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Hi folks,
Paul and I have had a couple of weeks of (something close to) hell, but I THINK we are on the correct road to recovery now, so I thought I would relay how Pauls’ TURBT went. I wish I could tell you it all went off without a hitch, but it seems that nothing is easy when dealing with our medical system these daze.
March 30th 2022 – Paul’s TURBT surgery day.
8am: Admitted to Day surgery. Our wonderful nurse walked us through the upcoming procedure and answered all and any questions. He was very considerate and even came to check on Paul before he left for home the next day.
9:30am: Delay to Paul’s surgery…
11am: Paul finally gets taken into surgery and i was told the procedure to last approximately half an hour and would be in recovery for approximately 1 1/2hrs, so we would possibly be on the road back home by 1pm, 2pm at the latest….
Noon: I had just sat down to eat a (very dry) egg salad sandwich. I know…. I do this to myself all the time, but my body says it just wants something simple and big meaty sandwiches never appeal to me when i’m stressed! Thankfully i had no repercussions from a ‘days old sandwich’ as my lunch was interrupted by a call from Dr B, Paul’s Urologist.
She told me that surgery was complete. She removed all tumour that she could see. Paul was going home with a Stent in his Ureteric Tube, as a tumour was growing very close and she had to scrape close and needed to put in this Stent in order to keep the kidney flowing well into the bladder. She also told me that Paul would be going home with a catheter for 5 days. And that’s all she was going to say, but of course i had to ask the question…. I asked “Did you have to go deep?” She said “Yes”. I asked “Did you HAVE to go in to the muscle” and she said “Yes” It seemed right then that my world could be falling apart and I had no idea what to do!!! Unfortunately I phoned my sisters and told them what the doctor told me and we ALL assumed the worst, but as it turns out, even though she had to go into the muscle to get ‘clear margins’ based on what she could see, she can not tell us definitely that the tumours have gone into the muscle itself. She also had to remove a number of small tumours at the back of the bladder wall, so Paul was bound to be feeling some pain right!!
Dr B assured me that Paul was to be doing as expected and would be in recovery for the next 1 ½ hrs or so and Day Surgery would call me as soon as he was moved to their ward. I waited and I paced…
2pm: still no word, so I tracked down a nurse who said that Mr Allen had been having a tremendous time getting his pain under control, so they needed to keep him in recovery until it was managed properly. They would call me as soon as he was back in the day surgery ward.
3:30pm: By this time, i was beside myself with worry. I went to the reception desk and asked if she could give me any news. After checking, she came back and said that he had been back in the ward for about half an hour and i could go back and see him now!
When i took one look at Paul, i knew he was in really bad shape!! He was delirious with pain and told me that he really wasn’t sure how much more he could take!! I can’t say how it tore my heart out to see him in so much pain.
I was told that he was probably in pain from the spasms and they had given him enough narcotic to drop an elephant! 2 shots of Fentanyl, morphine and a little blue pill to relax the bladder. I asked about his urine output, concerned as to whether or not he was flowing properly and the fact that he was complaining about severe discomfort in his abdomen. The nurse assured me that as long as i could see a constant output, everything is fine. Final last words right! As soon as Paul’s urologist was able to free herself from a very busy surgical schedule, she immediately knew something was wrong! His bladder was extended and she was not happy with the output at all, considering the amount they were pumping in to him! So immediately she tried flushing his bladder with a very large syringe. And after the fourth flush, she was highly concerned that she would have to take Paul back into surgery. THANKFULLY a couple more flushes a large number of clots came blasting out!! Paul felt immediate relief and passed out for over an hour!!
The doctor told me in a report that she had resected all visible tumour in the bladder. It was mostly involving the right bladder wall and there were some small tumours on the back of the bladder as well. She placed a Ureteric stent on the right side as the tumour was close to the right drainage tube of the ureter. This is to allow the kidney to drain and for that area to heal. She resected into the muscle layer to clear out all visible tumor. The final pathology report will inform us as to how deeply the tumour went and whether or not muscle was involved. This will guide our next steps. The stent is staying in the full 4 weeks, booked to be removed by the Urologist on the 25th of April. She told me that she would need to keep him overnight due to the complications.
