Search Results for 'outside bag'

[Joe]

Hi raincity,

I think your thought process is correct except maybe some details.  I am not sure though what kind of conclusion we can reach by finding out # of death per # of incidents when we just look at a particular year.  Intuitively, I think whichever province we live in Canada, the percentage should be similar.   Also in statistics, we often say garbage in and garbage out.  A case in point, Ontario did not report non muscle invasive bladder cancer patients to Cancer Registry till 2016.   Though, each province are supposed to be using similar methods to collect cancer related data, I am not sure if they are capturing the data properly.  A case in point, Stat Canada site allows number of incidences (# of incidences per 100,000 citizens) of bladder cancer by provinces in 2020, 2014, 2018, 2000.    For some reasons, # of incidence per 100,000 in Alberta has been always low compared to ON, and BC.   Also # of incidents per 100,000 are higher in east coast provinces.  I could not find # of deaths stat.  No explanations are given.

Yr 2020  NL:  39.3   PEI:  34. 1   NS:   n/a   NB:  35.1  QC:  n/a    ONT:  24.1   MB : 23.9    SK: 22.9   AB:  19.0   BC:  26.5  Yukon 23.7   NWT  11      NVT:  0    Canada n/a

Yr 2014   NL:  31.2   PEI:  31. 2   NS:   n/a   NB:  32.0  QC:  31.7   ONT:  26.4   MB : 17.2    SK: 26.5   AB:  20.2  BC:  26.3   Yukon 26.9   NWT  11.4    NVT:  0    Canada 26.9

Yr 2018   NL:  37.1   PEI:  29.3   NS:   34.4  NB:  31.8  QC:  n/a   ONT:  27.2    MB  :24.8    SK: 24.5   AB:  22.0  BC:  28.8   Yukon 24.7   NWT  11.1    NVT:  0    Canada 27.0  excluding QC

Yr 2000  NL:  18.9   PEI:  22.0   NS:   25.7  NB:  20.0 QC:  24.3  ONT:  13.9    MB  :22.2    SK: 21. 3  AB:  15.4   BC:  21.0   Yukon 216.4  NWT  0.0    NVT:  0    Canada 18.6

 

I wondered if #of urologist  make difference in # of incidents

Number of urologists in Canada per population 100,000.

Yr 2019  NL:  2.12    PEI:  1.4    NS:  2.81    NB:  2.94   QC:  2.47     ONT:  2.11   MB : 1.88    SK: 1.46   AB:  1.55   BC:  2.00  Yukon 0  NWT  0     NVT:  0        Canada  2.11  730

Interesting  much fewer number of urologists / 100,000 in AB (1.55) vs ON (2.11),  QC (2.94),  BC (2.00), and few number of incidents in 2020, AB(19.0) vs ON (24.1), BC (26.5) .  Perhaps. it is just coincidence, but It is strange that AT has lowest # of incidence  and significantly lower / 100,000 all these years compared to ON, and BC.

In terms of Death / Incidents,   I could get the data in 2018 for BC and Alberta, and 2022 for Ontario

BC  (2018)   Incidences M 1155, F 365  Death  M  235 , F 85       Rate  M 20%,  F 23%

AB   (2021)   Incidences M 743 , F227  Death  M  108 , F 34        Rate  M 15%,  F 15%

ON  (2022)   Incidences M 3411, F 1034  Death  M  612, F 242    Rate  M 18%,  F 23%

I have noticed that a 5 year survival rate is  more often used than  # of death / # of incidents to predict prognosis 

Below is related information giving at American Cancer Society site.

Localized: There is no sign that the cancer has spread outside of the bladder.    I.e.  NMIBC and MIBC without metastasis to lymph nodes or other organs.

Regional: The cancer has spread from the bladder to nearby structures or lymph nodes.
Distant: The cancer has spread to distant parts of the body such as the lungs, liver or bones.

Localized  – NMIBC   95%               MIBC  70%

Regional  39%

Distant   8%

ALL combined  77%

Also the site warns that people now being diagnosed with bladder cancer may have a better outlook than these numbers show. Treatments improve over time, and these numbers are based on people who were diagnosed and treated at least five years earlier. These numbers apply only to the stage of the cancer when it is first diagnosed. They do not apply later on if the cancer grows, spreads, or comes back after treatment.
These numbers don’t take everything into account. Survival rates are grouped based on how far the cancer has spread, but your age, overall health, how well the cancer responds to treatment, and other factors will also affect your outlook.

In terms of MIBC and metastasis, in recent years we have seen several new treatment, high lighted by discovery of immunotherapy and antibody drug conjugates, which have shown highly effective and durable results which have not been fully reflected to statistical data.  Also, every cancer is different in genomic level, which can be  analyzed by DNA sequencing machine, which has become affordable.  So, I think we should be looking at statistics as reference with grain of salt.

 

[Om]

New to BCC Forum

Diagnosed first in July 2022. Was told that it is aggressive form but superficial so BCG treatment was prescribed. Then again biopsy on Aug 29, 2022 (urologist did not inspect the whole bladder in July). This biopsy determined cancer to be muscle invasive. Urologist referred to oncologist for chemo. Oncologist suggest straight surgery as chemo offers small benefit. Urologist again advised chemo before surgery as surgery cannot be scheduled before new year. Now taking chemo.

Surgery involves removal of bladder and possibly, in the worst case situation one kidney, as one ureter is suspected of cancer. Urologist talks about outside bag. Any info, support from members went through such surgery would be of immense help. How is it like to live with outside bag?

[Nightingale]

DIAGNOSIS: NMIBC, MIBC, METASTATIC BLADDER CANCER
TREATMENT: TURBTS, BCG, NEOBLADDER, IC, CHEMO, Radiation

…with permission from Liz Neely

A Tribute to Greg:

Every once in a while a person comes along that you never will forget. Greg Neely was one of those people. Greg was a Bible teacher, church elder, insurance agent, public speaker and a strong advocate, spokesperson and fundraiser for Bladder Cancer Canada.

Greg’s story is nothing short of remarkable and an inspiration to us all.  He had one of the more complicated journeys with bladder cancer.  Unfortunately after several surgeries, treatments and many chemo/radiation treatments, he lost his battle with this disease.

I have included his story not only because of the inspiration and humour he provided us with but to share with others so they may learn from him even after his passing.  One of the last things that he did was to write a book, “The Healthiest Guy I Know”.  When you read his accounting of all his health challenges you are inclined to think, “Is he crazy? How could he with all those issues, consider himself healthy?  What I learned is that it is a matter of personal perspective.  Yes, to outsiders a person may seem like they are on death’s doorstep but somehow they are more alive and sensitive to their world around them because of this and it is a mindset.

One of the secrets to Greg’s success was his faith.  He was a devout Christian who not only practiced his faith, but shared it too.  He stated quite clearly in his book, “The Healthiest Guy I Know” it was his faith that sustained him when the news wasn’t good, and his future seemed bleak. In that sharing, he helped countless numbers of people realize that they can rise above their problems.

The majority of us cannot even begin to imagine the strength, courage and determination that it took to get through the last stages of his journey with bladder cancer but Greg was true to himself right up until the end.  As Liz stated in her story, even when his time was running short he still had people come and visit him in his bedroom.  Many people found his stories, advice and counsel uplifting and healing.  I was no exception. When I joined Bladder Cancer Canada in 2010 after experiencing a recurrence, it was Greg who helped me understand and put things in perspective. This greatly helped my mindset in dealing with my own situation with this disease. Liz was concerned thinking that this might prove to be too taxing on him but she saw that it gave him purpose and kept his mind active and most of all, she saw God at work in all their lives. Greg passed away on September 16th, 2015. He was and is still greatly missed. May he rest in peace.

Greg’s Story: **Info used/excerpted from “The Healthiest Guy I Know” – permission obtained from Liz Neely**

“Health to me is a mind and soul matter; it is only partially to do with my body, which on occasion causes some concern…” GN “The Healthiest Guy I Know”

My first health challenge was the diagnosis of Juvenile Diabetes (Type 1) when I was a teenager. This was no mean feat especially occurring during my peak growing and eating years.  I learned about the diet changes and other ultimate challenges. My parents had already set the example with what I saw of their reaction to my diagnosis. It was with a quiet, simple acceptance and an attitude of learning what they could about it and get on with living. I learned to do that too, except for the rotten hospital food.  I could never accept that.

My second big health challenge occurred in December 2000 with a mild heart attack. It was first treated with the insertion of a stent to clear a blocked artery but the stent blocked up within a couple of months and it became clear that bypass surgery was necessary to give myself the best chance of recovery.  This was a trying time for me.  I was concerned about the seriousness of the surgery and the risks it entailed.  I may not survive or I could be left disabled and felt if this were to happen I would be a real burden to my wife and two sons.  My anxiety led me to spend a long session in prayer in my study seeking the peace and God’s will in this situation. I quote from scripture Philippians 4:6 “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.” After that long session I felt peace knowing that my mission on earth was not yet finished.

The surgery was successful and I enjoyed some stable years with my health but it was not to last.  I started to notice blood in my urine in January 2008.  I originally thought that I had burst a blood vessel from all the snow shovelling that I had done.  Since the blood disappeared after a few days I forgot about it until it reappeared in February for a day or so and then it disappeared again.  I was convinced that the problem had resolved itself. When it returned for a third time in March I began to wonder if I had an issue with my prostate.  The blood disappeared for a third time and reappeared once again in April. By this time, I mentioned the issue to my wife, Liz and we both agreed that a trip to the doctor was necessary.

I went to see my doctor at the end of April, still not convinced that this was anything to worry about.  I expected my doctor to tell me that I was dehydrated and to drink more water.  When I mentioned the blood in my urine to my doctor and that I wasn’t worried about it, I was surprised to find out that my doctor was. When I pushed my doctor for his thoughts on what it might be, he stated, “We have to rule out bladder cancer.”  I was nothing short of stunned at this possibility.  I knew a couple of people with bladder cancer but didn’t actually know anything about the disease itself. I had thought it could be an infection or a kidney or prostate issue.  Thankfully my physician didn’t treat me with antibiotics but ordered x-ray, ultrasound and cytology tests. When abnormal cells showed up on the cytology exam, I was referred to a urologist who wanted to perform a cystoscopy exam.

A cystoscopy exam is not going to be on anyone’s list of favourite things to do anytime soon, and I was no exception.  For those of us that have had this examination we can only wish for physicians and researchers to come up with a much less invasive alternative for investigating the inside of the bladder.

So I say in comes the cystoscope! Think garden hose! All I could think about was the opening line from the television show Star Trek…Space: the final frontier…All I could think about was that the final frontier for me was now being explored and I was glad that it was not a five year mission.  The doctor was certainly boldly going where no man had gone before! It would only be a five minute mission if I was fortunate…And (they) found new life and new civilizations!  And they were the enemy; tumours.

A short time later I found myself in hospital to undergo the surgery that almost every bladder cancer patient starts with; a TURBT or Transurethral Resection of Bladder Tumour.  This is a scope surgery whereby the surgeon inserts a scope up the urethra into the bladder and cuts and cauterizes the tumours, taking samples for biopsy to determine the stage and grade of the cancer. After the tumours were removed, my doctor filled my bladder with a post op chemotherapy drug called Mitomycin C and left it in for a couple of hours.  The purpose of this drug is to hopefully kill off any remaining cancer cells.  It is a caustic substance that can really irritate the inside of the bladder especially right after surgery.

I found out just how challenging it can be to void for the first time after this surgery. I don’t think any other patients heard the response, so high pitched it was.  But I suspect that dogs were barking and howling for miles around the hospital ward where I was gamely trying to empty my now tumourless bladder.

A couple of weeks later I received my first official bladder cancer diagnosis; “Two malignant tumours, stage 1, grade 3, highly aggressive.”  My bladder was red and raw and I was to begin Mitomycin C chemotherapy treatments which would be instilled directly into my bladder by catheter beginning Monday the 14th for six weeks.

The treatments are done by a nurse whose job it is to make you feel as if it is the most natural thing in the world to walk into a small room, drop your clothes to the floor, lie down on the bed naked from the waist down and allow her to do to you what you’d kill any other single person in the world for doing (at least in your imagination).  The first time it is quite embarrassing and astonishingly uncomfortable.  After that, all modesty is checked at the door. I found that some nurses are kind and methodical but others were in way too much of a rush.

Whether one has treatments of Mitomycin C, BCG, Gemcitabine or something else, they are all hazardous and we patients, myself included, find it somewhat amusing but concerning, that the nurses basically don HAZMAT gear before administering the drug. Patients are not protected at all and have to keep the drug in their bladder for about two hours.  This goes against the law of nature because our bladders are meant to expel fluid not admit it. The nurse’s term of “urgency” is often “agony” for a lot of us trying to hold onto the precious yet dreaded drug that would hopefully help prevent any further recurrences and progression of the disease.

I endured six TURBTs and thirty four treatments of Mitomycin C, Gemcitabine, and BCG all in a two and a half year period.  The cancer I had was aggressive and kept recurring but I managed to keep my head game on and persevere.

Despite all these measures, by June 2010, it was discovered that the bladder cancer had become muscle invasive on the latest recurrence and I was now faced with the idea of undergoing a radical cystectomy (bladder removal) surgery.

However, while undergoing yet another round of Mitomycin C in a last bid attempt to keep my bladder, I surfed on the Internet to start learning about muscle invasive bladder cancer.  I had to consider the fact that while my current course of action allowed me to keep my bladder but would it be enough to allow me to keep my life? During this search I came across the link for Bladder Cancer Canada, then known as CBCAN or Canadian Bladder Cancer Network.  I discovered that the site had a discussion forum and decided to sign up and post about my current situation.  I received several replies all telling me that with a diagnosis of muscle invasive bladder cancer, a radical cystectomy is usually the treatment of choice to ensure the best chance of survival.

I did get into discussions with my doctors about possibly trying a combination of chemo and radiation as another last attempt to save my bladder but further tests revealed a thickening of the bladder wall in three different areas plus a swollen lymph node.  I was not considered a good candidate for this treatment option because of the condition of my bladder and the length of time I had already been undergoing treatment.  I had been at the muscle invasive stage for at least five months and my doctors wanted me to have the radical cystectomy surgery as soon as possible.  It was because of this urgency that I had to forgo neoadjuvant (pre-surgery) chemo that many patients are advised to consider doing prior to radical cystectomy surgery. After further discussion with my urologist I made the decision to have the surgery with a neobladder diversion.

Some patients that are diagnosed with initial Stage 1 disease like myself opt for the radical cystectomy surgery right away so they don’t have to think about the risk of the disease possibly progressing to muscle invasive but I had decided along with my urologist to follow the more conservative course of treatment partially due to my young age and other co-morbidities of Type 1 diabetes and coronary heart disease.

I got the call on Monday December 13th, 2010 that the surgery was to be on Wednesday.  Just two days to get my head wrapped around the enormity of my decision and to do the physical preparation for the surgery.  Pre-op prep involves a cleansing of the colon since a section of the small intestine is used to create the “new” neobladder and the intestines must obviously be prepped for this.  I made arrangements with my office that I was taking a three month leave of absence effective Tuesday, the next day.  I called my parents and emailed lots of friends to let them know of the impending surgery.  People from my local church and around the world were praying for my successful surgery.

Since it was close to Christmas, I was concerned about getting the gifts wrapped and under the tree prior to my surgery since I was not going to be able to lift and move about with any great ease for a while. This was accomplished with some trepidation and humour since I was undergoing the colon cleanse at the same time.

It felt quite surreal to be going into hospital to have a surgery from which you would feel lousy post op and yet be made well. People prayed. God oversaw. The doctor performed. Liz waited. And I slept while the professionals at Sunnybrook completely modified my pelvic contents and changed the functional operation of several organs…  “I will give thanks to Thee, for I am fearfully and wonderfully made” (Psalm 139:14). Some of us are more fearfully made than others it appears, especially following this surgery.

The first few days post op were not only challenging in terms of getting moving again accompanied with all the tubes and wires but the fact that I was in a shared room and had a roommate that was in considerable post op pain and kept everyone awake with his moaning and ringing for the nurse.  I was thankful I had the necessary medical insurance that allowed me to transfer to a private room when one became available and I was able to get some much needed rest. I also realized that this was the exact same room that I had occupied nine years previously when I had my bypass surgery.  That ward had been a cardiac unit at the time.

On Day 4 my morphine pump was switched out for oral pain meds.  I tried to resist meds as much as possible in order to get my head clear and found that ordinary Tylenol kept the pain to a manageable level.  I found it somewhat amusing that the nurses used the word “discomfort” rather than pain.  What would one expect in a patient that had 26 belly staples and seven different tubes coming from different orifices of his body?

During my hospital stay I learned to flush and irrigate the tubes that were in my body.  There would be a few remaining in me when I went home so the hospital staff wanted to make sure that I knew what I was doing prior to discharge.

I knew that I would have to have a Foley catheter in for several weeks until my surgeon was sure that my neobladder was healing and not leaking. I was also aware since I had a neobladder it may become necessary to learn to self- catheterize.  I attempted a joke about becoming so skilled at this task that I would go for the Olympic record.  “Greg Neely gets gold in the “decatheter” with a new world record time.”

I eased myself back onto solids foods and because of my efforts didn’t experience any disastrous effects.

I finally went home on December 22nd with the instructions from my surgeon to enjoy Christmas but not to drink too much alcohol. The first thing I did was sink into a chair, hug my dog and go to sleep. I was scarred from throat to pelvis, thirty pounds lighter, emaciated, unable to eat much, and weaker than water.

For the first month or so at home, I needed to wake up at 3AM to irrigate catheters. I also leaked and experienced sauna like night sweats and bone jarring chills necessitating frequent changes of clothing and bedding. Because of this I slept on a single bed. I wanted Liz to get enough sleep so that she could continue to work at her part time job as a life guard and swim instructor.

I had to deal with bladder incontinence for quite some time until I learned how to control the neobladder.  Night time continence would continue to be an issue so I learned to get used to wearing incontinence products or “diapers” as people call them.  Constipation was a concern in the early weeks as well.

How did I get through it?  I turned to my faith once again.  In 2 Corinthians 12, the apostle Paul speaks of the “thorn in the flesh” and God’s reply to Paul was, “My grace is sufficient for you…”  These verses buoyed my spirit when the chips were down and I knew despite all that had happened and what I had lost I would gain back in other ways.  I had a lot to do yet.

