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Going Public or Not

User
Posted 01 Apr 2019 at 16:39

Today's Times contains the following about the Fry, Turnbull effect and rush of patients to be checked.

'Last year, Stephen Fry and the presenter Bill Turnbull were praised for raising awareness of prostate cancer after talking about their own experiences with the disease.

Turnbull announced that he had been diagnosed with an advanced form in March last year, just weeks after Fry revealed he was recovering from prostate cancer surgery.

Their decision to come forward is thought to have led to a surge in people visiting the NHS online advice pages and NHS bosses dubbed it “the Turnbull-Fry effect”.

NHS England said there were 70,000 visits to the NHS website advice page on prostate cancer in March last year, a 250 per cent increase from the monthly average of about 20,000.'

..................................................................................................

My own situation is I've told no-one except 3 family members.  Perhaps it's a bit selfish, although I wouldn't be telling many so maybe it's not.  If I had a big profile it would do some good.

The reasons I haven't told anyone are that I don't want them asking me or my wife questions each time we meet.  I don't want to be the person people talk about when they talk about illnesses.  I don't want to be thought of as the person who had an op of the big C.  Sometimes I've been a bit wary of talking to people I know are ill in case of what they tell me or wondering if they don't want me to say anything.   I know 2 people who had cancer ops and everytime I see them that's who they are firstly.  There is a chance I'll be alright for many years.   It's tempting to go public but not yet, perhaps if I become obviously ill.

Am I wrong, is there no wrong. Am I thinking too much and an indecisive type, probably.

User
Posted 01 Apr 2019 at 22:13
I do tell my friends that I have (or, hopefully, had!) PCa because I was diagnosed when completely without symptoms, and I want to encourage them to get tested.

User
Posted 01 Apr 2019 at 23:21

I told everyone I knew as I had no symptoms whatsoever and didn't want anyone to be unaware of the dangers.

As a result one friend who went for a random test was found to have PC and he too had a RP as a consequence.

I feel me spreading the word has probably saved his life too laughing

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User
Posted 01 Apr 2019 at 17:31

There is no one right answer.

I didn't tell anyone until I knew (or thought I knew) the extent and possible prognosis, and I had taught myself enough about the disease that I would be able to answer their questions. I couldn't see any point in telling them I had cancer but I didn't yet know if it was going to kill me - I needed time first to do my own research on the disease and wait for the results of the diagnostic tests which indicated the path forwards. I could cope with that myself for a while, but would not have been able to cope with people around me bursting into tears or continually asking me how I was.

When I'd got enough test results to indicate treatment was with a curative intent, then I told my family, because I could give them a lot more info at that point. Actually, I told my brother first, and that enabled me to talk with him about how to tell my parents. I'd spent weeks reading about PC, treatments, side effects, etc, so I was also well armed to answer any questions. As it happened, there were almost no questions at that point - the shock is probably more overwhelming, and I later realised they were not able to take in everything, so I did run through it again over the following days, and was then able to answer questions they had. I continue to make it clear I'm happy to talk more about it with them and we do, but also I quickly realised each of them has a limit to what they want to know, and I'm careful to respect that too.

I'm a software engineer who does contracting for clients, and I did tell my main client at the time, because I was having to take days out at short notice for tests and appointments. They had no problem with that, and I wanted them to know there was a good reason I had to keep ducking out of work. (I decided to stop the contract later to give me a clear head to handle the diagnosis.)

After telling close family, I don't feel I need to hide it, but I don't advertise it either. I have talked with some friends I know have had cancer (or at least a scare of cancer), and it is really good to be able to do this. A neighbour was a salesman for the pharma company that first brought brachtherapy pellets into the UK, and he was useful to talk with (although he works somewhere else now). If it comes up randomly in conversation with friends, I will mention it, but I haven't brought it up myself as yet. Maybe at some point I will mention it on facebook so all my friends know, but I'm not ready to do that yet. That can probably wait until after treatment. I can imagine I will become an evangelist for having PSA test and highlighting the (very few) early symptoms that should cause a visit to the GP, but I'm not quite ready for that myself yet.

This was right for me, but it won't be for anyone else - each person has to work out their own strategy. I think things to weigh up are that you will cause worry to those near and dearest to you, but that's ultimately unavoidable. I chose to wait until I could support them in that worry with more knowledge and diagnostic results, but for many other people, you will want the support of these people during those early stages of appointments and tests, so you will need to tell them earlier. There may be friends who can't handle the information, and you might then lose contact with them. You may feel you can't tell your employer because it could harm your career (I would hope there are no such employers around, but there probably are).

It turned out that after I thought I had a full diagnosis and told my family, the consultants became less sure and sent me for more tests. I then had my family wanting to know the new test results the moment I got them and that didn't suit me - it didn't give me time to think about what I'd been told and do the necessary research to answer their questions. However, it confirmed that my original decision to wait until I had the diagnosis had been the right one for me.

I did have a chat with my MacMillan nurse about telling people before I'd told anyone, and that was very useful.

User
Posted 01 Apr 2019 at 21:58

The right answer for you is the one you feel most comfortable with.

I mention my past if it comes up in conversation, surprising how many men have had it, or are actively dealing with it.

