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User

Posted 25 Jan 2016 at 20:09

I was sent home with Magnesium Hydroxide liquid which I took as instructed until it happened. The relief haha. Yes it is best to take something for the first month , but only as required or you can become dehydrated
Chris

User

Posted 25 Jan 2016 at 21:18

Happychappy

I was actually refused any laxatives in Hospital, when I got home I started on senna, but they were slow to work. Our hospital now start guys on movicol before them come in for the op.

Thanks Chris

User

Posted 26 Jan 2016 at 19:12

Yippee finally movement or motion, and everything went well, no pain and as good as they get 😄 Another hurdle out the way, thanks. Pat

User

Posted 26 Jan 2016 at 23:03

Well good to have that out of the way! Remember you have had a major op so don't do too much too soon!

Barry

User

Posted 27 Jan 2016 at 19:38

Thanks Barry

Yes I feel like I've been hit by a train, but better each day taking things steady and making sure I drink plenty, but then emptying the leg bag every hour or less, unfortunately I only received a small volume bag with the stock not being delivered till Friday, but no rush as I'm not going anywhere.

User

Posted 12 Feb 2016 at 16:22

Just a quick update, finally had the catheter out yesterday which was almost three weeks post op, really pleased with the result, no leakage and good control without need for pads which I was dreading but resigned too, so wondering if this will continue?

I was dry all day with no accidents, and all night, however as I had to remain at hospital until I had been to the loo four times using the flow meter followed by a bladder scan, I really drank a fair bit, and the trade off was all night long I was up every hour going to the loo, so a very poor nights sleep, urine is slightly pink to start with and at the end, also stinging a fair bit, but son goes off, I imagine this is normal as the huge great plastic pipe is now out ?

Today has been better, three or four glasses of water this morning and able to control the urge until I go to the loo, I walked a mile today and felt really knackered, I hoped I would have more stamina, but weak as a kitten, so maybe smaller walks and a little more often ? How have other people managed with fatigue three weeks post op, am I expecting too much

I have a follow up with the consultant beginning of March, but need to have a PSA test before hand, nothing happening on the ED front, but pleased to get the catheter out as I really struggled with discomfort with this, but at least things are moving forward, although still feeling a little emotional and notice every other advert seems to be about cancer charities or Tenna pads 😟

User

Posted 12 Feb 2016 at 17:31

Well done Happychappy, glad things are sorting themselves out for you.

Your body has been through a great deal so it isn't any wonder that you are still fatigued.
Hopefully that will pass and you'll be back to "normal" in ALL areas of life.

All the best
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 12 Feb 2016 at 18:30

Hi HC,

Great news on the continence front!

You may have a few 'accidents' moving forward, but things look very promising and on track for a good recovery.

A word of warning ...... Don't 'overcook' things too early!

You have just had major surgery and your body will need time to recover.

Feeling knackered is quite common as your body is trying to heal itself.

Fitness levels vary from person to person, but maybe you are being just a little ambitious at such an early stage in your recovery?

Rest and a little exercise will be beneficial at the moment.... over the next few weeks you can gradually build up your stamina.

Listen to your body and you should be fine...

I found that being patient about regaining my fitness paid off in the end...

Best wishes for a swift recovery
Luther

User

Posted 12 Feb 2016 at 19:12

All sounding great HC with all the normal questions and worries and insecurities which actually aren't worth worrying about at this stage. As Luther said , rest relax and get better. At least a month ok. Try to do what we all didn't haha and are now advising on hindsight. Your continence sounds A1 and will remain so. Countryboy99 always told me to be a patient patient and it is sound advice indeed. Nobody on this site wants an erection more than I , or are trying any harder but I am 7 months post- op with zero so far. It's a long haul but we're all going to get there
Take care
Chris

User

Posted 12 Feb 2016 at 20:36

Fantastic news about the continence- you must be over the moon.
So pleased that you are doing so well but try not to get too carried away as you still have some healing to do.
Hope the first PSA test result is good for you too. It's always great to share some good news.

Keep us posted.