I had been part of the Bladder Cancer Canada online discussion forum for a while now and was excited to learn that the organization would be holding its first in patient meeting on May 28th, 2011 in Toronto. Liz and I attended.  I had been asked to give a short talk on what effects bladder cancer had had on me as a patient.  I decided to do something more inspirational in my talk rather than just recounting the facts.  My speech was well received and it wasn’t long before I was asked to join the Board of Directors with Bladder Cancer Canada.  I also spent considerable time travelling across Canada speaking at other patient meetings hosted by Bladder Cancer Canada.  I became a patient support volunteer; someone that a person could call and ask questions about their experience with the disease. I visited people in their homes or in the hospital.  I also spent many hours fundraising for Bladder Cancer Canada’s annual walk.

I did a lot of writing and was successful in having articles published in several cancer publications.  My story was written up in the newspaper and I had been interviewed on TV.  I found my experiences extremely rewarding, knowing that I was helping others. I discovered that my work and purpose followed a scriptural reference, “Thy word is a lamp to my feet and a light to my path” (Psalm 119:105)

Did I fear another recurrence?  When asked, I admitted to thinking of it but not anticipating it.  Stats do show that if a recurrence happens after a radical cystectomy that is not a good sign.  It means that the bladder cancer has most likely metastasized potentially going to the bones, liver and lungs.  I kept my personal fears at bay by participating in the Bladder Cancer Canada discussion forum and relying on the prayers from my faith community.

I held my own until the summer of 2011 when I started to have dizzy spells and bouts of feeling very light headed.  I had several tests done.  Doctors checked out my heart because the symptoms I experienced were similar to when I first had my heart attack.  My heart checked out fine but my bloodwork indicated that I was anemic.   It was suspected that I could have internal bleeding somewhere.  Doctors were concerned that I might have colon or a blood cancer.  I eventually underwent not only a colonoscopy but a gastroscopy as well.  Biopsies were taken.  Test results showed that there wasn’t any cancer which was the good news but that I had celiac disease.  This was another autoimmune disease to contend with.  However, I breathed a sigh of relief.  It would mean some dietary restrictions but not surgery or more medications.

The dietary restrictions proved more challenging than I first thought.  I had to remove all sources of gluten from my diet and be cautious of cross contamination.  This made it necessary to purchase my own toaster and spreads.  Eating out proved challenging because of the risk of cross contamination.  I not only found the taste of gluten free bread and other gluten free foods disagreeable but the cost as well. I discovered that gluten free foods generally cost a bit more than twice that of regular food.

All was well for a while until tumours were discovered in my urethra at one of my check-ups in November 2013. It was necessary to have surgery to remove the tumours and have them biopsied. The results showed that it was necessary for me to have a second surgery not only to remove my urethra but my neobladder as well and switch to an ileal conduit (outside pouch).
It was not the news for which we had hoped and prayed, but as one with a firm faith in the Lord, I rest in His purposes. Unquestionably, I would choose a different path. But my vision is so very short-sighted.
My urethrectomy surgery, including removing my three year old neo and constructing an ileal conduit was scheduled for Tuesday and was again quite invasive as you could imagine. I saw the surgeon prior to Tuesday to ask questions and get the low down on what he planned to do. He indicated that he might be able to use some of the neo if there was no cancer there and then he would not need to re-purpose additional lengths of small intestine. He wouldn’t know that until he explored this new world once again. Clearly if there was even a hint of cancer he would not use any neo. I’m not sure if he used any additional intestine and whether shortening it would remove any wrinkles around my eyes from the tightening. I’ve always had a bass voice, but maybe tenor is in the future.  I would not be posting any photos.
Next Tuesday I was sucking oxygen and drifting off to sleep. I awoke hours later to a different reality. I looked forward to the opportunities it provided me—though I must admit I would have probably chosen a different route. Still, knowing what I know about opportunities that having bladder cancer can provide, I expected that there would be plenty of humor to share, emotion to shape, thankfulness to enjoy, faith to deepen and joy to once again experience.
On Thursday, two days post op I managed some strawberry jelly and a lukewarm cup of tea for breakfast.  I walked around the nurses’ station hanging onto my IV pole and sat rather uncomfortably in a chair. All in all, it was a pretty good day so far.  Yesterday, it was not so much…but that was yesterday and was to be expected. I unfortunately had to share a 3 person room. One guy had a sleep apnea problem that rivaled anything I had ever heard and we heard him all night which meant sleep was fleeting. My other roomy was terrific with sense of humor not unlike my own. It hurt to laugh, but it’s worse if you can’t.
A few days later I was told that I was heading home the next day. There was too much frivolity in this room and they needed the surgical oncology ward to be more somber. Plus so far I seemed to be doing quite well. I was up and walking a lot today and eating some little portions of the food developed for diabetic, celiac patients who are weaning their way off clear liquids. When they offered home as an option I jumped at the chance. OK I did not jump – not doing THAT well. But I was blessed and very thankful.”

After my surgery I found out that I needed to do radiation treatments.  I was all aglow with anticipation!  I met with the radiologist oncologist on Thursday. I was to have 25 radiation treatments, five days a week for five weeks. Before the treatments started, I would have the simulation done. That’s where they position the body exactly and map out the exact places on which they want the main radiation to focus. They also gave me my first permanent tattoos (little dots) so that positioning each time could be done quickly and exactly. I asked for butterflies, but they said I can join up the dots after the treatments were over. I just figured I’d save some time and money if they did it. I needed a full scan first to ensure there were no rogue cells taking up residence elsewhere, but that was not anticipated at that point. After that I went off to British Columbia for ten days with my wife. I came home to treatments in May/June.

That particular regimen of treatment was not common, but almost nothing about my BC has been common. The issue was that the area of invasive cancer that was removed drains into the groin lymph nodes. Since I had so many pelvic lymph nodes removed during the first RC (15) they did not want to remove the groin lymph nodes. I would swell up like a blimp and have to be tied to the ground.  I would save on airfare, but it would make driving a real challenge. Anyway, the radiation would blast the lymph nodes in the groin.

They asked me if I had kids because I would not be able to have them after this is over. I assured them that I was minus the appropriate parts to father children at this point so there was no concern there. They also mentioned that a couple of the side effects would be burning when I void and frequency. Once again I pointed out that neither of those two things would be possible given my current anatomical composition (with an IC and no urethra). Sorry, but I was not posting photos on Facebook!”
The trip to BC was awesome. We even got to Tofino and stayed a night in the famed Wickaninnish Inn. I may have to sell my car to pay for it.

I had my first radiation treatment. It was quick and painless. I understood much like BCG, the effects are cumulative and after the first couple of weeks any side-effects may manifest themselves. Not everyone gets them all, but they include fatigue, skin irritation (burn), and loose stools due to the bowel lining being irritated by the radiation. As far as I know I would not grow a third arm or have a radiant glow exiting my pant legs!
It was “interesting” to be tattooed on my hips and abdomen (4 little dots to line up the beam) and then lie naked and exposed and have the therapists drawing additional lines and dots with a Sharpie. At this point in my six-year journey with this disease, it all seemed quite normal, really.

I didn’t have therapy on Thursday this past week because the machine needed to be serviced. They assured me it was routine maintenance. If I did happen to grow a third arm, however, you would know that it was not routine at all. Oh, and I may be able to see through clothing… Tomorrow was the last of 25 radiation treatments. I was glad. The actual treatment was completely painless (like getting an x-ray is painless) but the resulting skin damage which appeared after about two weeks was somewhat irritating, burning, red, raw, peeling, like an abrasion, but on that part of your anatomy abrasions should not ever occur!!! However, for anyone who has had an RC, this was a piece of cake. A piece of cake, that is, that the candles have gotten too close to. Bring on the Polysporin!

I was followed up with a CT scan and it showed a couple of nodules where there should not be nodules. So I am to have an MRI as soon as possible to try to identify if these were harmless or if they are recurring disease. Hopefully the MRI would give the docs confidence in moving ahead if further treatment or surgery is indicated.
Are we having fun yet? Well, things that don’t kill us outright make us stronger. And there is usually something I find to smile about, even in grim situations, so I am doing well. As I look around the radiation department at the cancer clinic, I realize I am the healthiest guy there. My faith is strong, my support team is outstanding, and my friends at Bladder Cancer Canada remain a source of encouragement and delight.
The burning and blistering was still active two weeks post radiation. That probably will start to subside. My MRI was booked for Monday, June 30 at 4:15.  If you wanted to, you could have come and watched. I would have asked them to provide drinks and popcorn. As mentioned, they’re investigating two “suspicious” nodules where there ought not to be nodules of any kind.
I guessed that was what makes them suspicious – sort of like two suspicious individuals in your backyard at 2 a.m. They were suspicious because they should not be there. I know Ki (one of my BCC friends) would have just shot them. But I was content to have an MRI and see if there was a more peaceful resolution to my particular issue.
In the meantime, I had booked eleven days in the mountains of Colorado telling stories at campfire to a great bunch of kids at camp. I wanted to forget about bladder cancer for a while and enjoy the splendor of God’s creation at 10,000 feet. The oxygen was rare, but the scenery was even rarer! Fantastic! If you would be near the Spanish Peaks in Colorado in July, I would be close by.
Well, the MRI results were now known. It was not what we had hoped, but better than it might have been. The cancer had metastasized into the peritoneum and surgery to remove the tumours was not an option. Chemotherapy was to commence presently. I sought a second opinion at a pre-eminent cancer centre in Toronto, not because I questioned my own excellent doctor and cancer centre, but because this was my life and it seemed prudent to pull out all the stops. Once again, David and Jack were in my corner encouraging, supporting, educating and proving the very essence of Bladder Cancer Canada’s existence!

Liz and I were not despondent or depressed, nor particularly anxious or panicked. Our faith sustained us in times like these (otherwise it is not faith at all). Our families were entirely supportive. Our friends were very concerned, but stood with us. Our sense of humour remained – warped, but we delighted in seeing the humour in even such potentially dire circumstances. I told my son that if he buys me electronics for Christmas, he does not need to buy the extended warranty. See what I mean.

We have the second opinion appointment tomorrow at Toronto General Hospital, which is associated with Princess Margaret Hospital under the University Hospital Network. Wait times? Who said anything about wait times? Not with David and Jack on the case for Bladder Cancer Canada.

The second opinion confirmed the first, that surgery was not an option, radiation was not appropriate and chemo was the next course of action to try to control the disease. In the meantime, I felt good, looked outstanding (!!!) and was prepared to live each day until I couldn’t. That’s what all of us are doing – right? I saw the medical oncologist on August 18 to start the chemo planning and from there would look forward to its conclusion with great anticipation.
In the meantime, I had to plan for another week of kids’ camp on August 10 where I am the storyteller at the nighttime campfire. Something I have been doing for decades and I love it. Hopefully the kids will too…
I saw my medical oncologist yesterday. I am to have a bone scan and CT scan in early September to get a baseline prior to chemo which will start on September 16. Like many dealing with bladder cancer, it will be Cysplatin and Gemcitabine. Day 1 will be both, day 8 will be Gemcitabine only and then the third week a recovery week. There will be four cycles and then re-evaluate next steps. This is “palliative”, not curative, though there are certainly occasions when palliative becomes curative. I’ll leave that up to the giver of life and that will resolve a lot of anxiety which might otherwise invade my enjoyment of today. I say to all that have supported me, “Thank you for your prayers and your kind words.”
I had a bone scan and it was clear. I don’t mean I am without a spine, I mean there are no lesions on or in the bones. That was good news.
The CT scan was less positive. The cancer had now metastasized to both lungs.  There was a nodule behind the liver (not in it, but it would be better to not have it at all), and there were more tumours in the sacral/rectal area. It was these that were causing me pain for which I have increased the medication slightly.
Today September 16th was chemo number 1 – four sessions where week one is both CIS/Gem, week two is just Gemcitabine and week three is a week off to recover the blood counts. I will get a PICC line next week to save my veins from the burning of the Gemcitabine and to ensure that when I drink water, I do not leak out my arms!!
It was a long day today, but the result is a whole host of pills to take to prevent or control nausea and to drink like a sailor (non-alcoholic beverages and those without caffeine) by the gallon. This was when I was glad to have traded my neo for an IC, even though done under duress. It did involve many, many trips to the washroom during the day however because with chemo the nurses hydrate you rather profusely. Guess what filled up rather quickly? Bingo. Next week I may take a 75 foot hose and just hook it up to the toilet from my recliner and hope no one decides the plants need watering in the hallway – or worse, a workman gets thirsty, sees the hose and…well, you get the picture.
So tonight I’m very tired and sleepy but very grateful to live in a country and a city where top-notch medical teams give their very best to treat the patient and not just the disease.  I’m also very grateful to have bladder cancer friends who do the same. Tomorrow is a new day.
Interestingly enough, the pain subsided, perhaps temporarily, after the chemo. Not sure if it is the drugs, the hydration or what, but I am quite comfortable today. Long may it continue.  I am just tired and sleepy as I was told I would be. The anti-nausea drugs seem quite effective so far. My appetite is gone, but my wife is persistent and as a diabetic I am eating to keep up my strength. The steroids cause my blood sugar to soar. Thankfully I have an insulin pump and can take extra insulin at will.
Our Awareness Walk is Sunday in Toronto. I am planning on being there and supporting the troops. We hope for about 500 attendees this year if the weather cooperates. I am a little bit under the weather. In reality we are all under the weather if you think about it. As long as we are above the grass then it’s a good day.
Well, after my first chemo session, which was better than I expected (Cis/Gem) and no nausea, I developed an infection which put me in hospital for four days on IV antibiotics. I went in the day after our walk at which I felt absolutely horrible – and looked it too (even more than usual!). So I missed my second Gemcitabine dose and last week was my recovery week. My white blood counts have been low so we’ll see what the med/onc decides to do with me this week. I hope I can go ahead with round two, not that I like the fatigue, but I want to be moving forward with this treatment to combat the enemy within that is trying to kill me. At the minimum, we need to teach it a lesson or two. Conversely, it is teaching me some lessons too, so there is good in everything if we look hard enough for it. I am now down below my marrying weight of 33 years ago and if I still had that baby blue suit that my kids laugh at, I’d try it on.
It is now November. The results of recent CT scan show that while two tumours actually increased in size, the majority have shrunk. My final round of chemo in the present series starts tomorrow for two Tuesdays. Then I have a break until a follow-up CT scan towards the end of January. I may then qualify for a randomized phase 2 clinical trial where I may be in either the control group and receive chemo or I may be in the experimental group and receive the new drug. Each has pros and cons, but the idea is quality of life and extended life. I like both options – quality and extension. The more birthdays I can have the better. So while it is kind of a mixed review, it is of more good, than not so good and for that I am thankful. God is so good!
I just finished my last chemo session for this series. Now for two months of forgetting about it for a while. It is time to figure out what everyone wants for Christmas. This year especially makes me appreciate that it’s not what you can give or get so much (though I love the giving part – and the getting too if I’m honest), but it is being here to enjoy family, friends, faith and festive joy. The toys just give you joys and fleeting enjoyment. The other things give so much more that they cannot be measured either in time or value.
2014 has been a year of two surgeries (one relatively minor – TURBT; and one major – second RC), 25 radiation treatments, four rounds of chemo and a diagnosis of incurable disease. In spite of that, it’s been a really good year – my older son got married to a lovely lady, and my younger son got hired by the OHL as a linesman. Both got full-time jobs. I officiated at four weddings.  My wife Liz and I travelled to BC, Colorado and Las Vegas. Friends from countries all over the world have written and phoned with support and assurances of prayer. I have been blessed with more than most in the world, I expect. And for that I am very grateful. For my friends at BCC, you provide great encouragement. Let’s make 2015 even better!
It is now February 2015 and the CT scan shows that the tumours in my lungs are growing but minimally and the doctor feels all but one is insignificant – easy for her to say!
The concerning tumour is the one in the area where I sit (to be polite).  It is growing and is about the size of a golf ball. So the thinking is to radiate that one tumour to try to shrink it. Depending on the success of that, it is suggested I then get involved in a clinical trial out of Princess Margaret Hospital where two drugs, both with efficacy, are being compared to see which is more easily tolerated . It is not the Roche study which closed pretty quickly, but seems to be a worthwhile venture. The chemo is given every three weeks for as long as it is having good effect.
My pain meds have been increased and if I sound like I am confused, I am!  This is the story of my life. Maybe the meds will help. All in all, it could have been a lot worse and we are grateful that there is a path forward that seems well thought out and potentially beneficial.
Life got even more interesting in late April. I spent a couple of days in hospital having spiked a fever two days after chemo (Taxol). I received two units of blood as well. Tumors are now in the liver. I am on Taxol for as long as it helps and does not become unbearable. I will be speaking with social worker over next few days to get a good picture about the future. I’m not sure how much of the future remains for me, but I am confident in God, my docs, my family and friends. It was great to be at home today and not in an isolated hospital room, used for freezing meat most of the time as far as I could tell!
I have been less than healthy the past few weeks, but I finally have decent pain management. It makes a huge difference though that narcotic haze is really not my preference.
Keep on keeping on, folks. Life is full of challenges, but also full of wonderful joys. Let’s not overlook the joys.
I am experiencing some challenges currently. Who isn’t? This chemo seems to have been somewhat taxing, but maybe there were other things at work under the surface as well. And everything is taxing in this country. I get an additional week and a half off until the next Taxol. One Monday on, two off, one on, two off – and so on until the doc says enough, or I do. Great weight loss program; I weighed in at 148 lb today. I have little appetite. I push what I can. I do not want my wife to kill me for not eating.
Well, my hair started coming out in handfuls this morning from the chemo received a couple of weeks ago. It started looking patchy so I had Liz cut it down to what used to be called a brush cut. It will continue to come out, and my head will be shiny and round. It really isn’t square!
I was put on chemo again in May and had three sessions. I was in hospital twice with infections. Then just over two weeks ago my abdomen started to swell and got really, really painful until finally I was admitted to Sunnybrook. As the abdomen swelled the pressure was intense and my incision from my RC surgery split open about three inches. Out came all sorts of things – a pair of old socks, a hat, plus a lot of stool. The pressure was instantly relieved and the pain gone, but now I have a three inch wound in my abdomen that will not heal and cannot be surgically repaired. I am now wearing an ostomy bag in the middle of my pelvis and it is acting as a bowel. Lots of leaks to date but we are working on a solution. It’s a messy affair. Who knew you could live with such an open wound.
It is now June. No more chemo for me as it was no longer working. Now it is a question of controlling pain – I am on a pain pump full time and it seems to be effective. I am walking with a walker for the moment until I build up my strength a little. I am spending a lot of time in bed. The goal now is get strong again and to live each day productively and enjoyably. So far so good! Heaven is in my future, but not for a while yet I hope. I’ve got a good appetite and am catching up on some meaningless TV shows. All things considered life is good today – and today is all we really have.

