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cheryl9
ParticipantHello Fraser
I have waited as long as five weeks for the pathology report. Even my uro was hassling the pathologist. Ends up there was so much tissue sample it was just taking that long to process. That time I had large 3 cm tumor and “numerous superficial tumors”. It is hard to be patient, but I would prefer the pathologist do his job right and if it takes five weeks, so be it. Yes, the wait was not nice but I decided no amount of stressing would speed up the process so why even go there.
If you want results faster, tell your uro to skip the appointment to get the results. Just phone instead. That is what I do. After four years, I have yet to set foot in my uro’s office. I want the results, don’t care the environment they are delivered in. One time even got the results while driving down the highway. Anyway, if you don’t care for protocol, skip the appointment and take the phone call method instead.
Take care
Cheryl
April 24, 2018 at 10:25 am in reply to: TURB at the Ottawa General Hospital- has anyone had any experiences there #31335cheryl9
ParticipantHello Johnny
Removing tumors in bladder is done in a hospital. Lots and lots of us have had that done. While it can be earth shattering to us, the patient, it is a regular procedure for the medical people. I can’t speak for the process in Ottawa but can speak to my experiences. I have had three such surgeries. Where I am from these are done as day surgeries (see how routine these are for the medical people). Can be done under anaesthetic or with epideral so you are awake through it all. I always go under as I have no interest in hearing the play by play of the surgery. Once out of recovery, the staff work on getting me up, fed and then released. I have gone home with a catheter and instructions for removing (yes, remove my own catheter) and one surgery there was no catheter (much better option and quicker recovery).
Most important is to not stress about this. I know, easy to say. You are having a very routine surgery. It is not heart surgery. Trust me, doctors even stress over heart surgery. I have lots of family members that are in the medical field and one that is licensed to do heart surgery. He never sleeps the night before and spends the night going over and over the procedure.
I am now two years nine months and 18 days cancer free. After three surgeries, two fulgurations and 42+ (have lost count) BCG treatments, I am a little experienced.
My best advice: take a deep breath or two or three or however many it takes; hug those you love; cry as needed; spend time with those you care about; and find something to laugh about. Then you will start to heal.
In the meantime, stop swinging from the rafters. That only gets you bumps, bruises and a lot of splinters in your hands.
Take care
Cheryl
cheryl9
ParticipantHello Fraser
I too was sent home with a catheter. Here in Saskatchewan TURBT is considered a day surgery. Yes, that initial voiding after taking the catheter out just about made me pass out. Better prepared the next time and after two more voids was okay.
Do not underestimate the power of fluids. While still fighting bladder cancer, if I had to void and not much came out, it was painful. Full bladder made voiding a breeze.
Also remember: even though it is in your bladder, a scab still forms and that scab eventually comes out. Takes 10-14 days and will usually include blood and what looks like clots. It is the scab. First time it happened to me I hit panic mode. My Uro politely explained to me what it was.
Hope this helps.
Take care
Cheryl
cheryl9
ParticipantAll “hooray spring is coming” are now officially on hold. On the edge of a storm/blizzard. Some places to get a foot of snow but hopefully not us. Road closures happening. With the wind will be hard to tell just how much snow we will get. Will set spring back a bit. As always, though, this too will pass.
Patience, patience. Now I need to find some.
Take care out there
Cheryl
cheryl9
ParticipantSo glad to hear someone somewhere is moving forward with spring. Had at least 2 inches of fresh snow yesterday. Everything all white again. Warm enough last week for the snow to shrink. My five foot snow piles are now probably 4’10”. Add on the 2 inches of fresh snow and we are pretty much back to where we started.
Average high here is now 0C consistently so that is a good thing. Actual temps have been hanging quite close to that.
As far as birds go, ravens, sparrows that stay for the winter and that is about it for birds. Had six deer go through the back yard last week and a coyote is being a pain in the butt getting way to close to house. That is about it for wildlife. Unless we want to include the weekend revellers.
