post-op update

[SJay]

I had my RC on April 13 and was discharged on day 6. My surgeon said I needed a little bit of blood during the operation, and later found out it was 5 units. Hmmm, I think that’s about half of what is in my body. They used a rectus sheath method for pain management which delivers pain meds directly to the wound area. It was part of a study to determine if that or the spinal was better. I had very little pain. They also provided me with a PCA which seemed rather useless. Nurses (including a couple of first year students) and docs were all terrific. The resident had some trouble getting the super pubic foley out and he finally said he was just going to yank it, so they gave me some pain meds and hauled it out.

Had my catheter out 2 days ago. Again the darn thing was reluctant. In the end they sent me home with it still in. The ostomy nurse (also terrific and very helpful) said it was only the second one she saw get stuck, and she has seen a few. At home I removed it from the leg clamp after which it came out fairly quickly while walking.

Got my pathology report today. All clear. No signs of the sarcomatoid carcinoma in any of the margins, 28 lymph nodes, bladder or prostate. As the doc said, “it’s as good as it can get”.

Now I just have to figure out this neobladder, do some more kegels and get all my energy back.

All in all, things are looking pretty good.

[Marie 1]

SJay, take time to heal and adjust to your new way of life. As your doctor said, “it’s as good as it gets” Try to stay positive and live life to its fullest.

God Bless
Marie

[marysue]

Hi SJay!

Good to hear that you had your surgery and post op healing has begun.

5 units of blood is a lot. I’ve had 3 blood transfusions and have lived to tell the tale. Two were in childhood for urological surgeries to correct birth defects so I have no idea of how much blood I was given but with my emergency hysterectomy in 2002 I needed 3 units. I had become anemic due to ongoing blood loss prior to surgery and bled out during the surgery.

I suggest that you check with your doc post op about whether you will need testing for being anemic from the blood loss. I was horribly more anemic after the hysterectomy surgery and took iron supplements for several weeks post op. If you are anemic it will definitely affect your energy levels and ability to heal.

All the best and keep in touch and let us know how it goes. ((((HUGS))))

[Gord]

Hi SJay, aren’t those sweet words when the doctor says to you that your result is as good as it gets? I remember the feeling of relief after my RC/Neo surgery in June 2013, and then an even greater relief when I received those same words from my surgeon 10 days later. Have my 3 year CT scan tomorrow, and am expecting and hoping it will be all clear again. In some ways the period you are in now is the most difficult of this entire journey, though you are on the other side of surgery and on your way to a return to full health and strength. A wise man on this site told me to take each day as it comes, and to measure your progress in weeks, not days, as some days will be tougher than others. But you will see improvement week to week. The whole “training your neo bladder” thing is a process, but you will get there. A couple of things I did during recovery and training were really helpful, so I thought I would share them with you. 1. Walk, walk, walk, and then walk! 2. Be careful about getting constipated, as you do not want to be there right now, so adjust your eating, go slow, and use Metamucil or whatever you have to do! 3. It sounds funny, but I kept a voiding diary, with times and amounts. It really helped me see progress over a period of time, as I expanded the capacity of my neo, and went for longer periods of time between voiding – I got a container (looks like a cowboy hat from the hospital – that fit on the toilet seat that allowed me to measure output. 4. I bought a toilet seat booster that raised the level of the seat up a few inches, helped me quite a bit. 5. Be patient with yourself, it is a long road back to health, but will gain your strength back in time. I returned to work 3 mos after surgery. You will get there. There will be some accidents and wetness along they way, but in time you will achieve most of your continence back. As an encouragement to you, I returned to full continence, day and night, not something everyone achieves, but possible. Hey, if you have any questions, please feel free to message me and I will do my best to answer as per my experience. All the best, SJay.

[SJay]

@Gord
Thanks for the advice. I have been walking, although over the last few days it seems to make me leak even more. I plan on keeping it up, though.
The ostomy nurse gave me the plastic hat when I got my self-catheterisation training. The purpose was to measure how much was left in the bladder after voiding, but I’ve started checking to see what my output on voiding is as well. Keeping a log is an interesting idea.

[Sweetlife]

SJay, my husband is undergoing his radical cystectomy in a couple weeks in Vancouver. He was asked if he’d like to take part in the rectus sheath study as well. He is not sure if will, because he is hoping to request this method instead of the epidural and not leave it up to the study to decide which he will receive. I am glad to hear your pain was well managed and that you were well cared for. Thank you for sharing your experience.