 

[Nightingale]

Diagnosis: Rhabdomyosarcoma at age 16 months

Treatment: Radical Cystectomy, prostate removal aged 2, chemo, radiation

Matteo was diagnosed with rhabdomyosarcoma of the bladder when he was 16 months old.  At the time of diagnosis, he was in acute renal failure. The tumour was blocking the ureters causing urine to back up into his kidneys. Depending on the position he slept in, he would either wake up full of urine or there would be sporadic amounts in his diaper.

The tumour also caused bloating in his abdomen.  When they biopsied it, they found it was the rhabdo and they were able to take it out with clear margins.  He did 3.5 years of chemo in total. Matteo’s doctors thought he might be able to do radiation treatments but we thought that it was a quality of life issue. The bad outweighed the good at age 17 months so we decided that he would not have radiation treatments with his original diagnoses.

He relapsed three months after his last chemo treatment at age 2.5 years old. A lesion was discovered in his prostate. They started him on a more aggressive protocol.  The original protocol was 1.5 years of chemo and another 1.5 years after the relapse. A few months into the treatment they realized that the tumour in the prostate was still growing. That was when they decided to take out his bladder and prostate. He was two years old at the time.

After his surgery, Matteo’s doctors planned for him to have 6 weeks of radiation and chemo together. Halfway through the treatments they had to stop. It was really nasty. Matteo ended up in ICU with inflamation of his intestines which caused a blockage. Then all of a sudden his bag is full of blood and we asked why. The doctor said that the treatments were irritating his bladder and when he was told that Matteo didn’t have a bladder, the doctor responded, “Well, I don’t know what it is.” I’m like, “What the hell? What are you doing to him?” He has zero platelets and is bleeding out!  He went through 45 blood transfusions. It was ridiculous. His white blood cell count was zero and he had also contracted C difficile. That first protocol would have killed an adult in a heartbeat and now he was entering into a life time dose of chemo.

During this time, I discovered a US based online support group for bladder cancer. It was called Inspire. Today it is called BCAN (Bladder Cancer Advocacy Network). They helped me and we met so many people. People constantly sent Matteo cards, gifts and birthday presents. They really connected with us. I would write what was going on that day in the hospital. They would write stuff back to help out because there was no one else to help me here in Ottawa.

We started up an oncology group on Facebook with the hospital when Nicco, Matteo’s younger brother, was diagnosed with leukemia. If I’d had that when Matteo was diagnosed, it would have been a lifesaver because they were a fountain of information.

Matteo was about four and in Kindergarten when we met David Gutman, cofounder of Bladder Cancer Canada. He was going down a bit of a dark path. He didn’t know anything about school and was worried about being different. David was coming to Ottawa.  My girlfriend that I’ve known since I was born works in urology at the hospital. She told me that they had asked a couple of people if they could be a mentor for Matteo and I guess David had been notified. He contacted us and invited us to go for a swim.  Matteo was scared of the water. I have them on video when they first met and were getting into the water. He was able to see that David had a bag. Afterwards, he was able to tell people that his bladder and penis didn’t work. “I have no bladder. I have a urostomy.”

His medical team had recommended that we go to a psychologist but I didn’t think that a psychologist was appropriate at that age.  We needed someone who was going through or had gone through the same thing. Everything went from there.  We have kept in touch and see David when he comes into town. We met Snookie, the Ottawa Bladder Cancer support group founder that day as well. We do the bladder cancer walk together with Snookie every year.  We have formed a bond and it is amazing.

Today, Matteo is ten years old. He is still tiny, maybe 51 pounds, but has lost a lot of his baby look and appears more mature. I think that his growth may be affected from the pelvic radiation and it hit the heads of the femur. However, we are a tiny family.  Matteo will hit puberty with the help of oral hormones. Doctors are going to have to do it for him because all the radiation probably killed the testosterone cells in his scrotum. He obviously can’t have kids because he doesn’t have a prostate.

He is doing fine with his urostomy. He wears adult Hollister brand ostomy pouches because the infant sized ones fall off.  They seem to be the right fit for him and he has no issues with them.  He has a nice looking stoma.  Now that Matteo is growing, the ostomy pouch is just above his groin and he is able to tuck it into his pants. When he was younger he just left it outside.  Matteo refers to it as his pee bag.

Since Matteo doesn’t use his penis to urinate because of having the radical cystectomy surgery and the urostomy pouch, it is sort of a dead appendage, almost like it is a forgotten part.  But he still has to clean it.  He is circumcised.  He has to make sure that he wears underwear because if the tip of the bag rubs against the tip of his penis it will cause blisters.  I keep asking the urologist, “If the urethra isn’t used, will it close up?” You can still see that there is a dot there but has it closed? Those are some of the things I need to know but no one can tell me.

Last year or the year before, there were some videos online that kind of went viral because one of the kids ripped off his bag in the middle of class. I lost my mind.  It was really traumatic for the kids in the classroom. They went home and told their siblings that someone had ripped off Matteo’s urostomy bag.  Matteo’s older sister found out from her classmates that the kids were traumatized. The moms were texting “What the heck happened?” We got in touch with someone that is head of the ostomy association and they got in touch with Hollister.  They flew in from Toronto and did a whole presentation in front of Matteo’s class. I was amazed.  They had a balloon filled with water. This is your bladder.  This is why they took it. This is what the bag looks like and this is what it looks like when it is filled with urine.  They made coloured water and put it in it.  They gave everybody a chance to open up the valve to let the liquid out.  Matteo stood up in front of the class and lifted up his shirt and everyone got to see it. It was awesome. They brought 24 bags, one for each kid and they all got to colour a picture on it.  Matteo got to wear all of their bags. His best friend drew a heart on it, “I love you Matteo”.  He was so proud to wear them.  It made a huge difference in the kids and how they could be more accepting. With Matteo, the secret’s out. Everyone knows.

Matteo is an amazing kid. He goes to the Bladder Cancer Walk and his brother does the leukemia walk. He is not as vocal as Matteo is.  Matteo will go and talk about his issues. Nicco had leukemia at the age of 2 and treatment for 3.5 years but it was not as drastic as it was with Matteo. However, it was still very traumatic for us because this was our second child that was diagnosed with cancer. Matteo was close to death a bunch of times where Nicco sort of breezed through it. We knew how to drug him so we drugged him well according to his protocol and he felt little pain. With Matteo, the doctors could not get a handle on his pain. He was always in pain, so much pain.

Both boys are allergic to morphine. Morphine seems to be the go to drug. The only reason Matteo doesn’t remember a lot is because of being in so much pain and lack of pain medication.  The only thing that he could use was Fentanyl with break through Demerol or Demerol with break through Fentanyl. We had him on Fentanyl patches and an epidural.  There was nothing that would work for this child’s pain. It was like 49 days where he hadn’t eaten anything. He was vomiting 5-6 times a day. He was on a nasal gastric tube.  He was death. The doctor wouldn’t give us any Nabalon. He was dehydrated with a fever and had no white blood cell count.  My husband took him to ER again.  There was a fellow on from another hospital and we asked about Nabalon pretending like idiots that we didn’t know anything about it. He was like, “Great drug, I’ll prescribe it.” It is a cannabis derivative. We’re like, “Oh my God, give it to him now.” And he ate, everything stayed down. It was the first time that he ate in 49 days.  It alleviated 3 different drugs.  He was in the last stages of protocol. There was no pain, or if there was pain it was super tolerable. I was like, “What the hell?  You could have done this, and saved him the trauma with the open blisters.”  Even with Nicco, we used Matteo’s leftovers.  He went from curled up on the couch screaming and crying to walking.

Besides never giving up; I would say never play catch up, never ever play catch up with the pain.  That is the number one thing I tell all my patients. If you feel it even a little bit, drug yourself.  Don’t be afraid to use what you have to get through it.  If you play catch up like we did the whole time with Matteo, it will never be okay.  Catch it before it’s there and you can get through it. There are great drugs on the market right now and don’t be afraid to use them while you need them. If you say they are so bad for me, remember it is quality of life that we are dealing with at this point.

It has been about a year since Nicco finished his treatments, and they said that he shouldn’t have any major side effects.  He will be able to have kids and live a normal life.  He is bouncing off walls now, full of energy.  They are fighting because Nicco wants to play and Matteo can’t.  Nicco will say “I had cancer too and am fine, why aren’t you fine?”  Matteo needs the downtime. We are trying to figure out how to keep him sane because of all the after effects of the chemo and radiation. He gets tired very quickly.  His hands and feet tingle because he has neuropathy in his hands and feet from the chemo. He has had those lifetime dosages of drugs and his heart is affected because of it.

Nicco was waiting forever to have his bladder out. He kept asking when they were going to take his bladder out. I kept saying, “No, they are not going to take it out.” The other day we saw something on Facebook; you know the Facebook does memories?  There was a thing with Matteo in it. I was showing something to one of the counselors at the school and Nicco was saying, “My penis works and I still have my bladder.  My penis and bladder works but Matteo’s doesn’t.” I’m like, “Oh my God.” We talk about it daily.

Matteo didn’t know that he didn’t have a prostate because he was so young and I didn’t want to say anything.  We have sex education so early in school these days.  At the end of last year, Nicco was running around first thing in the morning, “It’s big, it’s small, it’s big, it’s small,” and he asked Matteo if his penis did that.  Matteo said, “No it doesn’t do that and thank God because it looks like it hurts.” I told him, “Just to let you know it is normal for a penis to do that, but yours doesn’t because they took out your prostate.”  He said, “My God, what else did they take out of me?” I told him nothing else, just the bladder and the prostate. I think that he does have feeling.  They weren’t sure that he would.  When they removed his prostate, they also took the nerve and the back part of the tip of his urethra.

To cope getting through all of this, I needed some medication help. Ativan is a good drug.  I think what people don’t realize is that you go into fight and flight mode. It’s like a job. You’re there, every day. I lost my shit when Matteo was diagnosed. When he was in ICU, hooked up and in renal failure, I never thought about him dying.   You go and hang out at the hospital and then go home in the evening. I would also visit a couple of hours in the evening.  My mother-in-law did nights. I looked after myself and my husband looked after himself.  He was still working. I was the primary caregiver and pregnant as well.  It was really hard. I also worked as a community nurse and would do a couple of IVs or do wound care and see a couple of people.  I worked until I was 6 months pregnant and then was on maternity leave for at least a year.

I did break down close to the end of his treatment. Those 6 months were really bad.  I started getting panic attacks, like PTSD after the fact.  I’m the type that can get through it and then at the end, I start to unravel. I started getting anxious. My husband had to start taking more of an active role.

When Matteo relapsed, I gave birth and had to handle a newborn.  I was at home dealing with the frailties of that and then having to be at the hospital for a relapse. It was devastating. I was pumping milk.  I gave some breast milk to Matteo too. I tried to make sure that everyone had something to eat. Then I have third older kid that I was trying to normalize too.

It was crazy with the panic attacks. I couldn’t leave the house.  I couldn’t do anything. I couldn’t even go for a walk.  I needed to make sure the door was there and my car was close by.  My husband didn’t understand it.  You feel like you are dying. We had to go to the United States and for some reason the panic attacks kicked in.  I had to stay in the car. I couldn’t walk.  It was so overwhelming.  There is no way that you can fix it. People say that it is in your head but no it’s not. It’s like an hour glass full of sand and it’s going to overflow. Where the hell is it going to go? It has to go somewhere.

I think when Nicco got diagnosed I was done. It took me about a week to figure shit out and get my act together. I got up and carried on.  You don’t know how strong you are until it is the only choice that you have, right? Pick a day, break down and do your thing and then get back up and truck through it.

People say, “Oh you are so strong, how do you do it?” Well, you know you have two other kids that are dependent on you so I don’t think that you have a choice to curl up in a little ball and forget life. These little humans are trying to look up to you. You don’t have that choice. I gave myself a week with Nicco. It was hard because as soon as I got there everyone is bawling because they had known him since he was born.  They were devastated at the whole situation. I said “There is no crying here.” The boys have never seen me crack or shed a tear. I always had it under control.

Looking back, it seems very surreal. I remember being in some articles in the UK. Matteo’s in some articles.  I remember having to write and reread them.  It was horrifying. This isn’t my life. You live in that fight and flight for so long. It doesn’t stop when you are done. I was one on one with a kid for 3.5 years and then I was one on one with a kid for another 3.5 years.  Now I have three children and they might all be in the same room but try that after having to be one on one for so long.  .

I didn’t want to scar them. That is what I worry about.  If I make this decision, how will it affect them as an adult?  I have scars from shit that my mother did. You remember so much and that affects the person that you are. You don’t realize that your parents are not super human but then you become one and then you realize they are human just like we are.

Matteo still battles many of the side effects that the chemo and radiation caused. He has nerve damage to fingers and feet, drop foot and damage to his right leg, heart damage and a hernia. Another huge side effect can be another type of cancer …. It’s just crazy and the worry never ever ends. For now, he breathes and is happy and relatively healthy so we will take that and enjoy every waking second with him. Never even sweat the small stuff and never ever give up hope!

 

[marysue]

Hi Petra:

I’m so sorry to read about your husband being diagnosed with bladder cancer.  I was diagnosed with bladder cancer in 2008 and again in 2010.  I had follow up BCG after the TURBT (Transurethral Resection of Bladder Tumour) surgery to remove the tumours.  I have been clear since the fall of 2010.

As you already know, the route to be taken post op will depend on the biopsy results from the tumours that will be removed at that surgery.  The results generally take 10-14 days to come back.  What I tell people who are really anxious is that the TURBT surgery at the very least slows the cancer down if it doesn’t get it all.  Once the results are back you and your hubby will know whether there will be follow up BCG treatments or bladder removal surgery is the next step.  The “best” news a bladder cancer patient can hear outside of “all clear” meaning no cancer, is “low grade, non-muscle invasive” which is slow growing early stage cancer. If it is as you have mentioned already in the bladder wall then that is more serious. The journey with bladder cancer is often described as an emotional roll coaster because of all the stages involved with treatment.

For the TURBT (tumour biopsy/removal surgery) your hubby will be either given a general anesthetic or an epidural.  I had a general both times.  The surgeon will insert an instrument similar to the cystoscope up his urethra and the tumours will be cut out and the wounds cauterized to help prevent bleeding.  The surgery can take 1+ hours depending on the situation.  Once the surgery is done, like his other surgeries he will go to the recovery room and then once stable will be admitted to his room.  Doctors vary on their post op protocols.  Some of these surgeries are done as a day surgery, other patients are admitted for a few days.  I was kept in overnight both times.  He may or may not go home with a catheter in.  My catheter was removed early the next morning and I had to be able to pee well a few times before being released.  If he has to go home with a catheter in, he will be given instructions on when to return to have it removed.  Pain level post op varies.  Most people need to use a pain killer post op for several days.  He may be given a post op antibiotic to prevent a bladder infection.  I was given scripts for both.  I took the antibiotic as prescribed but extra strength Tylenol was enough of a pain killer.  I didn’t need the script.  If he has the catheter removed before going home, the main key will be to drink a lot of water and not push to go.  Let the bladder fill naturally.  There may be some bladder urgency or spasms.  There is medication for that if it becomes an issue.  I was lucky I didn’t have to deal with that.

The other things post op are:

1) It takes about 4-6 weeks for the wounds in the bladder to heal over so he shouldn’t do any heavy physical work during this time.

2) Make sure he asks about when it is safe to go back to work, have sex, start driving again.

3) Drinks lots of water.  I strongly recommend staying away from caffeine.  A lot of us have found that caffeine irritates the bladder and avoid it post TURBT and during BCG treatments.

4) Rest as needed.  Exercise with short frequent walks, increasing the distance as able.  He will feel fatigued for a while post op.  I needed about a month to recover from each of my surgeries.  Some people need less.

The BCG treatments which are usually once a week for 6 weeks and some people have follow up sets of once a week for 3 weeks at 3,6, and 12 months after the first set of 6 and have cystoscopy checks in between treatment sets.  The nurse instills the drug into the bladder via a catheter.  Your hubby will hold the drug in his bladder for about 2 hours unless instructed otherwise.  He may or may not be instructed to lay down while he has the drug in his bladder.  When I had my treatments the protocol at the time was to lay down and turn over every 15 minutes to ensure the drug covered all areas of the bladder wall.  Some doctors now say that regular movement is enough.  Personally, I could not have done that because I had bladder spasms when the drug was put inside me.  A hot water bottle or heating pad works wonders for that. You do not have to quarantine for hours during treatments.  What you do have to do is ensure that he not use a public toilet for at least 6 hours post treatment as there is a very low risk of transmission of BCG contamination.  It is best to remain at home for the next few hours and if possible let him commandeer a toilet if you have more than one bathroom.  After he voids the BCG out and for the next 6 hours he will need to put a cup of bleach in the toilet after each void to kill the BCG before flushing.  Put the lid down when you flush.

The usual side effects from BCG treatments are flu like symptoms of headache, chills, muscle and joint pain and fatigue.  Some people do get bladder irritation and pain if the BCG inflames the bladder wall.  Some people get bladder infections after a cysto exam or BCG treatment because their bladder can’t handle the constant intrusion very well.  If he does develop an infection he will need to treat that infection first and temporarily suspend the BCG treatments for a week or two because antibiotics kill the BCG rendering the treatment useless.  If you hubby does have to have BCG treatments make sure that you and he know who to call and where to go should he have a serious reaction to the drug.  Unfortunately there is no way to tell ahead of time how a person will react to the treatments.

The big thing with BCG treatments is to drink a lot of water post treatment and for the next few days to flush the excess drug out of your system.  Peppermint and chamomile teas are bladder friendly.  As mentioned many of us find that caffeine irritates the bladder while doing treatments so we avoid it.

If your husband is diagnosed with muscle invasive bladder cancer the usual treatment is bladder removal surgery.  Some patients are candidates for bladder preservation which is a regime of chemo/radiation but there are criteria to be met to be a candidate for this option.  That is only something that his surgeon can determine.  If he does have to have his bladder removed there are different surgical options for having an outside urinary pouch, an internal bladder called a neobladder and the third is called an Indiana pouch which is an internal pouch that you drain with a catheter.  Not all patients have the option of all options.  It depends on their situation and that requires a detailed discussion with the surgeon.  As another aside some patients that are having their bladders removed are also recommended to have a regime of chemo prior to or after the bladder removal surgery.  Again, this would be a question to ask his doctor if this is a necessary step for him.

There isn’t any specific diet to prevent bladder cancer but many of us have done the following because it is healthier and there is some unsubstantiated research that suggests it may help:

1) Green tea contains antioxidants which some research claims it helps prevent cancer.

2) Increase consumption of fruits, veggies, whole grains.  Some unsubstantiated research has suggested that cruciferous veggies like cabbage, broccoli and cauliflower contain compounds that may help prevent bladder cancer.

3) Cut out as much sugar as possible.

4) Cut out processed foods and foods containing preservatives.

