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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer How to get a good nights sleep?

Viewing 15 posts - 1 through 15 (of 17 total)
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  • #46064
    Kim
    Participant

    I’m wondering if the frequent urination ever goes away?  I’ve had a TURBT and 1 BCG treatment. I’m still having to empty my bladder too frequently, it seems. I’m up every two hours in the night. I’m worried the cancer isn’t all gone or is back. I have a second BCG tomorrow (will have one a week for 6 weeks).  In a couple weeks I get my second scope. Anyways, I’m so tired by early evening I feel I can’t do anything. I think it’s from no proper sleep for a long time. Did the frequent urination go away for others, after surgery?  I have NMIBC, high grade.

    #46069
    david_sheard
    Participant

    If I could get up only four times a night, I’d be elated.  I’ve had thirty BCG treatments over the past almost five years, and my getting up to pee has only gotten worse over that period of time.  I know this severe nocturia side-effect does not happen to everyone, but the urge to pee seems to be at least a temporary side-effect for many of us.   After a BCG treatment or a cystoscopy, I am up more than once an hour for at least three weeks and it gradually diminishes to five or six times a night.  I have a smartwatch that almost always shows me with zero or twenty minutes or less of deep sleep. I don’t think that is good for me. Daytime naps provide some relief but like you, Kim, I can’t do anything in the evening.

    On the bright side, although my bladder cancer has been an ongoing battle, at least it remains on the surface only.  I am also cancer free now but I have been there twice before.  I was scheduled for a three-peat BCC  maintenance session this month but my urologist agreed to cancel it and I see him in December for a cystoscopy to check things.

    I have spent days and probably weeks researching this topic online and have found no answers to this problem.  Neither my urologist nor my family doctor have any suggestions for me.  I wrote about this problem over a year ago on this website, but no one had any answers or suggestions.

    Hopefully, Kim, you will have only temporary problems in this area, and if anyone has suggestions on this topic, it would be much appreciated.

     

    Dave

     

    #46090
    Kim
    Participant

    Hi David
    Thank you so much for your reply. At least it tells me that frequent urination doesn’t mean the cancer is back. I hope that your situation gets better and I’m glad you are cancer free now. I hope it stays that way.
    Kim.

    #46082
    marysue
    Participant

    Hi Kim:

    Sorry to learn that you are dealing with getting up many times during the night.  It is not fun.  I’m currently up 1-2 times a night since my last BCG treatment in March. I was up more frequently than that post 3rd TURBT.  I’m on hiatus from further BCG treatments until at least late January due to remaining bladder inflammation.  I found that the VERITY brand of BCG that I received this past year, caused way more bladder inflammation that the TICE that I received in 2008 and 2010-12 respectively and increased the amount of nocturia I experienced.

    My diagnosis was the same as yours all 3 times –  NMIBC high grade.  I found that I did have a far more over active bladder this third time around due to having Epirubicin  instilled in my bladder post TURBT which caused massive inflammation.  That combined with the VERITY BCG really did a number on my bladder.  Even travelling in a car was difficult.  I’d go before I left the house and when I got to my destination as I got out of the car my bladder would spasm and I’d have to make a dash for the bathroom even if the trip was very short.  I think I know where all the bathrooms are in Southern Alberta.  Thankfully this is not as much an issue now that the bladder inflammation is mostly healed up.

    There can be many causes for getting up frequently during the night:

    1) Inflammation in the bladder post TURBT/BCG treatments which causes spasms, feelings of fullness and affects the bladder’s ability to allow it to fill to a fuller volume of urine.

    2) Psychological stress can play a role.  I know when I’m more worried ie. the day before a BCG treatment or a cysto exam, my bladder plays up on me and I will have a rough night.  So I wouldn’t be surprised if that may be part of it for you especially because you are concerned about whether the cancer is back or not.

    3) UTIs are a common complaint after TURBTs or BCG treatments.  If you suspect this might be a possibility get checked out before having any more treatments. UTIs can cause people to have more frequent urination especially at night. (Been there, done that)  If this turns out to be the case you will have to suspend BCG treatments until the infection clears.