And just as a side note to this particular horror. The tray that the urologist was trying to put the bladder flush had a break in it, so all of the bloody mess from Paul’s bladder was leaking all over the table top, flowing over on to the bed and on to the floor!!! The doctor was horrified and was trying to tell the couple of nurses that walked by, but nobody was in any rush to help her out!!! It was absolutely incredible for me to see, I was horrified to say the least!
Knowing that they would be moving Paul into the surgical ward in the next couple of hours. I went and booked a motel up the road from the hospital. By the time i got back, he had been moved into a room (that had nobody else in it until 10pm that evening) but shortly before i had arrived, they had needed to do another bladder wash due to some clots forming again. The poor soul was exhausted and wired for sound. Couldn’t get comfortable because his Spinal Stenosis doesn’t like to be placed in one position for hours at a time!
They had huge bags of saline washing through his bladder for the next 12 hours. And although im really uncertain as to why they would do this at the hospital, but they opened up the valve on the large overnight bag and just placed it over a metal bucket to drain. Which would be understandable if the patient didn’t buck around like a wild horse all night, cause the bag to fall out of the bucket constantly, draining all of Paul’s fluids ALL OVER THE FLOOR!!! Nobody seemed overly concerned (except for myself), so i grabbed as many large pads as possible to lay around the bucket after placing the bag back in multiple times. I felt very badly for the lady who was brought in overnight and expected to walk through the mess on the floor to go to the bathroom, expected to just go right back to her bed!! Never mind the contamination all over our shoes, being spread throughout this ‘surgical unit’! You can well imagine my thoughts on the general cleanliness of this hospital and its dependability factor was dropping by the hour in my eyes!! But what do you do… if I kicked up a fuss, the chances of them taking it out on Paul were not worth me taking the chance!
March 31st 2022
When i got back the first thing the following morning, i was told he had a super restless night, not because of any pain in his bladder, it was all because of his back, poor bugger! His bladder had been running clear for the past 3hrs on its own, so they were confident that he could go home that day. It couldn’t happen soon enough for either of us, we hit the road as soon as possible. Paul hadn’t had an easy time keeping his fluids down, telling me that they weren’t concerned as he had a constant flow of fluids going through his body, so there was no worry of dehydration. But on the way home, he vomited what fluids he had taken in since leaving the hospital.
When we finally arrived in our little town, I picked up Paul’s prescription, as well as some chewable Gravol (his throat was really mucked up from the anesthetic) and drove another half hour to get my poor husband home to a clean, safe environment! I thought we would be on a smooth road to recovery from here on in and we could concentrate on getting him strong to face the next phase of this journey.
We had a few hiccups along the way… although Paul’s bladder was doing all that it should have been doing, he really wasn’t feeling any better as each day went by. It was a week after Paul’s surgery that his Liver developed Hepatitis, in reaction to the Sulphur in the antibiotics! He was rushed back down to the hospital where he had his TURBT surgery (3hrs away) in an ambulance after spending a night in our little triage hospital, going yellower by the minute! After spending a night in another emergency room and the discovery Paul’s allergy, all his medications were stopped and he was released. Once again we were on our way home to get Paul’s poor body back to good health!!
We called on our family members from Alberta, to come and give us some moral and physical support, we were feeling totally done in and having our family around was like getting a jolt of energy!
It has now been 2 1/2 weeks since Paul’s surgery and he is still completely exhausted and his appetite is on and off, so i am trying to focus on getting his energy levels back and now we have 4 more daze to wait for the pathology report. We go back to see Paul’s urologist on the 25th to get his Stent removed and at that time the urologist can have a look around Paul’s bladder to see how it is healing.
Sorry, this is such a lengthy update, I do tend to go on…
Wish us luck you guys, we’re hoping to be through this nightmare sooner than later!
All the very best from the Allen Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comHi Petra,
I am so sorry to hear about Paul’s and your experience…Yikes! I sure hope things will improve for you folks. I will be sure to let the others in our Support Group call know about Paul’s experience as they are curious to know how things have gone.
Thank you very much for providing the update. I’ll be keeping an eye on your post in here to keep abreast of Paul’s situation.
My best,
Thank you for sharing you and your husband’s experience in the first TURBT. Hope everything goes smooth from now on.
best wishes
Good morning Nightingale,
Please pass on my best to the monthly support group, I will see you all at the May meeting and give you all what we pray is going to be a positive update!
