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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer Working my way through this cancer

  • This topic has 164 replies, 9 voices, and was last updated 2 years ago by Tana.
Viewing 15 posts - 1 through 15 (of 165 total)
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  • #37909
    Tana
    Participant

    Hi- I am new here first time and I may write a lot. I feel I have finally accepted I am in  this for the 3 years treatment schedule ( shock is finally wearing off?) And I’ll just have to work through it and take holidays when I can be it short trips. I have lots of questions regarding how picky do I get with eating – no sugar?- organic veg- go vegan – what supplements? How much exercise? Rest? Ok so this is what I have been experiencing:

    I had blood in my urine just for one day and immediately saw my doctor in May 2019. I got in for an ultrasound right away but results showed Clear. ( I thought ultrasound s would show if there was something?) However I saw blood in my urine again the following month but just for one day.  I had been extremely exhausted the whole year. I suspected but she thought no. She sent me to urologist thank goodness; only 2 months wait for consultation I was told was fast. A cystoscopy followed the next month- as he comes in the exam room he says good news- no cancer cells in urine- so Hopeful I feel- until I see the red Coral like tumour and two additional bumps on the screen. Yikes. So shocking to see that right then and there. I asked ; What is that?” . He says that is abnormal and has to come out. What is it? Cancer . I must have looked shocked and so he restated- Cancer suspect. He draws diagram on what he’ll look for in surgery. All in all fast with tests and  appointments. I have ta hi grade non- muscle invasive bladder cancer. The best of the hi grade so he says and not to worry!  I had a stent ( uncomfortable) to be taken out at  Second  Turbt 4 weeks later. Still needed stent for two weeks. Had no idea how long that stent was! Results : clear and no cancer cells found so am to start BCG for 6 weeks then the 3 weeks in 3 months for 3 years schedule. Waited ( I read now that there was a shortage?) 4 months to start BCG. Really had no idea what to expect through all of this. Wish I’d seen this Forum sooner .

    So for BCG I have been instructed it is only an hour now to hold in instead of two. Catheter went in easy and it was easier than I thought it would be thank goodness.  One nurse said 15 min turn yes ; another said no not necessary. And no bleach in toilet anymore. I get a paper with instructions and what to be aware of for side effects. It doesn’t say fatigue on it yet I’m so tired. I get chills that evening then am pretty much ok. I hope the BCG  works as when I was waiting for the treatments my 3 month cystoscopy came up and it wasn’t clear as I had hoped ( yes; disappointment set in and I think I began then to realize this is all really happening and I’m in for this 3 year schedule)!

    After Second week for BCG I felt like I was high on a drug after- -( nurse unfortunately had extreme trouble with catheter that she had to pull it in and out several times ). I ended up in emergency after experiencing side flank pain, fever, dry heaves and shaking 2 days after BCG.  A wicked ( the doctors words) infection in my bladder and a good thing I went in ( I actually was lucky to see a walk in doctor the next morning and she sent me by taxi to the emerg. Third , Fourth and fifth week – absolutely easy  going in -no pain at all- no side effects just chills in evening and tired. I find the tiredness does go away and I can get a couple of exercise days done before next treatment. I am learning to rest and not go, go, go.

    I seem to crave sugar though but worry if I’m feeding the cancer? I’ve read that cancer cells like sugar ?? I’ve cleaned up my diet – less meat- lots greens – nuts and seeds.

    Id love any feedback on what works- I guess it is individual! Sorry if I’ve rambled on. It feels nice to have support. It feels so good to talk! I am single and quit the stressful job I had.  I feel Hope reading the discussions from everyone on this forum! I feel better on hearing all the experiences.

