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Am I cured or in remission?

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User

Posted 27 Jan 2020 at 19:33

Rick

Considering your post I fully agree how life changing diagnosis is for you and your wife. We feel lucky to have found a good surgeon and had a positive first result post surgery 14 weeks ago. Hubby still struggling with incontinence though way better than 6 weeks ago. He had a long term problem with ED which we had lived with due to an enlarged benign prostate. We are hopeful of a good recovery in the next 9.months. thank goodness for tena products. We are still shell shocked and life will be known as life pre 13th sept 2019 and post

We are deeply tired and gave additional family stress to deal with an approaching major building work. We will get through I guess. As my mother said "That is another thing got through. " I feel we should make every day count as you really don't know what life has in store for you.

I am truly grateful for the support here and the nurses who gave reassured us in the early days post surgery. It was hard to call the ward for advice and our Macmillan nurse was very busy.

Wish well.

Edited by member 28 Jan 2020 at 15:23 | Reason: Not specified

User

Posted 29 Jan 2020 at 17:10

Originally Posted by: Online Community Member

Ditto - all the best Amnon for tomorrow, hope it all goes well. Please keep us all posted on your progress, you are not alone!

Thanks all.
Just back from hospital.
Op went well. Feeling a bit rubbish. But nothing terrible.
And each day is better.

I am finding the Catheter a bit difficult - constant sensation of the need to pee.
The say this feeling should subside in a few days.
At UCLH urology department everyone was quite amazed that I have never had a catheter before.
Apparently if you haven't had a catheter, you haven't lived.

That said, I was pretty terrified of getting disemboweled by a 6 arm robot,
and it is great to be on the other side. From here, onwards and upwards.

User

Posted 29 Jan 2020 at 20:08

Great news!

have a good recovery and take it easy :-)

User

Posted 29 Jan 2020 at 21:32

Good luck with your recovery.

Ido4

User

Posted 30 Jan 2020 at 13:15

Good to hear from you Ammon - the needing to pee is what I experienced, it will not be long before the catheter will be removed and what a joyous relief that is! Best wishes for a speedy recovery.

User

Posted 02 Feb 2020 at 08:58

Might I just say that if it helps, I have driven the 73 bus on a number of occasions over my career and so far have not hit anyone. I hope that this will give comfort to some.

All the best

Kevan

User

Posted 02 Feb 2020 at 12:06

🤣

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

User

Posted 11 Feb 2020 at 20:50

Well it's now 10 weeks since my RP operation. I'm back at work and doing my best to just get on with things. I still need to wear pads, but they are the very thin light ones. Still waiting to see a specialist to discuss and address the ED (appointment end of the month), but I am on 50mg of Sildenafil every third day.

Everyone comments at work and socially how well I look and on a positive note, I'd rather look like the old Rick then have an appearance that many assume cancer survivors should look like! However, whilst I strive to be upbeat, I still don't always feel positive and still have down days. Inside I'm a long way from my old self, for some work gives them a purpose, but that's not how I currently feel, it's merely a means to keeping a roof over my head. Not looking forward to the annual appraisal process next month, having to demonstrate enthusiasm, prove your worth, promote your achievements, commit to development, when all I want to do is either be left alone to get on with my job or better still get early retirement, which unfortunately is not possible! I guess again on a positive note, I'm fortunate to have a job, appreciate many men have to deal with their prostate cancer whilst unemployed, but I've had enough of the "rat race"and the endless pace of change in the work place.

Edited by member 11 Feb 2020 at 21:48 | Reason: Not specified

User

Posted 11 Feb 2020 at 20:58

In the annual appraisal process, they have to make allowances for that fact that you are a cancer patient. Otherwise they are laying themselves open to being accused of discriminating against you on grounds of disability.

User

Posted 12 Feb 2020 at 13:14

Originally Posted by: Online Community Member

Hi Rick,

I had my op in November and have to say that I feel the same way with regards to work and socializing, (and the "rat race").

I still have down days too and definitely don't feel the same as I did before.

