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RT - Twelve down!

User
Posted 11 Jul 2014 at 16:33

Hello everyone, been a short while since posting but have been busy helping my partner recover from a mini stroke.

Well, 12 down only 26 to go! Early days but so far so good, the staff are excellent, very accommodating and helpful. On the first visit all my concerns were well explained and each day that I've attended they always ask if there have been any problems.

 

This week was a little frightening, one morning I notice arterial blood in with my faeces. I mentioned it to the radiographer and she had a doctor take a look at me. He suggested that it could possibly be caused by the radiotherapy but wasn't sure, since then it seems to have cleared up itself. However, I have an appointment on with my doctor just to make sure nothing else is going on.

 

My main concern is that two weeks prior to starting radiotherapy I developed another UTI having just (I thought) got rid of one! Another set of antibiotics and after 10 days I was once again clear. However, once again I can feel the same type of symptoms when I go for a pee, so I assume that the infection has possibly returned. I cannot do anything until I see my GP next week and only hope that things don't get any worse over the weekend. My only worry is that the infection could possibly be in one of my testicles or in the prostate.

 

I was offered a TURP operation before the radiotherapy but chose to decline on the grounds of stirring up cancer cells and the treat of possible incontinence. So far, apart from a very slight slowing down of my urine flow I don't seem to be having any problems there...just hope it continues that way! I don't know if anyone else has had any problems with peeing after the radiotherapy treatment. It would seem that once I get off the table and head for the loo I seem to stand quite a while for the flow to begin. Once I get going it seems fine apart from the pain in the tip of my penis but I think this is part of the infection as it doesn't seem to be there when taking the antibiotics, afterwards, I seem to go without this problem and the flow seems to strengthen.

 

Anyone who might have any words of wisdom is welcome to add their tuppence worth!

Best regards

David

User
Posted 31 Jul 2014 at 21:30
Further update,

I have been fine for the past two weeks of treatment, urine flow had been OK after being prescribed Tamsulosin at my first clinical review. I had a further clinical review Tuesday of this week and still felt fine, waterworks were OK and flow was slightly slow but manageable. However, last night I was up to go to the loo about 5 times and starting to urinate seemed to be a problem. This morning was much the same and when I went for my radiotherapy I mentioned it to them.

After having a meeting with the consultant it was decided that I would have to be catheterised. Its the first time that I've had this done and I don't seem to be taking to the new sensations very easily! It's mainly the feeling of eating to go to the loo. Especially after bending down, the sensation is very excruciating and trying not to force anything out makes it even worse.

I realise I will just have to get used to it as it's going to be there for the last month of my treatment. Any tips or advise anyone can give would be helpful.

Thanks on advance

David

User
Posted 01 Aug 2014 at 20:37
Hi David,

Instillagel from the GP or perhaps your R/T nurses can be very useful for any soreness developing at todger's tip. Otherwise it's just getting used to the weirdness.

User
Posted 03 Aug 2014 at 01:54
Thanks Rob, that's most helpful. Have also found that not wearing underwear and just a pair of jogging bottom's is the most comfortable. It's certainly a weird set of feelings to get used to. Sitting/lying down, standing and walking although be it slowly seem to be not too bad but bending over especially first thing on a morning to swop over from night bag to leg bag is pure hell!

Was also wondering if after its removed if there will be a short period of incontinence?

Cheers

David

User
Posted 03 Aug 2014 at 19:14

Not sure David,  as mine was post surgery. Possibly as sphincter will have got used to a holiday. Be prepared with some pads as standby. I can always use them if you don't need them http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

 

I'd mention the bending down problem to nurse. It shouldn't be that uncomfortable & maybe pulling somewhere a bit.

User
Posted 04 Aug 2014 at 04:12

Thanks again Rob, I'll prepare myself with some pads and if I don't have need of them then they are yours! LOL

Here is a synopsis of what seems to be happening. I've actually written this out to show to someone at the hospital when I attend later today.

I seem to get a strong urge to urinate normally, I try to hold back until it passes. As the urge begins to dissipate I relax and as I do so there is a small amount of urine discharging from the end of my penis.

