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Hi again everyone!
It’s time to start the posts for another month. We are heading into fall – Where did the year go? I hope at least some of you had a good summer. I was fortunate enough to have a good 10 day vacation despite a crazy start to my summer. There are some challenges out there. Nothing for me bladder related; only a follow-up up eye exam. So let’s have the cheers and prayers for all clears for those that have stuff this month! All the best to y’all.
Post looked rather lonely so I will add to it.
Will have scope the latter part of September. Somewhat anxious but being optimistic as it can go either way. Never had a clear scope so to have one would be really awesome. Last scope in May showed tumor that we were sure was high grade and surgery confirmed this. Had follow-up scope 5 weeks later because it sure felt like there was a tumor in my bladder and yes, there was. Fortunately, it could be removed that day instead of another full fledged surgery. Then 6 weeks of BCG. Wow, what a way to spend summer but it sure could be worse! Now waiting for the date of the next scope. Hoping for a clear but will be happy if any tumors can be removed that day or at least no high grade tumors. Okay, I will stop rambling.
Good fortune to everyone in September and “cheers for clears” to everyone
Take care
Hello everyone, I’m new to this site. Having my bladder removed end of September. I’ve been doing lots of reading on the topic and thought I should start posting on this website. Jim
Hi Jim
Welcome to our discussion forum. We have several members who have experienced what you are about to go through. Any questions you may have just post and everyone will do their best to get you answers. London is blessed with several top bladder cancer specialists.
Wishing you all the best,
JackNothing for me in September…wishing everyone the very best.
Cheryl, BCG worked for me so here’s wishing the same for you…think positive.
Jim, glad you reached out to BCC. You will find this site amazing help. Wishing you the very best outcome…stay positive and in no time you will find yourself adjusting well to the new normal. Keep in touch…keep us in the loop…
Rick
Hi Cheryl:
Thanks for the post! LOL! Sometimes it takes a while when I do the monthly calendar but it seems to get replies after a bit.
You’ve definitely had a tough summer! I hope that the BCG will take hold and be successful. I had 21 BCG treatments over a 3 1/2 year period and am nearly 6 years cancer free. Sometimes it takes a while for the effects to kick in. Best wishes and let us know how you are. ((((HUGS))))
Hi Jim! I said hello on the other intro post and echo Rick. Best of luck and keep us posted! ((((HUGS))))) again.
Hi everyone, I’m on for a cysto on Sept. 10th and as most of you know, its’ always tense leading up to these and that’s where I am now. I haven’t had BCG now for about 6 months, but I’ve had TURBT 3 times and about 4 cystos. I did have a severe reaction to the last BCG treatments and I was quite badly burned, so I don’t know if they’re trying to put off further treatments because of that, or because of the shortage, or both. In any case, they just keep taking off the turmors as they reappear, so I think I’ll be asking some questions this time around. I’m also going to be receiving Radiation treatments for my lung cancer recurrence and I think the lung surgeon is waiting till after I have this cysto to make arrangements for those. I know I have a top notch urologist – Dr. Rendon so I’m in good hands.
To Jim, welcome to the forum and best of luck on your surgery at the end of Sept. Be sure to come back on here when you’re able to let us know how you get along. Good luck to everyone having stuff done this month.
Lorraine
Hello Lorraine
At my last cysto the urologist that did it ( I keep getting different urologists because they keep booking me with the next available one to ensure I get the cysto/surgeries as fast as possible) commented that she had one patient that had a violent reaction to BCG. So much that BCG was not an option. She just kept taking the tumors off and then all of a sudden that was it. No more tumors. He has been tumor free for 7 years.
Providing this info to help reduce your stress levels.