Kevan

User

Posted 01 Apr 2016 at 09:35

Hi

Just an update really as feeling pretty low after my encounter with a GP, I saw my consultant two weeks ago for the follow up Histology and reports after robotic prostatectomy at the end of January, amongst other information, he said I will write to your GP and get a prescription sorted for low dose challis as this was in his opinion the best way to go to start the ED treatment ?

So I have just been to the GP one of many in a large surgery with a GP I haven't seen before, and started with saying I was diagnosed with prostate cancer just before Christmas which was followed by surgery, I have recently seen the consultant who has written to you asking that you prescribe low dose ciallis, and was going to then update how I was physically and emotionally but he laughed, turned away and started typing and said these consultants don't live in the real world, they don't realise it costs £54 for X number of tablets and if we dish these out willy nilly there will be no money left for this robotic surgery !

I tried to explain that the consultants view was challis was his preferred low dose treatment, however, the GP was dismissive and said in that case I suggest you go back to the consultant and ask him to prescribe it as I'm not, he then said he will only prescribe Sildenafil, followed by "is there anything else".

I'm just to weary to battle with yet another uncaring, indifferent alleged health professional, I just left and told him he can donate the money he has just saved the NHS to a worthwhile charity such as prostatecanceruk and while he does it, to read up on the disease ! 45 qualifying years of NI contributions come to nothing. Sorry for the rant, but so angry and so fed up with this beauracracy.

User

Posted 01 Apr 2016 at 10:18

I'm stunned. Simply stunned. I can't believe that. I think I would have gone mad after everything id been through. I'm not sure what your exact rights are. I do know I wasn't allowed Cialis either , whether it be postcode or evidence related , but I did get a pump and other tablets and am now using injections for erections. I was told I could have as many as I want. You MUST complain and chase this up. So sorry you've had to experience this. Shocking!

Edited by member 01 Apr 2016 at 10:19 | Reason: Not specified

User

Posted 01 Apr 2016 at 10:46

Hi HC,

I can't say I'm too surprised regarding refusal of your request for low dose daily Cialis. I am surprised at your GP's attitude though...

My GP refused to prescribe it for me also...... However he did prescribe me 8 x Cialis 20 mg per month which I understand is more than the current NICE recommended allowance.

According to my GP there is no concrete evidence that low dose Cialis is of benefit......even though my consultant was happy to prescribe me a months supply initially....

I don't take either now as I find muse is far more effective for me at my stage of the recovery process.

Luther

Edited by member 01 Apr 2016 at 10:47 | Reason: Not specified

User

Posted 01 Apr 2016 at 10:54

Chris nice to hear from you, and hope things are settling a little for you, and compared to your journey, I really have been fortunate (so far)

My sadness really is that the man just had no idea how continence and erectile disfunction problems effect someone and lately I just dont seem to be able to face up to problems, i think I have overdosed on problems, and now just want to roll over and go to sleep, which is so unlike me but that's the way I am at the moment, despite telling myself to man up and get on with it, I'm sure it is someone postcode lottery, I see the consultant next week again, so will discuss it with him, if he has the time.

User

Posted 01 Apr 2016 at 11:05

Luther, thanks, I hadn't even thought about the ED side as I am still dealing with the recovery and struggling very hard with fatigue which I really can not get to grips with, fatigue or just lethargic.

I haven't researched or even looked at what's available or the norm for the ED side, everything was on hold till a few weeks ago waiting until I got the histology or pathology results from the consultant. I purely went on the advice of the consultant who explained why he wanted me to start with a pump and the Ciallis on a low dose, therefore when he said he would write to the GP and book an appointment I expected his advice to be followed, not overruled by an accountant with a stethoscope and poor people skills. I wasn't even offered a pump or any advice, he was purely interested in cost and no discussion about my health despite me explaining the fatigue etc, just is there anything else as he turned his back and started typing.