    Thankyou

     

     

     

     

     

    #37911
    lefmike
    Participant

    Hi Tana

    You sound pretty much like a lot of us on here.  Aside from the bladder infection that is.  Yeah I’ve had the same thoughts as you, I’m in this for the next 3 years also, and I come in here to get information on  what I’m presently feeling or going through.  I just finished my first 3 BCG Maintenance and it was not as easy as the first 6 let me tell you,  but I did have a growth and issues with hanging tissue during  the first scope which was after my original 6 BCG and they had to do TURBT #3  but thankfully the stuff they took out was a result of the BCG and had no cancer cells.  I go in to see the doc in March for a routine quarterly scope and pray that it is totally clean this time around.  Let me tell you,  I can use some great news.  Presently I’m on a schedule of maintenance BCG every 6 months now instead of the 3, 6 12,18 etc…  I’m 3, 9, 15,  or something like that.  I get one less maintenance over the 3 year period.  You sound very upbeat, congratulations on that,  I still get my periods where I’m like, I forget I have this thing then wham it hits me…  But every pee is still a look down and pray no red.   Recently I’m been having ( what I think) may be bladder pain  but it’s only after I take long walks,  maybe after my scope in mid March and if its clean I’ll relax a bit more.  God bless you and keep up the good spirits,  I firmly believe they help us an awful lot.

    Ohh BTW, As far as craving sugar goes,  Lol, I’m a sweets slut so hard to compare before cancer to now  I love it regardless 🙂

     

     

    Mike

     

    #37912
    Tana
    Participant

    Thanks Mike , I totally appreciate the feedback! I wish you all the best for your clear scope! My prayers are with you!

    I know it’s weird – any twinge I get I wonder is it something I have to get another test for!

    And yes I’m a pretty positive person- always have been much to the annoyance of some! Oh well – it’s done good for me so why not! Thanks for the support!

    Cheers;

    Tana

    #37918
    Jack Moon
    Keymaster

    Love to read positive comments from someone with a positive attitude.

    Many patients can learn a lot from you Tana.

    Thanks for sharing,

    Jack

    #37924
    study3101
    Participant

    Hi All!

    I am Judy and I am my 2nd. go round of Bladder Cancer and my first go round of BCG treatments.  I am half way through them now.  Apart from the immense fatigue and a little nausea, I was doing fine up until this past weekend.  All of a sudden I am close to tears most of the time.  I am usually a very positive person, more concerned about others than myself, but am finding this very disheartening.  I am trying to continue work (I only work 4 days per week) but even this is beginning to be difficult.  I don’t seem able to concentrate on anything. Does anyone have a ‘kick in the pants’ idea to get me out of this melancoly.  I am already sick of it and it has only been two days.  Most of me says, go with the flow and it will pass, the other piece of me says ‘it’s fine’.  Doesn’t help at all that my genital area constantly feels as though I have a bladder infection  (yet again)! Does anyone have an idea of how to deal with this?? Thanks

     

    #37925
    Tana
    Participant

    Hi Judy;

    Sorry to hear you are feeling down.

    I’m only in the first phase of BCG – almost done the first 6 weeks and can only hope things stay calm.

    I would go see your doctor to check for bladder infection/ it’s better to find out: get peace of mind for that.

    I feel you are brave to continue work. That could add to fatigue. I also notice myself that my thinking/ concentration  isn’t as clear lately.

    My sister told me this is my time for self care now which is new to me as I like to be active and go go go and be for others also . I-now find I must pace myself because when I get too fatigued I find I feel negative and feel the old programs of feeling less than/ a failure / not good enough creep up.

    My doctor suggests counselling ( I am fortunate that they have a free counsellor at the clinic I go to in Vancouver.) I haven’t gone yet.

    Are you in Vancouver? There’s an Inspire Health place that you may be interested in checking out. It’s free and sounds great with exercise- yoga- nutrition- and even doctors there to consult with about anything. I want to go but haven’t because it’s another schedule and I feel too tired- just keeping up with all that’s been going on lately related to this cancer has set me back.

