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Hi everyone, my name is Lisa and my 63 year old husband, Gord, has bladder cancer. He hasn’t had any health issues prior to this and has really been a trooper so far. A muscle invasive tumour was found in his bladder in March of this year and removed by a local urologist. He was then put on a 16 week chemotherapy regime that has just ended. When reviewing our options he decided he would like to have a neobladder and our local urologist referred him to a highly regarded doctor in Hamilton. A recent scan indicated that there has been no spread however a new scope has been ordered for beginning of September with a surgery date of October 6 at the latest. On top of this, my mother had a massive stroke in February (lived 3 hour drive away). Needless to say, it felt like our world had exploded. I fought really hard (11 weeks) to get my Mum transferred to a rehab hospital close to where we live to avoid the constant stress of driving every weekend on the 400. We had decided that we would bring her home to live with us post-hospitalization with the expectation that she be able to toilet herself, dress herself, transfer independently and be able to be left alone for a couple of hours. She is due to be discharged on Thursday and none of this has happened. Gord has been trying to return to work during our wait period and has a note, from his oncologist, confirming is ability to return to work full duties. The employer isn’t accepting it and requires a consultation with their doctor, a GP, prior to his return. I feel like he is on the edge right now and am at a loss as to how to help him. I believe he needs to work for a couple of weeks to regain some of his sanity and self worth. We had really good intentions with my Mum coming to live with us but, I feel, that may not be a viable option. From what I have read, Gord will need quite a bit of assistance (mentally and physically) once discharged from hospital. I had thought about respite care for my Mum during the time of surgery and hospital stay but realized, after two overnight stays, that my Mum will, as she always has done, manipulate me emotionally and Gord will suffer because of it. I have my own health issues and am on long term disability from my work. I think that everyone believes that we should take on my Mum because I don’t physically go to work everyday not taking into account the reason I am unable to work. I really need Gord to be in a good place, emotionally and physically, in the time leading up to the surgery in order to help the healing process as much as possible. Any offers of insight, suggestions and support would be greatly appreciated. Lisa
Lisa and Gord:
Welcome to this site, though I absolutely know you did not want to be here! But now you have just become friends with a bunch of people who know to some extent what you are experiencing – at least in the bladder cancer arena. Glad to hear you are under a well respected urological oncologist’s care in Hamilton, I assume at Juravinski.I had a radical cystectomy with the construction of a neobladder three and a half years ago. The surgery is long and the recovery can be challenging, but Gord will not likely need too much physical assistance with things. The mental/emotional assistance will mainly be in keeping a big picture perspective and measuring progress week by week rather than day by day. He will need encouragement and as much laughter as can be mustered by those who are close to him – even when he is wet, leaky and feeling like he lives in the bathroom. This too shall pass and he will likely gain control in the daytime quite quickly. Nighttime is always a challenge, but that is why Depend undergarments and bed pads were created. Also why an alarm clock will help so that he can prevent those treading water scenarios. They will happen. So what! But he will do fine. If he wants to chat with me, let me know and I can send you my phone number privately.
Perhaps the best way you can help Gord is to have him speak with a couple of guys who have been through what he has been through and is going through. We can put him in touch with some if he wants that. His choice, of course.
All the best.
Greg
Hi Lisa and Gord
I do not have experience with bladder and prostate removal so I can not assist in that area. I do know that you are at a top cancer hospital with many top bladder cancer specialists. There are many here that have experienced the surgery Gord will be having and can share their experience and first hand knowledge.
Just wanted to welcome you both to the forum add my good wishes to you both. Our members will reach out to you both here on the forum, by private email and via the telephone. All you need to do is ask, it is that easy. Sharing our experiences is our speciality, you are not alone on this journey.
All the best to you both,
JackHi Lisa.
I also can’t offer any assistance to Gord as I had superficial bladder cancer. I do, however, have lots of experience as a caregiver being torn in many directions. I too had a complicated relationship with my mother who knew how to push my buttons. Why not, she installed them! There was a cartoon once that made me laugh uproariously. It was a young woman stating”My mother & I travel together often. She takes me on guilt trips regularly”. Keep your sense of humour when you’re ready to pull out your hair.
It sounds as if you advocated strongly for your mother to receive treatment close to you so you could support her regularly. Unfortunately she has not progressed enough in her rehab for you to care for her outside of a facility. That’s a game changer. Not to mention what your husband is facing -& your own health challenges on top of all that. I found I had to decide on my bottom line in terms of providing care to my mom & then stick to it. I can tell you I had a sense of peace when she passed as I did the caregiving on my terms & was still able to make a significant difference in her quality of life . It helped to have good friends I could turn to for support for me when I felt drawn into the abyss.
