxiety kicks in every time.
marysue. First let me say how upset I am hearing about your recurrence after 12 years. That is one rodeo none of us wants to go to.
I am coming up on my second 6 month cystoscopy check up Oct 20. So far every thing has gone well, I feel great, my only outstanding issue is every time I stand up after sitting for a while I get the urgency to urinate. If that is my only issue then I can handle it, no problem.
As I mentioned I am full of anxiety as my checkup approaches, I know that it is not unusual to feel this way as we all know the risk of the cancer coming back. I do start to get moody and withdrawn, nerves stomach, have trouble sleeping etc. Again the waiting is the hardest part.
I just want to remind everyone to be your own advocate, Ask those questions, make those phone calls, check those dates, and show everyone that you are on top of what is happening and what is supposed to happen next. All though I have personally had great care throughout the last 3 years, you need to remember that the medical system is broken so stay on top of things.
Thanks Ted.
Good morning Monica.
Like you I tolerated my first (and only ) round of BCG very well. I understand that it is much harder to tolerate the BCG treatment the second and third time.
This is just my personal opinion, but I believe trying a 1/3 dose as suggested by your Doctor, could be an effective option for you. Personally I would give it a try if I was in your situation.
As far as I know, the amount of BCG installed into your bladder is not calculated to the individual, but is a one size fits all treatment, so a 1/3 dose may work just fine for you. Plus if you find that you still can’t tolerate the strong side affects you can stop again.
Anyway I think it is worth a try. Again just my opinion.
Good luck with your treatment. Ted.
Good morning everyone.
Let me be first up for this month.
I have my 4 month cystoscopy check up on Nov.18. I am a little concerned about it being postponed due to the nursing shortage. I haven’t heard anything yet, but I was bumped by one week last time. Under normal circumstances this is just a routine checkup, but my winter snow bird plans hang in the balance. If the cancer has come back I just might fly back and forth for treatment if I can pull it off. Didn’t get away the last 2 winters. 1st year Bladder Cancer treatments kept me home, 2nd year Covid. I am sure all will be fine, but as we are all aware, the not knowing is the hardest part. Thanks for listening. Ted.
Good morning Kim.
We have just gone through what you and hubby are going through. I was diagnosed November of 2019 and have recently had a clear scope, so yes I am in an optimistic mood. I also believe that Ontario is one of the best places for treatment. Except right now with this covid lockdown.
Now you two are younger than most of us on this site and I can understand the fear and anxiety that you are going through. I can assure you that we have all been there and yes the waiting is the hardest part.
It seems to me that your husbands has settled into what I think of as the new normal. As I am sure you know Bladder Cancer has a nasty habit of coming back and even the best case scenario will have him being checked every 3 to 4 months for a few years and less often after that when he is getting clear scopes.
When I first found out about the cancer I also freaked out and figured I was going to die. Then I did my research and realized that was not likely to happen, at least not any time soon. Also my Nurse wife told me this will not kill you. ( She said she is not that lucky.) She was kidding I think.
Again as you already know, most men don’t like to show there fear and anxiety, and above all do not want to upset the family by going on about there health problems. This is to be expected, but keep in mind he is thinking about it and has come to accept that he is in it for the long hall.
You are in this together and I can guarantee that your support means more to him that he could ever express. As you read more posts and gather more information you will find that one of the most important things for you both to do is to live your life as you have always done.
You will find both inspiring and scary stories on this site from all over Canada but mostly you will find relevant information.
I do hope that he can have a better result from his upcoming Turbt and he can get and remain cancer free. But like your hubby said. If I have to do this for the rest of my life, so be it. The new normal.
Stay safe Ted.
Good morning GV41. First of all it is quite normal to freak out when you first think that you may have Bladder cancer. There are other reasons that you could have blood in your urine as I am sure you have already investigated.
You said they found a trace so what ever is going on ( if there is anything going on ) then you have found it early, that is good.
You say your brother has Bladder Cancer, and I can see why you are concerned, you should look at what your life style differences are. You are in good health work out and seam to have a healthy life style. What are the differences, did your brother smoke, work in a environment with toxic chemicals etc.
Personally I smoked for 35 years, worked in some toxic environments and did not live a health life style when I was younger, so here I am.
The first thing that went through my head is that I am going to die soon, then I realized through educating myself that with todays treatments dying is a long way off, if at all.
I don’t know your brothers situation, but it sounds like he has had a rough go with the Bladder Cancer, 7 years later he is still fighting. That is his new normal.
So as easy as it is to get freaked, you should try to stay positive and educate yourself and hope the tests come back saying everything is normal.
Stay safe Ted.
Hi Tina.
I was trying to find out if I could get a shot early in Ontario, do to the Bladder cancer thing, but it turns out that they started to take people with health conditions at the same time my wife and I became eligible anyway. I have had no contact with my GP so I don’t know if they could have given me a shot earlier, but I doubt it.
My wife and I received the Moderna shot and we are not do for our second shot until July. We are starting to hear about Moderna supply problems and now are worried about getting our second shot in a timely manner.
