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How much support will I need

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User

Posted 09 Sep 2019 at 12:12

Hi. I am going to have a radical prostatectomy. I live alone, so I am planning to pay for home care to support me for the first few weeks, or however long it takes to get back to independence.

I would welcome some advice on just how much support I am likely to need, i.e. how many hours per day, and whether overnight support will be needed for the first few days. Thanks in advance.

User

Posted 09 Sep 2019 at 14:10

There's really no need for this; it's perfectly possible to handle it without support at home. If you have friends who can do shopping for you for the first week or so, that would be useful; if not then shop online.

Best wishes,

Chris

User

Posted 09 Sep 2019 at 16:08

I agree with Chris regarding probably no need. The most awkward thing may be the Catheter & Bag emptying in the 1st couple of days. I found it pretty awkward and Tip 1 is to have the Bag in a bucket at night beside the bed.

You should aim to be as mobile as possible around the house but not straining in the 1st 6-8 weeks. For the first few days laxatives should be available to avoid constipation.

15 weeks post RALP.

User

Posted 09 Sep 2019 at 16:18

Pipman, it depends on what type of RP you are having. If you are having kehole / robotic RP the hospital may have said that you will go home the day after the operation but only if there is someone at the house? If that's the case, then yes buy in some home help for the first 2 days as that will probably be much better for your peace of mind than staying in hospital for an extended period (where apart from anything else, it is much harder to sleep). If the hospital hasn't said that you must have someone at the house, then you would probably be wasting your money; as said above, the most difficult things are not being able to drive and not being able to lift shopping, etc. There may be friends / neighbours who could pop to the shop for you and it would be a good idea to stock up on soups, eggs and other easily digestible foods beforehand, plus some freezer meals?

If you are having open RP you will be in hospital for 4 or 5 days or perhaps more and they won't let you out until you are mobile and fairly self-sufficient.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Sep 2019 at 16:38

Hi Pipman, after my op(RARP) I got some bladder spasms (suprapubic spasms) on day 8. Essentially the bladder wanted the catheter out and tried very hard to get rid of it. The pain was pretty bad and I ended up in A & E at 2:00am where they x-rayed me and eventually gave me some Buscopan (an over the counter antispasmodic) which didn't do much. Having been readmitted to urology I was put on Solifenacin (5mg once daily) which stopped the problem and I came home 3 days later with no further problems. The moral of this rather long winded story... is get some Buscopan before the op (just in case) and/or ask about being put on Solifenacin before you are discharged. Prevention may well have saved me quite a lot of unnecessary pain. Go with the laxatives too.

Otherwise I agree with the other comments.

User

Posted 09 Sep 2019 at 23:36

Hi, To cut a long story short my conclusion at the end is you might not need it but having a home help might be nice to have for the first week.

Assuming you're reasonably fit and have keyhole surgery then usually you'll be ready for home after 48hrs and they'll interview you about your needs. It might be good to tell them you're alone before then as they'll let you know what they think.

My wife drove me home and I walked from the ward to the car park which was quite a way. I couldn't have driven.

They usually let people out at 6pm even though they say it'll be noon. So you might want to get home during the daytime. I recall doing almost nothing and stayed in bed longer than usual first day being glad someone made me a cup of tea. Although I'd have managed without.

If you can stay in the house for the first day and take a short walk the second maybe. But no driving for a few weeks. You could do some shopping around day 4 perhaps. Yes home delivery might be a good option.

The district nurse should pop round at least once and might offer to visit again if you need it.

A home help might be a good option if they can do some shopping, cooking, cleaning or just checking on you. if you need it. You might like that for a week.

User

Posted 09 Sep 2019 at 23:41

hi Philip

Very valid points made already.

May I ask how old , fit and active are you ? Are we saying zero support from friends and neighbours ?

Post op fatigue and lack of mobility is the main issue common to all. Simple stuff you take for granted can be more of a challenge . ie putting socks on etc.

Not easy getting up down off bed etc however after a few days soon improves.