    4) What you are drinking, how much you are drinking and when can affect night time output of urine.  I have always suggested avoiding caffeine when having a TURBT or BCG treatment. Caffeine can irritate the bladder more and is also a diuretic making you go more than normal.  If you drink a lot of water during the day which bladder cancer patients are supposed to do, I suggest (if you have not already tried this) reducing the amount of liquid you consume in the latter part of the day, particularly after dinner. Keep the largest consumption of liquids to the earlier part of your day.

    5) If you suffer from constipation that can affect your bladder function because a colon full of hard stool will put pressure on the bladder and again will impact the bladder’s ability to fill to normal levels.  BCG treatments caused me to become very constipated.  The clinic nurse recommended Senokot S with the stool softener.  It helped to some degree.  As a female, I have found that because I’m now older I tend to get UTIs and a yeast infection together. This often happens if I get constipated so keeping myself moving helps reduce all those problems.

    My urologist did prescribe short term Flomax for me post 3rd TURBT even though I’m female in the hopes of relaxing my bladder.  It helped some.  I also do regular acupuncture treatments and that has really helped reduce the inflammation and in turn lessen the night time pee issues.

    Other than that – time will hopefully help after your BCG treatments are finished.  But if you are really concerned, I do suggest having a conversation with your doctor about a prescription to reduce overactive bladder.  There are products available in health food stores for this problem as well, but I don’t know if they are safe to use while doing BCG.  I would strongly recommend doing some serious research before using any of those.

    Regardless of how many times you are up during the night BCG can cause fatigue in its own way so the combination of the two things is probably what is making you so very tired.  The fatigue from the BCG will lessen after the treatments are finished.  Hopefully your bladder will settle down as well and you can get more sleep.  It is frustrating, but I always suggest to people when doing BCG be prepared to slow down at least some and only do what absolutely needs to be done and let the rest go for a bit.

    Dave, if you posted on this subject about a year ago, I was MIA from the discussion forum for several weeks due to my third TURBT so I may have not responded to your post.

    I don’t know if any of these suggestions will be helpful for either of you but these are my thoughts at the moment. ((((HUGS))))

    #46084
    david_sheard
    Participant

    Hi:  Dave here.  Yes, I did post a year ago and boy can I ever relate to what you wrote.  It does get better over time but for me, it still is 4 to 6 times a night getting up to pee.  A couple of months ago I heard about double voiding and it helped a bit.   I am wondering now if I have some nerve damage.  Apparently, there are several sets of nerves that must work together to ensure the bladder empties properly.  Once a week or so my smartwatch tells me I actually got 40 minutes of deep sleep, and it does make such a difference.  So, I nap once a day, and at 76 years of age, maybe it is not so bad.  It is a lot worse for many others my age.

    #46088
    marysue
    Participant

    Hi Dave:

    I’m sure that nerve damage is possible.  As mentioned, I did have issues with an overactive bladder earlier.  I also realized that my bladder wasn’t emptying properly either.  I’d go pee and then about 15-30 minutes later need to go again.  Now I take more time on the toilet especially when I first get up in the morning, during the night or last thing at night.   I have found that I really need to focus and concentrate on contracting my bladder muscles in order for my bladder to empty properly.  I’m sure that this issue is from all the drama I had this past year.

    I’m 65 and don’t usually need a nap but some days I am tired by 8PM and will go to bed earlier or sleep in later than usual.  Now that I’m retired, I figure that I’ve earned my beauty sleep and rest after working for 40 years and getting up many a night to attend to one or more kids that were sick, had a nightmare etc.

    One thing I wanted to add about psychological stress – this past summer one of my sons was very very ill and spent 6 weeks in hospital.  At the time my bladder inflammation was on the mend and then when his situation hit, my bladder went nuts again and during the summer I was often up 2-3 times a night to pee.  The car spasm thing started up again as well.  Now that all his drama is behind me, I’m feeling much better and usually only get up once a night.  Most nights I make it through to about 4:30-5AM.