Always careful not to push my treatment choice, probably go too far the other way?

Some folks have had tests as a result of our chats when they have talked about their urinary problems, and got caught early, no symptoms, no signs, just luckily caught early. Some have had minds put at rest.

Go with what you are comfortable with.

atb

dave

 

Just to add:  I had zero symptoms, I was lucky, abnormally high PSA, on the rise, caught in time.  It's probably not too late for everyone with zero symptoms, but.   atb

Edited by member 01 Apr 2019 at 22:17  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 01 Apr 2019 at 22:13
I do tell my friends that I have (or, hopefully, had!) PCa because I was diagnosed when completely without symptoms, and I want to encourage them to get tested.

User
Posted 01 Apr 2019 at 23:21

I told everyone I knew as I had no symptoms whatsoever and didn't want anyone to be unaware of the dangers.

As a result one friend who went for a random test was found to have PC and he too had a RP as a consequence.

I feel me spreading the word has probably saved his life too laughing

User
Posted 01 Apr 2019 at 23:35
John has tended towards the public rather than private approach but mostly because we fundraise for PCUK and other cancer charities and friends / associates are aware of why we do these events.

We have not experienced the problems described above - I don’t think any of our friends think of him as the one that has had cancer because so many of them have family members with cancer as well. If anything, it can become a little bit hurtful that some (family & friends) just assume all is okay and there are no lasting effects. He has been able to laugh with his mates about ED treatments and his closest friends ask occasionally whether the results are okay but generally, it is a non-story for him and everyone around him.

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

User
Posted 02 Apr 2019 at 00:14

I had no symptoms at all no pains no night time journeys to the bathroom, no leaking day and night time no rushing etc wasn't a sport man either but I was fit enough to play football or work out at my parks out door gym often.sex life was more than great!

One day during my usual Appointment at the surgery my GP she asked me if she could help with anything else?

All I said was I consume so much tea coffee and red bulls due to my demanding work.That causes me to go to bathroom not so often but when I go than I feel not fully empty my bladder plus after having sex each time I do go to the bathroom regardless of how much little drink I had before the sex 

She asked me that would I want my bum- (prostate) being exam? I said well..if its necessary yes why not ...she asked me again would I prefer being exam by one of Male GP or by her? I answered well..a finger is a finger I dont care but I prefer your finger .than she asked me politely please lay down..I said OKAY (at least she did not say bend over:)

Than she inserted her finger ..but I must admit that she was very rough!!!!

Than she asked me how do I feel (while her finger inside of my bum doing something)

I answered ..HOW DO I KNOW I DONT GET FINGER EVERY DAY!

she asked me again,how do I feel where her finger touches 

.soft or hard....??.I was going to say WTF!  It's not something you can easly precisely describe!!!

All I said was...I cannot describe sorry

.than MRI and Biopsy revealed that I had a cancer! 3×4=7 ( still dont know the meaning of these numbers)

I had to mentioned about the cancer to my lady friends....first ex wife ...American buddy s from.tennessee where I lived with my ex wife and son

As well as had to publicly mention on my Facebook so from my birth country everybody could read/see my cancer info.

(I'm really not a Facebook person I deactivated my account maybe twice a year)

But what I noticed from my British and Mediterranean friends is....Either they are so lazy to being examined or shy or being scared.!

User
Posted 02 Apr 2019 at 09:25

I told people.

On general principles I wouldn't be comfortable living a lie, and I'm much tto lazy to make up stories to explain my situation, and stick to them.

Also I'm not ashamed of living with cancer, and I too would hope as many people as possible are 'cancer aware'.

I told a few people, then mentioned it in passing on Facebook. There were a few embarrassing moments, but that passed quickly, and now it's just part of who I am. Which is as it should be.

The only downside is that a couple of very old friends couldn't cope with my cancer, and treated me as if it were contagious. Sad, but ultimately their problem, not mine.

I have zero regrets about it, and have had some fascinating conversions about cancer over the last four years that I might otherwise not have had. And have been able to support two people who had not shared their similar diagnoses, but felt able to confide in me, knowing of my experience.

Obviously my approach is not for everyone, but I think everyone should at least consider it. How would you feel if one of your friends deceived you in that way?

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 02 Apr 2019 at 11:14

I am in the 'telling people' camp. I am also fund raising for PCa UK and so it made sense to tell everyone.

So far we've had one quiz night , last Saturday, and some friends came but importantly, both my sons friends came in numbers too, which was fantastic ( 2 sons , not 2 friends wink). All asked how i was and i told the truth , i was doing fine thanks to the good treatment and help I got from the hospital and fingers crossed for the future. I didn't tell them of the issues with the mind but they don't need that detail, or of the worry of recurrence. You have to maybe temper what you tell certain people.

Also raising funds for PCa UK with a team Tough Mudder next month so again i needed people to know. Also i tell people that the funds are for research into better diagnosis as well as treatment so they understand where their donation goes.

Wasn't worried about telling my Dad as he's more interested in himself anyway. When are you taking me shopping is more at the top of his list of priorities.

So, as always , everyone is different. You have to make the decision based on your relationship with family, friends etc.

Phil

 
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