5) Cut out processed meats like hotdogs, bacon and avoid charred meats from the BBQ.

6) Increase vitamin D.  Many of us take about 2000IU per day.  The extra Vitamin D will help with the effectiveness of BCG treatments if he has to go that route. Many cancer patients are low in Vitamin D

As for using CBD oil, I would check with the doctors first to make sure that it won’t conflict with BCG or any other meds he may be prescribed.

I relied on acupuncture and yoga to relieve my anxiety and going for long walks.

Once you know which route his post TURBT journey will take, I strongly recommend calling the toll free number at Bladder Cancer Canada and leave a message asking to be connected to a peer support volunteer either for support re BCG or bladder removal surgery.  A person that has been down the road he will have to walk down will be a valuable resource to talk to and ask questions.

I apologize for the lengthy reply but I hope this information helps get you started.  Please feel free to reach out to me or anyone else on the forum.  Keep the questions coming.  No question is a dumb question.  Learning about bladder cancer is a steep learning curve.  Take care and all the best.  ((((HUGS))))

[Nightingale]

Mike was away at a course in Toronto and he called one evening after his course was done and said that it burned when he peed. I said “Oh no, it sounds like a bladder. As soon as you get back you will need some antibiotics likely.” So in typical male fashion he didn’t elaborate about quite exactly how much pain that he was in.

At the time we were living in two locations because he had just started a new job in Cornwall and I was still trying to sell our house north of Kingston. This is a two hour drive. So we decided that we were going to see each other on weekends. One weekend I’m going to Cornwall and the other weekend he will come back home.

He comes back from his course and goes to a clinic here in Cornwall.  They say it is probably a bladder infection.  They give him some antibiotics and we’re supposed to live happily ever after. So he takes his antibiotics and isn’t getting a whole lot better. So I come that weekend and his version of pain when I pee and my version of pain when peeing are totally different. He was doubled over.  I said, “Honey, that isn’t a bladder infection.”

I hadn’t heard anything about bladder cancer at this point in my life.  I didn’t know that such a thing existed.  But I knew that it was more than a bladder infection so I took him to Emergency here in Cornwall. They insisted that it was a bladder infection and gave him a different kind of antibiotics. A few minutes later I go back. I am the type of person that will push.  I said that he needs to see an urologist now.  I know that it is Christmas but I don’t care about that.  Get him in here now. So in comes the urologist who is, I don’t know maybe about 80 years old, I’m not exaggerating.  He checks him out and said that they will do a CT scan. They do a CT and it comes back with a thickening of the bladder wall. I don’t know what that means at that time either but I know that that can’t be good. I really think that you should do a cystoscopy.  I know enough to ask for a cystoscopy. So he does one and comes back and says his bladder is beautiful, that’s not what it is.  Thank you, have a nice day. Here are some pain pills, go home.

Now it’s December 31st and Mike is in excruciating pain. Mike has a pain tolerance like no one I have ever seen so if he is complaining I know that he is in excruciating pain.  So I tell him that morning that we are going now to Ottawa.  We’re not dealing with our rustic little Cornwall hospital. We’re going to Ottawa where they have a real hospital. I’m pressing him because it is New Year’s Eve and I’m telling him that it will probably be about 15 hours before that we will get to see somebody. Patience is not his strong suit but I tell him that it is important and we have to do this. We get to Emergency and I literally drop him off at the door to go in, and go park the car. By the time I go back in, he is in already. There was nobody in Emergency.  That never happens in Ottawa. There was one person there besides him.

We had the most phenomenal emergency doctor that you could ask for. He was awesome.  I told him the history and what had gone on.  He said that that he didn’t know what it was but it isn’t a bladder infection. He said that he was going to call Cornwall and talk to the urologist and ask if they took a biopsy. The doctor on the other end said no. He’s not a happy camper.  He’s not getting the answers that he wants.  He said, “I don’t like the answers that I just got.  I’m going to call our urologist on call.” The urologist on call is a uro-oncologist and ended up being Mike’s doctor. He talks to him and says that he needs to see him in his clinic.  At least they got Mike out of pain. They are checking everything.  They take a look at the CT from Cornwall and they see the thickening of the bladder wall. No one likes any of it.

We see the Ottawa uro-oncologist on January 13th.  He wanted to do another cystoscopy because he isn’t convinced that Cornwall did what they should have. The resident indicated on first glance, the bladder looks gorgeous and can’t ask for anything better but he is confused because it shouldn’t be.  He said that he cranked the camera looking for a tumour somewhere but couldn’t find anything.  It was bugging him. He decided to let some of the liquid out and a little wee flap opened.  Inside that flap is where he got to take a scraping.  He said that it was bladder cancer but not normal bladder cancer. That’s all he knew at that time. He had never seen it.  He is a resident so I’m assuming that can happen.

We get to see the uro-oncologist.  He says that this is very serious.  It is definitely bladder cancer and is not a good kind.  However because Mike is healthy otherwise they think that he is a good candidate for a neobladder.  This is where we find out what a neobladder is. A neat concept, I didn’t know such a thing existed.

Because of the type of cancer, and knowing that it is not good, he presents Mike’s case to the tumour board.  Ta Da! You are scheduled for a radical cystectomy February 29th.

What is a radical cystectomy?  We are literally thrown into this. The bladder has to come out.

We have no idea of what any of this is. I go into full research mode. At the same time we have so many appointments. You don’t have that much time. It is a little too fast if you ask me. In hindsight it is wonderful and I have lots of things that I would share with doctors and patients of things to do and not do. Before you know it, it is February 29th and he is having a radical cystectomy.  I find Bladder Cancer Canada after he has had his bladder removed.  So I don’t have the bonus gift of talking to someone before-hand . That is when I get to talk to Greg from Bladder Cancer Canada.

At the beginning I had no idea.  Mike has his RC done.  They take out 16 lymph nodes, and his prostate. They do what they call “the wonderful nerve sparing technique” but it doesn’t work.  It is very fluffed over in the conversation.  If I’m a guy I don’t think that they should be fluffing over that as it may make a difference to the type of diversion hey choose especially if you are a horny guy.

So anyway, it is a 10 and a half hour procedure. I gather it is partially because of where it was.  The reason they couldn’t see the tumour because it was on the back of his bladder.  It was the size of a hockey puck.  For him to not have any other symptoms before that is bizarre. He didn’t have blood in his urine. Not even a drop, even when they did the test to see if there was. So there goes that theory of “See red, see your doctor.”  It didn’t work in his case.

He was doing relatively well post-op at the very beginning, but then he wasn’t doing so well because he couldn’t deal with the pain medication. He was in a significant amount of pain.  When I brought him into the hospital he was 217lbs.  When he left the hospital which should have been 4-5 days later but ended up being almost a month later he was 167lbs. That is how sick he was.

He had early daytime continence but nighttime not so much. The 2-3 hour time window is brutal both for the patient and caregiver.  You have to wake yourself up so that you don’t make a mess. You’re waking up about every three hours. Everybody is exhausted because nobody is sleeping. It’s not the greatest thing.  It took him a very long time to get some semblance of night continence.

Everything seemed to be progressing not too badly. Now we are into April 2012, and he isn’t feeling too well again. I brought him back to our home in Kingston. His nurse came in and he was cold.  I thought he had a fever and I didn’t like what I was seeing.  The nurse didn’t like what she was seeing either so it was off to the hospital by ambulance. He had some sort of infection and was on heavy duty antibiotics. This was Thursday. He was doing well by Saturday and they sent him home.

On Monday morning he was so cold. He was freezing.  I could not get him warm. Luckily I had made friends with all the doctor’s assistants. They are the ones that have pull.  I called our doctor’s assistant and said that we were coming to Ottawa, meet us at Emergency. I put him in the car and put I don’t know how many blankets on him and I drove like a bat out of hell to Ottawa. We got him in.  He had e coli everywhere; in his liver, his blood, in orifices.  So into the hospital we go. He was in hospital for another 3 weeks.

He got better and better.  He was 3,6, then 9 months clear.  We were doing a dance of joy.  He was getting stronger and thought he would be going back to work in October.  In July 2012 we were looking at houses in Cornwall. Everything is good.  Mike is a building inspector by trade at the municipal level.  So he was going to do the inspection on our house and we had a plan to close on the house for the end of August.

On the morning of the inspection he doesn’t look that good to me. I don’t push him too much but I do ask how he is feeling and he says not that bad. He doesn’t seem quite right to me but I let it go.  He does the inspection but not the typical Mike inspection at all, so I think there is something wrong.  We left and went my sister who lives about an hour away. He’s not doing too well. I think he has a fever and we go back to the hospital.  Sure enough he has a fever and he had another infection. Not e coli this time, I don’t know which one it was but it was serious so he got admitted again.

While we were in the hospital we finished the buying of the house and the other house wasn’t sold yet. We were thinking that this was wild and crazy but we got a call from the real estate office about an offer on our house. We did all this from the nurse’s station and they are laughing their asses off with us. By then we had been in the hospital so many times so they all knew us. There was a really young nurse who asked “Is your husband famous?”  I said “No, why?” She said all the nurses are coming in to give him a hug.  I said “No, it is because we have been here so many times, they all know us.”  I thought that was just priceless.

So now, it is July, the infection clears up and he comes back home.  We get the new house and he is doing so well that he even does some renovating.  We think for sure that he will go back to work in October. Then comes October (2012) but he isn’t feeling good enough yet for work so we decided to put that off until December.  It’s not the end of the world.  He needed a little more time to recoup.  That’s all it is.  It was a big operation and you’re dealing with the no sleeping so I don’t think it is very uncommon that you would be a little tired.

Mike and I laughed through this whole thing. That was our thing. We joked as much as we could. We laughed at everything that we possibly could because the alternative sucked to be honest.  We were both very outgoing and funny people so we just chose to laugh. Without that he would have been dead a lot sooner and I would have been dead too. Some of it is funny.  “How many times are you going to cover up that penis, honey? Like everybody on this floor has seen it.  Let it go, don’t worry about it.”

In December he isn’t feeling so good. We like to spend Christmases at the hospital. So back we go…He is complaining of a pain just above the hip bone on his left side.  He said that it is always at the same place and feels like it is very deep inside. It really hurts.  I say that we need to go back and see the doctor.  We call and go.

They did every scan known to man.  They did everything that they could possibly do.  They told us there was nothing there. I said “There is something there doctor, I’ll guarantee it.”  He said that he believed me, but the scans showed nothing. The pain didn’t go away.  It was always in the exact same spot. That’s why I knew there was something.

So we go in December, January, February, and still nothing. We go in March 23rd and there is something. Now, I know what I’m expecting but Mike isn’t expecting anything.  He is sitting on the little exam table and the doctor says, his exact words, “We are in an incurable situation.” Mike’s not getting it. Now, Mike is an intelligent man but he said “What does that mean?”  I already know what it means but unfortunately his doctor’s answer was a little curt and he isn’t the type to normally be curt, I found it odd, but I don’t think he recognized that Mike wasn’t getting it. So his answer was “Well, I guess 4-6 months.” Mike really still wasn’t getting it but I was fully getting it.

 

I said, “How the hell is it possible that there was nothing there, and now we are in an incurable situation?” He said, “This is where the plasmacytoid variant comes in.  The plasmacytoid variant apparently hides on scans. It has the ability to mimic things.”  I said, “How do you do a bone scan and tell me that there is nothing there and now you’re telling me he has a tumour in his pelvic bone? I don’t get that.”  He said it is because the tumour is eroding the pelvic bone so it is sitting right in it and the bone scan sees it as bone.  Plasmacytoid tends to hide on scans quite nicely which is why probably Mike’s original tumour was able to grow so big. So I knew by then plasmacytoid variant is very rare and I’d been able to find cases in literature maybe 100 cases in the world. I said to “Am I out to lunch or is it that rare?” He told me that he had seen 4 cases in his career and he has seen about 1 million patients so that is pretty rare.

So at that point if 4-6 months is the true reality I asked “Will he be able to do anything in that 4-6 months or will he be as sick as a dog?”  Mike was in quite a bit of pain so that was the main focus to get him out of pain. So, they sent us to radiation land next.  You have to understand that Mike was the type of guy, who the entire time I knew him, if he ever got cancer he was never having chemotherapy or radiation until of course then he got cancer.

Radiation was to be for the pain and to him that was a different reason so it was okay.  I had had this discussion with him many times.  I told him that I could empathize, sympathize but I sure as hell could not know what it is like to be told that you are dying from cancer. I said that we will do whatever you want, is the bottom line. This is to me where the “death do us part” comes in. This is what it’s for.  I said you tell me what you want, not the other way around. Do I want you around for the next 50 years? Yes, please!  Is it going to happen? Not likely.  So, what are we going to do to get you out of pain?  So we went down the route of having radiation.  It helped only slightly. By then it was pick any drug to get out of pain.  Percocet seemed to be the best of all the pain drugs at that point.

Then we get to the point that the pain is unbearable and he gets sent to pain management at the Ottawa hospital. We’ve got a lovely gang there. We go one day and he was just awful in terms of pain. In terms of 1-10, he was maybe 57. So the doctor gives him an injection of Fentanol.  It does absolutely nothing.  It doesn’t even take the edge off.  He looks at me and asks “Is he for real?” He decides to give him a second one and it still did nothing.  He said that he had never seen that in all his years of pain management. It did nothing.  He might have just taken a Tylenol.  So they’re trying all kinds of things.

Meanwhile back at the ranch, his doctor is in another surgery with an anesthesiologist who works in the pain management clinic and they are having a discussion about Mike. He says maybe we should try an implanted epidural because all of his pain is in his pelvis. In June he goes in and has the implant put in.  For the first time in six months he is out of pain. So he is doing the dance of joy.  He wasn’t feeling 100% but he wasn’t doing too badly.

This was not for long.  After this we are talking about doing chemo.  We were going to see the chemo doctor to see what this is all about.  The morning that we were supposed to go in Mike’s left leg was very swollen, like to twice the size of his right leg.  We were going there anyways and I asked the nurse assistant, “This can’t be good. Should we do something about this?” She said that they would send him for a CT.

They sent him for a CT.  We were supposed to meet with the chemo doctor but it got sidetracked by this whole leg thing. They didn’t know what it was and decided to admit him. The leg eventually grew to three times the size of the right leg. It was because the tumour was pressing on everything.  Nothing was draining. Nothing was working right because of where the tumour was.  He wasn’t doing so well so they decided to hold off on the chemo. They decide to send him home.  They got it under control somewhat. He was on diuretics.

He could walk but it was tough.  By August he was using a walker and he was falling.  The leg swelling wouldn’t go down. Now he had fallen more than once and I put the brakes on and I said, “You can’t walk anymore.  I’m sorry. It is too dangerous.  You’re going to fall and hurt yourself badly and break something and then I won’t be able to keep you at home.” Our deal was that I would keep him home until the very end if I could. He did everything that they told him; sit on the side of the bed, tap your feet 1,2,3.  He did have one really bad fall.  His leg just let go. He did fall in the bathroom and hit his head on the toilet so that is when I put the brakes on.

So we decided if he wasn’t able to walk we would get a hospital bed and put it in on one side of our master bedroom.  We have nice big bright windows.  We live in a really pretty area.  I knew at least he would be able to see outside.  By then I couldn’t get him down the stairs. This is where he was going to be, and it has to be beautiful as it can be since he would be lying in a bed. This was August. The doctor had said 4-6 months. So six months would be about mid-September.  Mike swore that he was going to live more than six months. He did. He said it.  From the end of August to October 15th when he passed away he was in a bed that entire time.

It’s funny the way that happened.  Mike died on the Thanksgiving weekend.  He went into a coma on the Thursday before the long weekend. We had the palliative care doctor coming to the house. We had a team of nurses that we called the “S” team because they all had first names with an S.

Then his doctor came on the Thursday and I said “This is not good.” At that point Mike had not eaten anything for 11 days and not had any water other than the little sponge thing that they wet your lips with. That was all that he had had for the past 7 days.  They said that he would likely be gone tomorrow.  I said “You obviously don’t know Mike.” I called Tuesday morning and said that Mike needed his bed changed and the nurse came that day. I said that he was waiting for her. About a half hour after she was here, a baby hawk hit the front window and died.  Mike adored hawks and wolves and I said that Mike was going to die today. That was about 9:30 in the morning and he died at 2:51PM.  For a hawk to hit a window is rare.

There were so many coincidences that day.  There was so much movement here between the nurses, visitors and PSWs.  He waited until there was just me, my sister and my mom.  My sister went to take a shower.  I called her and said that she needed to come now.  She came in and we sat the three of us around the bed. He took a deep breath and let it out and I thought that was it. I was crying.  I was wishing him well and to have a safe trip and then he started breathing again.  I hit him on the arm and said “That’s not funny.” He did that three times then he was gone. It was as peaceful as can be.  He waited until it was just the three of us.  That’s what he wanted.

I had tremendous support from everyone.  We had just moved here and didn’t know anyone.  When our neighbours heard that he was sick, it was just beautiful.  That was the best way to describe it.  Another neighbour also named Mike mowed the lawn every week for that entire time.  Neighbours across the street brought food I don’t know how many times. She would bring soup and send her daughters over with cake and pies and cookies.  It was just phenomenal to me how welcoming people were when they didn’t know us.

It was truly amazing.  He had only worked for the city of Cornwall for five months before he got sick. The worst part was that he absolutely adored his job.  I had never seen him so happy in a job.  His boss was just phenomenal.  Chris came to Mike’s send-off (as we called it, since he didn’t want a funeral) with a hardhat from the City of Cornwall and put it next to Mike’s urn. That was too cute. Mike would have been over the moon with that. It was just all these nice things. I couldn’t talk about that 3 years ago but I can now.

What I would have appreciated knowing was what we didn’t know because we had to make the decision quickly about the diversion.  I honestly think if we knew then what we know today he wouldn’t have had the same diversion. They really downplayed a couple of things.  They really downplayed the loss of sleep and the impotence. It was sort of brought up.  It was “You’d better use it or lose it” was kind of how they framed it.  Here’s some Cialis. That’s great, but he’s got an infection from hell. He has no weight on him.

He has no oomph but he may be horny.  Apparently that never goes away with men. But you know he wanted to, but he didn’t have it in him.  He had the nerve sparing technique but I don’t know which nerves it was supposed to have spared, but it didn’t spare it. So now we’re adding frustration because I think you have unrealistic expectations from this gentleman. He has to be able to get it up and I’ve got news for you, he can’t.  From a wife’s perspective I couldn’t have cared less about that. It made no difference to me.  I was so focussed on caring for him, that whether he could get it up or not didn’t really come into play. For him, it was one of the most devastating things.