User

Posted 01 Apr 2016 at 11:07

I know exactly how you feel mate. Sometimes I just want to pack my bags and disappear and leave it all behind me. Make sure you have support and someone to chat to. Us for example and the PCUK nurses. It is true that some days are very low , but you DO get really good days too.
It's great you're seeing consultant again. If you can't get the Cialis , then insist on a pump and demo with fitting. If you can't then buy one. Contact me and I'll give you the details etc. Just make sure you start doing something to maintain your penis health ok or you can end up with atrophy / wastage.
All the best
Chris

User

Posted 01 Apr 2016 at 11:55

Happychappy, don't take it personally. This is the impact of government changes - GPs have to fund the prescriptions they dish out. We had the same issue to begin with which is why a referral to your local ED nurse or andrology clinic would be a good next step. ED nurses are usually prescribing practitioners and once you get a prescription from them it is easier to get repeats from the GP practice. Seems to me that the GPs have to do what the ED clinic advises more than they have to do what the hospital consultant says. Crazy but once you know that, it feels less like a personal attack.

So may be easiest to ask the consultant next week whether HE can refer you to ED nurse or write to the GP practice requesting that they make that referral.

There is absolutely no excuse for his rudeness - perhaps write a letter to the practice manager saying pretty much what you have said to us here and then make sure that you see a different doctor in the practice in future.

PS if you don't get anywhere, we have a pump, pre-loved but clean and sterile, that we could send to you.

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

User

Posted 01 Apr 2016 at 12:19

Really feel for you - there is just no need for you to have been treated that way and no excuse. Keep your chin up because you're bound to be feeling vulnerable at the moment - you've had major surgery and you're also probably still processing all that you've had to take in over the last few months. I wish you better luck with other health professionals that you'll see.

User

Posted 01 Apr 2016 at 13:37

Hi HC,
It seems that there is no consistency at all and I feel for your situation. Your gps attitude is inexcusable.
I have been lucky or my postcode is the lucky one, my consultant wrote me a private prescription for 16 x 20mg cialis ( one every three days) but suggested I speak to my gp about getting it on the nhs and without hesitation the Gp wrote the prescription as he said there was evidence that it could help. He also said that if I needed it longer term then that wouldn't be a problem either. Keep shouting and I'm quite sure you will be heard.
Another point slightly left field but found out that all cancer patients can get free prescriptions (whether cancer related or not) just need to get a fp92a form from your
Gp.
Best wishes
AL

User

Posted 01 Apr 2016 at 13:44

Hi HC

I guess if you're seeing the Consultant soon, you'll get what you want regarding the low dose Cialis. I'm in the same boat, The GP refused it even though, like you, I cited the Consultant instruction to take it.

I think part of the problem may be that the manufacturer/patent holder of Cialis has not made an application for it to be used in this manner, so it's quite easy for the NHS/NICE /All Wales Medicines Strategy Group (AWMSG) etc to be rather dismissive of attempts to allow prescribing via GPs. Yet some do. Why is this?

When I see my Consultant on 11 April, I expect that since he advised me to take it, he will prescribe 5mg Cialis. I will then ask about why he thinks it beneficial, and if there is research to support this. Some might think that I should just take the Cialis and run- there seems to be such variable practice wrt GP prescribing Cialis. If you're in the dark , you stay in the dark..

I think the future should be that everyone on here who has been prescribed it by their consultant should ask if there is supporting evidence. Having got it, if they shared this info' on this forum, it might enable a push for the wider prescribing of Cialis ( if it works).

In Wales, they seem to allow NICE to take the lead on prescribing guidelines. Cardiff has only recently had a da Vinci suite. I don't think there's one elsewhere in Wales. A lot of prostate cancer patients have to cross into England.So, although there may be a urologist on the AWMSG, it is entirely possible that their understanding of Nerve Sparing and Cialis is little better than mine. They make the policy.

I found out about private prescriptions and asked my GP for 5mg Cialis 28 days to tide me over until I see the Consultant. The GP does not charge for this- you have to buy the pills though from the pharmacist. There is an online regulatory system for UK based online pharmacies which suggests you get what you pay for. Be aware though that the prices online vary massively. In the end, I had Cialis posted to me from 'Dr Fox' ( Glasgow) for £55. I reasoned it was less stressful to pay up than chunter about the perceived injustice until my follow up appointment.

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