If you’d like to debrief with someone neutral & non-judgemental, feel free to private message me. Take good care of yourself or you won’t be able to be there for anyone.
BetteHi Lisa and Gord. My name is Gord as well. I have a good friend named Gord and when my son was young and realized this, he exclaimed “one dork, two dorks!” Thankfully he has learned to say my name right.
Anyways, over Christmas 2012/2013, at age 53, I was diagnosed with Stage 2 muscle invasive bladder cancer. I received 3 months of chemo at Juravinski in Hamilton (Cisplatin/Gemcitabin). In June 2013 I had a radical cystectomy, and am the lucky recipient of a neo bladder, which one year later, is working out very well. My surgeon at St Joe’s was Dr. Bobby Shayegan. I want to share with you that I am very pleased with the care I received from both him, the staff at Juravinski, and the nursing staff and interns on the 7th floor urology unit at St Joe’s. You are in good hands.
I would be more than willing to chat with Gord in the run up to his surgery, and be a resource after, as far as sharing my journey. A couple of the men from BCC were very helpful in my journey, just to know what they went through, what I might expect, what the range of normal was. It took a lot of the fear and apprehension away. Just private message me and I can give you my phone number.
I worked p/t through chemo, and went on sick leave one month before the surgery, and was off for three months post surgery, time I needed to heal and get my strength and endurance back, and getting my new systems working as they should. I understand that Gord and you would like some normal days in there in the run up to the big day. I remember feeling very well, and wanting to do something to fill my time as I waited.
There were some hard and frustrating days in there post surgery – recovery can be slow – but there was always the encouragement of others who had been through the same and were now living normally, albeit a “new” normal. Had some complications and ups and downs, but now, I am 14 months cancer free, and am really pleased with my result.
As I side note, a week after returning home from the hospital, my 82 yr old mom in law suffered a stroke while caring for me for one day when my wife was away for the day, so my wife had both her mom and I to deal with, then my dad started downhill and passed a few months later. It never rains but it pours, sometimes. Hang in there. Both of you. It gets better.
til we talk again
GordAll I can say is Wow! and double Wow!! You’ve got more than a plateful. The others have given you really good advice so I don’t think I can add to it except to say hang in there, stay with us, ask questions and don’t hesitate to ask for virtual hugs. They are in unlimited supply here. Here’s mine ((((((BIGHUG)))))
I think you find that in reading all the posts on this site you will see that everyone here is up front and honest. You will also find that even in the worst of conditions and as bad as things get there really is light at the end of the tunnel and it is not a train. I won’t bore you (at not right now!) about all the things I have had to deal with but I can assure you that if you do the best you can, don’t be afraid to ask for help,. stay positive, engage in humor (the best medicine) things will work out well. You are clearly experiencing lots of difficult things at the same time but everything will get resolved and you will once again enjoy a good and better life. As for God, this may be a good time for him to engage in something new and exciting until he goes back to work. Watching the girls on the beach is one and that would be my choice but you don’t live near the beach so skip that one; then there’s sky diving or maybe not; I think stamp collecting is probably not going to work well; or maybe doing burnouts in front of your house. Better yet someone elses’ house, like Jack or Greg. In any event hang in there and things will eventually lead you to a better place than ever before. I have found that I have become a happier, more balanced (people still argue about that one), more understanding and a more normal life and life style as a result of my hardships. We have all been where you are, not exactly the very same GPS location, but close and we made it. Granted, some things are worse for some than for others but you can make it through this. My best wishes and prayers are with you,
Kiowa
You certainly have lots to handle right now. I think with Gord’s situation that is enough for you to handle at home. He’ll need you 100% emotionally, and with your mother living there, I think that will be too difficult.
Be clear that Gord is your #1 priority and his health comes before your mother’s. I’m sure lots of people will try to take you on a guilt trip, but make your decision and stick to it.
You can offload lots of stresses by showing up here regularly!
Best of luck!Thank you all so much! Gord, Gord`s doctor is Bobby Shayegan so your comment provided us with some reassurance regarding care. We had heard he was one of the best and are happy to have him in our corner. I have shared “all” of your supportive messages with Gord however he is not very computer savvy and, actually, a bit of an introvert.
I will add that he returned to work yesterday after talking to the CAO of the City and has appeared a much happier, more tolerant man which takes a little bit of the load off of me trying to keep everyone happy.