    So life and all its impacts can manifest in our bladders.

    #46092
    Kim
    Participant

    Hi Dave and Mary Sue

    Thank you for all the information. It is helpful. I drink only water or decaffeinated tea and one decaffeinated coffee (my treat) in a day. I cut out caffeine with my first scope and didn’t add it back in. I try to limit water later in day, and I’m really active – hiking, biking, etc. I don’t think I have a UTI, but then I never had them before either, that I knew about anyways. My only real symptom was having to pee a lot.
    Mary Sue – that is interesting about the different types of BCG. I don’t even know what type I got but it seems like my bladder feels a bit inflamed, off and on, always. I get another scope on Oct 26th, so will know what’s going on then. I hate not knowing. Mentally, I’m trying to stay positive and I’m staying very busy. I’ve got lots of family and friends, husband and kids, and two grandsons, so I’m lucky. Still, I have moments when I can’t stop crying. I can’t believe I got bladder cancer when I’ve always done everything healthy (because my mom died of colon and liver cancer at 50).   Anyways, any suggestions for how to handle the mental part of this?  I feel sorry for my husband because he’s usually the one here when I have a breakdown.

    Kim

    #46096
    Kim
    Participant

    It’s Kim again.
    I was also wondering what kind of bladder relaxant you take?  Over a year ago, before I knew I had cancer, my doctor just kept telling me I had an overactive bladder. She sent me home with a prescription. However, when I looked up the side effects it looks horrendous, so I never filled the prescription. It was expensive too, and it said you would get dependent on it and if you stopped taking it your symptoms would be worse.
    Thank you for all your sharing of information.
    I hope your bladder inflammation settles soon. Do you find there are certain foods you need to avoid?

    #46098
    Nightingale
    Keymaster

    Hi Kim,

    I am one of the moderators (Keymaster) in the forum, and also a 13 year survivor of low grade non-muscle invasive bladder cancer.  One of the liquids started to drink was green tea but not the one in the little baggies, but one made from loose leaf green tea.  I found it to be very soothing and helped me get over the urge.  I also started eating blueberries and strawberries mixed in with my cereal (oat meal) in the morning.

    Kim – you should consider joining a Support Group where you are.  They are super helpful in listening to your situation and providing experiential suggestions.  https://bladdercancercanada.org/en/get-support/ Scroll down until you find the city you live in and click on it.  If you don’t find the city you’re in, you are welcome to join mine which is based out of Hamilton.

    The other reason I’m chiming in here Kim, is because for some reason your last 3 replies ended up coming via email to the webmaster, who forwarded them to me so I could add them to this string of posts from you.  May I ask – are you clicking on the ‘reply’ button above the previous message, or just going to the bottom and filling in the empty field.  Also, are you doing this on a smart phone, tablet or laptop/computer?

    My Best,

    #46099
    marysue
    Participant

    Hi Kim:

    Dealing with the mental health aspects of a cancer diagnosis is probably one of the toughest things a person has to handle.  I too, had a rough time early on and then when I found out I had a recurrence last year after a 12 year hiatus I thought I was going to completely lose it.

    Trying to understand the why and how we could have gotten cancer is very very difficult.  Sometimes the answer is obvious ie. smoking or maybe a family history but other times it is a more random reason that may or may not be discovered.  I too, wondered for a very long time why I could have gotten bladder cancer when I was told the main cause was smoking and I’ve never smoked.  However, I grew up in a very smoky household.  I had 2 parents that were very heavy smokers and then my 2 brothers took up the habit so I lived in that environment for many years.  Many of my friends had parents that smoked so I went from one smoky house to another.  There is now some potential belief in the medical community that exposure to second hand smoke may play a role.  Chemical exposure is another possible cause.  I grew up in the Niagara Region of Southern Ontario which is one of the main fruit/produce producing areas of Canada.  During the 60’s and 70’s farmers were spraying all sorts of chemicals on the fruit trees including DDT.  I used to ride my bike through the orchards even when the trees were being sprayed.  No one told us it could be dangerous.  That and the fact that I picked fruit for several summers to earn pocket money.  I was touching the leaves and the fruit that had been sprayed so God only knows how much got into my body.  I can name several other potential factors too – childhood urinary tract issues, workplace exposure to second hand smoke and other chemicals, coming from a family of coal miners etc.  I too, have always lived a reasonably healthy lifestyle and yet still got cancer so from realizing all the above, I have just put it down to the fact that I drew the short straw and have learned to accept it as hard as it is.  I have a friend who was recently diagnosed with Parkinson’s and she has had a very hard time accepting it because like you she has always lived a healthy lifestyle and taken good care of herself.