Yard work list and landscaping projects are all set to go for summer. Started buying garden seed last week. Fuel bought for yard equipment (three tillers of various sizes, riding tiller, riding mower times 3, gas weed wacker, chainsaw, power trimmer, three quads. Gee, get all these going and sounds like we are living in town instead of an acreage.
Yes, with all the snow we still have, pushing spring but this coming week spring does officially arrive. Now we need the real life spring to show up.
Patience, patience
Take care
Cheryl
cheryl9
ParticipantHello Wapta
I was 52 at diagnosis. Could of had tumor as long as ten years. Yes, slow growing tumor but it was to a size where it was sloughing off high grade cells. A number of those lodged around ureter and was in process of sending me to the septic world the day of surgery. Talk about a just in time surgery!
Now four years later I am two years seven month and six days cancer free.
I also had no risk factors until new research in 2015 found a genetic link. If a parent had bladder cancer your risk goes up 38%. I am #6 in family to have bladder cancer. Grandfather, two cousins and two great aunts. None have died from bladder cancer and only one lost his bladder as a precaution. I am sure he did it from a well informed place and not fear. He is an anesthetist.
Yes, the emotions one goes through is brutal. This also happens with each checkup. After the second round of surgery for me and no clear checkups for a year, I decided the emotional drain of energy and time was no longer worth it. It was way too brutal on me. So I changed my perspective. Each checkup is an opportunity to stop the disease in its tracks. Would rather have the cancer out of me than let it stay in my having its free for all party at my expense. Life became so much better once I let go of the fear and put myself in control instead of being the victim.
Yes, easy to say but not necessarily easy to do from the start. If nothing else: take a deep breath or two or three or four or however many it takes; cry; hug those you love; cry some more if needed; spend time with those that are important with you; find something to laugh about and then you will start to heal. If you spend time swinging from the rafters, stop. It takes too much time and energy to stay up there and only results in bumps, bruises and splinters in your hands. Come back down to earth, it is much nicer on terra forma.
Take care
Cheryl
cheryl9
ParticipantHello again everyone
I will get things started.
All the snow we had last week looks wonderful. All white and how the sun sparkles off the snow is gorgeous. Which would be just wonderful if it wasn’t almost the middle of March. Here in the prairies, today is the first official day that our average high is zero. We are finally looking at some time with those average temps so that is good. Yesterday it actually smelled like spring outside.
My house has a wonderful south exposure deck that acts like a heat trap. Yesterday in the sun it reached 16C on the deck. First day of the year able to be on the deck without a coat. Didn’t dare go off the deck without a coat, though. Instant -1C. The west side of the house is also a heat trap. In the sun it was showing 20C on the west side. Snow was melting ferociously there.
Took a rosemary plant inside last fall. Challenge was to keep it alive through winter. Plant is still alive! Amazed at myself. Now watch, it will die in the next couple weeks. Whoops, supposed to stay positive. I am positive it will die in the next couple weeks!
Today plan to do my list of spring/summer outside projects. That is a sure indicator of spring fever!
Looking at the leftover pile of wood brought to the house for the fireplace. Ugh, now have to haul it all back to the storage shed. Oh well, a little extra exercise (again, staying positive).
Join me in the conversation. No matter how bad things get, we all need a little bit of the lighter side of life and remember, having fun and laughing is allowed. That is how we start to heal.
Take care!
Cheryl
cheryl9
ParticipantHello Marysue
I have a wonderful south facing deck that has a roof over it. As long as there is sunshine the deck can be 20C higher than the official temperature. Any time the deck shows around 0C and there is sunlight without the wind getting at the deck, I will spend some time out there with a cup of tea (green) a dog and sometimes a cat. There are days I am so desperate for sunshine I will go out there wrapped in my winter coat, hood, scarf, gloves and a blanket if I have to. Amazing how the radiant heat from the sun heals the soul.