My Mum came home yesterday and it has been challenging to say the least. The “guilt trips” and “attention seeking” behaviours have kicked in already. We are getting support from Paramed but have already experienced scheduling difficulties! My brother is visiting for the day and night tomorrow so he may be able to see what it is like to care for her but she probably will be “perfect” for him. I hate to sound so cynical but it is very frustrating when you put your heart and soul into helping someone maintain a, somewhat, normal existence and they fight you all the way. She will definitely go to respite care when Gord has his surgery and the few weeks after and has been clearly advised of the plan.
Gord received a 100 question survey from the St. Catharines Cancer Clinic which had a lot of irrelevant questions regarding his cancer and care but he completed it none the less.
After receiving a visit from a Rapid Response Nurse this morning I have been searching the web for free samples of incontinence care products. The delivery guy will laugh his head off with the pile that will show up as I got some for my Mum too. Any recommendations for Gord? I know that night time is worse but he is very vain so would like to know what products you have used that have been effective.
Please bear with me as I unload to all of you but knowing that there are other people out there that have faced the battle we are facing is helping to feel that there is a light at the end of the tunnel albeit a different one than we know today.
We were supposed to go and visit good friends tonight but the scheduling change for the PSW visit has thrown a bit of a kink in that. I know that Gord was looking forward to it. Me too, actually. I am getting Lifeline put in for my Mum so that will help to be away a little longer. Gord may need to use it too, you never know.
I do hope that you all have a fabulous weekend and thank you so much again for all your words of support and encouragement. I am so pleased that Dr. Shayegan directed us to this site.
Take good care,
Lisa (and Gord, of course)Bobby Shayegan is an excellent surgeon and Gord is in really good hands.
I used Depend diapers (undergarments) at night and stuffed each side with a Depend pad so that if my sleep was deep, the puddle I was in was not! I also put a pad down, but since I toss and turn, my bed was like a rat’s nest by the time I got up. Dry – but not so comfortable. Invariably when I did not put the pad down, I would be wet. It was very infrequent as time went on as your body does learn new habits. So ensure he is persistent and does not give up.
In retrospect, I would suggest that the things you love to do and look forward to and don’t want to miss are the very things you ensure you actually do (like visiting friends). Change the medical appointments around those things but don’t miss out on those things. They are too important. Just my own two cents worth from where I am on this journey.
Blessings to you both.
GregHi everyone,
It’s been a while since I posted as lots has gone on. Gord’s CT scan showed no spread of cancer so is booked for surgery October 6. He’s been back at work for a few weeks now and is so relieved considering the alternative of staying home and listening to my Mum. Yes, she is still with us! I have arranged for her to go to a retirement home for a month so that I will be able to tend to all of Gord’s physical and emotional needs. I really don’t think it has set in how difficult this situation is going to be and I (and am sure Gord) am starting to panic. We have had a “sitter” the last couple of weekends to provide some time for us to spend together which has been great but not without temper tantrums and whining from my Mum. I ask myself “who is this person?” and “why am I putting Gord through this?” My brother has been less than helpful as I expected but my mother still feels we shouldn’t sell the house and displace him. I have booked a room close to the hospital for the night prior and three nights after so I can spend as much time at the hospital with Gord that I can. Some of the questions I have are 1) how long is the surgery going to last (best case scenario of course, 2) should I stay at the hospital in case they need to contact me – what will I do? not sure if I will be able to read a book!, 3) should I ask Gord’s son to take a day off work and wait with me? 4) am I being selfish? I hope not as I want to be emotionally and physically prepared for Gord’s sake, 5) actually I will stop there as I am sure that your responses with help with any further questions that I may have. I have told Gord that it will be decision time for my Mum prior to the end of her stay in the retirement home. He has said that the situation we are in is not the one he signed up for when we first invited my Mum to live with us – pre-stroke – and I totally understand what he is saying. She has it really good here, why would she want to try and better herself when she is waited on hand and foot? She is even reluctant to go to outpatient rehab. We still haven’t had a visit from the case co-ordinator from CCAC so she hasn’t been put on a long term care facility waiting list yet. GUILT is a terrible thing for me. I love Gord so much and he has always been there for me, over the years, and I don’t want to let him down. We have pre-op appointment this coming Monday and Gord plans on working up until the surgery date. We are less than a month away from one of the biggest days in our lives and my Gordo is being so brave. He is very positive and even plans on taking an island vacation early next year. Woo hoo! Thank you in advance for reading my ramble. It’s kind of therapeutic to get it out. I am so happy we are going to have Bobby Shayegan and St. Joseph’s Hospital in Hamilton in our corner. Your feedback is very helpful and it’s amazing how many others are fighting this battle. Please send me some of your wonderful positive energy so that I am able to be the best that I can be for my Gordo! He’s worth it!!!! Have a great day everyone and best wishes to all of you.Lisa:
It’s probably good you will have less journey to the hospital. Do yourself a favour and splurge on the room in a good section of town.My answers to your questions based on my experience only:
1. My surgery was 5 1/2 to 6 hours long. I have heard of much longer. If it is a ileal conduit that they do (since the neo can only be confirmed upon the surgeon’s actual presence in the pelvis, well, his eyes and hands anyway), it might be slightly shorter, say 4 hours.