It is liberating to get that first shot into you and after two weeks when it is at full strength you start to feel invincible. That is when you need to be careful. You can still get it and infect others, you just won’t get as sick. Like the flu. shot.
We got our shots early by two weeks as health care workers became eligible to get vaccinated. My wife is an RPN and works at a funeral home part time and I am a PSW and still have a few private clients that I see.
I am hoping that getting everyone vaccinated will eventually reduce the number of people that are sick in the Hospital in Ontario. The 3rd wave is far worse that the first 2 combined. It is defiantly affecting cancer treatment time lines and the entire Health care system is badly stressed right now in Ontario
I am not at all happy about the way Ontario has handled this pandemic right from the start, but that is a different topic for a different day.
Stay safe Ted.
Good morning Tina.
I understand keeping your bladder cancer private, as it can cause people to look at you and treat you differently.
I took a different approach and told all my family and friends what was going on with me. I did get some awkward moments but most everyone was supportive and interested in what was going on. It is interesting how most people know almost nothing about bladder cancer and its treatment. So I educate them.
Interestingly as time went by, and the treatments became routine everyone would just ask, how are you doing, when is your next checkup. I would say last check up is all clear, next one in 4 months, bringing an end to that topic.
I do have an active life style, ” as much as covid will allow”. My first operation had to be delayed as I was in Cuba when the Covid shutdown happened and my operation date was within my 2 week Quarantine time upon arriving back to Canada. We were supposed to spend this past winter in the Caribbean but we were stopped by Covid not Cancer. I live by a lake and spend as much time outdoors as possible.
This helps me maintain a positives outlook and most days I don’t even think about my Cancer. ( See I just did the, I have Cancer thing without even thinking.) I’m working on it. Educating yourself about the good, bad and ugly of Bladder cancer keeps everything in perspective for me.
Thanks for the comments. Stay safe Ted.
Thank you marysue for your your thoughts.
I hope that some day I will be to get to the point were I think like you. Myself being only 18 months out from my original diagnosis I am still afraid of a reoccurrence.
Like you I had to explain to what the follow up treatment, BCG was all about. Most thought that I would get Chemo. and loose my hair and get real sick.
I do find it interesting that I already think of the Cysto. as just another appointment, like going to the Dentist or getting a hair cut.
I am aware that even if I get a reoccurrence it will be caught early and treated right away, so as time goes by and I graduate to 6,12, 18 month Cystos. I can see myself saying I had bladder cancer and the Dr. is just checking.
Thank again for giving me a look into my future. Stay safe. Ted.
Check up. March 26
My 2nd 3 to 4 month Cystoscopy checkup. Hoping for the all clear.
If not then we start all over again. My new normal.
Stay safe Ted.
Hello akai.
In my case I had an ultrasound soon after blood in my urine was found, this report had my GP set up an appt. with a Urologist. I then had a CT with dye before I saw the Urologist. Except for the fact that both tests confirmed that I had a tumor and the size of the tumor before my Cystoscopy, they were of no other use. My Urologist said he does not trust the tests for a diagnosis and prefers to see for himself what is going on with a Cystoscopy. The rest of my treatment was the same as Joes.
I hope that helps. Ted.
Good morning Nightingale.
I hope your Dr. is correct and we can get our immunizations that soon. I am by nature a very skeptical person and believe May might be a little optimistic although we can hope and pray that the immunization process speeds up and we can get our shots sooner rather than later.
I did some research and could not find anything about Cancer patients, only chronic health issues. I do not know if Cancer is considered a chronic condition, It could be considered yes or no and may depend on your cancer type, treatments, immune system, and general health. It is kind of a gray area that has not been addressed by the powers that be, as far as I can tell.
If any one else has found info. on this please let us all know.
Thank you all and stay safe. Ted.
Hi all.
Thanks for all the info. on why I might be loosing my hair. marysue and coliver52 you must be smart and stuff I had to give up googling all those fancy words. It made by brain hurt; but thanks for the info. Anyway I think figured it out. It is not the BCG at all. I never really thought it was.
I found scissors on my wife’s dresser along with tweezers, and although she will not confess, I strongly believe she is pulling my hair out at night while I am sleeping. Just a few hairs every night so I will not notice. I think this strange behavior is a thought pattern left over from her pulling out a chest hair every time we had sex. ( by the way I have lots of chest hair left), it does not seem to be thinning in the same way. Any way I plan to catch her in the act one night soon so I can confront her about her behavior.
Thank you all for your concern and everyone stay safe and have a Merry Christmas.
Tongue in cheek Ted.
Hi Tina.
Thanks for your interest. The Dr. did not mention anything about getting any BCG treatments this time. I was actually expecting more BCG. When I got my BCG this past summer I was not told about the new protocols and did hold for 2 hours and do the turns. It took me almost an hour to get home anyway. I live 1 1/2 hours north of Toronto. I am just starting to get my test dates coming in. Now if I could fix my sciatica life would be great.
Thanks and I hope everyone has a happy and healthy holiday season. Stay safe. Ted.