    I requested a one- on- one support person from B.C. Organization as well from the group leader support group who was amazingly helpful in all I asked and got me a lady “ friend” who has been through it all and She encourages me to text her anytime about anything! We even met for a walk. She so helped me when I got sick with the infection.

    Just knowing she has made it through and from the others saying hang in there –

    Yea I agree I try not to think about it too much. For me a good walk is my godsend.

    Nothing wrong with a good cry.

    You are right though- one moment at a time- let it flow- this too shall pass- Allow yourself to go slow ( my naturopath told me To ) Breathe! ( that’s what I keep reading that supposed to help get grounded and calm ) and/ or go for a walk ( or I also get to see my son who has a beautiful dog that I cuddle with!)

    I felt I couldn’t handle work anymore as too exhausted ( and I only worked three days a week so you are doing awesome! ) and I quit to tend to this stuff. Of course that’s a whole other ballgame to swing through.

    I tend to ramble on so I hope am making sense and helps somewhat!

    Hugs To you Judy;

     

    #37936
    Nightingale
    Keymaster

    Hello Judy,

    Every time I see or hear the name Judy, I think of Cary Grant calling out to his co-star Rita Hayworth in the movie (Only Angels have Wings) – “Judy, Judy, Judy!”  It’s an oldie and a goodie!

    So Judy, Judy, Judy, you’ve already taken the first step towards helping yourself by visiting with us at the discussion forums.  It’s always a good idea to talk it out with others who may have been through something similar.

    Tana, mentioned seeing a Councillor.  I don’t know where you are, but you might check the BCC website under the Events tab for face-to-face Bladder Cancer Support Groups.  I facilitate the one in Hamilton and I can tell you with confidence that the folks who attend leave in good spirits.  We had a female Patient with an external bag  joke about how she enjoys being able to stand and pee…freaks out other women in the ladies room!!  We all work hard to lift each other up.

    My other advice is to think about an activity that you truly enjoy and try and do it often.  I myself love cycling, jogging and swimming and I do a lot of it.  I also read a lot of mystery novels.  Lastly, I do lots of volunteering and I recently signed a contract to do part-time consulting for a Health Care Support Company.  Needless to say, I am so busy, I don’t have time to think about worrying.  I hope this helps.  Please let us know.

    My Best,

     

     

    #37940
    study3101
    Participant

    My gosh, thank you all so much for the support. Just out of interest, I live in Brampton.

    My first go round with cancer was 32 years ago was Breast cancer and I had a radical mastectomy. I was 39 years old. Then for 28 years no issues. Then in 2016 after almost 2 years of bladder infections the doctor thought it was time to delve further. I had my first TURBT and there was a large, non invasive mass that was completely removed and no BCG treatment was deemed necessary. This time around, no such luck.

    My biggest problem is that I have to work. No work, no food.  Well maybe not that bad but life will be difficult.  I manage a Seniors, Independent living apartment building and my employers have no one else to do my job, so no matter how difficult it is, I need to be there. I don’t have the energy, I still have pain that feels like an infection but is not, and I  simply don’t have a clue what to do. I have a doctor’s appt this week, but not till Friday.  ARGH! Tough day today! Thanks for listening!

    #37941
    marysue
    Participant

    Hi Everyone:

    Just want to share a little something what I learned when going through BCG treatments 2008-2012.

    1) If you are female it is possible that your genital area will get irritated from the BCG.  What worked for me was to pour cool water over my area when voiding out the BCG and for a day or so after treatment.  I also would wash myself with mild soap and water and rinse off well.  If the area was irritated I would use diaper cream to sooth the irritated area.  Lancaine and vaseline work too.

    2) Your urethra can get inflamed with the BCG just like the inside wall of the bladder.  It will feel like you have a bladder infection.  The only thing that worked for me with this and not always was to continue to drink lots of water and stay away from anything that contained caffeine including chocolate.