Take care
Hi Cheryl, thanks so much for that information about the person who had a bad reaction to BCG. I was concerned that nothing was being said or done about the tumors recurring and still no treatment for them. My stress levels are high, understandably so, between the lung and bladder cancers, that when I ask questions I often hear what I don’t want to hear because it always seems like bad news. I think I’m a little gun shy now. It is what it is and I have to deal with it. When I feel strong enough, I do ask questions because I want to stay on top of things, but I don’t want to become so pre-occupied with this disease that I forget to live in between the treatments, surgeries, etc. I made a promise to myself that during my “well” times, I was going to enjoy doing the things that I like and dealing with the disease when I have to. So far, that’s working for me.
Thanks again for that info. It does help to hear that this may work for me as well.
LorraineHello Lorraine
Have you considered a second opinion? This may help alleviate some of the stress. Are your two doctors communicating with each other to co-ordinate treatments?
Definitely ask questions. Write them down as you think of them and then take your list to your appointments. Take someone with you. That way if you don’t feel strong enough, that person can ask your questions for you. Also write down the answers so you don’t misinterpret them afterwards and send yourself into a tailspin. As we all know, stress will do that to you!
Take care
Hello All!
As much as I (usually) enjoy my birthday (Aug 30th), it is always a reminder that the summer is nearly over. September 1st tomorrow….what?! When did that happen?
It’s been quite some time that I’ve posted here. First, an unfortunate welcome to anyone new our BCC forum family!
This summer has been both good and not so good health wise for me. It started out great, until the middle of July. While on vacation, I developed a bulging disc, a.k.a a pinched sciatica. It has become debilitating; since then I have tried physiotherapy, acupuncture and now a chiropractor, nearly every day. My family doctor says this injury has been a result of my RC surgery back in March. Being in one position for 8 hours then bedridden for 3 weeks post surgery. For my next surgery I will take precautions pre and post surgery with an Osteopath.
This week and next I will be having all of my 6 month tests. Tomorrow I’m having a Cystoscopy as well as Urodynamics, the latter is predetermination test to see a specialist in London for an artificial sphincter implant. A CT on Thursday; then next week a full day at the Grand River Cancer Center for chest x-ray, blood work then to see my oncologist. Really hoping for good results.Well that is my update. Sending positive energy to anyone going through testing and/or procedures.
Peace, Love & Grooviness to all
Rhonda-Lee
Hello Rhonda-Lee
In regards to your bulged disc, has anyone checked your lumbar curve? Many years ago I had similar problem in my lower back. So bad it left me unable to walk and swelling all through my lower back. Almost landed in emergency surgery a few times but I talked my doctor out of it. Back then, back surgery meant 3 months flat on your back for recovery. That was not an option for me. Finally, I found a physiotherapist that had an extremely good reputation. He even agreed to see me after hours. He was in shock at the shape of my back. Said it was one of the worst he had ever seen. He worked on me for a long time but got me standing up and standing straight. Then I proceeded to pass out but he expected this to happen. From that day I was on the road to recovery and never had another relapse. He also educated me about the lumbar curve and prescribed exercises and a lumbar cushion for 24/7 use to help prevent a relapse. It worked. After about 8 months I was able to go without the cushion.
All physiotherapists are not created equal. Ask around to find another really good physiotherapist and try them out.
Even though the bulged disc isn’t life threatening, I still remember the kind of pain it can cause (I started going into shock one time from the pain but intervention prevented full blown shock) and what it does to a person.
On the brighter side, it is possible to recover or at least manage the problem (mine is with me for life) and put it behind you.
Take care
Hi Cheryl, thank you for sharing your experience. The pain is debilitating! If by the end of this week I find no reprieve from the Chiropractor, I will go back to physio. After much research and speaking to an Osteopathic therapist, I feel that this may be the route to take, for both my immediate need as well as after my next surgery. There are a few that actually work with people post-operatively to prevent this type of injury.
Good news also, I have received a cancellation appointment with a nerve specialist for this week. I would really like to get pain management so I can sleep for more than a few hours at a time.
I would really like to enjoy my trailer in Tobermory before the end of summer……
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