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User
Posted 29 Dec 2022 at 20:41

I bumped into my brother in law today haven’t seen him for ages as they live in a different part of the country 

I thought I would tell him about my recent diagnosis as he would then pass into my sister….. don’t overthink this as not all families live in each others pockets but…..

The point of this post is that how easily and instantly this disease is brushed off as nothing to worry about. You will be fine I know so and so who is fine etc……

It p****d me off….. what is it that creates this attitude? At best insensitive. Maybe just a lack of knowledge???

N 😞

 

User
Posted 30 Dec 2022 at 12:17
People mean well; it's lack of knowledge rather than malice which results in the occasional inconsiderate remark. I'm always grateful for kind thoughts and don't take offence from the form in which they're perhaps presented.

All the best,

Chris

User
Posted 08 Jan 2023 at 15:08

We have a very good friend who loves talking about his ailments which include uncontrolled diabetes, having a heart attack last year and his knackered knees. Whenever I start talking about my PCa if we are out in a Group(others ARE interested)  he kind of switches off and dismisses it with ‘You’ll be fine!’. And everyone seems to know some who’s had PCa and is “fine”. Since I joined the Maggies Cancer Support Group I have learned that everyone who’s had PCa is certainly NOT “fine”!

I put it down to the fact that he is a bachelor and has nobody to think about but himself. I then remind him that he shouldn’t be drinking red wine every night and ask him when his next insulin injection is due!

User
Posted 30 Dec 2022 at 06:27

I was very much like Old Barry, I never new what to say to people with cancer. I was also very bad at talking to people who had lost a loved one. This year my 90 year old mother died and spent her last month in hospital you learn very quickly when the shoe is on the other foot.

Since my cancer diagnoses and treatment I have turned into a ( waning ) zealot and any man I know I have told to get a PSA test. So far at least three men have, with one now put on active surveillance πŸ‘

All of my friends know and now and after our first meeting apart from a how are you, we discuss our mutual mundane topics.

The subtle change at the moment is these conversations are now being carried out in coffee shops in the morning and not in the pub at night because of my tiredness.

Apart from the first 2-3 months of being diagnosed with PC I decided to develop an “it is what it is” attitude and I think most men I meet have a morbid interest in the DRE 😳

PCa is different from other cancers and it might be due to charities success about getting info over about it that people think it is an o.k cancer to get ( no it’s not! )

I also find if I use the word @rse, end of a wizards sleeve or backside ( depending on the company ) it breaks the iceπŸ˜‚

If I meet someone who wants to change the subject that’s fair enough, the world does not revolve around me.

Rgds
Dave

 

 

Edited by member 30 Dec 2022 at 06:31  | Reason: Not specified

User
Posted 30 Dec 2022 at 11:35
John's friends are all aware of the side effects - many a laugh over a beer about using injections, trying to get the vacuum through a suitcase search at customs, our priapism trip to A&E, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 29 Dec 2022 at 21:46

N, the most frequent reaction I get is "bless you" followed by " you are looking well".

Thanks Chris 

User
Posted 29 Dec 2022 at 22:29
In the early years after J's diagnosis and RP, we had the "oh my dad has that and he is fine!" too often. My favourite response was "that's great - so does he prefer a vacuum pump or injections to get his erections?" Cue stunned looks of horror πŸ˜‚

The worst reaction was when J returned to work after his op. One member of staff would not enter his office in any circumstances; he would only stand in the doorway. Eventually, J said "it's okay, you can't catch it from me" to which the guy replied "well, you can't guarantee that."

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

User
Posted 29 Dec 2022 at 22:39

Hahahaha 

Thank you 

at last some humour 

User
Posted 29 Dec 2022 at 22:41

Work issue to come but my boss has been awesome so far 

obvs a woman

 

User
Posted 29 Dec 2022 at 22:43

Haha Lyn what a great response 

I am not sure if I am brave enough to say that  πŸ˜‚

User
Posted 29 Dec 2022 at 23:18

My current favourites

"You have got to be positive"

"We know X has had his prostate removed and he has made a full recovery" - X told you about his Erectile Dysfunction has he?

User
Posted 30 Dec 2022 at 00:15
I am sure many people are lost for an appropriate comment when suddenly told by somebody has a cancer diagnosis. Have to admit I was in this position once and later realized I made and inadequate response. This was well before I was diagnosed with PCa and related to another cancer.
Barry
User
Posted 30 Dec 2022 at 00:54

I agree with Barry. People hearing we have cancer are not as well informed as us. I don't give them time to reply to my news, before I have told them  "I don't want sympathy, I'm treated, I might be cured but we'll only know that if I die from something else". I then ask then if they have considered donating to a cancer charity, and if on this occasion they would like to cut out the middleman and donate direct to a cancer patient by going to the bar to buy me a drink. (PCUK, don't worry I don't think I've made much of a dent in your income).

