Catheter finally out and PSA results today

Alice and hubby -
- congrats on the zero club membership at 6 weeks - some have to wait up to 12 weeks to get their first results.
-regarding incontinence - just go with the flow
- let your body heal - it takes time for the nerve endings to heal up and start communicating with each other again - it can take up to 14-16 weeks before you can start controlling your bladder again ( lucky ones have good or better control earlier on)
-have lots of extra-absorbent male guards - good fitting underwear -
-do your kegels as per your doctor ( mine were 5 times a day - 20 reps) - gentle exercises after 6 weeks - walking - water ( FLUSH OUT THE CRAP IN YOUR SYSTEM) - take care,
hugs,
Bronson

Fantastic news on the PSA. Congratulations – something to celebrate!

Wow, sorry he had the catheter in so long. What a relief to get it out. Incontinence can take a while to resolve. Keep up the Kegels. Walking helps. I was told to cut back my fluid intake after the catheter came out. Avoid caffeine, alcohol, and other bladder irritants.

Good luck with the recovery.

Good news on the PSA front, happy to hear that.

Alice,
You may recall that I had the catheter for 54 days. I'm now 5 weeks post cath and have just this week began to notice the suggestion of bladder control. I also use the Depends briefs in addition to the pads. On bad days I change a nearly saturated pad hourly, on other days I might go longer. If I don't wait too long between pads, I use only one pair of briefs per day. I am able to last overnight with one pad, but I keep a folded over towel between me and the mattress just in case.

This whole business is slow progress, but progress nonetheless.

Alice - Just found this thread of yours and congrats on the zero PSA.

Whitebird - we have a holiday booked in 4 weeks time touring China for 2 weeks! We booked before we knew he had cancer. My husband has had catheter in situ for 5 weeks and (assuming it comes out next week as planned), he will be 4 weeks down the road from that so pretty much where you are now I guess.

How do you feel now? Could you spend a day on the Great Wall of China with no facilities?

Is there any way we are going to make our holiday or should I start looking at cancellations while I can still get some money back? Any advice?

Thanks so much.

Alice: I read regularly but post infrequently. Muscle atrophy is "learned" by our bodies very quickly. If a normal non-surgical patient were to be catheterized for 41 days or more, it would take time to retrain the muscles to work right. Never mind that surgery affecting that area has been done and that adds healing/retraining time.

Take this is very small steps. 1. A few less pads are being used per day. 2. Less to no feeling of leakage starts to occur when sitting down. 3. After standing still, leakage is less or at some point no leakage occurs. 4. You can take a few steps walking slowly and no leakage happens. etc, etc.

Trying to think about this issue from full leakage to resolving it in one big package is mentally exhausting. Baby steps, weekly and monthly milestones makes it much better. The smaller goals become accomplishments that can be physically and mentally assuring.

I speak from experience being at 19 months post surgery. I still leak a bit (around 10 cc or 1/3 of an ounce) per day. I wear an ultra-thin pad to keep me as dry as possible. That level of leaking comes with moderate activity. I walk 2 miles per day. I believe most of my leaking is derived from my walking and other stress incontinence related physical movements.

I will be seeking some physical therapy soon to see if I can close the gap.

Keep faith,
Mike S.

Thanks Whitebird.

My husband is a stoic like you (yes I agree coke and popcorn are a MUST at the movies). He says that I am worrying unnecessarily.

Your tips are excellent and we are not squeamish about these things (well I am not) and I can hopefully persuade him that the benefits of seeing the Great Wall of China outweigh the inconvenience of incontinence. As long as I have plenty of pads, plastic bags and wipes in my handbag, we should be able to cope (with an aisle seat as you suggest)!

What a relief.

I will let you know how we get on once catheter comes out.

But I am so glad of your helpful words and do hope that everything continues in the right direction for you.

Just out of interest - can you say why your catheter stayed in for so long? Did you experience internal leakage following first catheter removal like my husband?

Hi Mike S - your idea of breaking down any incontinence improvement into small steps has made it much easier for my husband to understand ! He now has some goals to try to achieve. We do a lot of walking with our dogs but hubby gets a bit disheartened when he gets back home with a really wet pad. But he has used less pads today than yesterday so this is indeed a small improvement !
Thanks for a good tip !

"He is wearing a pad inside the Depends type pants - he feels more secure to double up like this. Also seems to have got through a large amont of diaper rash cream."

Hello Alice and Jane ~  Welcome to our forum!  My husband did the same thing.  After about 10 weeks, his doctor prescribed rehab for pelvic control and the proper way to do the Kegels.  He went for 6 sessions and it was very helpful for him!  Yes, patience is the key to making recovery a better experience.  It took about 5 months for complete bladder control.  He considers himself lucky in that department but is still experiencing ED.  We are working on things which his body can handle.

My husband lets me do all the researching and then I print up important items for him.  He believes he is allergic to computers.

