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Hey all, so I am having my RC on Friday, June 14th at Hamilton St Joes, with Dr Bobby Shayegan. I hope to celebrate Father’s Day by being cancer free!
Just looking for any advice pre and post surgery. Going for the neobladder.
Had my pre-op appt yesterday. I saw the stoma nurse in case they have to go that route, so I now have a nice purple spot on my belly where the stoma would go. I was thinking of writing a note to the surgical team on my stomach, but I better not. It would be pretty funny though!
Start clear liquids only diet on Wednesday, and the ever popular bowel cleanse Thursday morning.
I have an appt at a local physio clinic on Wednesday to get a some help in id’ing and developing my pelvic muscles for kegels, etc. I will see them again a month after surgery. Anyone done this? Was it helpful?
Have to be at the hosp at 6:05 am for my 8 am surgery – it’ll be an early start from our home in Cambridge.
Does anyone have a guess as to whether they might come out during surgery and talk with my wife about what they are finding and doing? ie. lymph node results, etc?? Or will they wait til after? What is your experience, esp anyone who has had Dr Bobby?
They are giving me an epidural prior to going under, for pain management post surgery. As far as I remember I will also have an IV in my arm, the ever present Foley – they said the suprapubic catheter might be in the Foley or separate. And they are putting something in my neck too.
During my last turbt they had some probs with the breathing tube so they might insert that before I go under this time. Yikes, hope not!
I asked about a low residue diet post surgery, and the nurse thought that would be good idea – any thoughts?
Ok, I will stop here – any advice would be helpful. I think I am ready for this! Hope this was not too graphic for anyone!
thanks for your thoughts, support and prayers, all appreciated!
Gord
PS. I have set a three month recovery goal to walk in the BCC Awareness Walk in Sep, already have donors, and a growing team, what about you?
Parental warning. This notice may contain graphic scenes, nudity, course language and violence. Viewer discretion is advised!
Now that I’ve got your attention, here is the good stuff:
PRE-SURGERY
a) Enjoy those times with your wife – you know, THOSE times. It may not be the same post-surgery, sad to say.
b) Laugh a lot. People will think you’re crazy, or they’ll know your trust in God is solid. Either way, you’ll enjoy life more.
c) Do the kegels when they say, but check about when you have the Foley in. Might not be so good. Not sure.
d) Don’t be anxious in anything. You know why and how.
e) Get as much sleep as you can now. After, your nights are going to be interrupted quite a bit for a long time.
POST-SURGERY
a) You’ll be on clear liquids, then creamy liquids for a few days after you awaken. When you get your first solid meal, be very slow and very sparse in what you eat or you will pay in ways that are not nice.
b) Walk. Then when you wonder what to do next, walk some more. It helps wake up the bowels which will stay asleep for days. But you can’t go home till they begin expressing themselves, if you get my drift (and others will get yours, trust me).
c) Stay on top of any discomfort. You should not have much at all, but sometimes you just need to take the edge off so you can sleep. Do it.
d) Have your wife or kids or some hired mafia gunman ensure that visitors only stay for BRIEF visits. You will be somewhat fatigued to say the least.
e) Have a good supporter on speed dial for those times in off hours when something happens that you don’t think should. Then call them and get some much needed support. And don’t hesitate to do it, ever, at any time, night or day.
f) Make sure your bowels are working – don’t get constipated. And if you do, try whatever it takes to “rectify” (excuse the word in this connection) the problem. Stool softeners, prune juice, laxatives, yogurt, suppositories, dynamite – ok not dynamite – you do not want a blockage. Trust me!
g) You will lose weight. Do not be too alarmed when your body appears to be a mere shadow of its former self. With the weight will also exit the energy level.Now that you want to go away on a long vacation and forget all about this, take a deep breath and go for a walk.
Know that many people are praying for the Lord to take the surgeon’s hands and perform His wonderful work in you.
Thanks Greg for your quick response! I can count on you for good support, comic relief, and much more! Got ya on my speed dial, brother!
Gord
One other thing my wife just pointed out. At Sunnybrook, and likely at St Joe’s and other hospitals, there is a volunteer area near the waiting room for people who are in surgery so that periodic checks can be made about the progress of the surgery. It’s not play by play colour commentary by any means, but allows the concerned spouse opportunity to rejoice that all is going well. I think my wife had a sister or her mother join her at times so that they could help relieve the monotony and give support.
Hi Gord
I have no experience with having the bladder removed. Just wanted to wish you all the best on your voyage to being cancer free.
You are in great medical hands and at a top cancer hospital. Dr. Shayegan has a great team!
All the very best my friend.
JackMy best to you. Just plan to enjoy Father’s Day. Cancer free is a great gift. A rather expensive one, but still great. I’ll keep you in my prayers.
Kiowa
Hi Gord,
Ken and Greg’s answers are very thorough (and entertaining!). I am glad you asked the hospital about the low residue diet. When I had my RC at St. Joe’s the dietician came in to give me detailed information about the diet. In case they forget to come by, ask a nurse to have the dietician come by. I can say without reservation that you are in great hands with Dr. Shayegan. He and his staff are knowledgeable and compassionate. If you are unsure of anything pre or post op, just ask. St. Joe’s does have someone in the surgical waiting room who can try to get updates for your wife during the surgery. Dr. Shayegan will come out and speak to her after the surgery if you ask him to. I wish you an uneventful surgery, a speedy recovery and of course, a long cancer-free ever after…..Hi Gord,
Your wife can ask the waiting room assistants for updates, they may be able to get some information. Dr. Shayegan did come up to the waiting room and spoke with my family after the surgery, but it is a long surgery and wait time for them. They should bring some reading material, visit the Tim Horton’s in the building, or go for a walk outside to fill the time.
