Post-surgery supplies

Hello,

Everyone was such a big help after my husband received his cancer diagnosis. I want to thank you all again. You all are truly wonderful.

We took your advice and had the biopsy slides sent to Dr. Epstein at Johns Hopkins, and it turns out my husband's cancer is worse than the initial reading. One 3+4=7 turned out to be 4+3=7 (60%). The 3+3=6 turned out to be 3+4=7. We also took your advice to have an MRI (even though the diagnosing urologist thought it was unnecessary). The cancer has not left the prostate but is pushing to do so. We put together an A-team and my husband decided to go with the surgery option, using Dr. Jason Hafron here in Michigan. He is the director of robotic surgery at MIU and has an impressive resume overall. Surgery is scheduled for Nov. 9th.

Here's my question. What supplies do we need to order before surgery and do you have preferred brands? I want to make sure I have whatever necessary to make my husband as comfortable as possible. Also, what foods are best?

Also, our bedrooms are all on the second floor. Will going up and down stairs be difficult at first? I was thinking about setting things up for him to have both the bedroom and a sitting room with a mini fridge on the second floor. Then he wouldn't have to use the stairs for the first days of recuperation but could still move around.

I just don't know what to realistically expect in terms of needs. Personally, I've found that recuperation times often take longer after surgery than what doctors tell you.

Thanks in advance for any thoughts and/or advice.

-Debra

Debra, best wishes for a successful surgery. I had the surgery 9 months ago. The assistance my wife provided me once I got home can never be repaid but I'm still trying! As previously stated, a comfortable recliner is a must. Lived in mine for 10 days with the catheter. Breakaway (or tearaway) pants are most helpful. Online about 30 bucks. The kind basketball players wear, snaps down both sides and easy to put on/take off around catheter tube. Just run Cath tube between snaps. I got a small plastic garbage to put on the side of my recliner to hold Cath bag, it hooked on top edge. Boxer briefs are a must. Good support for Cath tube attached to inner thigh. Recommend one size larger than usual if pads are needed after Cath removal. New batteries in TV remote! Husband will need to consume huge amounts of liquids. I liked the single serve packets of drink mixes for a water bottle (Crystal lite, kool aid, etc). Drank (gagged) a lot of prune juice. Soft foods initially, eggs, toast, oatmeal, applesauce etc. He'll be sent home with a large catheter bag and a smaller one to attach to leg. Following another's advice, I only used the large bag. Didn't want to bother changing them. When I went for Cath removal I put the bag in a reusable grocery bag for easy carrying and concealment. Don't know if I fooled anyone! I couldn't imagine climbing stairs for the first week but walking very often is a must! I did laps around the kitchen island every hour. Best wishes to you both!!!

Debra,

I didn't want to negotiate stairs with the catheter in place. Tripping over it is risky, and much more so on stairs.

Here's my list from memory....

Doggie training pads for my chair (they are cheaper than the human version). It is possible to have leaks around the catheter.

A rubber undersheet for the bed

I bought a 'donut' cushion and never used it

I borrowed a shower bench, to avoid standing up to take a shower

If you can find them, snap sided sweat pants

I wound up sleeping in the recliner a few nights

Next to his recliner: a small table for his water mug (drink LOTS of water), his remote, and a stack of DVD's

Get out of the chair at least hourly and walk around

Food: I think my first real meal at home was baked chicken and boiled potatoes. It's important that he get plenty of fiber in his diet, so oatmeal is good. He can eat whatever tastes good to him.

After a few days, he should strap on the leg bag and you can drive him to a local big box store and walk around for a bit.

The key things:
push fluids
walk
take naps as needed
try to stay away from the percoset and other opiates
take the dulcolax stool softener

ps: Jockey underwear works well. My wife took a couple of my older ones, cut the side, and sewed a Velcro strip in for easy on/off. It is really nice not to follow any specific order getting set for the day. I would typically come out of the shower with the large bag and then change to the travel bag strapped to my leg then get dressed. The underwear could go on after and work around the tube. "Retirement pants" as we call them could just be pulled on afterwards.

One thing I found handy was 'convertible' hiking pants that have a zipper at the knee to change them into shorts. If he straps the catheter leg bag to his thigh the knee zipper will be at just the right height to get at the drain on the bottom of the bag. It makes it reasonably convenient to empty the bag in a public restroom. Walking will be good for him and you should encourage him to get out and about. The first few days he won't feel like doing much but once he starts getting bored the leg bag will be his friend.
Mumbo is probably right that most supplies can be bought at Target but you might want to pick up a pack of 'Depends' (pull-up incontinence pants) and 'Guards' (pads that go inside jockey shorts) ahead of time. Currently, baby diapers are in short supply in some places because of supply-chain problems and it wouldn't be that surprising if incontinence supplies were to become hard to find as well. Be sure to keep the receipts. about one third of men are continent when the catheter comes out, the other two thirds will need some sort of pads at least for a while. If your husband it in the lucky third you can return the pads he won't be needing.