Not sure what the answers are, maybe it'll improve over time, who knows?.. anyone?

Cheers.

Edited by member 12 Feb 2020 at 14:10 | Reason: Not specified

User

Posted 12 Feb 2020 at 18:30

I don't know the answer. I put a brave face on it, but that is definitely not the answer.

People think I'm OK, they make glib statements about it being a very treatable disease, or the best cancer to get. I know they are trying to be helpful, and I don't criticise them, I certainly don't want people to think "Don't talk about the big C, Dave's in earshot" so I think it's better just let the conversation go, and maybe correct some of the assumptions gently.

That is the good thing about this forum, we are all singing off the same hymn sheet.

Edited by member 14 Feb 2020 at 09:05 | Reason: Punctuation

Dave

User

Posted 12 Feb 2020 at 18:49

Hi Kevin T & Dave & Co,

There are no quick fixes, things will improve (we must believe that), but it's a struggle! I was told by a member of our HR department last autumn I was lucky to have one of the better cancers, very treatable. Yes it's treatable if caught early, but the operation as we know has life changing consequences, but I'll not waste my breath explaining that to the person in question.
The trouble is I look physically well and therefore work colleagues understandably think all is well, happy days, back to normal, but we know we are far from normal. I'm not as confident as I once was, often feel anxious and it's a battle to keep my emotions under control at times. To be honest the "rat race" and endless bureaucracy many of us have to deal with at work was getting me down long before my cancer diagnosis, my experience of recent months has just compounded my negative feelings.

Edited by member 12 Feb 2020 at 18:56 | Reason: Not specified

User

Posted 12 Feb 2020 at 21:24

As many of you will have realised, I am quite confrontational by nature, and J (usually) eases my excesses by being the most calm and reasonable person in the world. However, he found the 'best one to get' murmurings really upsetting (particularly because he was only 50 and it was still seen as an old man's disease at the time) and has been quite good at challenging sometimes. To "Oh, my father / friend / neighbour's uncle had that and he is fine" the best response is "That's great to hear. Does he prefer injections or a vacuum pump to get erections?" which shuts people up very quickly 😂

The worst experience he had post op was an employee who would only speak to him from the office doorway. Eventually, J said "it's okay, you can't catch it you know," to which the response was "well, you can't be sure of that"!

Personally, Rick, I would have downloaded the Macmillan leaflet on cancer diagnosis and mental health and rammed it down the HR officer's throat. Unforgivable ignorance from a professional who should understand about employee wellbeing!

Edited by member 12 Feb 2020 at 21:28 | Reason: Not specified

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

User

Posted 12 Feb 2020 at 22:51

Hi LynEyre,

Great response, brought a smile to my face reference "does he prefer injections or a vacuum pump" I'll try to remember that one if I feel the need to shock!

One thing we all need to try and retain despite everything is our sense of humour, if we shed tears let them be from laughter!

Edited by member 12 Feb 2020 at 22:52 | Reason: Not specified

User

Posted 12 Feb 2020 at 23:31

Hi Rick, you have again raised an issue l share. I am back at work and glad to be. I have encouraged a Jimmy Carr, bad taste type dark humour about about the whole issue but 4 in the morning it still bites.

So, today I went to the self help group meeting at my local hospital and like the site, it helped to chat (if only briefly) to guys with the same knowledge we have but who are further down the road.

I also was able to have a word with the MacMillan nurses (who are fantastic) and I have arranged to have a meeting to look at how to better understand how I can deal with “where I am” with this nonsense.

Perhaps there maybe a support group attached to your local hospital.....definitely worth a look.

Best to you and all

User

Posted 13 Feb 2020 at 17:34

Hi Seldomseen,

Thanks for your post, unfortunately there is no self help group or support group associated with my local hospital. There is a county based support group that infrequently meet and comprise predominantly of retired men going on hikes! I know exactly how you feel reference the 4am dilemma - hang on in there!

Edited by member 13 Feb 2020 at 22:45 | Reason: Not specified

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