Hello

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Hello, I am new to the group but not new to cancer,  Its been a bit of a whirlwind start being referred to Urology following a routine blood test in October last year and getting though an initial examination, MRI scan and Biopsies by 12 Dec and diagnosis on 27 Dec (Happy Christmas and New Year)

I saw a Radiology Consultant in early January but after researching my options for treatment on the internet, thanks to the mass information provided by McMillan (thank you so much!) I elected to have a Radical Prostatectomy.  That's when the mad rush slowed considerably due to a long delay to see a surgeon in my health area. However, I was offered a referral to an adjacent health area and after proving my fitness for surgery despite my age, 75, and previous health conditions I was offered RAPL surgery on 16 May, 4 weeks ago from today.

I was discharged the afternoon following surgery with medication and a Samsung Galaxy to take my own observations which were then communicated back to the SMART team (Surgical and Medical Acute Recovery Team) back at the Medway Maritime Hospital - I live in Ramsgate 44 miles away.  The system was brilliant and included a telephone call every day from a CNS.

As I mentioned earlier, my surgery was 4 weeks ago and i Have had all my staples removed and also my catheter which was removed 2 weeks ago and was a great relief.

Now the long haul appears to be setting in - the recovery of continence.  I am experimenting with Incontinence pants with an incontinence pad as an insert to extend the life of the pants it seems to be working provided I use level 3 pads and pants throughout the day. Night times are not too bad, although I tend to have to go to the bathroom 3 or 4 times a night when my bladder feels full and wakes me up. By day its a different story as I get no feeling of a full bladder but have to guess when I might need to go to the bathroom and have to rely on my pads and pants combination.

I carry out pelvic floor exercises 2 to 3 times a day and I am very aware that it is only 4 weeks since surgery and have read that it can take up to a year, but I would like to ask others who have undergone surgery how they have managed to condition?

  • Hello Jon B, I wrote a piece on pads a while ago, maybe millibob could point you in that direction. I have found standing up from a chair can be a problem so developed a new technique; the real issue being bending from the hips.  So I drop from the chair onto one knee and then stand up with a straight back.  I also try not to lean against waist-high work surfaces or sinks as this pressures the bladder.  Caffeine is a real problem for me, in response I have even developed a liking for plain hot water!  If I am away from home for more than 2 hours I often use a Pacey Cuff (penile clamp) which is not as gruesome as it sounds. All in all, developing a thick skin is a useful attribute; I have changed pads in a supermarket car park and on the beach.  Good luck and let us know your progress.

  • Here is a link to your excellent post.

     RE: Pads and what you need to know 

  • Hello  

    A warm welcome to the online Prostate Community. I am so sorry to find you here.

    Below is the link to the fantastic thread posted by  two months ago.

    community.macmillan.org.uk/.../2008163

    I do hope this helps and wish you well in the future.

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

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  • Hi Huffies,  I had actually read your excellent piece yesterday evening and identified with many of the same problems. Your suggestions above ring a few bells too and I shall certainly try them.  I'm not too sure about getting  a liking for plain boiled water but i'm off to Tesco's shortly so may try the car park.

    Best regards

    John

  • Hi Jon B

    I had prostatectomy surgery in September last year and have made a good recovery. Don't use pads now and have even stopped carrying one (just in case). 

    Having only had surgery 4 weeks ago, I would say it's a little early to be looking at longer term solutions. Your body needs time to heal up and retrain for bladder control. I'm not a medical professional, but statistically, most people recover from incontinence issues within a year. If you are typical, you can expect to see an improvement over the coming months. In addition to the good advice already given re exercise and caffeine, I found giving up alcohol very beneficial. Also, getting into the habit of always squeezing when standing up, sitting down lifting anything, reaching up (top shelf) and walking up steps, until it becomes automatic. This seemed to help me. But don't overdo it until you've healed a bit more.

    Good luck with the recovery. Feel free to ask me anything.

    Cliff

  • Hi Cliff, thank you so much for your response  advice. I am getting the message that time is the greatest healer and it is now coming home to me that my impatience is my greatest enemy.

    thanks again for your input

    Bedt regards 

    John 

  • Hello again Cliff, and anyone else follow ing this.

    i downloaded the Sqeeze time App from the App Store and have been using it for some weeks now . 

    Have you, or anyone else tried and can recommend any other apps that might be available? I read on another post that there is an NHS App for PF but the only ones I could see are for ladies. 
    Best regards 

    John

  • There is an app called Owise that I am experimenting with.
    It is available for Apple and Android AND you can use it online.
    It's free.
    It seems to allow you to plan and store things like treatment plans and appointments etc. Best look at it and see if it matches what you want.
    https://owise.uk/prostate/ - The app started for breast cancer so you can go down the wrong rabbit hole, hence the link.
    It is not an NHS app but appears to be appoved by their Digital Services Team.
    I am a belt and braces sort of bloke so I am using this AND OneNote to cover my treatment planning.

  • Thanks ever so much for this. I’ll have a look at it. 

    best regards

    john

  • Hi John.

    The pelvic floor app my husband uses is the Squeezy app.

    https://squeezyapp.com/

    We use the old fashioned method of a monthly calendar which we can both write on to tell us when appointments, repeat prescription, ordering has to be done.