Anxiety overload

Yes all very familiar, he has had the same operation as I had and I then got 3 nodes removed later which were fine. You will not find out what stage he is at until the biopsies come back from lab. They normally take suspicious nodes out at the same time as main surgery.

catheter management is not easy and wounds need looking after. I got infections in my urine as well as in my graft so it was a full time job looking after myself.

I was lucky I had no further treatment but I discovered I have bladder retention which I am now living with.

Hopefully worst is over, once he wakes up properly he will soon realise going back to work is not an option for the moment.

Robert

There is an anaesthetist strike here in London and this was treated as an emergency so they agreed to do the surgery today  but only for the primary issue so we were told that they wouldn't be taking the nodule out today but it doesn't make sense to me.

Hopefully find out more tomorrow.  Also talking about him coming home tomorrow?  That seems a bit soon?

Lorraine 

I was in hospital for only one night but my surgery was early morning and I was released late second day. 

Really?  Seems so soon for such a big surgery!

His surgery was around midday  so it looks like he'll be coming home tomorrow. 

How is he today

Says not in any pain which I can't believe.  His graft site seems to be the most problematic because he was seeping through the dressings in the hospital and they had to change the dressings and sheets 3 times yesterday but thankfully all OK here last night.  He has 2 follow up appointments- one on 6th to remove the catheter & dressings and the 2nd (not sure of fate because my head is spinning) discuss/deal with the results of the suspect nodule which he was told will involve further surgery . From what you have said this all sounds about normal? X

At that stage I didn’t have pain but it came later so he needs to take pain  killers, paracetamol and ibuprofen was enough.

I borrowed a cage for the bed so the blankets didn’t put any pressure on my wounds it worked well.

I also bought male pads for my penis wound once the dressing was off which again worked well.

I had no leg graft issues.

Watch out for infections in penis wound and urinary infections once catheter is out I got both especially penis wound a crater stated to form on the new graft overnight with the infection if that’s the case he needs to go to A-and E immediately or back to his hospital. Infection crater healed to about 90%.

probably the second visit is to remove leg dressing I had this dressing on for some time.

My penis dressing came off and I stater to put new dressings on myself with some strong  surgical tape it’s a difficult wound to keep dressing on .

Hope this helps, don’t hesitate to send me questions.

Robert

I imagine when the dressings come off it's going to be the hardest bit recovery wise?  I think I remember you saying full recovery was about 3-4 months?  Is this about right? All being well! 

He's sleeping really well so that's a good thing although he didn't attach the extension part of the bag on properly last night and so it was a middle of the night scrambled to get it attached!

Luckily it's summer now so only have a very lightweight cover on the bed so no issue there.

I cannot believe this isn't more widely discussed! We, along with all friends & family, never even knew it was a thing?  Xx 

Yes about 3 to 4 months for me, once dressings are off the healing process is challenging but I had a few issues, when he gets the catheter out he will need to drink about 7 cups of water then measure the amount of urine I couldn’t do this on 2 occasions so had to have catheter in for 3 weeks then the hospital trained me to self catheterise which really was beneficial as I had a urine infection which stopped me urinating.

I used to tape the catheter connections as I also had joints coming apart as I moved around in bed. Since I had catheters on for 3 weeks I moved to a catheter tap which was better. This allows the bladder to fill up then open the tap in the toilet to empty bladder.

Yes penile cancer is not widely discussed as it is rare only  600 men get penile cancer a year compared to 20,000 breast cancer and about the same for prostate.

By the way about 1400 woman can get this cancer on their genitals also very rare.

Robert

Hi worried wife 57

I can totally agree with Robert, my 1st operation  November 22 was same as your husbands with lymph node samples taken at same time, then had lymph nodes on left side done early February 23, then it was down to recovery which was just about ready to return to work, when the penis started looking infected so returned to hospital and discovered the cancer had returned now about to under go 3rd operation. Just tell him to make sure he keeps it clean and anything that doesn't look right get back in touch with the hospital and get it checked as soon as. As Robert said if he or you need anyone to talk to I am also here. The one thing I can say for definite is he needs to let you go into all appointments with him, my wife has been brilliant through all this. Hope he has good recovery.