These past couple of days have been good ones for Paul. He is finally starting to feel more like himself, although his sleeping patterns have been completely disrupted, that is definitely a challenge still, but not a major concern yet, as he is able to take naps during the day when needed.
I will update when possible and I thank you for your concern.
All the very best from Petra, Paul and Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comHi Joe,
It has a been a rough start to this journey, but one way or another we will make it through in one piece! We’re never given anything we can’t handle right!! This is and will continue to be my Mantra…
Smooth sailing it will be!!! Thanks for popping in to show your support!
All the best,
Petra, Paul and Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comHi folks,
Paul and i recieved really good news today. The pathology report read as follows…
The Tumours were NOT INTO THE MUSCLE!!!
Paul’s tumours are called Lamna Propria. T-1 Low Grade! No visible sign of T-2 tumour in the muscle at this time!
1 in 5 people with this grade of cancer are likely to see T-2 tumours in a short period of time. T-1 Grade tumours are close to the muscle, so need to be kept a very close eye on.
Paul will be having another TURBT surgery in May! If any microbial tumours got past the 1st TURBT, we should see them in the next one.
If in May we are still at T-1 stage, then more than likely BCG treatments will start, as the 1st line of defence.
If T-2 tumours are detected in May, then we will proceed from there.
Monday we go to get the Ureteric Stent out of Paul’s bladder area and we have a few weeks to fatten him up and get him ready for the next go round!
We are blessed to have this news today. Thanks to EVERYONE for their ongoing thoughts and prayers.
All the very best from
Petra, Paul and our Furmily
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comCongrats.
My understanding is there are three tissue in the bladder wall. Epithelial Tissue, Connective tissue (lamina propria), and Muscle tissue. It is also a standard protocol to re-TURBT once the tumor has progressed to the connective tissue (Lamina propria). I read that re-TURBT is to remove sufficient tissue around the original tumor to give sufficient margin and avoid under staging by the initial TURBT. Your husband’s pathology report says T1LG. Usually, when a tumor progresses to T1 region (lamina propria), the tumor grade is HG. A recent study (2020) in Australia showed that of 67 patients who had the 2nd TURBT gives us some insight.
A study in Australia – published in 2020, of 67 patients, with with inclusion criteria of (1) newly diagnosed pathological TaHG (stage Ta, high-grade), T1LG (stage T1, low-grade) or T1HG (stage T1, high-grade) (with or without carcinoma in situ [CIS]), showed that at initial resection, T1HG was the most common stage (64.2%), followed by TaHG (34.3%) and T1LG (1.5%). Concurrent CIS was present in 73.1% (49/67) of cases. At the 2nd TURBT, 41.8% (27 of 67) patients were found with residual disease were found, but only 3% (2 of 67) patients were upstaged to muscle invasive. Both patients were diagnosed with T1HG at the initial TURBT. So, odds are in favor your husband not finding tumor in muscle tissue.
Weather is going to be nice. I hope you family will take an advantage of nice weather.
best
Hi Petra,
I am looking forward to having you join our Support Group call next Thursday, and as indicated in my email, I am so happy to hear that things are looking up. After reading about Paul’s initial experience and now reading the positive, I can only say “Thank heavens!”
Have a great weekend!
Hello Joe
Thank you for this insightful study! After getting my eyes uncrossed from all of the “LG, HG, T1’s, T2’s, () and #’s, it makes sense as to how the study and the fact that Paul was diagnosed with T1LG tumours, give him a very positive outlook on his next TURBT! We love these kind of odds! THANK YOU!!
We are finally enjoying some blue skies and taking advantage of the beautiful spring weather!
All the very best to you
Petra, Paul and Furmily
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comNightingale,
Paul and I thank you for your kind words of support! Although we are super anxious about another TURBT experience, we have been assured that this next one will go a lot smoother! Fingers crossed on that one!!
At least with the experience we have had we now know what we DON’T WANT TO SEE!!
I will update next week as to how Paul’s Stent removal went and then work on getting some meat back on this fella and get his energy levels back up, so that we can ensure that he is at his best once again to take the next challenge on!
See you on Thursday.