    One thing that I did learn many years ago at an in-person Bladder Cancer Canada patient meeting here in Calgary was that some people have a slower body filtration system when it comes to eliminating toxins.  The unfortunate part is that there isn’t a diagnostic test at this time to find out if a person has that issue. At the time, (2011) the presenting urologist said that this area was still under research investigation but to me that made a lot of sense in my case.  I don’t have two fully functioning kidneys.  My left one is smaller than normal and was damaged during childhood surgeries and therefore does not have full function. So I have just figured that all of the above combined factors is what contributed to my getting bladder cancer.  Whether I’m right, I don’t know but it does make sense for me in my case.

    As for coping with the mental side of dealing with cancer one of the best things is to join a support group.  When I was first diagnosed in 2008, Bladder Cancer Canada wasn’t up and running yet so I had no one to connect to. I mistakenly thought I had a rare disease because of not being able to connect to anyone else with bladder cancer.  I eventually discovered Wellspring Calgary and attended some sessions there which did help but I really needed to talk to other women dealing with bladder cancer which I eventually did when joining bladder cancer Canada.

    As Nightingale suggested – check on the website for a city near you or join his group.  Your husband is also welcome to join in because the support groups are open for spouses, loved ones, friends and family members that are involved with a patient’s care and well being.  We also have a national online women’s only group that meets on the first Wednesday of the month at 7PM central time.  If that interests you please reach out to my co-facilitator Angela Pelletier at angelap@bladdercancercanada.org.  She will send you the Zoom link.  Our next meeting is November 1st.  The women’s group started last June and we’ve grown into a real sisterhood.

    The other way that I’ve coped over the years is to be kind to myself and ask for space from others when appropriate.  On days that I’ve been really upset and trust me, there have been many, I just try to lose myself in a good novel or get outside and go for a walk or even just sit on my back deck with a cup of my favourite herbal tea and watch the birds, squirrels etc.  Getting more into gardening really helped as well.  There is just something about digging in the dirt and planting, weeding, sorting, harvesting and then canning and freezing what I’ve grown that is very grounding. I can’t explain the how or why but it also gives me a sense of control when dealing with cancer stuff seems to be out of control.  While going through BCG and feeling tired, I just broke the larger tasks down into smaller more manageable ones and didn’t fret if a few weeds escaped my attention or the voles got my beets.

    I think the long and short of what I’m trying to say is – make you a priority and do some fun things that will take you out of your headspace for a while.  For me as mentioned it is losing myself in a good novel and gardening.

    The other thing I found with coping mentally, is to take it one day at a time and one step at a time.  That is easier said than done I know, but if you can focus on one thing at a time and try your best not to think too far ahead it does help some.  When I had my first recurrence back in 2010 and found out that I was going to have to do 15 BCGs instead of the 6 like before,  I felt so overwhelmed wondering how I would manage it and all the check ups that I would have in between treatment sets.  I had a lot of other stuff on my plate at the time too.  It was around this time that I connected with Bladder Cancer Canada and some sage soul gave me that advice of just focusing on things one at a time.

    I think these are my thoughts for the moment.  I hope it helps.  Also, don’t be afraid to ask questions.  No question is a dumb question.  Bladder cancer is a huge learning curve.  ((((HUGS))))

    #46114
    Nightingale
    Keymaster

    Hi Kim,

    Once again, Marysue has excellent suggestions!   A couple of little bits I should have added in my post was that I eat the blueberries and strawberries as they are nature’s antioxidants and help clear out toxins in our system.  The loose leaf green team (meaning unprocessed) has a wonderful calming experience for the bladder – at least mine reacted in a very positive way to it.

