SUSAN'S STORY

[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.

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