2. I think it is generally a good idea to stay close to the hospital in the event they come to you with reports. I believe there is usually a waiting room for families of surgery patients and a volunteer contact there. There is also opportunity to give your cell phone number for them to contact you if you go off for a walk or a coffee or a visit with a friend in the area around the facility. I know my wife went for a long walk outside, explored the books, drank coffee, watched any TV she could find in waiting rooms, etc. A visit from someone close TO YOU would also help.
3. If Gord’s son is close to you, perhaps. If you’d enjoy the company of one of your friends, ask them. Most friends would welcome the chance to visit.
4. No you are not being selfish. You are being quite normal. Relax a little a give yourself a break. This is a stressful time and you need to ensure you look after yourself so that you can be a help to Gord.
5. Plan the vacation. But give Gord enough time to recuperate. The physical healing takes a few weeks. The energy and confidence can take a little longer. Check with Bobby about timing of the vacation so it does not interfere with important doctor visits, etc.This seems a high mountain on this side of it. But you will climb it and even stop to enjoy the scenery along the way and laugh a lot. Be patient. Don’t look for huge strides day by day, but evaluate progress week by week and you will see progress. There will be hurdles, but you can get over those with help from the medical team, and us.
All the best. You both will do just fine.
Greg
Thanks so much! I was just telling Gord, over a beer in the garage, that I posted today and he got a little emotional. I know he is keeping so much inside. He has asked that we, definitely, make alternate arrangements for my Mum as his life is flashing before his eyes and he wants to seize every moment and so he should. Thank you for your feedback. I know that I have a good friend who would come with us to be with me. She was with me when he had his tumour resection. Only problem is that her husband just broke his ankle and he is laid up for a bit. I do have a cousin who lives close to the hospital that I haven`t seen for many years that I may connect with but I know I am going to be an emotional mess (not in front of Gord, of course). I have noticed that you actively participate in all postings and are so positive with your feedback. The world (at least ours is) is a much better with you in it!!!!
Thanks again and the very best of wishes to you,
Lisa (and Gord)Lisa & Gord
The doctor’s and nursing staff at St. Joseph’s Hospital in Hamilton are great, so he’ll be in very good hands. This type of surgery usually takes between 4 ½ to 6 ½ hours. The nurses will have you stay in a very comfortable waiting room. There is a Tim Hortons and a few other small shops located on the main level and a hospital cafeteria I believe on the second floor that could help pass the time while you wait. Definitely try to have someone with you for support, a few family members and or friends would be great. The Doctor will come to see you once the surgery is finished.
Here are a few other tips to help Gord’s stay in hospital after surgery. He’ll probably be on the 7th floor, the urology ward:
•Bring him a few magazines, books, newspapers, deck of cards, etc to help pass the time
•Bring some gum, candies or mints
•Of course you’ll have a bathroom kit, but include a small comb and mirror to use bedside
•Bring a sweater and cap in case it gets cold in the room
•You can plug in your cell phone to recharge in the room, so bring the charger
•There is a small kitchen on the ward that has drinks and cookies I believe, stock him up on a few drinks for the night time
•The nurses usually will let you arrive earlier or stay later than regular visiting times, so don’t be in a rush to leave
•There are two people in each room on the urology ward, so speak up and say hello to your neighbor. They were always friendly when I stayed there.Hope this helps. Wishing you guys the best of luck!
Regards
Glenn
Thanks so much Glenn,
It has prepared me a little better for the day of surgery. As for the stay, I have made sure to get a robe for Gord so that his back isn’t left open all the time lol and have shared your ideas with Gord. He’s never really had a hospital stay although is always puttering around the house so it may be a little interesting. Golf magazines, auto traders and cards are now on my list. As for candies, he is complaining of his weight gain over the last couple of months but I have shared some of the feedback of weight loss in the first few weeks so I am sure he can be convinced to eat them. I am a very social person, despite my health issues, so would not hesitate to speak with Gord’s roomie. My mother has had numerous roomies over the last six months and they have seemed easier to deal with than her – hahaha – it’s sad the number of people who have no one to visit them. That’s a whole different subject. Thanks again. I am, again, so pleased that we ventured on to the site.
Best regards,
Lisa
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