Been a while since I’ve been here

[Az]

Hi.
It’s been quite a while since I’ve been on here. My last BCG treatment was back in April. I was supposed to undergo BCG treatments every 6 months for 3 years and only got through a year and a half of treatments.
I had spoken to my urologyst and the side effects were too much on my body. So, typically, I would’ve had a round of treatment during October, but didn’t.
Meanwhile, during the last 6 months, we bought a house, moved into it, and I switched my workplace… Same work different school and colleagues.
For the first time since I started this whole process, I’ve been really working on acting normal… Like none of this ever happened, but every now and again I have a reminder. Either I get the body aches, or like today, there was blood when I wiped… my next cystoscopy is scheduled for December 4. I know I shouldn’t worry or overthink it, but I guess I’m always going to be scared… I should be living in the now, but I find it hard at times.

I just wish I could act like this never happened and go on with my life.

[Jack Moon]

Hi Az

I think we all wished that bladder cancer did not ever happen. We are all living with a disease that has a high recurrence rate, and we must be checked every so often to check on it. I am coming on 9 years all clear, you would think that I should never worry about it, but from time to time the thought enters my head.
So you are not alone in your thoughts, you are just normal like many of us. Good luck with your next cysto.
All the best,
Jack

[marysue]

Hi Az:

I too, can relate. Even though I haven’t had any issues I got my annual cysto appointment letter in the mail yesterday and I sure had memories while reading it.

I have tucked the letter away until March- and yes, I do “forget” about my having bladder cancer even when helping others with it, but come March my mind will be in a different place even if it is just for a short while.

Best of luck with your upcoming cysto. Hopefully the blood is not from bladder cancer.

Just a suggestion – I don’t know if you can do this in Ontario, but I had blood on a couple of wipes last year and went to see my family doctor first. He did the office dip stick and the lab test to see if I had blood in my urine. I did this because at that time my cysto appointment was still 5 months away. It was negative for blood on both tests so he figured that the chance of a BC reoccurrence was unlikely. He did check me down below and determined that it was my urethra that was inflamed and irritated. Since I was also negative for a urinary tract infection, I just treated myself with anti-yeast and anti-inflammatory creams. I’ve been fine ever since. What I figured out later, but not from my doc, was that my urethra is a bit dry from menopause and the inflammation either came from riding my indoor bike – the seat is very hard or from the “fun” weekend I’d had with my hubby.

I did mention it to my uro when I got in for my cysto later and he checked my urethra as well as my bladder and everything was fine. I told him I would have called to have my appointment moved up if tests had revealed blood in my urine. He checked me down below and agreed with my family doctor’s assessment as my urethra is partially prolapsed and figured that due to the prolapse and maybe menopause it is susceptible to inflammation and irritation.

So maybe check in with the family doc for urine tests first? If there is blood in the urine then there is a possibility that the BC is back and if not maybe you’re like me – female parts are protesting? Take care and let us know how it goes. ((((HUGS))))

[Az]

Thanks both Jack and Marysue!

It really does help to hear that I’m normal in my paranoia. Sometimes just knowing that other people feel the same can really help. I guess my paranoia is increased right now because this month was the first “skipped” month of BCG treatments. SInce the side effects were so bad, my urologist and I decided together, that it was best to discontinue the treatments. I guess I’m scared that my decision to stop the treatments could’ve been me putting my life at risk. But, like my uro mentionned, I already got the benefits from the BCG treatments.

I guess one question I do have, is at what point will I stop being this paranoid? When will I be able to help others rather than being so wrapped up in my fears? Are those fears always going to be a part of who I am now?

[Jack Moon]

Az, in my case it was a matter of time. The first 2 years were very difficult, I think mainly due to having recurrences during the BCG treatments. Also there were no forums available at that time to speak to others. I joined BCAN in 2007 and found so many experiencing what I was, made many friends who are still friends today. Also as the all clears started to add up my fears began to subside. Actually you are helping others just by posting on this forum. So in summary my experience was just a matter of time, talking to other survivors, and getting good results. Hopefully the same happens in your case.
All the best,
Jack

[Az]

Thank you Jack for your response. Your words have really helped me.

[marysue]

Hi Az:

I concur with Jack. I was originally diagnosed in 2008, had a TURBT followed by 6 BCGs and then cruised along with checkups every 3 months and was clear until July 2010 when a single tumour was found at my cysto checkup. Naturally, I had to start all over again with another TURBT and this time it was followed by 15 BCGs from November 2010-January 2012. I’ve been clear ever since and am down to annual cysto checks each March.

I too, have found that time has helped. I initially had mixed feelings when my treatments finished in January 2012. I had a sense of “Yay! I finally done!” to “OMG, now what?” I felt free, yet cut adrift with no idea of what to expect next. I too, for the first while wondered with every body twinge whether that meant the cancer was back. I had to make a psychological switch from “battling” cancer via BCG to “surviving” on my own. Somehow we have to realize that the clinic is there to treat us but it is up to us to find the will and path to survive. I just had to get out of that mental space.

With NMIBC (non-muscle invasive bladder cancer) we are fortunate that the BCG treatments are actually done more as a preventative than like regular chemo which is an agent to hopefully clear your body of cancer. For me, once I understood this, I found it easier to cut ties with the clinic and focus on rebuilding my health in other ways. That meant doing things like eating better, getting more exercise, doing yoga, acupuncture, and working on getting my head into a better place. I did that by attending support programs at Wellspring Calgary. Talking to folks on this forum really helped as well because from the conversations I had with folks, I was able to get a better and more realistic perspective about my personal situation.

Now that being said, my world certainly isn’t perfect. As previously mentioned I did have a couple of false alarms and yes, just this week got my letter in the mail for my next cysto appointment, which gave me some heebie-jeebies. I find that I can put BC on the back burner for myself for most of the year, despite the fact that I’ve heavily involved with helping other bladder cancer patients. It is that letter that is the trigger for me – however, I do my best now to see that appointment as a chance to reconnect with my uro and the cysto exam (which will never make my list of favourite things to do), is confirmation of my healing when I see the pink wall of my bladder on the monitor.

I’m into my 7th year of being cancer free and plan on staying that way. I just don’t let my thoughts go down the “what if” path anymore. I used to do that with a lot of different things in my life and found that it caused me a lot of unnecessary stress and worry. Life is too short to waste energy on stuff like that. Hopefully for you, as Jack says, time will help. (((((HUGS))))

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