    My last comments regarding the mental aspect is this.  I contracted the disease when I was 50 yrs old.  I was and still am a runner, cyclist and long distance swimmer.  One would think, how is it possible for someone in that physical shape to contract the disease; but I did.  It was my running that help me catch mine very early.  I had this tremendous urge to pee after a 5 Km race and it was all blood.  I immediately contacted my family doctor, who immediately lined me up with a Urologist and the rest is history.  Nowadays, I focus on maintaining my physical health by continuing to do all the things I love doing.  I retired at the age of 56 and have been very active in volunteering and doing odd jobs I like.  It has helped me tremendously with my mental outlook.

    I hope this helps!

    P.s., Let me know if you’d like to try my Support Group.  We have wonderful folks joining and they are happy to share their experience.  BTW, sometimes Marysue joins my group as well.

    My best,

    #46924
    Tana
    Participant

    Hi Kim-
    Yes I had the pee urgency and no sleep for 5 months at year two of BCG treatments. I’d be up 5-7 times; I couldn’t go out anywhere ( learnt where all the pit stops were) .
    My naturopath gave me a potion for to help my bladder and the per urgency. But at same time I got Bio Energy treatments and holy moly- after the second treatment I was down to getting up only 2-3 x a night and after the 4th session I was down to 2x. I give credit to the bio energy healing.
    My naturopath also mentioned that it could be psychological to keep peeing constantly. That was an interesting thought. Eventually it went back to normal and what a relief to be able to go out freely again. It’s been a year now since last BCG and I’m thankfully I’m all good. I get up only once at night which I think is quite normal and I remember counting how many hours I last had to pee in daytime- I was so pleased when it was 4 hours!
    Hope yours improves.
    Cheers
    Tana

    #46925
    Tana
    Participant

    Hi Kim – Tana here: I got a prescription from my family doctor, too, for pee urgency and didn’t take it after I read the side effects!
    Also the mental part is hard- I felt “ashamed” I got cancer as I was always big into exercise and eating right. So it is very humbling. I accessed a free counsellor through Inspire Health BC.

    http://www.inspirehealth.ca

    and also talked to their doctor. And this forum helped tremendously! Joe helped me get a peer support from Bladder Cancer Canada and we have met for walks. Just nice to talk to someone for all my questions.

    #46959
    david_sheard
    Participant

    Dave here.  I haven’t posted for a few weeks now, but my frequent urination at night has gotten a little better.  I now get up every two hours at night usually, which is much better than one hour a night as I was for months and years.  I started taking Flomax (Tamsulosin) in mid-October and it started working in about two weeks.   I hoped it would get even better but it looks like  I am stuck at 4 times a night.  Occasionally I get three hours and sometimes only one hour but it is almost always four times in a 8 hour night.  I still need a late afternoon nap if I want to be clear-headed after supper.  I was cancer-free when I saw my urologist in June of last year and he did have me scheduled for three more maintenance BCG treatments in October.  I told him I wasn’t looking forward to them as the side effects (mainly getting up 8 to 10 times a night for weeks after the treatments) were a bit much for me, and he agreed to let me skip them and he would see me again on January 16th for a cystoscopy.  So wish me luck- I’ve been in remission twice before, but it returned both times.  This is now my 5th year fighting this non-invasive bladder cancer and I’ve had 30 BCG treatments during that time.  But you know, I just don’t let it bother me anymore, and I am so grateful to live in a country where I get excellent treatment by excellent medical professionals and I don’t pay a cent.  So far, so good!

    #46960
    Tana
    Participant

    Hi Dave-

    Glad to hear that  the Flomax helped you.
    Love your positive attitude to not let things bother you and of your gratitude. So very true; we are lucky to have good free medical and treatments!
    I am totally wishing you all the best for a CLEAR scope on January the 16th!
    Let us know how it goes.
    Cheers-
    Tana

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