Similarly with any of this, I’m a bladder cancer expert because I had to live it but can I tell you what you should do? No way. Even with Mike, I probably could have tried to convince him to maybe go with a different diversion if I’d known about it.  But I bet that I wouldn’t have been able to because he was so convinced that this neobladder was so cool. Just the fact that he wasn’t going to have to have a bag, to him was the be all and end all. If he was going to have to have bladder cancer this was the bonus gift of it.

His bowels were causing all kinds of problems. He had developed a fistula between the bowel and the bladder.  Mike was very delirious from having too much serotonin from all the happy pills they were giving him.  He had what they call serotonin syndrome which is something that one of the pain management doctors recognized when I said that they increased his meds and now Mike wasn’t making any sense.

He was totally incoherent. They took away a few of his medications. Then they told me that they could operate and give him a full colostomy.  I said I didn’t feel comfortable making that decision because I wanted him to be coherent.  That when things were really yucky.

We were on the oncology floor. We had an oncologist there who wasn’t our regular oncologist.  I kept saying, “Has anyone talked to Dr. _____?”  They looked at me like I was from outer space. “What does he have to do with this?” I got angry at this point and say that they’d better start looking for Dr. _____ or things are going to get ugly and a few minutes later in thunders Dr. ____ saying that he heard that I was looking for him.  I said that they want me to make a decision about a full colostomy. Dr. _____ said it wasn’t that urgent and the surgery could wait a few days. It wouldn’t make any difference.

I asked him what he would do if you were in that bed and I’m your wife.  What would you tell me to do? He said, “I wouldn’t have chemo, surgery or a full colostomy.  I’m going home.” Okay, that’s what I wanted to know.  I called our family doctor whom we trust implicitly. I gave him the same scenario and he said almost the same thing word per word.  The next morning I get there and Mike was perfectly fine and back to 100% Mike. I decided to take my chances and explained to him what had been going on for the past several days while he’d been out of it, and gave him what the options were. We talked about it quite seriously. He said “I don’t want to have any of this.  I just want to go home and have coffee and mini wheats.”

We came home. We did everything we could here to make him comfortable.  I sent out an email letting our friends and family know that Mike wasn’t travelling anywhere. If you want to see him you have to come to Cornwall.  At some point we had 12 people sitting on our king size bed chatting with Mike and laughing.

That is the feel good part of the story. People did come. He couldn’t have been more surrounded than he was.  If you have got to die, he did it on his own terms as he got to die at home.  Some people have asked me if I find that weird or scary.

 

I told everyone when we went to do the “Send Off” and if I came back from that feeling dizzy the house will go up for sale, but if I feel comforted I will stay.  I felt nothing but comfort when I got home so I said I’m staying until I decide.  I’m now putting the house up for sale because it is getting too much for me, not because of memories.

The first six weeks after Mike passed away you would have never known that he passed away because I was so busy and so focussed on organization that I wasn’t grieving.  I was so upset with myself because I wasn’t crying. I was nowhere near what I expected to be basket case wise.  Come January it was very different. I crashed.  I really didn’t know what to do. I went to “Bereaved Families of Ontario”. I ended up going there in April. They had a 6 week course specifically for people that had lost their spouses.  I had asked at the time if they had anyone in my age range.  I was 45.  The challenges of a 45 year old widow are very different than an 80 year old widow particularly a 45 year old widow who is already ill.

It is more difficult because I can’t predict when I’m going to be well.  Grieving and bi-polar don’t go very well together.  I didn’t know if I was in bi-polar depression or was I grieving.  I didn’t know the difference because they are virtually identical.

That is why I went to this course. I thought that they would give me some sort of insights that I need.  There was this poor girl that cried the whole way through.  It ended up being a very good thing. I felt so bad for her.  She was around my age. The first week was kind of boring and it didn’t meet my expectations but I thought these people are volunteering their time and you committed to the 6 weeks so you should go the 6 weeks. I decided to go back. D had told herself the same thing.  I was having a rough night and cried the whole night through and she was fine.  At the break away session she asked me if I was okay and I told her I was having a rough time.  We started talking and sat together for the next 4 weeks and have been good friends ever since.

Our stories couldn’t be any more similar.  We can’t believe that we didn’t meet before in Ottawa. Her husband had the same pain medicine doctors. They went back and forth like we did. Mike died October 15th, her husband died September 1st. Everything that you could possibly imagine that was similar between the two of them was. We felt that we were meant to meet.

 

 

• This topic was modified 3 years, 1 month ago by Nightingale.

[lefmike]

Hello everyone who has been following my bladder cancer journey and to those who are new here.

Well my 5th month post op from my radical cystectomy is coming this week and I thought I would bring those interested up to date on my progress.   AS some of you know, it was pretty tough at the start, losing 30 pounds due to no appetite and general feeling of weakness and unwell and wondering if I would get it all back.  I got through it,  maybe not as fast as I had hoped but it did.

I chose the urinary diversion with a stoma and outside urostomy bag as I thought I would not be concerned all that much about body issues, there are times where I wonder if I made the right choice.  I have had some leakage issues at the beginning and my skin at times was not accepting the tape that holds the bag and flange in place and I was getting blisters and sores which were made worse with the leakages and then irritation and itchiness formed.  It took a few months but with the help of ostomy nurses, my wife and I with trial and error finally got to the point that I can wear my appliance without leakages for the 3-4 days they recommend.

They say that a Urinary stoma diversion is not for everyone and I now believe that,  as much as I’m not the type to go around without a shirt  I’m still very conscious of the bag and concerned someone other than family can see it.  So to those in a position of deciding on what to get, the Stoma is a bother in some ways, and I have had second thoughts about it but I hope eventually it becomes second nature to me, but right now it isn’t and I wonder if the outcome would had been better had I gone with another diversion method  but those also have their drawbacks so who knows.

My recovery had its difficult periods initially,  I had major constipation issues and I was up at all times trying to walk to get my system working.  The pain and discomfort from the constipation was very aggravating at times,  but many people here had such good ideas to relieve those issues and I tried them all and eventually the plumbing started working a bit better, so there is again hope for those in my situation.

The first 3-4 months post OP, I was very cautious about not veering too far from home but I was walking every day and increasing my distance over time.  Initially I was lucky to walk down the end of our driveway and back, then up the street  then around the block  now I’m walking 3 miles a day religiously,  before the surgery  I maybe walked one mile a day  so this was a major improvement for me.

We’re back at our Winter home in Florida now, as soon as they opened the border my wife and I were outa here ,  I’m still walking my 3 miles daily but finding I’m eating a little more than I want,  I’ve gained back about 5 pounds of my loss  and I don’t want it back, but really my life is getting back to normal.  There is not much I can’t do now that I did before,  before my surgery I had to be careful because all the TURBS I had (6)  and  the instillations of BCG ( 9)  BCG with Interferon (9) and (6) of Gemcitabine, I was always having to be near a toilet because when you had to go you had to go FAST…   Now I wear my bag and I know pretty well how long I have until it needs to be emptied,  I never pass a washroom without feeling the Urostomy bag and if I feel any urine I empty it  just to be on the safe side, visiting friends is still an issue, I do still have trouble with visiting just because of fear of having a leakage but those fears are slowly starting to leave me.  Anyway  I don’t want to bore you with the nitty gritty of what its like having a radical cystectomy,  just know this,  its a major procedure, you will feel as if you have been beat up pretty bad the first 2-3 weeks,  but you will survive and you will get better, Just remember that!

With Christmas and other religious holidays soon approaching,  I want to  everyone a wonderful holiday,  and an exceptionally happy and HEALTHY 2022.

For us, we’ll be flying back to Canada just before Christmas day to be with our family especially our grandkids , then I will be having CT scans, blood test and a visit with my urologist  then back here to the warmth.

All the best to everyone, and to some of you friends who are having surgery in the near future, my thoughts are with you and I will be sending you positive vibes, prayers and best wishes.

 

Mike

[Nightingale]

I’m newly diagnosed with bladder cancer and will be having a radical cystectomy surgery in the future. What do people do to deal with the seemingly interminable wait to find out whether chemo will be needed or whether it will just be surgery? I wasn’t told the grade or stage, but from what I’ve seen on the Bladder Cancer website, I’m thinking that it’s probably Stage 2 or 3.

I have an abdominal-pelvic CT scan this coming Friday, and I don’t know whether the contrast dye will be through an IV or if I’ll have to drink it.

I thank the folks at Bladder Cancer Canada for their kind advice. I wouldn’t have thought of, or had the nerve to ask for a copy of the pathology report. (It does clash a little with my family’s tendency to embrace denial and “ignorance is bliss.”)  Fortunately thanks to the TV ads advising seeking medical help at signs of blood in the urine, I  went to the emergency department at our local hospital the same day I experienced this.

I’ve been referred to a doctor at Sunnybrook, but his office is closed until Aug. 4 and I’m hoping/praying that they will be contacting me soon. According to the uro/surgeon I saw here, the surgery will be done at Sunnybrook. Both my and my husband’s families live in Toronto, so I ‘m glad the surgery will be there.

This all started June 8.  I’ve had the TURBT and a thorough CT scan will be done on Friday, so I guess it’ll be another week before I even get a call for an appointment with the doctor at Sunnybrook.  If he’s that popular, I’m afraid it will be September or later, and by that time…well… I don’t even want to think about it. I really want to be at Sunnybrook.

My family and I have a long and sad history of being dusted off by members of the medical profession, so I have a hard time believing that they see patients as anything more than billable slabs of beef.

I recently watched a learning video on the Odette Centre’s web site. A doctor was giving a talk/lecture on the topic of bladder cancer treatment. He said that the “gold standard” for treatment where an RC was indicated was chemo followed by surgery. Just still trying to anticipate what may happen.  Quite frankly, at this point I still know nothing more than I did 7 weeks ago.

On June 8, I was told it was likely bladder cancer. On June 22, after an ultra sound and CT scan I was told it was definitely bladder cancer. I had a TURBT procedure on July 8th. On July 25th, I was told an RC was necessary. I wasn’t told the stage or the grade, but I’m assuming Stage 2 because of the RC. There was mention of a referral to a doctor at the Odette Cancer Centre. Just still trying to anticipate what may happen. I guess I’m wondering if any chemo besides the BCG is ever used?

I suppose because of vacations, that’s the last I’ve heard. I emailed the doctor’s office at Sunnybrook this morning and had to send a fax to the urologist as his office is closed until Aug. 15. His secretary may or may not be there. So far, I’ve been given no idea of when I will be given an appointment with a surgeon/oncologist who can tell me what kind of treatment should be begun or when.  The waiting is the worst part.

Maintaining a positive attitude is now impossible for me as I just don’t know when to expect any kind of help. I’m afraid to start looking at another hospital as I’m afraid the whole process would have to start again from square one.  I know Toronto General Hospital won’t accept an ultrasound from another source, and I’m afraid they’d be the same with CT scans.

I’m desperate for encouragement. Is this kind of wait time normal? Am I being unrealistically demanding – that is certainly a possibility – I’ve just run out of coping mechanisms. Perhaps I’m a victim of vacation timing, and I wouldn’t deny these doctors a vacation. Sadly, I am a coward and am very bad at being assertive.

Every doctor I get referred to is on vacation. So, wait, wait, and wait for a phone call. Now I’ve been told that I have to see a Medical Oncologist to get an opinion on whether or not I need pre-op chemo. And the doctor I was specifically referred to is on holiday until Monday. And even then there’s no guarantee when he/she will be available for a consultation. I asked how long it’d probably take to actually get an appointment and was told about a week. So, next week or the week after that?

I asked if the nurse if chemo is necessary, how long would it take for the treatment to begin.  I was told it depends on the method of delivery. I’m very frustrated.  It’s been over two months since I was told it was highly aggressive BC, and STILL no treatment has begun. There is STILL no date that anything will begin or be done.
Still waiting to get the pathology report in the mail, but now I’m afraid to open it.

FINALLY…I have just received word that I have been given an appointment at Sunnybrook for this Thursday. I know it’s really just the first step, but it’s a step I feel like I’ve waited an eternity for.

I met with my surgeon and some of his team yesterday. After the meeting and discussions, I felt incredibly lucky to have been referred to him and to be having the surgery at Sunnybrook.

My surgeon certainly favours the neobladder. I realize that it’s ultimately my decision and I have read and reread posts on various sites about the neo and the IC. It always comes down to the fact either way the final experience is very much each individual’s own, and there are positive and negative stories for each.  Most people are happy with their final decision. That being said, a big part of me thinks that if the surgeon is so pro-neo, then I should go along with his decision. I just don’t know if reading any more conflicting reports is going to make the choice any clearer.

I am thrilled beyond belief to say that I finally got a date for my RC and neo surgery…. September 21. I can’t begin to describe the amount of stress that has disappeared from my life.

My problem is that I am the wife, and I worry about what kind of home support I’ll have.   My husband doesn’t really want to give me any input on the choice of diversion. He says, “It’s your body, your decision,” and “Just tell me what to do and I’ll do it.”  Honestly, he’s a good person, but I think he’s just scared and this denial is the only mechanism he knows.

My husband and I had what my sister-in-law would have called a “domestic”. The result was that we had a long discussion and he said that he would be OK with learning/helping with my self-catheterization and anything else that might come up.
He has finally shown some real support and understanding, and I now know that he has realized what might be asked of him.

I’ve been surprised by friends I expected support from, but didn’t get, and by people I didn’t expect support from, but who did show it.  But, I have a tendency to be nervous about barging into sensitive situations. This has all been a learning experience for me and perhaps one of my biggest lessons has been about the importance of showing support.

People are complex and you never know what kind of life experiences have shaped their responses to situations like this. My husband and I will both undoubtedly be learning a lot about patience in the months to come.

I DO know that I am profoundly grateful to BCC and the people who have shared both their personal experience and positivity.

I’m so tired of waiting. Surgery is on the 21st, but it’ll have been 3 months of waiting, waiting, waiting when that day arrives. Also, I’m now waiting to hear if my benign brain tumour has suddenly decided to take a growth leap. Phew! I heard that it hasn’t, but it will influence the delivery method for the post-op pain meds. That’s fine. I get the morphine pump.

 

I have read in the Bladder Cancer Canada Patient booklet that a washable mattress protector is necessary. Sixteen days to go now, so of course I’m trying to think of stuff I need to be prepared with. How is it that the days seem both so long and so short now?

So, milestone after milestone… I had the RC surgery and got my neobladder on September 21 as planned. I was happy when the staples came out and happier when the urostomy bag finally went on October 17th.  I have a cystogram on November 7th, and if the surgeon is happy with the neo healing, I’ll lose the catheter.

I had great home care support from the CCAC (Community Care Access Centre). Home nurses came once a week and took vitals, helped with changing the urostomy bag, removed the staples, and so on.

When I got the pathology report from the TURBT in July, the tumour was graded and staged at T2b. The pathology report following the surgery revised the grade to T3b. The lymph nodes were clean and there was no metastasis. The surgeon said the fatty tissue around the outside of the bladder had cells that indicated post-op chemo had to be considered and wants me to see a medical oncologist to get an opinion.

I have an appointment on November 17th with the same oncologist I saw before. He said he didn’t think it was necessary, but that it was a good idea. The surgeon said he doesn’t think chemo is necessary, but that it’s my decision.  I’ll get a second opinion on the chemo, but why do they put patients in that position? I have no medical training, so how can I decide? Does it just come down to how big a risk-taker I am?

The surgeon said that surgical oncologists tend to be optimists and see the glass as half-full, and that medical oncologists tend to be pessimists and see the glass as half-empty.  Anyone have a similar quandary?

I didn’t have any chemo before surgery, but that was on the surgeon’s advice. I get the impression he thinks that the effects outweigh the benefits in a lot of cases although of course I have no idea if this is always his advice. I’m going to try and insist that I get clearer answers when I see him in November. That and opinions from two medical oncologists should make things clearer. It’s basically what I’ve heard from other survivors: Better to be safe than sorry.

A few months later…

The CCAC has a nurse who specializes in incontinence. She came once a week for a few weeks, did vitals, did dipstick tests to make sure there was no infection, and taught me how to self-catheterize. I can’t describe that experience because it’s just too personal and absurdly hilarious. So far, I’m lucky that I don’t have to use a catheter. I did a couple of times just out of curiosity, but it wasn’t worth the effort.

This bladder training and spending a small country’s worth on continence products had me in a week-long snit. I did find out that I could claim them on my income tax! However, I finally got my grateful back on. I’m cancer-free and told by two med-oncologists that no chemo was necessary. I am, however, scheduled to begin a clinical trial for an immunotherapy drug. No details yet as to whether I’ll be getting the actual drug or not. A bit scary, but…

I’m doing well on the drug trial. The trial I’m on continues until December.  I’ve had two CT scans, and both of them have come back fine.  There’s so much follow up. I have blood work done every three weeks. They also do urinalysis, ECG tests, and ultrasounds.

About two weeks ago I saw the surgeon’s resident who was present during my RC. We reviewed the neo’s “behaviour”.  I have another follow up with him in December to review whatever the urine cytology test reveals.

Before the surgery, I read somewhere about finding a physiotherapist who could check to see that I was doing Kegels properly, I ran into the problem of summer vacations again. I live in a smaller town so there aren’t that many available. That meant I only had about two weeks to practice. I wish I had known about this earlier. I think the more Kegels, the better. The post-op catheter meant I couldn’t practice for the six weeks I had it. So after I lost “Cathy”, I went through the exercises the physio had given me several times a day. Slowly but surely, I was able to recognize when I had to go, and how to get to the bathroom on time.  Note to self: Tighten the pelvic floor muscles and walk slowly.

No two ways about it, the first several months are tough, and 11 months post-op, I’m not problem-free. Long car trips or after having to drink the litre or so of contrast dye for a CT scan is more than the neo can deal with. However, I am down to one Poise pad per day (mostly) and I still wear Depends to go to bed, but even they are relatively dry in the morning. If I know I’m just going to be at home, I don’t use anything and it’s fine.

 

What is an Indiana Pouch?

The Indiana Pouch is another type of orthopedic bladder.  It is created from a portion of the large intestine and a small portion of the small intestine to create an internal pouch to collect urine.  The portion of the small intestine is used to create a stoma similar to what is used for the ileal conduit (ostomy) but it is shorter. The ureters are connected to the pouch and a person uses a catheter several times a day to drain the pouch through the stoma. The stoma is covered up with a bandage.

Advantages of Indiana Pouch: no external pouch, no odors or body image issues

Disadvantages of Indiana Pouch: longer surgery time, healing of both small and large  intestines, need for catheterization, risk of leakage from stoma, scarring of stoma making catheterization difficult, stones in pouch.

[Nightingale]

My urologist never actually gave me a stage but effectively it was stage 3 as my tumor had entered the muscle wall.  It had not gone outside the bladder.  The pathology report indicated “minimally invasive papillary urothelial carcinoma, high-grade, positive for carcinoma in situ”.  The tumor was 3.2 x 1.8 x 1.2 cm. I have not had any recurrences at this point.

