Paul's Story.

[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.

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