You probably won’t get the pathology results (including lymph node results) for a week or so. Ask the attending doctors (they visit you daily after the surgery) about when you should expect to hear the results. I followed the low residue diet for several weeks after I got home and believe it helped.
In addition to what has already been suggested here, bring lots of stuff to keep you entertained, books, magazines, cards, music iPod and charger, cell phone and charger, etc. Once the nurses allow it, have your wife bring you some gum or mints. When I was in the hospital it was fall time, so I brought a comfy blanket, extra cardigan (note, a sweater won’t get around all the tubes and i.v.’s etc.) and wool cap. Be careful with the pain meds for the first few days after surgery, the stuff can make you go loopy! Don’t rush starting back on solid foods, stick with the liquids for an extra few days and give yourself time to heal. They have a white board in the rooms, because there is so much going on around you, I found it helpful to have my wife write down each day the nurses name for each shift, the day and date, and just basic information to help focus on what is scheduled for that day. Prepare yourself with questions for the attending doctors (doctors in training etc.) each day. With me there was about half a dozen of them that rushed in and out at about 7:00 am every morning. There is usually two people to a room, my roommate changed every 2 days or so, there is a curtain between you, but don’t be afraid to speak up and say hello and chat for a while to help pass the time, you’ll meet lots of nice people I’m sure. Tell your wife not to worry about visiting times, they let my wife come and go, as long as it is at reasonable times, they had no problem. Once you get in a room, your wife should ask the nurse for a business card with the ward phone number, then she can call the nurses anytime to check on you. Parking at the hospital is expense, you may want to look for alternative parking option nearby. Hope this helps!
St. Joes in Hamilton has a great nursing staff, so you’ll be properly taken care of and will be in good hands!
All the best with your surgery and post recovery.
Glenn
Thought of a few more things…. I believe St. Joe’s has a week long parking pass available at a reduced rate. You might want to call and confirm. Also, other out-of-town patients have had their spouses stay at bed & breakfast places near by. If you google B&B’s in Hamilton, you should be able to find several. As for past-times, the first few days, I could barely carry on a conversation – Glenn is right, those drugs do make you loopy. Once I felt better, I found a portable DVD player/laptop was handy to watch movies on, since I didn’t seem to have the focus to get into a book for long stretches of time. Just a note on the movies – try not to bring hilarious comedies…. it will hurt to laugh for the first few days! The urology ward has a kitchen available to patients & their families. I found this helpful once I was eating again and got sick of orange jello and apple juice! My husband would bring me homemade soup and my favourite juices and we would keep them in the fridge on the ward. Also, he would bring meals for himself, so he could spend the day with me and not have to rely on fast food. Best of luck Gord!
Gord, you mentioned in your blog that you thought you would likely lose at least ten pounds. I’ll be interested to hear the final tally. I lost thirty on a rather sveldt, toned, cut body – OK I lied about the body, but not about the thirty pounds. I’ve heard of others who have lost more but losing ten will not be much trouble, I suspect. I don’t know how many pounds they remove on the table itself since I was asleep at the time and could not concentrate. But after five to seven days without solid food, well, the weight seems to disappear. I must confess in the two and a half years since surgery, I have gained back twenty of the thirty, but I seem to have stalled there so ultimately the ten pounds has remained off.
One other thing…if your wife could post on this site after your surgery we’d love to hear how things have gone. If she prefers to email separately, I know Jack Moon would post it for her, or I would or…or…or. Because this is all about us, you see!
Oh, and don’t post a photo of the staples that close the incision. You’ll have those guys who collect scrap metal showing up in your room to steal them from you.
Just trying to be helpful…
Thank you all for your advice, support and ideas – means a lot to this guy! I do hope to be electronically connected while in hospital, but I will task one of my kids with posting an update on here post surgery, as well as on my blog, facebook, etc. Lots of people from lots of places following my progress. Great to have you all on my team!
If you are interested, my blog address is
Hi Gord,
Wishing you all the best on your RC and hope the surgery goes super smoothly. Mike’s surgeon did come out around 6:15 pm to let me know that they were sewing Mike up and that all had gone well. I remember thinking how good the surgeon looked for someone who had just performed at 10.5 hour surgery. He said it feels like an hour to him. Guess they really love what they do.
One thing I learned as the wife/caregiver was to be at the hospital for the early morning rounds with the doctors. I found that it was the best time to get answers to questions and frankly, Mike was so “out of it” he couldn’t remember what they told him a minute ago, let alone at 7:30 a.m. if I was not there. It makes for a long day but for me it was worth it to know that I was hearing things from the Urology team directly as opposed to through Mike’s drug-induced interpretation.
I wouldn’t worry about losing that 10lbs as Greg said. Mike went in at 217lbs and came out at 168lbs (he was very sick from pain meds so PLEASE tell your wife not to hesitate to ask them to change meds if you see that you are having any issues). Once they changed the meds, he was able to start feeling much better but it took a few too many days since I was afraid to suggest a change. He is now sitting right around 200 lbs…so it does come back. M&Ms; (the chocolate ones not Monique and Mike) seem to have a way of creeping up on your waistline..LOL!
We will be thinking of you on surgery day.
Monique and Mike
Hi Gord: I have been off the forum for a few days so I am a little late in wishing you all the best tomorrow.
BevHey just a quick note to give you some very good news. Saw my surgeon today and he informed me that my cancer was entirely in the bladder, no sign of cancer in any other samples taken during my RC surgery,11 days ago….by my reckoning, bladder gone = cancer gone! Thx for your support these last months, I will count on it continuing thru my adjustment to life with a neo bladder
Gord
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