My story started with a routine annual physical.  There was a microscopic amount of blood in my urine sample, hematuria.  Because I was 57 at the time my family doctor sent me for a KUB ultrasound, kidneys, ureters, and bladder.  A mass was found on my bladder so I was referred immediately to an urologist at the Southern Alberta Institute of Urology.  I had a cystoscopy exam done on a Monday which confirmed the tumor.  On Friday the same week my urologist et al. performed a TURBT surgery.  I was supposed to be kept overnight but I had issues with blood clots and the catheter so was actually admitted and spent the weekend in the urology department.  I was more or less OK after a few more days at home.

I waited for what seemed like an eternity, 4 weeks, to get the pathology results.  The result confirmed the tumor and my urologist recommended that I start chemotherapy to be followed with a radical cystectomy.  I was referred to the Tom Baker Cancer Centre.  I started a 3 month protocol of Cisplatin and Gemcitabine followed 3 weeks later with surgery.

Unfortunately, my wife and I got off to a bad start at the cancer clinic.  The oncologist told us that he thought the cancer may be outside the bladder and in the fat surrounding the bladder.  We asked what that meant and he said if it is in the fat that there is no cure.  This sent us on an emotional roller coaster. We left the clinic in tears.  However, my urologist took my case to the Tumor Board, a group of urologists/surgeons, radiologists and oncologists, and as a group of experts they reviewed and analyzed all the data, pathology and CT scan.  From this they determined that the cancer had not left the bladder and was not in the fat.  The recommendation of the chemo followed by the surgery was confirmed as the best path to follow for the highest survival rate.  After a very tough week we were back on a positive mental outlook.

I started the chemo the first week of August in 2015.  The procedure was Cisplatin and Gemcitabine together in week 1, Gem on its own in week 2 and then nothing in week 3, then start over, following this routine for four rounds or 3 months.  I was OK for round 1 but after that I was very ill.  I took all kinds of anti-nausea medications but I was still quite ill.  At one point between the second and third round I was so dehydrated that I ended up being taken to Emergency by ambulance.  After pumping fluids in me they sent me home telling me that with my compromised immune system, I was actually safer at home than in the hospital.  By this point in time I was not sleeping and purging most of what I was eating.  I was physically and emotionally drained and fell into a situation induced depression.  I was referred to and the Tom Baker Department of Psychosocial Oncology and started seeing one of the psychologists to deal with the depression.  My family doctor happened to have training in psychology and started me on a prescription for some antidepressants.  They did seem to help.  In fact, I am still taking a mild antidepressant to this day (Cipralex).  I would have weaned off the Cipralex by now but my family doctor has encouraged me to stay on it until my current issues have all been resolved.

As I was so sick with my response to the chemo, I ended up missing one session of the Gem. I was just too sick to make it to the cancer clinic.  I finished the chemo October 31, 2015 and was in for the cystectomy the third week of November.  Emotionally I was not in a good place.  I was scared of dying.  I did not want to leave my son who was in grade 7 at the time, and my wife.  My sister came up from Lethbridge to stay with us. I really did not want to be alone during the day.  She was here for probably half of my chemo and until just before I went in for the surgery.  I wouldn’t have wanted to go through this without her being around.  Of course, my wife was very supportive throughout all of this but she had to work and keep things as normal as we could for my son.  He was active in hockey and I was just too sick to take him to games and practices.  I look back now and I see that in my mental state at the time I really just assumed that my son and my wife were doing fine and holding up through all this.  I hate to admit it but I now see that I was very centered around my depression.  It wasn’t until May of 2016 that I was talking to my son and he confessed that seeing me so sick was very tough on him.  He told me that it bothered him to see me sick in bed when he left for school each morning.  My wife and I had hired a tutor to help him with math and science but he is doing far better this year without a tutor than he did when my illness was weighing him down so much.  It shows very clearly that this was/is a family affair.  It affects us all and family members need help to cope as well.  We are lucky that there are programs that children and spouses can attend to help them cope.  We didn’t use any but looking back I see that I should have had my son and wife see the Tom Baker psychologists as well as me.  After my surgery I also did see a private psychologist for a few sessions to help me rationalize what I had been through.

My wife encouraged me to keep a diary.  I did that but in my lowest time emotionally I found it difficult to put thoughts on paper.  She had me trying to write good things every day.  Looking back I see the positives of this as therapy.  I had also tried mindfulness meditation during some high stress times at work a few years earlier so I also tried this during my chemo and surgery recovery.  I took a 9 week mindfulness course through the Tom Baker clinic in the spring of 2016 as well.

Fear was the single most challenging emotion during this whole ordeal.  Fear of many things.  Leaving my wife and son behind, leaving my brother and sister, other family members and friends and financial worries were at the top of my list.  At first my fears took a grip of me and really made things worse.  Thankfully I had the ability to write down my fears and address them to the point where I could take care of them.  I could see that the financial fear was greatest for me.  Once I could get past everything I could see that my wife and son would survive and that allowed me to settle back down with positive thoughts as opposed to falling into this dark place every day and night.  I could not have done this without my wife as she and I talked about the “what ifs” and how we would deal with them.  My sister helped me tremendously, but my wife was my rock through all this, and continues to be.   Nothing else really matters to me but to be here for my wife and son.  They mean everything to me and always will.

As I mentioned above, I still have issues that I am dealing with.  My right ureter had a blockage from the surgery.  With my regular blood work we noticed that my creatinine level was going up indicating a kidney issue.  I had a nephrostomy tube inserted into my right kidney for 5 months in 2016, allowing the kidney to drain and thus treating the hydro nephrosis.  In October 2016 I had minor surgery to biopsy the blockage and insert a stent.  The biopsy indicated benign scar tissue, which was great news.  However, the stent was removed in January 2017 and at the end of February the nephrosis was visible again on ultrasound.  I have had several tests done, will have a CT on Monday April 10th and then sit down with the surgeons again on Wednesday April 12th.  The options likely range from trying a stent again or open surgery to reattach the ureter.  As my urologist told me, he believes this is just a plumbing issue that we can deal with.  As long as the cancer stays away, I’m good with that.

I am in a much better place today but it is natural to still have worries in the back of my mind.  The trick is to not think about things that could happen and just deal with realities if and when they happen.

Where am I today?

Other than the plumbing issue I am good.  I try to stay active, walking the dog helps.  Life is pretty normal, the new normal they say.

There are lifestyle changes but in the big scheme they are minor.  I chose to have an external urostomy bag and stoma rather that go with a neo bladder.  This means that I have to hook up to a night bag for sleeping and of course I have to change my appliance twice a week.  What I have found is that showering every day is an issue as it tends to create problems with my barrier and I can have leaking issues.  I have tried the saran wrap and waterproof tape trick but at this age I don’t have to be as active so going a few days without a shower has not been an issue so far.  Having said that, I have chosen to not return to work which means that I can get away with that.  If I was dressing up for work I would have to find a way to make showering everyday possible. Others do it and I suppose I could too.  Clothing is a little different as I do not wear tuck in shirts anymore.  This way I do not have to tuck my pouch under my pants and belt.  Again, if dressing up for work or otherwise there are ways to make this possible.  I purchased a stoma guard which a piece of plastic and belt that has a hump in it.  When placed over the stoma it allows the pouch to fill even when you have a belt around your waist.  People use these to dress up in suits etc.  As I said, I don’t use mine much as I don’t dress up but I have it if I need it.  Lastly I’d have to say that as I have allowed my situation to restrict my physical workouts, I find that my belly has become bigger, which I am not happy about.  When I have my plumbing issues taken care of I will talk to my doctors and a physio to see what core muscle exercises I can do without damaging my stoma.

As long as I am on the right side of the grass I can handle anything.

Words of Wisdom

Keep your thoughts on the positives in your life and don’t let the ‘what-ifs’ control your mind.  It is easier said than done but staying positive and clear headed is the way to go.  What seems like an eternity at the time is just a blink of the eye after the fact.  We are lucky we live in a world and specifically a country and a city where we have the medical science and technology to treat so many things.  I’d have to say that at all time when my issues were acute, my treatments and appointments have been swift.  The nurses, technicians and doctors have all been incredible.  I have learned that the system is so pressured and overcrowded that when things are not quite as acute, there are delays in getting things done but overall I count myself lucky.

The only other thing I can think of for newly diagnosed would be the decision to have an external bag or a neo bladder.  My decision was for the external bag as the potential issues after surgery are far less.  I understand that some people have had the neo bladder and able to work through the issues but I think I made the right decision for me.  It is a big decision either way and one must put lots of thought into it, both have positive and negatives.  I do not know anyone personally that has had the neo bladder.

[Nightingale]

Paul’s Story:

Diagnosis:  T1 Urothelial Carcinoma, high grade + Carcinoma In Situ
Treatment: TURBTs, BCG

My name is Paul. I was born in England and immigrated to Australia in 1988. I worked as a helicopter fitter/machinist and later as an aircraft fitter/supervisor.  I finished out my working life as fitter supervisor for a railroad company before finally fully retiring at age 65 in 2016. I am married, have an adult son, who is married with one son, and an adult daughter.

In January-February 2016, I started passing blood in my urine and went to see my GP. I had urine tests, blood tests, ultra-sounds, MRI/IVP scans and was eventually diagnosed with a mass (tumor) inside bladder and prostate enlargement  which all needed specialist treatment.

When I was diagnosed with bladder cancer plus a tumor (with pictures), I was a little puzzled as to what I do next.  How do I tell my family and friends? My GP was pretty good but had that stern look as he bent towards me, and gave me the bad news.  At home when I told my wife, (who is always pessimistic), tears flowed.   I expected the worst. The hardest task was to tell our kids, who I may add are in their 40’s.  One is like me very philosophical, and the other is very much like her mother, so more tears.
Friends can be hot and cold when you spread the “C” word. It was that way with some of our close friends, but I will go into that another time.
All the tests had been done, so now I had my referral to the Urology department in Brisbane, our nearest major city. My pre-op meeting with the Urology Department was with one of the junior doctors in the team, and her people skills didn’t stand out.
So it was with a very heavy heart I was admitted to the hospital on the Thursday before Good Friday. This was when I had my first TURBT surgery and cystoscopy + biopsies. I was to be released on Good Friday.  I was a very quiet chap, which isn’t like me.  There was not much talk from any of the doctors.  When I woke up in the post op ward, I was very sore and in need of some major pain relief. A very nice nurse accommodated my wish. Morphine is such a wonderful drug.  I had no pain through the night.  I was woken up very early, and relieved of the catheter.  I was told I “will” have a shower but don’t be alarmed by the mess on the bed. No one told me about the blood and antiseptic gunk they wipe on you during the TURBT.  It looked bad on the bed. I had lots of bleeding due to never having had a catheter inserted before, and my urethra was not happy with the reverse intrusion.
Breakfast on the Good Friday was “Bacon and Egg”. Whilst I’m not a god person, this breakfast did have an effect on the more orthodox in the ward.
Just after breakfast, I had a visit from the junior Doctor Doom, who again, set out the BC journey that no one wants to travel. I thought I would lose my bladder at the next visit, and kiss the sex life good bye, such as it is at 65. I think she should have gone into the funeral business rather than saving unfortunates like me.
Never have I experienced pain and bleeding whilst voiding like I had for 5 days after the surgery, but it all cleared and I was so relieved.  Unfortunately, the blood and particles of scabby tissue after the laser treatment still came out for some weeks. “What next?” I thought.
Waiting for things to happen in our BC journey is something we will all have to get used to.  Two weeks after my TURBT, I had the results of the biopsies, and yes, I had a high  grade T1 urothelial carcinoma with associated CIS but non muscle invasive, which I was relieved about, after Doctor Doom’s talk two weeks prior. I was to have another cystoscopy in two months, to check on the progress.
In the meantime, I was still passing bits of scabby tissue.  Even worse was to come at a friend’s birthday party held in the local golf club. I found myself unable to void and had tried three times without fail. I made up my mind it was now or never, as I was getting very desperate. Off to the men’s toilet again, I was determined to do the deed. Unfortunately, just as I stood at the urinal, another guy walked in and was very close when I gave an almighty shove.  Quite some number of hard bits came out and “clanked”, yes “clanked”, on the stainless steel urinal and the flow started.  What a relief!  The guy next to me said, “You having a bit of trouble there, mate?” to which I replied, “Not any more my friend.”  I was so close to getting up to the A&E Department of the local hospital.
It was while I was anticipating my second visit to Brisbane that the “waiting” started.  This waiting is something we will all get angry and frustrated about along our BC journey. We are waiting for hospital visits, doctor appointments, procedures, treatments, or the big one; the results of biopsies. The hospital system worldwide will not be rushed, and no matter how many calls you make, “they will get back to you.” The communications network had hit me full on in the lead up to this visit. We BC sufferers learn over time to have patience in abundance.  The main oncology hospital in Brisbane have so many people in the chain of command, that as per usual one doesn’t talk to the other, so when I received a letter from the Brisbane operations department downgrading my cancer to a watch and wait, I wondered why. I phoned the urology liaison nurse who put me in the picture; it would seem this is a “standard” letter and not to take much notice of it. I went to my GP who assured me I was still on the number one priority list and take no notice.  It was another week before I got confirmation of my next visit. In that week, I had chewed all my finger nails, and if I could have, I would have started on my toes. I still get this “standard” letter after every visit which is kind of reassuring that I am not bigger than the system.
My second visit to the main oncology unit in Brisbane, was for a cystoscopy and biopsy removal. I was prepared, so I thought. When I walked into the pre-op interview, Doctor Doom from the first visit was sitting there.  I got a bit anxious, to say the least. I was by now more educated, having received some booklets from the Australian Cancer Council, which my wife and I had read cover to cover. We had questions written down and ready for Dr. D.  She was a little taken back with this new enthusiasm, but only a little, as she seems to revel in the disaster side of cancer, and her people skills are still way back in the priority. She did cheer me up by saying she was not part of the operating team.
The next day as I was being prepped for my cystoscopy, a new doctor came, who was to carry out the examination. He laid all the information in such a way that I was so relieved. It doesn’t take much, and means so much to the patient.
Post procedure was far different from the first visit, with major pain and bleeding through the night.  The bag was red. Morning came, and the kindly doctor came to see me after the catheter had been removed, and I had bled all over the floor next to the bed. He being a bit worried about the condition I was in, and gave me some pain relief, but it didn’t stop the bleeding. I had to pass the 3 urine void test prior to being released from the hospital, but after 2 voids and loads of blood, it would seem I was destined for a long stay. I got to the 5th void and just a little blood, so I was deemed fit to take a hike.  Clutching my pain relief, I set off for the hotel I was to stay in prior to heading home four hundred kilometres away the next day.
I know now there are 5 public toilets between Ward 6 of the Brisbane hospital and my hotel, which is roughly just less than a kilometre away. I know this, because I went in every one of them on the way to the hotel. While I was booking in, I think the guy behind the counter thought I was doing the rain dance as I was hopping up and down until I used the toilet in the lobby. I was lucky that there was only me there, and the explanation seemed to amuse the check in guy. It was such a relief to get into the room, and sit on the toilet where I read a whole chapter of my murder book before I got up. I took a warm bath, had a cup of tea and I felt 100% better. The bleeding and pain wasn’t too bad by the next morning.-
I had a letter 3 weeks after my cystoscopy informing me that the biopsies were all clear. My GP phoned me with an appointment to explain what will happen next, even though I had already been told by the urology liaison nurse by phone, so it would seem good news isn’t held up. The next step was a course of 6 BCG treatments which were to be carried out in our own town’s Cancer Care Clinic, which had just been opened, so good news all round.  The local oncologist informed me that BCG is a breeze, and it’s only a myth about reactions to it. I asked him, “How many have you had?” I got no reply. At this stage of the BC journey, I was not afraid to ask questions and still believe you can’t ask enough questions. The old adage about “Don’t ask stupid questions”, has never sat well with me, and my belief is that there is no such thing as a stupid question.  If you don’t know something, ask. Okay, on to the BCG, for me.
The day of the first of my six BCG treatments, I was armed with my murder book, I-Pod and enough bravado to carry me through, but I needn’t have worried as everyone at the local Cancer Care Clinic was so nice. This is where Australia differs in the BCG treatment procedure to Canada and America.  Instead of installing the BCG, and then sending you home so you can monitor the two hours you need to hold it in and then void the whole lot down your toilet, I was admitted into a room off the Cancer Care treatment room with bed etc.
The nurse allocated for the task, took my blood pressure, checked my weight, and took a urine sample to test for infection prior to getting the dreaded catheter ready. I had never had one inserted while I was awake, but she talked me through everything so it wasn’t such a big deal (so far). It took about half an hour for the whole preparation. Then I was alone for two hours, to let the BCG work its magic.
During the two hours, my murder story was disturbed by a visit from the hospital Padre, and whilst I am not a god person, I enjoyed the chat with her.  By the way, modesty was spared with a strategically placed sheet. I found by chatting away the time went quickly.  Even turning over every fifteen minutes to allow the BCG to do its job wasn’t an issue for her. As the weeks went on, she was a regular and welcome visitor.
At the end of the two hours, the nurse brought me 2 glasses of water to help with draining the BCG.  Everything was voided into a sealed bag. This, and all hazmat clothing the nurse had on, plus catheter equipment, and my nappy pants went into a sealed bag to be incinerated. I was in the clinic for about a total of 3 hours.
Upon leaving the room, I was asked by a lady receiving chemotherapy just outside my door, “What happens in there?” I had to say “secret men’s business” but she was persistent, so I told her all about it. She explained about her long term cancer and it was a truly humbling thing to hear. After that, I have never felt sorry for myself, as she was indeed a brave woman to go through what she is experiencing.
Only five more BCG’s to go.  I completed the 6 weeks of BCG in August 2016. This was followed by a cystoscopy exam under general anesthetic a month later in September. Everything was “all clear” and no biopsies were taken.
Here is a story I told around the campfire. This one is about the myth that men don’t talk to each other about health. It was October 2016, and I had BC now for nearly a year. I was at our vehicle club annual get together .
On the first night we were away and were getting all the news. We were a group of about 18 guys and two women around the campfire. I was chatting in a huddle with two of my close friends either side of me. We are a sorry threesome, as one has prostate cancer, the other has bowel cancer, and me with BC. We were swapping stories on recent hospital visits. Well, after having listened to the other two telling their stories, I was asked about the BCG treatment I had just finished. The rest of the campfire throng were chatting away, and I thought not listening, so I proceeded with my telling of the procedure.  After I got past the part of getting stripped off and on the bed with the nappy pants, I got to the bit when the nurse gets the catheter out of the bag and installation. Well, I had noticed it was getting quiet and I happened to look up and the whole campfire crowd had zeroed in on my story, listening intently.  I carried on, and at the story’s end, I was met by an avalanche of questions from the crowd; “Were you awake while she is doing this?” and “How long is the catheter?” The next hour was spent fielding questions of “How did we three know there was a problem?”, “What did you do about it?”, “How long did the tests take?” and so on.
The obvious thing is, yes, men do talk about their “under the belt” problems.  Like women, you have your quiet types who just listen, but like one of the wives said, before we all went to our beds that night, “It was the best way of shaking some of the older men into going to see their GP’s”, and she thanked me for doing what we did so openly. I believe the talk for the rest of the weekend was about the three guys with cancer talking around the campfire. I did have quite a few people come up to me asking how I was, even though I didn’t tell them I had BC.
My wife and I joined the local Cancer Care Support group. While it isn’t BC specific, we have met so many brave people who have endured their own cancer journey.  The word “cancer” strikes at the heart of human emotion. Family and friends can act so differently.  Most people upon hearing that you have cancer expect to go to your funeral in the next twelve months. My mother, who lives in the UK, has constantly walked around with a photograph of me since hearing about my BC.
I have given out the Australian Cancer Council booklets to my kids for them to better understand what I am going through. They refuse to read them, but have undying support for my every stage. Friends have been mainly supportive, but one or two do not quite understand why I am making long term plans around treatments. When they ask about my current status, I say that I am cancer free at the moment, and then tell them I am on a three year plan of cystoscopy exams and BCG treatments. They have a belief that cancer free means cured, but how is that so, when cancer isn’t curable? Life goes on.
I completed the first set of maintenance BCG treatments (once a week for three weeks) in November 2016. Recently on December 8th, 2016 I attended the Hervey Bay Hospital specialist clinic to arrange for a colonoscopy in regard to the original diagnosis on my prostate in January 2016. You can’t rush these things. This was followed by a trip on December 12th to the Hervey Bay Cancer Clinic to review my BCG treatment schedule for 2017 and the three year plan they will put in place. The “something to look forward to” in 2017 will be my cystoscopy exam under general anesthetic at the Mater Hospital in Brisbane.
The local support group introduced me to our own psychologist, with whom I have had three sessions so far, and I would recommend if you have a psychologist available, you take the time to go see them. They cover everything from dealing with annoying friends, to how to deal with your own emotions, which is something we all need, as cancer is life changing and not for the better. I have woken in the night so many times, and lay there wondering, “Where the hell is this BC journey taking me?”  You don’t have to think you are a basket case to see a psychologist, so get over that, and you will never regret it.
My first rigid cystoscopy of 2017 was again carried out in Brisbane’s Mater HospitaI. I had four visits during 2016 to the Mater which is the main urology hospital in Queensland, Australia. The urology team there is excellent (apart from the infamous Dr. Doom who I have written about before and is no longer on the team). They have looked after me very well since my BC diagnosis in January 2016.