Heather

[SJay]

Sweetlife
From what I understand, the purpose of the study is to determine if one method is better than the other. At the moment, each doc just does what they think is best. So I’m not sure if the rectus sheath is better or not for your husband. It worked well for me, though. You could ask if they have some preliminary results from the study.

Best of luck with your husband’s RC. Let us know how things go.

[Arn’s bladder]

Arn has to have his bladder removed. He had his consultation with Dr. So at VGH this morning. He was very caring and to the point. Arn has a 3-month ‘window of opportunity’ before the cancer spreads. Dr. So said BCG treatments might have a 20%-30% chance – not a good risk. Clinical trials starting in approx. 6 months. Arn can’t wait that long. Adding meds like MMC or EMDA ‘not proven in BCG failure’. We were both given the booklet on what to expect from radical systectomy (bladder removal). Definitely not a walk in the park! Arn refused surgery, but Dr. So asked him to think it over & let him know next week what he has decided and that he wasn’t pressuring Arn for an answer today. We were in shock – not expecting that news. Thought they would try chemo or some other method. Arn went to work and I went and visited my girlfriend of 43 years. She is also Arn’s sister-in-law.

When Arn got home from work I asked him how he was. He said he’s been thinking about what to do. Not much of a choice – an “inney’ or an “outey”. Maybe as soon as 3 weeks from now. Arn still wants the neobladder which is fine. He asked me to ask those of you that chose the neobladder if you were happy with the choice, and if it was successful. Well, can you believe, as soon as I logged in I was at a page where 3-4 people were discussing their recent RC’s, and 1 person had theirs since 2013 !!! Exactly what I needed to read. God moves in mysterious ways. Thank you for sharing your experiences. Two of the people are from BC, and being treated in Vancouver. I was so relieved that I could give Arn this information right away.

Will keep you posted, good wishes to all –

Arn & Kory

[Paul D]

Thanks SJay, your experience helps me understand what is ahead. I hope your progressing well with the Neo and as I have read so many times you are adjusting to your “new normal,” this term is a bit of a worry for someone like me who has just started on the BC journey but I take heart from your experience.
Love and best wishes
Paul

[SJay]

I’m glad that you can get something out of my experience. I tend not to be a worrier, which helps. I’m most comfortable when I’m doing the things I normally do and feel odd when I’m in “convalescent mode” so I try to get back to normal routines. I’ve been on some longish day hikes with a fair bit of vertical (although I don’t have as much energy as before my chemo) and I’m playing my saxophone again as well as other activities. I had to get a split seat for my bicycle as the old one made me rather sore. I’ve got a multi-day kayak trip planned for September, and camping will hold some issues no doubt. I’m also planning a trip to New Zealand in November. On with life!

My issue with my neobladder is that sometimes I can’t empty it very quickly and sometimes not at all. My doc says to catheterize every day for a couple of weeks. The first time I tried it didn’t do much good, so I’m trying again with a 16 instead of a size 14 catheter. I also leaked a few times at night through the briefs, so I switched from Depends Men to the Tena Unisex and that seems to work. (Yes, I know that it’s contradictory. Sometimes it can be frustrating to be leaky and then not be able to empty easily
.) I get up to urinate whenever I wake up; I’m not setting an alarm. I’ll deal with getting better at night once my other problem gets sorted out. I’m still wearing pads during the day and will get rid of them eventually. Generally I’m pretty happy with the neobladder in spite of the issues.

[Paul D]

Thanks for info SJay the camping thing will be of great interest as that was one of the first questions I asked the Urologist when diagnosed with BC and he couldn’t give me an answer, I went through all the scenario’s with him but he is not a camper so keep us up to date with that one please. Did you have a choice before your RC as to what you where going to have i.e bag etc before settling on a Neo? Went to NZ last year and the south Island is so much like Canada we expected a bear and a moose to come out of the tree’s.
Love and best wishes
Paul

[SJay]

Paul – For practical advice try talking to an ostomy nurse. They have lots of experience. In Vancouver, they are available through the hospital. For example, they said if I had an IC and was hiking with a backpack and the hip belt was blocking the line, just lift the pack up every 10 minutes or so and it would drain into the bag. They also sited the stoma before surgery considering a backpack. (Even if you choose a neo, they still mark the stoma site in case they cannot implement the neo.)

I had a choice of a neo or an IC. For some reason an Indiana pouch was not offered and I never asked why.

[Paul D]

Thanks SJay I have a really good ostomy liaison nurse who is just a phone call away in the Mater hospital in Brisbane which is my main Urology centre, It sounds like your team gave you the best options, love and best wishes.
Paul

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