I also keep myself busy with projects through winter. November/December consumed with Christmas activities. Ukrainian Christmas prep to January 7. Then deflating the house from Christmas stuff takes another week. After that the last four years I have done 3 weeks of BCG. Have to be really patient with how that slows life down and then recovering afterwards from the exhaustion.By then looking at mid to late February. Unfortunately, in my neck of the woods the snow can be here to end of April and that is the challenge.
Snow shoveling can take a lot of time also. Living on an acreage, between the driveways that the tractor can’t get to, the sidewalks and decks, shoveling can easily take 2-3 hours depending on the amount of snow. That pretty much does me in for a day or two.
When winter starts to get to me, I start going through my gardening books and planning the flower beds, pots and vegetable garden. Always looking for new projects each year. Currently have all this planned out for this year.
Then starts the early spring/late fall trip planning. Well on the way with that one.
This winter is starting to drag, though. So am going to renovate one of the bathrooms.
Finding ways to stay occupied is so important. Touch of insanity always helps, too as yes, I am starting to go loopy. But my husband says that is nothing unusual. Hmmm.
Take care out there
Cheryl
February 13, 2018 at 4:24 pm in reply to: BCG Treatment and Maintenance Schedule / What have you had? #26939cheryl9
ParticipantHello
Just finished treatment #42 so I self proclaim to be a bit of an expert about BCG treatments. From my understanding, if there is high grade or in situ, you are considered high risk. Protocol is the 36 months of treatments starting with 6 weeks then 3 weeks every 3 months then 3 weeks every six months to finish out the 36 months. I had a high risk recurrence one year into treatments (cancer in situ) so I got to start all over again. That was four years ago.
Have one more 3 week round to go and then I am “free” or finished if you are less dramatic about things. So looking forward to being done.
For those wondering, the first year of treatments were a bit tough then once I was fully cancer free, the treatments became quite the thing to breeze through (have even been known to go picking raspberries on treatment day). In the first year had 3 surgeries and 2 fulgurations (tumors present during checkup but could be removed at that time). Numerous tumors with one 3 cms with first surgery, second surgery was four tumors, third surgery was 2 tumors but one was missed. 5 1/2 weeks later the missed one was removed and been clear ever since.
In the end, be patient with the treatments. Great approach is to consider BCG to be your new best friend. Let it do its job and don’t resist or regret it. BCG has been around over 40 years. My grandfather was probably one of the first to be treated with BCG. He lived to a ripe old age and died of natural causes. I am #6 in the family to have bladder cancer. None of us have died of bladder cancer and only one had their bladder removed. Must admit, I kind of like those odds. If you drink, raise your glass and toast BCG. Then quit drinking.
Take care
Cheryl
cheryl9
ParticipantHello
A health professional friend told me that the current teaching for doctors is that if there is visible blood in the urine assume cancer until proven otherwise. This is how I had a medical student be the first to suspect I had bladder cancer. Even after the doctor he was working under went up one side of him and down the other, the student stuck to his guns. So glad he did.
I just wish the medical field would take bladder cancer and the risk of bladder cancer more seriously.
Take care
Cheryl
cheryl9
ParticipantHello
Still getting used to the new layout. Really miss the date of last posting showing on the summary screen. Sometimes I am away for several days and the list of recent items on the right hand side doesn’t go back far enough. Find I now have to go through each topic area to find the postings to catch up on.
Cheryl
cheryl9
ParticipantHello M1234
Been there. Done that. No fun. It amazes me how us humans have such an amazing ability to stress especially about the unknown.
Check out the info on this site. Really good stuff. Stay away from other internet sites. They will scare the daylights out of you and the information they have is not particularly the best in my opinion. In my opinion, they have you without a bladder next month and dead the month after that. No one needs that kind of garbage.
Chemo wash sounds scary but it really isn’t. As long as the protocols are followed the risk is minimal. There are also other options available but until the biopsy results are back and the surgery is done the best option won’t be known until then.