Prior to going down to Brisbane from home in Hervey Bay QLD (8hr round trip) I was told about some alternate accommodation which costs nothing.  The Queensland Cancer Council has a hotel called Ellis Lodge close to the Mater which my local cancer coordinator suggested that I check out for further visits.  On arriving at Ellis Lodge, the manager showed me around and I found it very impressive, so from now on I will stay at Ellis. Other hotels near the hospital cost about $120 a night.

I am not sure if your cancer groups have this type of hotel for cancer patients in Canada, but it may be worth asking about.   Having a rigid cystoscopy or any other BC procedure may require an overnight stay in a hotel plus the night in the hospital. When you are living so far away from the hospital it is a huge weight off the mind. Ellis Lodge also has a bus that takes patients to the hospital for your appointment, all free.

My doctor for the pre-op appointment was very reassuring.  The next day in I went for the rigid cystoscopy procedure. It is like getting changed for a football match with a gown, dressing gown, tights for thrombosis, little socks to keep your feet warm and the very functional paper undies plus the paper hat. I don’t see the need for the paper undies, because as soon as you get on the operating table they rip them off. Then you go round to the day surgery waiting room (the holding pen). The TV is on but nerves are on edge with every one worrying about what is about to happen to them. I am not the worrying type so I fall asleep if time allows.

On the way to the pre-op room I get a warm blanket and then a nurse preps me for theatre with all the bits and pieces that they attach prior to walking into theatre for the cystoscopy. While all this is going on the urologist and the anaesthetist come for a chat.

All went well. When I woke up in the post-op ward without the catheter, I knew it meant “all clear” which is a great feeling. I also asked the nurse who is getting me ready for the recovery ward how it went and she verifies the “all clear”.

It was a relief to be woken at 5.30am as we males are. Females get woken at 6am as they reckon males are quicker in the wash rooms.  It works for them so I won’t say any more. The visit was painless and I was told by the urologist that my next cystoscopy exam will be with a flexible cystoscope because having four general anaesthetics in twelve months at my advanced age (65) is too many.

I am a bit nervous about the flexi as the catheter they use is 14mm diameter so I hope the anaesthetic gel works.  On the plus side, I will be able to follow what they are doing on the TV monitor.  The urologist was a bit perplexed by this as most people don’t look. In the past when I have had cuts stitched, I have to look at what is happening.  I may need to see someone about this.

I had my first “flexible cysto”.  After having four rigid cysto’s previously, I was not looking forward to it. It turned out that all was a breeze with the two surgeons/nurses doing a great job. I never felt a thing during the exam, and even raised the fact that I used the same Olympus Boroscope (endoscope) to look inside jet engines in my working life so it was a strange feeling looking and discussing my insides.  I had the all clear so come October I will go through it all again.

[Nightingale]

SUSAN’S STORY
Diagnosis:TaG3 2008, 2010 (Superficial Urothelial Carcinoma, High Grade bladder cancer, I tumour CIS – 2008 only)
Treatment:TURBTs, BCG Immunotherapy

My name is Susan.  I’ve been married for over 30 years and am the mother of four young adult sons. I started out my adult life doing office secretarial work, later shifting to being a child care provider so that I could stay home with my four children while they were small.  I have since worked off and on in retail and most recently in patient health research. I’m also a volunteer with Bladder Cancer Canada helping patients and their loved ones deal with this disease.

The Journey…..2008 to present

I was first diagnosed with TaG3 NMIBC (Non-muscle invasive urothelial carcinoma bladder cancer, high grade) in 2008. I also had one single Carcinoma In Situ (CIS) tumour. I had a sudden episode of passing a large quantity of blood one afternoon when going to the washroom. I stood there frozen staring at the toilet for quite a while, shocked at what I saw. I recalled a vivid dream that I’d had a few nights earlier about being in hospital and passing blood in a weird bathroom. I now realized this dream was probably some kind of warning that all wasn’t well with my body.I had been feeling very tired for the previous few weeks and had promised myself to go to my family doctor for a checkup the next week. Well, I guess that check-up was going to happen sooner rather than later.

I saw my family physician the next morning.  After a long consult, a solid poke and prod exam, and looking at the sample jar of bloody urine that I’d brought in, my family doctor determined right then that it was most likely something going on with my bladder and said that I should have x-rays and an ultrasound ASAP.  His receptionist phoned around managing to get me in on a cancellation at an x-ray clinic in the south part of the city for Monday AM, two days away. When I arrived at the clinic, doing the potty dance with a very full bladder, they whisked me in almost immediately and the necessary pictures were completely quickly. I was told that the results would most likely take 24-48 hours to reach my GP.

Well, it turns out that I didn’t have to wait that long.  When I got home about an hour later, my son met me at the door with the message that the doctor’s office wanted me to call right away.  When results come back that fast, you know that the news won’t be good. The nurse instructed me to come in as quick as I could.

My doctor cut right to the chase and informed me that the x-rays and ultrasound had shown not one, but several tumours in my bladder. He also told me that I was to go to an urologist’s office right away as they had managed to get me in with someone that afternoon.  I asked if it was cancer.  He wouldn’t confirm it, not being a pathologist, but he did tell me that the majority of bladder tumours are malignant and to prepare myself for some possibly bad news.

The urologist’s office waiting room was full when I arrived.  I sat down and tried to focus on reading some magazines to pass the time.  The words blurred on the pages in front of me.  Was I dying?  At last it was my turn.  I was grateful that this urologist had squeezed me in on top of what must have been a very long and grueling day and thanked him for his time.  He not only had the x-ray/ultrasound test results but a record of all my past surgeries (including the urological ones), that had been forwarded to him from my GP’s office.

He asked me lots of questions about my past health issues and examined my abdomen.  He explained that I would have to have a scope exam called a cystoscopy in order for him to view the inside of my bladder to confirm what the x-rays were showing. He gave me a brief description of what the cystoscopy exam was all about and that it depended on what was seen at that examination that would determine the next steps for further tests or any treatment. I nearly fainted when he explained about inserting a scope up the urethra.  I asked if I would be put to sleep.  He explained that a local anesthetic was all that was necessary and to see his receptionist for a booking.  I managed to swallow my fear, thanked him and left.  The receptionist was able to book me in for an appointment a little over 2 weeks away.  She gave me an information sheet that explained about the exam and what to expect. How was I going to endure the wait?

When I finally got home I went to the computer to look up the cystoscopy procedure.  I had no idea of what the scope looked like or how big it was. When I saw the images I literally freaked out.  How could such a wicked looking thing possibly be inserted up inside me while I’m awake?

Well, the day arrived for that first cystoscopy exam, and I checked in and sat down in the waiting area, shaking with fear, and damn… the room was cold!  How did peoplework in here?A volunteer lady dressed in a bright red vest showed up presently and called me up.  She went over my paperwork and had me sign the consent form.  Was I really going to allow this to happen? She gave me a gown and cover up to change into.

Finally I was called and entered the exam room.  I spotted the scope laid out on the exam table. It looked different from the one I’d seen on the Internet.  What I later learned, was that this was a rigid steel scope instead of the more flexible rubber one. Needless to say, it was a wicked looking thing, and I had the gut feeling this wasn’t going to be pleasant, but what choice did I have? The nurse sitting at the desk right by the door greeted me cheerfully.  She went over the paperwork one more time, asking about medication allergies and such and then asked if I had any questions since she understood this was my first time having this examination. I told her I had two – How much was this going to hurt and when would I know the results?

She answered the second question first, and told me that if I wasn’t squeamish to look at the monitor by my head as I would be able to watch the examination, and would see exactly what the doctor saw, and if there was anything of concern going on in my bladder he would tell me right there and then, and what, if anything, needed to be done. She said that if I distracted myself by watching the exam it would help with the discomfort of the procedure as most of it would come from the pressure of my bladder being filled with saline. She told me that most women compared the sensation of the cystoscopy exam to that of a pelvic one only that it was a little higher up.

She then instructed me to get onto the exam table and put my feet into the stirrups. When I was in position she explained what she was doing in terms of cleansing and prepping my “area” for the exam.  The anesthetic was cold and numbing going in, and felt almost like an object was lodged in there.

My urologist arrived and greeted me. The nurse gave him a brief update on the info I had provided. Without any further preamble, he picked up the scope and inserted it into my urethra. The shock of the scope entering me was painful despite the anesthetic.  This was no pelvic exam!  I bit down on my bottom lip to prevent myself from crying out.

I did manage to look up at the monitor. I was blown away by what I saw. The nurse was right. It did distract me from the “discomfort” of the procedure. My bladder wall was pink with little red lines running all over it.  Then we saw the trouble. At the bottom right of my bladder there were two pink tumours that looked like little pieces of coral. Next to them was a flat red spot. That flat red spot scared me far more than the other tumours.
My doctor slowly removed the scope and let the saline drain out of my bladder. He told me that I’d have to come back for surgery to have the tumours removed. I lay there for a few moments dazed by what I’d just seen.

I finally got the call from my urologist’s office in mid-August for my first TURBT (Transurethral Resection of Bladder Tumour) surgery on September 5th. I had to go down to the hospital the next day for a pre-admission physical exam to make sure that it was safe for me to have surgery under general anesthetic. This would be an eight week wait by the time September 5throlled around but such is life in Calgary. I went to the hospital the next day and had my physical including an EKG to check my heart. Fortunately everything was okay.

The nurse came in after the physician’s exam with an information sheet about the surgery.  She asked me to read it and said that she would come back in a few minutes to make sure that I understood the surgery procedure and would answer any questions.

My husband took the day off for my surgery. I got there in plenty of time to check in.  I went up to the desk in Day Surgery and a unit clerk had me sign my life away once more, and instructed me to go into the waiting room as I would be called shortly by a nurse.

About ten minutes later a nurse called me and led me to my “pod”.  I got changed into one of those infamous blue gowns that open in all the wrong places, went to the washroom and returned to my bed.  I was really cold so the nurse brought me a couple of deliciously warm blankets and tucked them around me.  I found once I warmed up I was able to relax a bit. But damn! Why were hospitals always so cold?

Another nurse showed up to start my IV. Since I have decent veins, it went off without a hitch. I have allergies to certain antibiotics, so the nurse was undecided about starting the pre-surgery IV antibiotic since it was similar to one I was allergic too. She said that she would leave that decision to my surgeon as he could order a new one in the OR.

Shortly afterwards, a porter came pushing a big stretcher that was to be my transportation to the OR. He wheeled me to just outside the OR door and called for a nurse to bring me another warm blanket.

The anesthesiologist saw me next, and examined my mouth and asked about any fake teeth and any last food/drink consumption. I had already been asked that at least half a dozen times. He gave me the choice of a general anesthetic or an epidural.  I opted for the general explain that I’m a total wuss when it comes to surgery and didn’t want to be awake especially when people were messing around with my “southern hemisphere”.  He nodded his head, and said to consider it done. He was true to his word.  I was out like a light almost immediately after laying down on the OR table.

My surgeon came over to see me when I came to.  I was really groggy, but remember him saying that there were several more tumours, I think 8 in all, but he said that he got everything that he could see, and we would have the pathology report in about 10-14 days. It was not surprising that there were more tumours since I had an eight week wait for surgery. Now I could only hope that the news would be good.

I was wheeled up to my overnight station shortly after. I was a little more alert, and now noticed the honking big catheter between my legs.  I also noticed that I was really starting to hurt.  A nurse came over to check me out, asking about my pain level on a scale of 1-10. I told her it was probably around a 5. She went to get medication and came back quickly. I saw her hook up a small bag full of clear liquid to my IV. I had no idea of what it was, but it worked wonders eliminating the post-op pain.

She came to check my vitals a little while later, and also changed out the floor bag that was holding my blood coloured urine.  I had been told that my urine would be bloody post-surgery, but I asked the nurse if I was losing too much blood.  She looked carefully at the urine in the catheter tubing which was a clear pink colour, and said no. My urine was actually very clear despite its colour which was more important meaning that I wasn’t bleeding too much and that I was at a lower risk for clots blocking the catheter. She told me that the bleeding would most likely subside overnight after the catheter was removed around 5AM the next morning.

I was in the middle of a really good dream of helping one of my favourite TV actors solve a serious crime when the night nurse true to her earlier word, woke me up around 5AM to check my vitals and remove the catheter.Why did you have to wake me up when I was having the dream of a lifetime?

I told the nurse a little bit about my dream and she got a good chuckle out of it and apologized with a hint of sarcasm, for being responsible for “obstruction of justice” with the solving of a crime.

Okay…down to business.  She got the necessary supplies and tucked a pad under me.   She then deflated the catheter balloon and told me to count to three. When I did, she gently slid the catheter out.  It stung a bit, but was not the excruciating pain that I was expecting.  Now I had to start drinking so that I could get out of here. The nurse left my IV in to help fill my bladder faster.  She told me it would probably be at least a couple of hours before I would need to go and to not rush it, because it would cause unnecessary stress to my bladder, and that in turn would make it more difficult to go.

Sure enough, a couple of hours later I felt the need to go.  The nurse had left one of those chair commodes with a measuring cup in it in the washroom as they wanted to see how much urine I was producing.  When I went, it only stung a little bit.  I was expecting it to hurt a lot after having the catheter in so that was a “pleasant” surprise.  The other surprise was when I looked down my urine was a clear yellow colour.  I had voided about one and a half cups. When the nurse checked my output, she said that it was really good for a first go and went to get the portable ultrasound. I lay down so that she could wave the magic wand over my tummy.  It revealed I had about a quarter cup of urine still in there.

On the next go, I produced just over 2 cups of clear urine.  This time I could feel that I was empty.  When the nurse checked me with the ultrasound, my bladder had very little urine in it.  She was satisfied that I’d be okay going home, so she removed my IV, and went to get my discharge paperwork.  My discharge instructions were to phone my urologist’s office for a follow up appointment. It would take 10-14 days for my pathology results to come in. I was not to do any heavy lifting or housework for 4-6 weeks, not to drive for about a week, no sex for about 4 weeks.

When I asked about what would happen next, she said that it would depend on the pathology results and that my urologist would instruct me about that. She said that the main first step was to heal my bladder from the surgery.  That would be best accomplished by drinking lots of liquid, preferably water – lay off caffeine, resting and taking frequent short walks. I signed my release and she gave me a couple of sheets with the care instructions and what to do if I felt unwell after getting home.  I wasn’t feeling much in the way of any post op pain because the night nurse had run a final shot of pain medication through the IV earlier.  I was given two prescriptions, one was a post op antibiotic and the second was for a pain killer if Tylenol or Advil wasn’t enough to deal with any post op pain.

The next week I resumed the acupuncture treatments that I’d started as part of my pre-op prep. Those treatments helped ease the back and pelvic pain I was experiencing and I think my bladder healed much quicker. I only passed visible blood containing a small clot once post-surgery.

To help while away the days waiting for the pathology report, I spent a lot of time reading in addition to going for walks to heal from surgery. I found that when I would lose myself in a novel for a couple of hours, it greatly reduced the mental stress and anxiety. After 10 days I could wait no longer and phoned the urologist’s office. I was told by the receptionist that my results were in and that she would get the doctor to call me back when he had finished seeing patients for that day.

My urologist called a couple of hours later and went into the details.  Yes, I did have bladder cancer.  My official diagnosis was non-muscle invasive high grade Urothelial Carcinoma and Carcinoma In Situ. Okay, Doc….in English, please? So, I learned non-muscle invasive was the good news – the cancer was still on the surface of the inside of the bladder and hadn’t invaded the muscle part of the bladder wall. The not so good news was that it was a high grade cancer, meaning that it was aggressive, and if it recurred, it could come back at a worse stage than the first time.