I don't go in to all the side-effects, unless asked (which is never), so I guess it's not too surprising that laymen aren't educated in this area. 

Dave

User
Posted 30 Dec 2022 at 06:27

I was very much like Old Barry, I never new what to say to people with cancer. I was also very bad at talking to people who had lost a loved one. This year my 90 year old mother died and spent her last month in hospital you learn very quickly when the shoe is on the other foot.

Since my cancer diagnoses and treatment I have turned into a ( waning ) zealot and any man I know I have told to get a PSA test. So far at least three men have, with one now put on active surveillance πŸ‘

All of my friends know and now and after our first meeting apart from a how are you, we discuss our mutual mundane topics.

The subtle change at the moment is these conversations are now being carried out in coffee shops in the morning and not in the pub at night because of my tiredness.

Apart from the first 2-3 months of being diagnosed with PC I decided to develop an “it is what it is” attitude and I think most men I meet have a morbid interest in the DRE 😳

PCa is different from other cancers and it might be due to charities success about getting info over about it that people think it is an o.k cancer to get ( no it’s not! )

I also find if I use the word @rse, end of a wizards sleeve or backside ( depending on the company ) it breaks the iceπŸ˜‚

If I meet someone who wants to change the subject that’s fair enough, the world does not revolve around me.

Rgds
Dave

 

 

Edited by member 30 Dec 2022 at 06:31  | Reason: Not specified

User
Posted 30 Dec 2022 at 11:35
John's friends are all aware of the side effects - many a laugh over a beer about using injections, trying to get the vacuum through a suitcase search at customs, our priapism trip to A&E, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Dec 2022 at 12:13

As well as the many, 'Oh I know such & suchabody who had it, and they're fine', comments from friends & family, my father, 78, who prides himself on knowing something about everything, seriously asked me why my husband is having his radiotherapy over 4 and a half weeks, and not all on the same day, to save him the 60 mile daily journey.

I know they mean well, but the mind boggles at times.

Edited by member 30 Dec 2022 at 12:22  | Reason: Not specified

User
Posted 30 Dec 2022 at 12:17
People mean well; it's lack of knowledge rather than malice which results in the occasional inconsiderate remark. I'm always grateful for kind thoughts and don't take offence from the form in which they're perhaps presented.

All the best,

Chris

User
Posted 30 Dec 2022 at 13:04

Originally Posted by: Online Community Member

As well as the many, 'Oh I know such & suchabody who had it, and they're fine', comments from friends & family, my father, 78, who prides himself on knowing something about everything, seriously asked me why my husband is having his radiotherapy over 4 and a half weeks, and not all on the same day, to save him the 60 mile daily journey.

I know they mean well, but the mind boggles at times.

πŸ˜‚πŸ˜–

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

User
Posted 30 Dec 2022 at 13:33

I'm with you Chris, "you're looking well" gets to me that's because I don't go out if I'm feeling tired etc

User
Posted 08 Jan 2023 at 12:11

One of the things I found most wearying, in the weeks and weeks before my cancer diagnosis was finally definite, was having to manage the responses of others, in advance. Even trying to decide who to tell anything at all to, how much to tell, and how to phrase it. 

In the end I developed a repertoire of ways of answering to "how's things?", depending on how genuine I thought the question might be; and even how much I even WANTED to share with this or that person, to get a bit closer.

But at one point I decided generally to err on the side of over-sharing; and then (fairly quickly) telling people I was doing so, on the grounds that men don't do speak about our health enough (that usually got a positive response pretty immediately).

I would often follow up with 'I reckon prostate cancer these days is where breast cancer was thirty years ago; and surely we can do better than that...' (which made it a society problem, and by implication took the pressure of both me and them.)

You have to feel pretty safe with people though before you mention the loss of libido on HT. Or willing to take chances. 

Now that I've started the RT, though, it's a whole new mountain to climb. Who do I mention the diarrhea to? And when?

 

User
Posted 08 Jan 2023 at 15:08

We have a very good friend who loves talking about his ailments which include uncontrolled diabetes, having a heart attack last year and his knackered knees. Whenever I start talking about my PCa if we are out in a Group(others ARE interested)  he kind of switches off and dismisses it with ‘You’ll be fine!’. And everyone seems to know some who’s had PCa and is “fine”. Since I joined the Maggies Cancer Support Group I have learned that everyone who’s had PCa is certainly NOT “fine”!

I put it down to the fact that he is a bachelor and has nobody to think about but himself. I then remind him that he shouldn’t be drinking red wine every night and ask him when his next insulin injection is due!

 
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