Going for RP

Telling your family and friends isn’t easy, but, it is definitely the best thing to do. Afterwards you feel a sort of freedom, you will get support, my friends even read up on the type of cancer, the way it works and treatments plus how they could help or understand what you are going through. So, in my experience of RP don’t hesitate and say it with confidence and with a smile.

Best wishes for all that lies ahead

Peter

I had the same issues with telling people.

I didn't tell anyone until I'd got through what I though was all the diagnostic procedures, and I took the time waiting for results to educate myself on the disease, treatments, side effects, etc. This was both to allow me to decide what treatment path, and so that when I did tell people, I could answer any questions they asked. Also, at this stage, I was quite sure I could hold myself together, but much less sure I could cope holding anyone else together. This is different for different people - many or even most people will want the support of a friend during the diagnosis, but I didn't.

When I had the diagnosis and hence know my prognosis, I started by telling one person, and it was a much bigger relief than I imagined doing this. It also allowed me to talk about how to tell my parents, and I then did that. I'd planned to be able to answer just about any question they might ask, but in the event, they were too shell shocked to ask anything. I went over it again the next day, and brought it up quite often, so they new I was OK to talk about it, and they did start asking questions.

For me, waiting until the diagnosis was complete and I knew my prognosis was the right choice. I know this because it turned out the diagnosis wasn't complete, and I had to go for more diagnostic procedures. Then I had family on the phone instantly I came out of each consultation, and that I couldn't handle. I needed to digest and understand what I'd been told before I was ready to talk with others about it. I had to lie about when I was going to get test results so I could take time to review them and understand them before telling family. Fortunately, this was just a couple more months before diagnosis was really complete.

Then I slowly told small numbers of friends, including one who I knew also had it a year earlier. I didn't always get it right, but you learn as you go. Eventually, probably 10 close friends knew, and lots of new friends I'd made in some local support groups, and that gave me much more confidence, and I found I could usefully counsel others with the diseased because of all the learning I did at the outset. My hospital asked me to run one of their prostate cancer support sessions (and I've done another one since then too).

I'd been thinking about how I would fully come "out" about it, and decided to announce it to everyone when my radical treatments were complete, and I announced it on Facebook. I got overwhelming responses - by this point I was fully confident talking about it, and made it clear I was happy to do so, and got loads of questions, some privately.

Since then, I've brought it up in a public presentation I was doing about something else entirely as an awareness opportunity, and also got a fantastic response and answered lots of questions on it, as well as handing out the PCUK Z-cards to what was a perfect audience of almost all men between 40 and 70.

It certainly is worth thinking about how and when you tell people. You will generally get a fantastic response, which you'll find very supportive from friends and others. A few people initially struggled I think, not knowing what to say, but my joking about it cleared that up quite quickly. (There are plenty of jokes to be had about hormone therapy and symptoms.)

Telling children is a particular challenge and Macmillan do an excellent free book on that specifically. You can't hide it from children - they know instantly if you're hiding something like that, and they will assume it's something really bad, possibly something that's their fault.

Edited by member 03 Oct 2019 at 23:09  | Reason: Not specified

Blighty,

It would have been nice not to worry them, but in my case I'm a part time carer for them. I needed to explain why I wasn't going to be around for periods during treatment, and why I wasn't going to be eating much of what they normally eat during RT, etc.

I should have explained that.

Also, they see me now doing things like PCa advocacy events and support group meetings, and they can see my facebook where I talk about it. Hiding all that would have been a right pain, so I'm glad I told them.

Edited by member 04 Oct 2019 at 15:08  | Reason: Not specified

Yorkhull made a decision to keep his terminal diagnosis from his mum. At times it was very difficult to maintain but she died a couple of months before him having never had to worry about or fear for her much loved son. As most of us know, his cancer journey was fairly horrific and he was at times seriously ill so it cannot have been easy - he wrote eloquently here about the situation and how important it was to him to protect her from any distress. Each man will make his own judgment about who needs to know what, and what impact them knowing or not knowing might have.

Edited by member 13 Oct 2019 at 21:48  | Reason: Not specified

You're bulk buying Tena.  Be careful I bought them a few at a time then decided to buy a big pack just as it suddenly got a lot better.   I gave them to a charity shop.

Tena are a bit flash with their dark blue trendy shape   It was January to April when I was wearing pads and the Boots ones are big and warm and I didn't expect anyone to be looking at the big white pad. 

I didn't mind wearing them.  It's a bit of a laugh being able to relieve yourself a bit while sitting talking to someone although I found the catheter and bag better for that sort of trick, just hoping it didn't make a noise.  It might be a man thing though.

My Gleason went from 4+3 to 4+4 which I wasn't that pleased about although the margin was negative which he declared was good news. Especially as I'd been told it was close to the edge.  So I didn't question him about that as ignorance is bliss.

 I sometimes wonder how accurate the Gleason is when it depends on it being mainly a certain number of distorted cell structures.  They don't say it's marginally better or worse than 4, although I guess the marginal doesn't matter in the big picture except to make you perhaps feel a little bit more comfortable.

Edited by member 15 Oct 2019 at 19:03  | Reason: Not specified