He then went on to explain about BCG treatments. BCG or Bacillus Calumette Guerin is an attenuated TB vaccine that is instilled in the patient’s bladder via a catheter and they hold the drug in the bladder for about 2 hours and then void it out.  I was told if I chose this option, I would have to go our city’s cancer centre once a week for 6 weeks for treatment and then after about a month come back to see him at the hospital for a follow-up cystoscopy check-up. He explained that this drug treatment would give me about a 70% chance of success.

I didn’t like the idea of doing drugs as I had strong reservations about cancer treatment in general, but what choice did I have? The thought of being catheterized each week didn’t sit well with me either, but I told my doc I’d go ahead.  The way he put it, it did seem to be the option that offered me the best chance of getting rid of it or at the very least, prevent it from getting any worse. He concluded our call by saying that his receptionist would book it, and call me with the date and that the cancer centre would also be in touch with further instructions.

I got a call from my urologist’s office a couple of days later.  The D-day for my first BCG treatment was October 23rd, about one month away. The receptionist told me that the cancer center would be sending me details in the mail and would be calling as well to answer any questions that I might have.  Yes, I do have a lot of them…

About a week later, I received an envelope in the mail from the cancer centre.  The contents were disappointing to say the least. There was a consent form for me to sign that I was to bring on the first day.  Another had information about an orientation session to let me know what services were available at the cancer centre and there would be a presentation on cancer treatment.  The third sheet was a schedule of my treatment dates, and on the back a few brief sentences about the side effects of BCG.  There was no information about the drug itself which was the information I was looking for.  The only other item in the envelope was a dark red coloured, credit card sized patient card that I was to bring to each appointment.  It had the logo of the cancer centre at the top with my name and health care number underneath.  I had to wait until the day of my first treatment to get my many questions answered so I ended up living with a lot of mental anxiety for a month that could have been alleviated with a conversation.

The nurses at the cancer centre were definitely of the “get them in and out as fast as you can” mode. I did get a whole ten minutes of consult before my first BCG treatment.  I had a lot of questions but the nurse wasn’t able to answer many of them. She did however give me a booklet that had more detailed information on BCG. I could now go online and learn more. Why hadn’t I thought to go on the Internet earlier?

At my first BCG treatment, it hurt like hell when the nurse inserted the catheter.  It was not so much from her not doing it right, but because I was scared, I tensed up which made the insertion of the catheter worse. Unfortunately, the nurses weren’t too sympathetic, basically implying for me to grow up and put my big girl pants on.  I was embarrassed to be a snivelling idiot going in there week after week, but I didn’t understand why or what a mess my head was in, and they didn’t bother ask how I was actually doing.  When I asked about some extra freezing/lubrication either in the urethra or on the catheter itself I was informed that “We don’t freeze the women”.  At the time I was too scared to argue, but I’ve had “discussions” with nurses since then. If they get resistant, I always ask “How many of these have you had?”That usually does the trick.

When I got home from having the first instillation, I lay on my bed to do the 2 hour chicken rotisserie act, turning over every 15 minutes to ensure that all sides of my bladder were exposed to the BCG. I felt a burning sensation in my bladder.  I was freaking out wondering what it was doing to my insides.

The very first time I voided out the BCG, it totally took me by surprise.  I had a feeling that it would hurt, but wow! It felt like hot razor blades! I can tell you that I said a few choice words.

The side effects from the first 6 week set of BCG treatments were mostly of the flu variety; low grade fever, chills, muscle and joint ache, fatigue that lasted about 48 hours. It stretched out to about 72 hours by the end of the six weeks.  Other side effects included digestive upset including inflammation of my hemorrhoids and constipation, a fuzzy headed drugged feeling similar to chemo brain and night sweats.  I had the joy of the onset of menopause coinciding with my BCG treatments.  I also had a lot of depression to cope with.  That was the longest 6 weeks of my life.  It was tough to get feeling sort of good again and then have to push myself to go to the clinic for another treatment.   I read a lot. I read about a lady that was undergoing breast cancer treatment and had taken up quilting to take her mind off things and being creative helped her feel like she could still do something useful.  I had taken a beginner’s quilting course a few months before my diagnosis.  I thought, “Maybe thiswas something that would be fun.”  I visited a fabric shop, purchased several lots of material, and got busy.  Since it was the fall, I thought that the quilts would make good Christmas gifts. I ended up making 4 twin sized quilts in 6 weeks.   It definitely did help with lightening my dark moods and taking my mind off feeling lousy from the side effects.

After my treatments were finished, I had another rigid cystoscopy exam about a month later to check on my progress. Since I now knew what to expect, I did some serious deep breathing to relax prior to the exam.  The news was good.  There were no new tumours. My bladder was clear and a healthy shade of pink except for one faint dark pink patch which my urologist said was a little bit of remaining inflammation from the BCG treatments and would clear up soon. My urologist was very satisfied with how things looked and said from here on in it would just be regular cystoscopy checks unless a reoccurrence happened. He wanted to see me again in three months. It was early December.  He wished me Merry Christmas and left.  That was the best Christmas present anyone could have given me.

I continued with cystoscopy checkups every 3 months and all was well except for dealing with menopause symptoms until one day, shortly before my scheduled cystoscopy exam in July 2010, I passed a small amount of blood with clots.  I was shocked to see the blood.  I had refused to believe that I could actually have a reoccurrence. My doctor had told me that many patients have a lower risk of reoccurrence after the 2 year mark.  I was 3 months shy of that goal and was hoping once I got to Christmas 2010, I would be on a 6 month schedule for checkups.  Since my exam was just under two weeks away I didn’t panic.

When I went in for my check-up I did mention to the nurse that I’d passed blood just a little while before. She made note of it on my chart and then helped me prepare for my exam.  When my doctor came in, she recounted what I’d told her.  He took it seriously and told me this would have to be a longer exam as he needed to check more thoroughly.  We didn’t find the source of the trouble until he turned the scope to look at the top part of my bladder.  Sure enough there was a single urothelial carcinoma tumour staring right back at us. My urologist slowly withdrew the scope and said he was sorry, but this would mean a second surgery.  I asked if I’d have to undergo more BCG treatments but he said we’d need to wait for the pathology results first, but most likely yes. I was alarmed that a tumour could grow so fast in such a short period of time. It had only been a little over three months since my last cystoscopy exam. Anyhow, he asked the nurse to get the paperwork for the surgery and said “You know the routine now.  I’ll see you soon.”I managed to hold in my emotions as I filled out the necessary paperwork.

After I left the exam room and got changed, I saw my hubby waiting for me. We walked back to the car in silence. When I got into the passenger side, I leaned forward and thumped the dashboard. I started to cry.  “I can’t do this again, I just can’t.”We drove home in silence except for the occasional choking sob emitting from me.

I knew that I needed more help if I was to avoid the mental darkness of the first time. I hadn’t received any psychological help from the cancer centre previously so I had no desire to contact them again.

I went online googling bladder cancer. That is when I noticed the link for Bladder Cancer Canada.  I joined almost immediately, and it was a relief to be able to post questions and concerns on the discussion forum.  I’d found my “tribe”.  Previous to this, I’d had no contact with any other person who had or had had bladder cancer. I was grateful to actually meet other women with the issue. I had mistakenly come to the conclusion that I had some kind of rare disease and was on my own. It was here that I learned more about the size and scope of the disease.

I had recently learned about cystectomy (bladder removal) surgery having read posts by those who had undergone the procedure and for a brief time wondered if that was something I should consider rather than endure the ups and downs of reoccurrences, TURBTs and BCG. However, that thought soon changed when I learned about how extensive the surgery was and the length of recovery time and risk of complications.  This was especially so, when I realized just how minor my recurrence actually was. Discussions with those on the forum really helped me put things in perspective.

I had my second TURBT surgery in September 2010.  The pathology results came back the same as before so my doctor recommended another regime of BCG.  This time it would not only be a second set of 6 treatments but they would be followed by 3 sets of 3, once a week for three weeks in March, June 2011 and the final set in January 2012 making it a total of 15 treatments. On top of the 6 I’d already had in 2008 that would be a grand total of 21 treatments.  I was to have cystoscopy checks in between treatment sets. My mind was spinning. How could I manage to do all of this?

My second round of immunotherapy treatments was at the hospital in the south part of the city.  I was also determined that this would be a less painful experience or I just wasn’t going to do it.  In my confused mind, I didn’t realize what a dangerous risk that type of decision might mean for my health.  I was lucky. For my first treatment, I got a nurse that realized that I’d experienced some significant trauma to that region of my anatomy and she told me that my experience here at this clinic would be totally different. She was honest in telling me that she couldn’t guarantee that it would be pain free, but she would do what she could to make it as bearable as possible.  She started out by explaining that she would use a much smaller sized catheter and put freezing gel in the urethra just like for a cystoscopy exam as well as lubing the catheter up with the same gel so it would slide in easier.

When she got me prepped and ready to go, she discovered part of my problem.  She told me that I had a partial urethral prolapse – part of my urethra was hanging outside the body and that could mean it was making insertion more painful. When I asked about the cause, she replied that it could have come about because of all the surgeries, scope exams and catheterizations I’d undergone, and maybe menopause, but not being a doctor she couldn’t say for sure.  Just having that information alone, helped me realize that I was being believed.  My pain and discomfort was real, not in my head as was previously implied to me. I also felt respected. She didn’t make me feel like I was a total wuss for wanting extra help.

She got me to deep breathe before she did the treatment because she explained that that would help relax the pelvic area muscles.  I did as she asked.  It wasn’t pain free but it was doable.  She made lots of notes in my chart about what we’d done that day.  Most of the nurses followed it for subsequent treatments.

Some treatments went better than others. The side effects were heavier during this second 6 week round than the first, probably due to the fact that my body was already sensitized to the BCG. The round of 6 treatments was followed by as mentioned and what is referred to as maintenance or follow-up treatments. These were 3 sets of 3 (once a week for 3 weeks), at 3, 6, and 12 months from the time of the original 6 week set.

The side effects of headache, fever, chills, night sweats and muscle ache got pretty severe, so my urologist eventually agreed to reduce the dosage for the last four treatments. He also advised me to try Aleve as a painkiller versus Tylenol.  I did, and found that it helped get the muscle and joint pain down to a bearable level. I did get into a discussion with my urologist about the urethral prolapse but at this time he felt that it didn’t warrant any further treatment especially since I don’t have any issues urinating or with leakage.  I was fine with that, as I’d had enough with stuff being done “down there.”

During most of my BCG treatments I lived with the mindset that I was being poisoned by the drug.  My son’s former tutor came to my rescue by suggesting that I try to visualize the drug working in my body and destroying any cancer that might still be there. It took some practice but it eventually worked.

My acupuncturist made a lot of suggestions for getting me to think more positive in order to aid my healing. One of those suggestions was to start doing yoga.  Yoga helped me develop more body core strength and calmed my mind. Once I started to calm down mentally, I became more focussed.  When I became more focussed I found that I handled things much better and my reactions were more calm and rational. I started doing a lot of reading on alternative and complimentary healing methods, and delving into the cause of sickness and disease and about how to get one’s life back in balance. Getting cancer was a huge wake up call. It was past time for a total life make over.

I started by revamping my diet by eating more fruits and vegetables, and omitting as many processed foods as possible. I also have reduced the amount of meat that I eat and avoid processed meats like bacon, hotdogs and canned meats. I drink filtered water, green, black and herbal teas. I do treat myself to the occasional sweet but try to stay away from sugar.

I started taking vitamins including Vitamin D which I was told may improve the success of BCG treatments, a probiotic, cranberry and blueberry pills, and occasionally drink a greens powder supplement.  I use herbs like rose hips and hibiscus in tea to ward off the flu.  I now get regular flu shots and do as much as I can to strengthen my immune system.

In addition to yoga, I’ve also increased my walking, do regular stints on my indoor bike and most recently started lane swimming. I must be doing something right because with a recent exception, I rarely get sick anymore and have been cancer free for 8 years.

One day not long after my 2008 diagnosis, I felt the strongest urge to write everything down.  My hubby was at work, and the kids were at school so I had the house to myself. I scrounged in a cupboard and found a couple of long lost notebooks. I sat down at the desk in the spare bedroom and began to write. What started that day was an emptying of my soul – confessing all, expressing anger at anything and everything, any injustice that I thought had been done to me, including all sorts from my childhood.  It took several days to complete.  I filled two notebooks. I kept them hidden so that other family members wouldn’t read them and possibly be offended.  About a week after I finished them, I destroyed them.  I felt so much freer after letting all that out.  I realized from this exercise that I needed to forgive and forget about a lot of things in order to heal.

Another important discovery that eventually helped restore my faith and mental mindset, was finding “The Life Recovery Bible” in our main city library one day.  Although this version of the bible deals mainly with overcoming addiction, the notations can be applied to many other areas of a person’s life.  I found it helpful in healing my past and learning to forgive myself and others.  The Life Recovery Bible did a lot to explain God’s viewpoint on the human condition and the how’s and why’s of it.  I learned that we are responsible for our lives and decisions.  I had previously been a blamer – an “if only” person, “If only this was this way, or if this had happened, I could have been this or done this.”  I now understood that it was my responsibility to decide what I wanted for the rest of my life.  That was a huge awakening for me.

Another thing that really helped was taking a course called “The Artist’s Way”. This course helped me learn to become an authentic person. That was the biggest impact that bladder cancer had on me.  It totally shattered anything that I believed in or who I was, and believed about myself. I needed a complete makeover in more ways than one.

I decided to treat myself while going through surgery and treatments.  It is/was a reward for getting through each stage successfully. I kept the treats small – a new paperback novel, or a favourite food treat. But it gave me something to look forward to and yes, made me feel good about myself – I do deserve this. I still do this when I go for my annual cystoscopy check-up.  These check-ups are celebration days, a remembrance of all that I’ve conquered. I also have a celebration get together coffee or lunch with another bladder cancer survivor.

I needed to have a new purpose in my life.  For years I’d been caring for my kids and other family members.  I didn’t know who I was or what I wanted any more.  I have made great strides with this, but this is one area of my life that is still on-going.

I had now been a volunteer with Bladder Cancer Canada for a couple of years and with another Calgary survivor had started an in person support group.  We’ve had the group operating for a little over four years and find great satisfaction in supporting others with their bladder cancer journey.  Our experiences have also taught us that there is still much to learn in the world of bladder cancer.

This was all great, but I was still looking for something more. It was the email that I received from Wellspring Calgary in the fall of 2012 about Patient Engagement Research that changed the direction of my life and gave me my current purpose. This program trains people (patients) to do research with other patients. The first day that I walked into that classroom, I knew that I’d found my second “tribe” even though I’d never been to university.  It wasn’t easy, but the things that I learned in 2012-2013 further taught me to believe in myself.  I’m now a PaCER (Patient and Community Engagement Researcher).

I’m also involved with Alberta Health Services Cancer Strategical Clinical Network as a volunteer Patient Advisor.  I took on this role as well in the hopes that I can work with AHS staff and clinicians to help make things better for cancer patients in our health care system.  This wish came true recently when I was given the opportunity to do a bladder cancer study with another PaCER colleague about potential improvements to the patient care pathway in Alberta.

This has led to a resurgence of my desire to write about things to help others. Now after taking some courses and getting positive feedback, I realize with effort, I stand a chance of realizing this dream. This bladder cancer patient book is just the start of that.

One thing has led to another.  All I can say is that everything that I’ve done and learned in the last eight years has made me into a new and much better, stronger person.  Do I wish that I could have done it without getting cancer? You bet that I do.  I wouldn’t wish bladder cancer or any other type of cancer on anyone.

Not everyone will have the kind of journey I’ve had.  Each person’s journey with bladder cancer will be as unique as they are.  I dream of the day people won’t need to read material on cancer or go through a cancer journey but until then….READ ON and God Speed.

[Jack Moon]

Here are 2 links to some discussions regarding the outside bag

https://forums.bladdercancercanada.org/forums/search/ileal+conduit/

 

https://forums.bladdercancercanada.org/forums/search/outside+bag/

Jack

• This reply was modified 5 years, 9 months ago by Jack Moon.
• This reply was modified 5 years, 9 months ago by Jack Moon.
• This reply was modified 5 years, 9 months ago by Jack Moon.

[rcfree]

I too am in a dilemma regarding outside bag or neo however don’t see many post on the pros of an outside bag. I do see lots of posts on the benefits (and hardships of the neo). Is there a reason for this. Just curious.

[Staff]

Thanks Marysue:

I will just put up with it. It’s not so bad during the day when I am busy doing things. I usually don’t even notice it and like you have alluded to, it seems even less when outside.

It is just one more thing for me to be anxious about. I have a diversion decision coming up at the end of the month between a neo-bladder or the outside bag with a stoma. Even though I am trying to read as much about these as possible, it is not making my decision any easier and that anxiety is just compounded by my perceived louder tinnitus.

Quite a journey.

[marysue]

Hi Janine!

Wow! Back to strong walking 5 weeks post-op. That is amazing. It took me more than 6 weeks to get back to normal after the TURBT, never mind doing a radical cystectomy surgery.

I haven’t had to do the outside pouch surgery but suggest that you PM some of the members on this site that have the pouch. GerryW is one of them. He does use some kind of support belt because he does lifting at work. Whether that would be the correct item to help, I’m not sure. If you don’t get an answer on the site I suggest that you call the BCC toll free number and see if you can be connected with someone that may have had the same issue. The other thing I suggest is contact any ostomy society/support group/hospital clinic in your area and see if they have any suggestions for support options and clothing adaptations. Medical supply stores that sell the pouches and associated equipment may have something as well.

The one clothing option that comes to my mind are the yoga pants that Walmart sells. Some of the styles have a large fold up/down stretchy waist band. Maybe the waistband could act as a support and you could tuck the pouch inside or be used in combo with some kind of support belt? These pants usually run less than $20 a pair. I envy you. I can’t get into skinny jeans nohow. I used to weigh about what you weigh but have gained weight the last 4-5 years despite regular exercise. I’m not quite 5’8.

I agree with Ki, if you feel that your urine output is huge, maybe it would be good idea to run this past your uro, especially if you aren’t on any directics or other meds that cause you to produce more urine than usual.

It may be just a case of that you are getting better urine flow now that you don’t have any cancer issues slowing your body down. Your kidneys may be just functioning better. Just for reference – a friend of mine whose hubby is a retired radiologist, told me that her hubby said that a bladder can hold up to a litre of urine. Mine can. When I was at the BCG clinic and had to drain the urine after treatment, the nurses used a floor bag because I would have more urine than the leg bag could hold. I often had an output of 700-800ml after the two hours was up. I easily hit the 1 litre mark after 8 hours of sleep. I got curious one time and measured my urine output with an old measuring cup.

Anyhow, glad to know that you are healing and are out and about. I hope that my suggestions are a little bit of help. Take care and continue to be well. Let us know what you find out. (((((HUGS))))