Petra, Paul and Furmily
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comHi Petra:
I’m sorry I’m a bit late with my reply. I got a bit behind with emails and checking this site this past week or so. Just too much on the schedule.
Nevertheless, I will add my good wishes to all that has been said so far. I’m so glad that Paul at least for the time being is not considered at the muscle invasive stage. As mentioned, stage 1 patients usually do a second TURBT as has been recommended for Paul. I’m praying for a smoother ride for this next surgery.
As you said, enjoy the warmer weather, get him to eat as well as he can before the next go round and it will go from there. Hang in. Be well both of you. ((((HUGS))))
Good morning Mary Sue,
Please, no apologies necessary! I think as the summer sets in, we will find ourselves happily distracted, what with our gardens and seasonal critters that need looking after, we should be taking advantage of all of these lovely moments. It helps to distract from those hectic moments we would rather do without right!
Thank you, as always for your best wishes and ongoing support. Paul and I are breathing a bit easier now that we know where we are at! We were a bit concerned to find out that Paul would be going in for another TURBT, so soon after his first, but I am comforted to hear that this is normal, considering the stage of cancer that he has been diagnosed with.
Paul had his (very long!) Stent removed last week. You guys forgot to mention that this thing was a mile bloody long!! Paul and I thought the Stent was only a couple of inches long… you should have seen our faces when we saw what was pulled out!!! Thankfully the procedure wasn’t painful and all went well. I was allowed to go in with Paul and was able to see the camera go in to his bladder, to retrieve the Stent. We saw a whole bunch of hanging scar tissue and i wonder how much of that will be cleaned up during the next TURBT procedure? (If any?) I understand it takes a few months for the bladder to completely heal?
We are quite nervous about the upcoming procedure. Considering how badly things went the last time! Poor Paul is still suffering from the Hepatitis, it has really knocked the wind out of his sails. Although we won’t have to deal with future Liver issues (we PRAY that we will have no further issues!), we are still trying to come to terms with the fact that for the next (however many?) months, one procedure leads into another and Paul is finding it super difficult to come to terms with having to be a ‘couch potato’ while he heals. As you have mentioned to me before in our conversations, this journey is TRULY IS an emotional rollercoaster! I can’t offer him anything more than my battle suit, ready to take on whatever we are given and support him through every stage of this beastly disease!
I think we will both get to enjoy some beautiful weather over the next few days! I’m off to get some flowers for my baskets tomorrow, a lovely way to get properly grounded. I hope you also get to get your hands in some lovely fresh dirt!
Massive hugs coming back your way Mary Sue. All the best
Petra, Paul and the Fur kids.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.comHi Petra:
Thank you for your good wishes. I’ve had a bit of a weird week with a semi urgent trip to the dentist, plumbing issues and now I need to get to my hearing specialist tomorrow to get my new hearing aids checked out. The wire that loops over my ear keeps coming out of the right one which shuts off the aid and also leaves it hanging and in danger of falling and getting lost. Oh the joys of getting older. Still I’m glad that I have the aids. I don’t hear well without them so I’m grateful for the technology. The aids are under warranty so they will be fixed for nothing.
The weather is nice and warm this week and my tomatoes and other home grown seedlings are hardening off on my back deck. I will plant them in the garden in a few days. I just need to get my youngest son out there to turf the dirt in my veggie patches which he will do either Wednesday or Thursday. Then the fun will begin.
I think that getting some flowers for your baskets is a great idea. When I was going through treatment etc. keeping my garden going was the thing that kept me sane because it was doing something normal and not cancer related. In the winter months I visited one of our garden centres just to see and smell the greenery and also one of our pet stores which has a huge cage of Marmoset monkeys on display, an indoor fish pond, bird room and a large aquarium area with many kinds of fish for sale.
Even if Paul can’t do too much at the moment just sitting outside in the warm sun works wonders for the spirit and I have always found the warm sun very soothing and healing. I’ve spent many an hour in a chair on our back deck recooping from one thing or another accompanied by either a nice cup of herbal tea or something cool depending on the day. I do have a lot of birds and squirrels that provide all kinds of entertainment. Jack rabbits and Arctic hares pay us the occasional visit too.