Everything else can be worked around or managed. Depends if you prefer your own company.

Gordon

Edited by member 09 Sep 2019 at 23:41 | Reason: Not specified

User

Posted 10 Sep 2019 at 00:14

Originally Posted by: Online Community Member

The district nurse should pop round at least once and might offer to visit again if you need it.

It is worth checking whether this is the case in your area, Pipman ... you will soon learn that there is a postcode lottery when it comes to services for men with prostate cancer, and home visits from the district nursing team are one of those things that happen in some places but not all.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Sep 2019 at 12:17

Thanks for the replies. I'm having the robotic keyhole version of the surgery. And I'm fairly fit and healthy. I will also stock the freezer with food beforehand. My main concern is just to have someone who can do stuff for me in case I am unable. I think I will go with having someone for an hour a day for the first week, then see how it goes.

User

Posted 10 Sep 2019 at 13:45

Hi Pip,

If you click on my nom-de-plume; ‘Bollinge’, you can read my profile, and here are the contemporaneous notes of my surgery and recuperation:

https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy

Your procedure may or not go as smoothly as mine, but best of luck!

Cheers, John.

Edited by member 10 Sep 2019 at 17:31 | Reason: Not specified

User

Posted 10 Sep 2019 at 16:26

Hi Philip,

Firstly all the very best wishes for a speedy recovery. Due to earlier abdominal surgery my attempt at robotic surgery failed so I had conventional but a keyhole RP in late 2014. I left hospital the next day and I would say that you could manage but its best to have a bit of help so my opinion would be that a little help will assist your recovery.

User

Posted 10 Sep 2019 at 17:29

Pipman

At work we used to have a saying, "better to be looking at it ,rather than for it" depending on how things go a hour a day from home care may be to much, or too little. The first two or three day will be the most challenging. I had robotic surgery back in 2014, I went into theatre Monday morning had an extra night in hospital and came out Wednesday lunchtime two days later I had an ambulance ride to A&E. All down to constipation.

As already mentioned the catheter may be the only major challenge. Bending too attach and remove a night bag can be uncomfortable, with the right length of tubes you could avoid some of the bending. The norm is to attach the large capacity night bag to the outlet of the leg bag. Make sure the joints are tight and check them every day, also remember to open and shut the taps in the right sequence. Keep mobile but no marathons. Have essentials to hand in bed and by your day time location, things such as water, medication if required, instilagel and laxatives if required.

Make sure you get spare thigh straps, too shower empty your bag and remove bag straps, use the thigh strap to support the bag, shower and dry yourself then fit a dry strap to the other leg, transfer the catheter and bag to the dry strap and remove the wet strap to dry. Make sure the catheter is properly secured, nothing worse than accidentally pulling on a loose catheter.

Just be aware that "by passing" where urine comes out between the catheter and the penis is quite common, so some incontinence pads would be useful, also a good bed guard in case of accidents and the suggested bucket in case you forget to close a tap. The instilagel or hydrocaine helps stop the soreness at the eye of the penis.

A lot goes off in the first few days and I was glad to have the support and attendance of my OH.

Hope all goes well.

Thanks Chris

User

Posted 12 Sep 2019 at 14:04

Here are my two bits, hope they are not too late.

If you can, I would go for some support, as you really don't know what condition you are going to be in.

+7 days since keyhole. It was long, 6 hours, not too sure why, there were issues with getting the catheter in...

My first night bag was huge and I really don't think I would have been able to process it.

I found getting in and out of bed pretty damn difficult for 3 days.

Controlling my non smelly farts was a major challenge.

Sleeping on my back I found really hard, though could not roll over as shoulders and wounds were too sore to roll.

Worrying about passing a dump was an always, first one and it was tiny, appeared 4 days after surgery.

Stopped codeine after 4 days. Pain is now slight discomfort. I find sitting for any length of time a bit of a challenge, just getting the penis and tubes in the right place...

Walking a bit.

Sounding like a bit of a sap...

I wish you well and hope all goes as planned. Take care

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