Jane, what a wonderful opportunity you will be experiencing!  I hope you and your husband have an interesting and fun trip.  It might be good to print up some of the advice here.   Wishing you a great trip!!  I hope you will keep us posted.

Alice, welcoming your hubby to the Zero Club!  Good news!

Whitebird, you provided some excellent advice as did others!

Best wishes,

Aimzee

 

 

 

Alice & Hubby,
Always great news here on the HW forum to hear about another new member to the "undectable club" Congrats to you both!!! I fit into the impatient club with your husband. I am 6 weeks post catheter. My first 3 days I had no control whenever I stood up but fortunately I have been totally dry at night. Members here told me "Patience is a must and Attitude is everything" They are right. I was also told not to look for daily improvements but rather weekly or even monthly improvements. They were right again. Let walking be your best friend, it did make a huge difference for me. I also started off being very disciplined doing my kegels, but found I tired and exhausted my pelvic floor muscles at times and then I leaked more. My own personal experience was to rest these muscles for sometimes 1-2 days to allow these vital muscles time to recover and then start up again. While my catheter was only in for 16 days compared to your husbands for 41 days, you have a little more to retrain these muscles from their atrophy state of not being used. It's amazing in time those muscles will gain control for you to clamp down on them from a sit to a stand position and allow you time to get to the washroom. This past week at 6 weeks outI have improved to 1 pad per day and feeling much better about my improvements. Celebrate your "undectable" news and cheers to that and have faith your continence will return. Wishing you both many, many more "undectables"!!!!
TJ

Hi all you guys !
Thank you so much for asking about my husband - I haven't posted on the forum for a long while but still try to check in at least once a week. Life seems to have gone back to its usual hectic pace although I try to make sure my hubby Colin does have some relaxation time - he is a bit of a workaholic though. Things seem to have progressed very well since catheter removal - although the first 3 or 4 weeks were disheartening for Colin. He did his Kegel exercises every day but was probably using about 7 pads a day and he had no control when out walking the dogs. However he has been back working since mid March (does a lot of walking in his job) and seemed to turn a corner towards the end of March and is now down to one pad a day (and one at night for security). Even when he is out walking/jogging with the dogs he has good control and stays pretty dry. After his op the surgeon did say that he had very strong pelvic floor muscles (he used to be a jockey and the surgeon thought this was due to the riding). Anyway he started taking Cialis at the beginning of March but the GP gave him the 2.5mg tablets to start with, which was not what the consultant had advised. He has now been taking 5mg daily for 2 weeks but still no sign of an erection with or without stimulation - so that's the next step ! I think if there is still no improvement in the next couple of weeks he will be referred to an ED specialist for further treatment I suppose. He doesn't get bad side effects from taking the Cialis just the occasional muscle pain. I just keep hoping for zero PSAs - next test is end of May. He looks well and has put on weight - he lost about 14lbs after surgery. He had terrible night sweats after he came home from hospital which I was really worried about but these stopped after the catheter came out. We eat a dairy free and mainly meat free diet - we eat a lot of fish and also occasional organic chicken, and plenty of fruit and veg of course. I have great admiration for everyone that has to go through the constant worry that accompanies PCa (as well as other cancers of course) but I didn't really know that much about the disease until I started doing a lot of reading last year after Colin's PSA reached worryingly high levels. I sort of wish there was more I could do and will definitely take part in some sort of challenge to raise money for PCa. Anyway hope you are all doing as well as each of you can - stay positive and never give up !
Happy Easter to all you guys as well !
Alice
PS - Jane - hope you don't mind me asking but what part of UK are you from and where did your husband have his surgery ?

Hi Alice and Jane,
Alice, really happy to hear things are improving for Colin on the continence front and hopefully the ED will improve with time too.
I hope you don’t mind me hi-jacking your post Alice but I wanted to respond to Jane’s post above....
Jane this is an incredibly difficult time for the wife/partner/lover. I know for me personally I hit the wall about 3 months after Jeff’s treatment – think I had been on auto-pilot and adrenalin rush up until that point. You mentioned seeking out a support group and if you haven’t already, please reach out to McMillan, their cancer support staff are there for you. I presume your husband had his treatment privately as you mention Nuffield so you may not have been offered their support as they tend to work alongside the NHS consultants. Contact McMillan directly – Cathy (wont’ give her surname on here but happy to email you) was my angel and got me through the darkest period of my life. She works out of Haywards Heath so not a million miles from you in Tunbridge Wells. She is a specialist Urology Nurse and McMillan counsellor so will understand every aspect of your husband’s journey and no doubt has colleagues nearer to you whom she can put you in contact with. If you don’t want to speak with McMillan, your GP can give you contacts – you don’t need to do this alone AND it is OK not to be strong at times.
Sending you and Alice a hug from Brighton.
xx