“Isn’t that the cancer everyone dies with, not of?”

Hi Shim76  

oh I totally get it. My OH looks good most of the time and some family member think there is nothing wrong with him . One actually said when he was poorly you need to get out there and learn to live without him . 

they haven’t a clue . They don’t see us up many night crying , dealing with the fatigue , knowing he will never be cured and in a palliative treatment plan .  Worrying  about the next PSA.  . So our motto is don’t listen to them . We live for each other and our children 

huge hugs & best wishes 

Liz & OH xx

Hi Shim

I think that if all the stats are low and it's inside the gland then u can say that but arguably doesn't go down that well with people who have high stats and/or it has escaped the gland but having said that even people with incurable PC can live for many many years.

All the best

Steve 

I so agree.  These phrases are ways for people to not deal with the real issue and change the topic.

When I returned to work after my op I was working from home for 4 months.  The norm for my role was visits and people were very understanding of the incontinence side, but generally wanted to dismiss the cancer.  I have to do an opening meeting with my clients and used that to educate them about the disease.  I point out that Prostate Cancer is one of the top killers of men over 50 and that it can be virtually symptom free.  I also state that one in four men will have it and that the side effects can be life altering.  As a result of talking to my clients, several men have been tested and one went as far as a biopsy before being put on monitoring.  

I don't do this as an ego trip but because while I was in hospital the nurses told me so many heartbreaking stories and asked me to make men aware.  The sooner this is caught the less men die and the side effects are not as life altering.

So I don't let them get away with dismissing it, as you never know when you might be talking to someone who might have it or may need to take it more seriously.  Certainly I would not hesitate, if I was you, to mention your husband's brother and that should be enough to make them think differently.  I know it's hard to talk about these things and you have both been through enough.  However, you sound like you do want to speak out and if you do then go for it!

 Shim76 I am fairly new to this and yet I am already annoyed by various comments "Be positive and you will get through this" A fellow cancer sufferer replies asking that if she does die, then has she not been sufficiently positive? This appears very aggressive, however, she has been on this journey for 20 years. I tend to explain that no matter how positive I am, it will not impact upon the issues with cells in my body, however, I will not let it get me down.

The other is "well if you do get cancer, prostate is probably the one to get" - to which I simply reply that any cancer is difficult to manage.

I do believe that most comments are made as a result of people not being able to process the issues and want to say something positive. I was probably guilty myself prior to diagnosis.

I do hope that he makes progress and that you continue to support each other, I feel that the fear will never leave me.

Hello Shim76 

This is an issue we all have - I am in my 4th year of my journey - I have lost friends, I am fed up with trying to tell people I am fine, I just want to get on with life.

I have found after 4 years, the people who understand and I have a bond with are other cancer sufferers and their immediate family - they understand - the rest, even if they try and understand they can't. 

Example - A friend asked me how I was, i replied fine but off for a CT Scan on Bank Holiday Monday - his reply "I wouldn't be going then - that's your holiday" - Plonker!!

Here's a link to a set of blogs we ran regarding this:

 When Positivity Hurts: Insights from the Online Community 

I just assume most people are unable to grasp I am dealing with something that could/will kill me and I just want to get on with life!!

Best wishes - Brian.