    3) For side effects I had the whole gamut.  Fatigue, brain fog, muscle and joint pain, headache and chills, low grade fever.  Symptoms do go away when treatments finish but I found that the fatigue and muscle/joint pain came and went for a few months.  You just have to give it time.

    4) Diet – I cleaned up my diet and tried to stay away from sweets and processed food.  I increased the amounts of veggies and fruits that I eat.  I try to avoid charred BBQ meats and processed meats like bacon or hotdogs.  There is some unsubstantiated research that increasing the consumption of cruciferous veggies like broccoli and cauliflower can help prevent BC.  I drink green tea, herbal tea, water, cranberry juice.  I sometimes have a glass of gingerale but no other soda.  I too crave sweets and try to alleviate that with a sweet fruit.  Raisins help too as does dark chocolate.  I allow myself a small portion of dark chocolate for a treat.

    5) I too, experienced a lot of depression while doing treatments – to help myself I would allow myself a treat each week after treatment and after a cysto check.  I’m down to annual cystos and still give myself a treat.  It can be a favourite food or something like a favourite new book.  I also gave myself permission to indulge in some jewelry.  One time when I was in the hospital for a BCG treatment and was feeling really really down, there was a guy selling handmade jewelry – necklaces and bracelets.  I bought a couple of bracelets which I still wear today.  They remind me of what I accomplished.  I also read positive thinking books like the Chicken Soup books.  I also spent more time doing favourite hobbies – arts and crafts and gardening in the summer.  All helped.  And if you are really tired from BCG – give yourself permission to take an extra nap and don’t feel guilty about it.

    Hope all this helps.  Best of luck to all going through treatments.  ((((HUGS))))

    #37942
    marysue
    Participant

    Hi Again:

    I saw upon rereading this post there was some query about supplements.  Research has shown and I was also advised by the BCG clinic staff to up my intake of Vitamin D.  Research has shown that many cancer patients are low in Vitamin D.  Research that Jack Moon posted a while back stated that Vitamin D makes BCG treatments more effective.  Many of us on the site take about 2000 IU of Vitamin a day.

    I take quite a few supplements.  The multivitamin that I take has a small dose of iron in it along with micro nutrients of extracts from green tea and cruciferous veggies.  I also take Omega 3, a good probiotic, cranberry for the bladder to help prevent a UTI, billberry for my eyes to slow the progression of cataracts, Vitamin C.  I switched to the multi with a small amount of iron because I was finding that without it my energy level really drops even though I’m past menopause.

    The one thing that I strongly recommend if you are wanting to start taking any vitamins and supplements check with your doctor, pharmacist or a natural health care practitioner to make sure that they are right for you.  This is extremely important if you are on any medications for any health conditions.  Some meds do conflict with certain supplements.  Hope this also helps.  ((((HUGS))))

    #37945
    study3101
    Participant

    MarySue

    Thank you so much! I can basically say DITTO to everything you have written, even down to taking some extra iron.  I was beginning to think that it was just me and that I was exaggerating everything in my mind.  I actually purchased some organic diaper cream yesterday and it helped with the burning.

    Thank you to all of you for your support.  Yesterday was a bad day.

    What I have now realised that as much as I enjoy my work, why should I care whether my employer has someone to come and do my work so I can take some time off. It’s not my problem.

    When I see my family doctor on Friday I will be discussing all this info with him.  He is very proactive and is able to offer suggestions.  I will be speaking to my employer and telling them that I will only be working Tuesday through Thursday for the next little while.

    Today is another day – thank you all

    Judy

    #37946
    Tana
    Participant

    Hi marysue;

    Thanks so much about the vitamins/ supplements/diet information. I don’t want to spend too much but want what can help give me an edge up on my health. I do take Vit D 1000 – Doc said that was enough ? but I read take more for cancer. I asked for the Vit D level check on blood test but was told I’d have to pay for it.  I take theracumin turmeric, Vit C , magnesium and a multi. I’d like to take moringa and chlorella. I do drink kombucha and eat organic sauerkraut. I’ve been a supplement junkie for years but now not working I need to budget! I’d love to eat all organic vegetables and fruits. $. Maybe I need more iron as I hardly eat red meat now.

