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December 28, 2022 at 1:39 pm #43974marysueParticipant
Hi All:
Just a curiosity question for those of us on the forum that are doing or have done BCG treatments – Did any of you experience depression?
I did the last two times and it is hitting again. I know that it could be a combination of the bad weather and the holiday season combined with feeling kind of yucky from BCG side effects but wowsers! Feeling blue is no fun. Suggestions to shake this funk are welcome. ((((HUGS))))
December 28, 2022 at 7:11 pm #43975coliver52ParticipantHi marysue, My feeling is that you would not be normal if you weren’t depressed. I found that BCG treatments left me feeling very vulnerable and fragile. The process itself is unpleasant and when we go through these treatments it is the most stark reminder of the fact that we are on this challenging journey. Even surrounded by people who care about us, I tend to feel very lonely because only I know how unpleasant these treatments are, and that contributes to my depression. One thing that has helped me is a book I bought from Amazon “You are not your Illness”. The author has MS and has watched her body slowly give up all functioning. She can’t feed herself and her mobility is now very limited. Reading her book about how she found the attitude and the strength to be positive had quite an impact on me (if you’re not religious you can skip over those parts though religion is not central to the book). I don’t know if reading others’ experiences would help you a bit, as there are several books out there by cancer survivors and others with illnesses who have found a way to lessen their depression. Many authors (and therapists) also suggest you sit with your grief, let yourself feel it and be within it. It’s no fun but they argue you get past the depression sooner. Mostly, I’d say just be kind with yourself during this sad period, and treat yourself with compassion. I gotta say I have been really down the last few days. I still have painful inflammation from the BCG and yesterday I got Covid! Good grief! Anyway, hang in there. Better days are ahead. 💖
January 9, 2023 at 10:38 am #43988lefmikeParticipantHello Marysue, I have to say BCG and derpession go hand in hand I believe… The question I guess might be how bad the depression is, does it necessitate some kind of intervention.. I’ve gone through the BCG BCG interferon and Gemcitabine and I think I was depressed the days of and the day after the treatments. But to go along with that there is the anxiety one might feel from having cancer to begin with, then the fear of it not responding to the treatments and I guess the feeling of vulnerability during those treatments. Personally I think I still have some of those feelings and I haven’t had any kind of treatments since my bladder removal, but I do notice, anxiety/depression and fear creep back a week or so before my CT/US scan and blood tests and they peak the day or two before the meeting with my Urologist for the results.
I was in a really dark place in July last summer , which was the 1st anniversary of my radical and my Urologist told me wife this is not normal…. Well we’re each different I guess, as soon as I got the all clear 2 tons were lifted off my chest… I don’t really know about other cancer treatments, but I firmly believe Bladder Cancer takes a lot out of you emotionally so being depressed would be absolutely par for the course…
I hope this helps a little bit and more, I hope and pray your treatments are again successful like the last time.
Mike
January 9, 2023 at 12:10 pm #43989marysueParticipantThanks Mike and Coliver52 for your kind words. It has been difficult getting my head around the fact that I’m dealing with all of this again after a 12 year hiatus. The recovery from my October TURBT was a real bumpy ride and my current set of BCG treatments has been challenging as well. I took a two week break over Christmas to rest my bladder and not be sick over the holidays. When I had #5 this past Friday, my bladder felt like it had a 5 alarm fire in it. The pain subsided over the weekend and I’m down to just feeling tender but there is no way that I’m doing any more BCG at full dose.
I called my uro’s office this AM and found out that the office is closed until next Monday. I will be sending a fax letter to his office stating my request for a lower dose. On top of all this, I too have developed a cough and cold. I don’t know if it is covid or not but I’m staying put at home for the next few days. My hubby is coughing up a storm. Neither of us feel too ill with this but I told him we should not be out in public and coughing, spreading our germs.
Mentally, I do feel better. I did have a meet up with family over the holidays and that helped a lot. I’ve also managed to get back to working on a couple of personal projects. As you mentioned taking care of ourselves and allowing ourselves to grieve and feel it is important. I have always believed that. Our lives have been changed forever and we have to come to a place of acceptance that things will be different going forward.
I will be okay but am monitoring myself and will seek assistance if needed.
Mike, you are correct in saying that bladder cancer takes a toll on us emotionally. Part of that being that being the high recurrence rate. I had a conversation about this with one of the BCG nurses a few weeks ago. She prattled on about how lucky bladder cancer patients are that this cancer is very treatable. I set her straight about the emotional and mental impact of how stressful it is going through surgeries and treatments and very often not knowing how successful it will be. I also mentioned the level of anxiety the majority of us endure when we have cystos/scans and other tests coming up as part of our surveillance. This type of cancer never leaves you. It’s like a shadow in the background. Many other types are a one and done where you have surgery and/or treatments of some type and that’s it. You are good to go. Not so much so with bladder cancer. I think I gave her something to think about.
Anyhow, it is onward and upward from here….. ((((HUGS))))) and thanks again for your kind words.
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