Getting out of bed first thing on a morning is the worst. Because I'm getting towards the end of my RT treatment my stools have become a little loose and I usually need to sit down. As I do, the above kicks in and the pain from holding back is excruciating. Again, when it begins to dissipate there is a small amount of urine discharge.

The above may happen two or three times before I can relax enough to defacate. After which I need to change from the overnight bag to the leg bag. Bending over to strap the bag to my leg brings on the urge to urinate normally and again I'm wracked with pain when trying to hold back.

Once I'm up and moving around I seem to be fine. However, there has been a few times when I've got up from sitting or bent over and I have felt the urge coming on. However, normally not as strongly as when getting up on a morning and usually without the small discharge of urine.

Cheers
David

Edited by member 04 Aug 2014 at 16:41  | Reason: Not specified

User
Posted 04 Aug 2014 at 19:23

Hi David,

 

Umm, eeer, reading this through I'm wondering why you are trying to hold back. With a catheter you just let it flow - as & when it wants to. In fact a gradual trickle/drips is normal. You just empty bag when full. That's it really.

The catheter holds the " valves " open all the time and you seem to be trying to close them by holding back.

 

If there is leakage between penis & catheter you could ask about that . Some men seem to get a bit of leakage anyway & use a pad for comfort to mop up.

User
Posted 04 Aug 2014 at 22:26

Rob, what I'm mostly holding back on is the pain which the strong sensations are causing, it feels like the urine wants to come out normally though my penis. That is a narrow tube, now narrower with a catheter inside of it and to allow it to do that bypass is extremely painful.

95% of the time when in bed, sitting, driving, walking, etc. it works perfectly fine with the urine dripping into the bag and there's no leakage from my penis. It's mainly when I sit down to defacate that the sensation of wanting to urinate normally begins. Other times like you say, I don't feel any sensation at all...it just drips out through the catheter and into the bag.

I was told today by a nurse that it was possibily because everything in that region is inflamed due to the RT and that it could be causing mixed sensations when I'm trying to defacate. It could also be because the catheter has slightly moved.

I have to see a doctor tomorrow when at the hospital. Unfortunately today I didn't get my RT as the damn thing broke down just before I was called! So I still have 12 sessions to go!

Hopefully I will possibly get an answer tomorrow!

Cheers

David

 

Tuesday Morning Update

There is now blood in my urine as it is dark brown...will be going to hospital early. Feeling very angry about all of this as I feel that I'm  just getting fobbed off each time that I speak to someone. This morning whilst going to the toilet to sit down I was screaming and crying with the pain.

Edited by member 05 Aug 2014 at 08:45  | Reason: Not specified

User
Posted 05 Aug 2014 at 19:37

Very sorry to see this David. Definitely need to see a good Urologist & I hope you have today.

Whole idea of a catheter is to make life easier !

 

Hope you got it sorted today. And an explanation as to what's actually happened. This should not be the experience for a catheter !

User
Posted 05 Aug 2014 at 21:32
Thanks Rob,

It would seem that I'm one of a small minority of blokes who's body rejects a catheter and the uroligist said today that all the symptoms that I mentioned seem to suggest that's what is happening.

Unfortunately, I will just have to grit my teeth and suffer as to remove the catheter will put me back to having difficulty passing water. He also said that in my case he didn't want to try and replace this one with another as doing so would cause me more pain and discomfort.

All he could suggest is taking anti-inflammatories and pain killers to try and help. However, difficult to take them whilst I'm asleep ready for getting up and going to the loo!

Anyhow, only another 11 more sessions to go and then 7-10 days after I can have the article of torture removed!

Thanks for all your support, its good to know that there's someone out there with positive thoughts and suggestions.

Best regards

David

Edited by member 05 Aug 2014 at 21:35  | Reason: Not specified

User
Posted 06 Aug 2014 at 20:17

Thanks for update - I was wondering what they would say.

Perhaps set another  alarm to take tablets say an hour or so before rising ? Giving time to kick in.

Bit stuck for further suggestions I'm afraid. I can understand not wanting to disturb as the prostate is likely inflamed with the R/T.

 

Soon be done though & 'twill become but a distant memory !

 

 

 
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