    No extended medical coverage ( I’m Not complaining as am So grateful for our wonderful medical system and doctors and nurses and free BCG treatments as nurse said they are costly!) However; I’d like to check in with my naturopath again but is  90$ a pop. I also heard chiropractor is helpful for cancer?

    I read a lot and watch documentaries and videos on Cancer for diet/ food/ lifestyle and people who’ve regained their natural health. I like all the suggestions Thankyou.

    Of  sugar ; my level was borderline type 2 diabetes since 2010 – my naturopath said it’s more because of stress and my adrenals burning out that can raise the level. Amazingly enough it is now the lowest it’s been! I have eliminated the major stress of the unhealthy 14 year relationship and now the stressful job. I can’t help but make the connection that it was Stress and unhappiness and- being pissed off about things thus compromising my cells/ immunity  into bladder cancer. I’ve heard cancer doesn’t happen overnight- it’s a process that can start years before. Makes sense in my case.

    I question this because I am ( unfortunately) an overanalyzer thinker  to know things. My urologist started it by asking if I was a smoker and said bladder cancer is from smoking tobacco- or second hand smoke- chemicals- radiation and I’ve been clean. I don’t even drink alcohol ( very rarely) .  So he shakes his head and says you are just one of the unlucky ones. He wouldn’t buy the stress factor. Then I read in the BC brochure that that doesn’t matter how so much as “What now”. Very true.

    Anyway my last of the six instalments of BCG and marinating for an hour at the hospital is this Friday! Yahoo!

    Thanks for sharing you treat yourself – Mine is  to have an awesome dessert 🍰. 😆.

    love to all❤️Hugs- Tana

    #37947
    study3101
    Participant

    Tana, this is why I like these forums.  We all learn so much.  30 years ago when I had my mastectomy I went through the ‘why ‘ thing.  Questioned everything and overthought as well.  A friend of mine who was a trauma nurse at the time, suggested I take her seat at an oncology lecture where a particular Professor was talking. The best thing I ever did with regard to cancer.  This tall slim older man, who was at the time a Professor of Oncology at Kingston Hospital, got up and the first words out of his mouth were

    “Every new patient asks the same question, why me? what did I do wrong, and my answer is simple.  You didn’t do anything wrong, you pulled the handle on the machine and you got three lemons not three cherries”

    I don’t know what else made more sense at the time, it has made all the difference to my way of thinking about cancer.  It certainly helped me digest all the ‘stuff’ I was dealing with at the time.

    Hugs

    Judy

    #37948
    Tana
    Participant

    Hey Thanks Judy- I chuckled at that visual of the three lemons! Ha!

    Yes I needed to hear that- Not my fault- It is what it is!

    Cheers! Tana

    #38037
    coliver52
    Participant

    Tana,

    I haven’t much to add to the other people’s great comments. I must say I really admire your courage in pushing through BCG while working at the same time. You should win trooper of the year for that! Regarding sugar, sources vary. Most mainstream outlets say that the amount of sugar you take in is completely uncorrelated with your cancer health and prognosis. They do however assert that minimizing Vitamin E is probably a good idea. Regarding BCG symptoms I have read hugely varying effects depending on the person. I follow the Bladder Cancer Advocacy Network forum in the U.S. and I’m amazed at the individual variation. One person said it hardly affected him at all. Another said he spiked a fever of 103 the day after one of the treatments. Many suggest to wear Depends after the treatment in case you don’t quite make it to the toilet on time, since the inability to hold it in one moment longer is impossible for some people and they often don’t make it to the bathroom in time. Just a thought.

    All I can say is hang in there Tana. You’ve got this! And when the next set of treatments end, treat yourself to a double fudge sundae because you have earned it!!

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