I was diagnosed May 1, 2014. Three surgeries, two fulgurations and 30 plus BCG treatments later I am cancer free 2 1/2 years and 10 days. The worst part? The unknown at the beginning between the ultrasound that said”indications are malignant” and the confirmed cancer diagnosis. Once I knew for sure it was cancer then a plan could be put in place. No more free for all partying for those cancer cells. I was now on the attack!
Don’t spend your time trying to figure out what caused the cancer or why you have it. That part can’t be changed and spending your time and energy there means you have no time or energy for your future and yes you have a future.
If the doctor thinks the cancer is low grade then trust him. He has way more experience with bladder cancer than you or your husband do. Even high grade is not a death sentence. Mine was “mostly low grade” from the start then advanced to high grade with my last recurrence. My urologist said “yes, this is a setback but not to worry.” He was right. If there is anything I have learnt on this journey is not to waste time and energy worrying. It just takes too much out of a person and leaves one way too worn out. Worn out = no energy to fight the cancer.
My best advice: take a deep breath or two or three or four or however many it takes; hug one another; cry; spend time with those you love; cry again and as needed; then find something to laugh about. Then you will start to heal.
Also stop spending so much time swinging from the rafters. All you will get up there are bumps, bruises and splinters in your hands. Time on terra firma is so much better and easier on a person.
Take care
Cherylcheryl9
ParticipantHello Joey
I always forget about this and I am under the impression that a lot of medical people do too and don’t tell patients. A few weeks after a TURB you may experience bleeding. This is probably the scabbing coming out. As my uro explained, the removal site scabs over just like any other cut but since air doesn’t get at it it the scab doesn’t harden. Eventually, the scab comes off and has to come out!
My first experience with this freaked me out. Had several removal sites so there was a lot of scabs thus a lot of blood. After that I found it reassuring with the next two TURBs to see that blood. Extra assurance that things were healing properly.
Take care
Cherylcheryl9
ParticipantHello Joey
Frequent urination – have you been checked for an infection?
After two of my TURBs I had a catheter. Was to be in for three days. Explained to me that the bladder needed to rest and heal thus wait three days before taking out. Once out that first trip to the bathroom very painful as expected. Work on breathing your way through that experience. It helps.
I drink lots of fluid. About 14-16 cups a day. Doctor doesn’t like it and keeps checking my blood for imbalances but there never is. While everything settling down and during BCG treatments there was lots of urgency but never 30 min-1 hr. Really suggest you speak to your uro about this and not wait until Jan 3. You must be completely exhausted keeping up that regime.
regardless, the tumour is gone and that is definitely what counts!
Take care
Cherylcheryl9
ParticipantHello everyone
Made it through Christmas!! Everything went great and everyone really enjoyed themselves. Somewhat of an icon Christmas as this is the last one my oldest son will be home in full for. He goes in residence for university January 2 with three more years to go. He loves Christmas including the whole build up to it and there is lots of that in our household!
Quiet for a few days so I can catch my breath then company starts again this weekend for New Years and then January 6 we do it all over again for Ukrainian Christmas. Food that is. No presents. Of the 12 traditional dishes, I usually do 9 of them. House fills with people and some come from out of town. Most of food is already prepped. Cabbage rolls were done in October. Perogies knocked off early in December. Crepes, buns and dessert would usually be done by now but I ran out of flour so it will be early next week. Then rest of food prepared on Jan 5. That is one of the things I like about Ukrainian food. It can all be prepared ahead of time and that means very little cooking on the actual day. Sure makes the load easier for me. Looks like possible 16 guests so will be lots of laughs and visiting that day.
January 7 I start the deconstruction on the Christmas stuff. Plan to have everything put away by Jan 11. Then turn my attention to cysto (Jan 12) and three weeks of treatments. Then we plan to renovate one of our bathrooms. Then it will be spring and it looks like we will kick it off with a trip to the Carolinas in April. Sure helps to bring spring on faster. Especially as I sit here looking at our forecast with windchills approaching -50 and Friday/Saturday daytime highs of -30 before windchill!
Anyway, this will pass too.
Take care and Happy New Year and Ukrainian Christmas
Cheryl -
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