The most important thing I would add is stool softener / laxative of some sort. We have high fiber above but I would go further. I have heard constipation horror stories: best to get out ahead of that, can always dial it back later.

One other thing I would add is I found my night-bag stand really flimsy and poorly designed. The end improvements were a brick for ballast and standing it in a storage box (like the bucket idea above).

I also bought a hernia-support belt aimed at the navel. The physio scoffed so I didn't use it for a few days but BOY was that a mistake. The relief on the incision in all positions was immense.

Ibuprofen for relief after the early stage. It helps calm an irritated bladder (as referred above, bladder spasms are NASTY) and is an anti-inflammatory.

Depending on your relationship and finances, and of course on his stage, if recovery is feasible it's never too soon to start working on ED with eg low-dose tadalafil: some folks talk about "prehab".

Debra,

Firstly, my thoughts and prayers are with you and your husband. This has been a very similar year at my house and I certainly understand what you are going through.

I had surgery on October 6th and am sitting on my deck in the nice Fall weather as I type this. My surgeon was Dr. Joseph Smith at Vanderbilt University Medical Center. He and his staff have been extremely informative, helpful and comforting through the whole process. Dr. Smith has been doing the robotic surgery since 2003 and I was very fortunate to have had my Urologist and a relative recommend him. I couldn’t have asked for a better experience considering the circumstances.

The advice that I’ve seen in this thread has been spot-on from what I’ve dealt with in the last 2 1/2 weeks and all of the input here is so valuable. It’s easy to read a clinical document that tells you what might happen but so much better to hear real world experiences.

I was on a liquid/soft food diet right after the surgery and was sent home with stool softeners to take twice daily. By the 3rd day everything was back in working order and I went back to my normal diet.

I was also sent home with an abdominal binder to help support the core muscles and it has been very helpful.

Getting up and down was painful for a few days but got better all the time. The first two nights were my worst by far. I stopped the heavy drugs by the third day and have only used Tylenol occasionally since then.

The days with a catheter were interesting since it was all new to me. You learn the pitfalls pretty quickly though and adjusting to it is not too difficult, probably because there is a light at the end of the tunnel. We were probably OCD with keeping everything clean during that time but infection worried me more than it should have. The nurses at the hospital advised us to use Neosporin at the catheter input point to keep bacteria at bay and I think that paid off. I changed between the leg bag and the night purse regularly and didn’t have any issues.

I had the catheter removed 6 days ago and it was, like most, a huge relief. We had purchased Depends, heavy and light pads (CVS brand) and all have been fine and functional. We also purchased pads for the car/bed and they have been a comfort but fortunately haven’t been tested.

Adjusting to the new normal with only one sphincter muscle for urinary control has been challenging but doing the Kegel exercises before surgery along with other core exercises seems to have been a wise thing to do. I am able to stay dry for the most part but believe my bladder is still adjusting to the trauma it’s been put through in the recent past. I’m sleeping okay but do have frequent urges, more at night than any other time. Getting up and down, coughing and laughing can catch you off guard and leaks happen. I’m learning to control the right muscles without having to think about it but it’s a process for sure. Again, the exercises are a big help for this.

It will be painful to cough or sneeze for a bit. I was caught off guard a couple of times with a sneeze and I equated it to being found by Michael Myers and his butcher knife. A pillow to hold against the abdomen is very helpful for those times.

Something to fight the boredom as he heals will be helpful. I have about had my fill of TV so I’m reading and studying things I never took time to before.

It’s gone by slowly but it’s also gone by quickly. I know my wife has to be tired but she never complains. I am truly blessed with her and it sounds like your husband is blessed to have you. Hang in there and you’ll get through this.

I would get some washable pads and a waterproof mattress cover just in case. Some Depends undies, cortisone cream for the Cath tube.

This product Neosporin + Pain Relief Dual Action Topical Antibiotic Ointment, works well for the catheter. Get the ointment, not the cream. The ointment is applied to the tip of penis and an inch of the cath tube at the penis tip. The ointment will protect against infection, lubricant the cath tube and provide pain relief for the tip of the penis. The main goal is to the protect the tip area from irritation so start the treatment early before the patient has an issue.

As needed, clean the area with warm water and washcloth. Then reapply the ointment. Recommend using a q-tip to “paint on” the ointment.

The cream product dries out quicker which is why I recommend the ointment.

FG