And it is hard to slow down to allow ourselves to heal. We are so used to being busy that we forget that it is okay to slow down and take time for ourselves. Right now the focus is on healing and full recovery, not the woodpile or numerous other chores. The one thing that I kept telling myself was that it was temporary. I would be able to get back up to speed in the future. With each extra nap, remind yourself you are one step closer to success.
Given that Paul has had a more unusual adventure with the TURBT surgery (I know that this is the understatement of the year), it will take him a few weeks or months to heal properly especially if he does end up doing the planned second TURBT. It does take time for the wounds to heal over completely. Drinking lots of water, doing short walks as able and resting are the best ways to help heal the bladder. If he does do too much he may set off some bleeding. If that does happen, just drink a lot of water and rest.
The one thing that kept me sane facing the surgery was knowing that the tumours were going to be gone. As silly or crazy as it sounds, I literally patted my bladder many times before each surgery telling the tumours that song – Na na na na, hey hey hey good-bye! And then telling my bladder it was going to be okay. I did the same during the rounds of BCG treatments. Before each treatment I would tell my bladder only 2 more, 1 more etc.
Processing all that has happened is going to take some time and as you have already discovered it will be day by day, or even hour by hour some days. And it is okay to be not okay. I’m sure that you know this already. Some days you will be mostly okay and still others will terrify you with thoughts of the “what ifs”. Some days you will need to let it out with a good cry or whack a pillow or something. Don’t hesitate to reach out for some mental health help if you and/or Paul need it. Paul’s journey has been more complicated than most and on top of the usual worries you have the pandemic mixed in as well. At some point in the future you both will look back and think – Wow! How did we do all that? You may eventually be able to help others with sharing your story just like you have learned from me and many others.
Best Wishes for the second TURBT and may it go smoother than the first one. Please keep us in the loop. ((((HUGS))))
Hi Petra,
Just catching up on your recent post and I chuckled when I read that Paul’s stent was a mile long!…My stent was only about 2 inches, but the string attached to it for me to pull it out was a mile long!!…
Remember what Amanda said about how she realised she had to do everything she could to help her body heal. She even went as far as changing her diet so her body did not have to work too hard to digest, but instead focus it’s energy on healing the body.
Before Paul knows it, he’ll be up and about. Enjoy the warmer weather!
My best,
Mary Sue, as the Beatles wisely sang, it really is “A Drag Getting Old”! Technology is fantastic when it works correctly. I hope you find a solution sooner than later! I’m not sure how far behind you are with your Hummingbird season, but ours have just recently arrived! And our Bats should be settling in to their house soon. Our Barnaby Black Bear is back, wandering through the yard in the evening time, wondering if we have any snacks for him. We have no fruit trees and my bird feeders are minimalized, so he doesn’t stick around for long. Thank you once again for your words of support, it offers Paul and i some peace of mind and body. Sometimes we feel like we are too far out in the woods!!
Alex, you got off lucky it seemed, a couple of inches would have been understandable and acceptable, but honestly, it looked like a suuuuuuper long and slim Slinky! I’m not sure I’d be wanting to toss that thing down the stairs though! Lol! I have been in touch with Amanda (such a wonderful soul!) and she has me on track to help Paul (& me!) through this next phase of his journey. Excellent advice!
You may have noticed that I started a new topic, asking about any experiences with the use of an Epidural vs General Anesthetic, but just wanted to put it out there on here as well…
Paul is scheduled for his second TURBT sometime in the next 3 weeks. His first experience under general anesthetic was disastrous and we were wondering if going with an Epidural might be more beneficial to his well being afterwards?
We spoke with the Booking Nurse this morning and she said that it certainly is an option and we should talk to Paul’s anesthesiologist prior to the surgery. She said that it is a longer ‘stay’ time in the hospital (uuuuugh, we want to avoid that at all costs!) as the epidural has freezing affects below the waist, he will need to be able to walk and also to be able to pee on his own, once the catheter is removed.
Having been faced with this little tidbit of information, we wonder if it might be a good idea at all? If the catheter is pulled out and he isn’t able to pee on his own, then the catheter has to be put back in and the chance of his bladder being over extended again is too painful for Paul to go through again.
Any thoughts, experiences or just plain suggestions would be appreciated. Thanks to all and the very best to you.
Petra, Paul and the Furmily.
“Ode to our Fur kids who can live only in the moment!”
Allensongmusic.com
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