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Does cancer make us invisible?

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User
Posted 24 Sep 2017 at 12:16
Since I was diagnosed about a month ago,it seems like people are avoiding me. 2 or 3 people have just asked "any news?", then changed the subject rapidly. Apart from my wife,only one old friend has really talked to me about it.I guess most people just don't know what to say. I find that very disappointing, I think (hope) I'm better than that when the boot is on the other foot.

The reason for this observation is that I've not even got something along the lines of a get well card. Probably because there aren't any suitable ones. That's until I read this article this morning. I hope it will help someone, somewhere, sometime.

http://www.bbc.co.uk/news/world-us-canada-41366246

User
Posted 24 Sep 2017 at 16:39

Hello Tykey.

I do understand what you mean. Our daughter found people crossing the road in front of her rather than stop and give her a hug or "How are you coping" when our grandson was diagnosed. She found it very hurtful.

I currently have a friend undergoing aggressive treatment for breast cancer and periodically I make and send her a "Thinking of You" card, rather than a get well one. It's just a way of keeping in touch and letting her know it isn't out of sight, out of mind.

I do think that it is a combinaton of fear. Fear of the dreaded word "cancer" and fear of putting your foot in it and saying the wrong thing.

Have you had the comment yet "Well, if you're going to get cancer the best one to get is Prostate Cancer". That's a pretty common one. Because it can be treated successfully if caught early other people don't take into consideration that you might not be one of the lucky ones and PC men are lumped together.

Good luck. At least you'll have people on here, men and women, who understand your journey, and that of your wife I might add.

Best Wishes

Sandra

Edited by member 24 Sep 2017 at 16:40  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 05 Oct 2017 at 13:44

Now, my decision to "come out" on Facebook had surprising results, both good!

Many people who didn't know contacted me, to thank me for being open, and to encourage me. Nobody has offered sympathy, which I don't need or want, just positivity, which I do want.!

More surprisingly, it's had a huge effect on me. Before, I felt I was hidden in the trenches, lonely, cold and worried. Now, everything is in the open, Ive got team mates in the trench with me, I'm even more optimistic.

People really do want to be involved and have the opportunity to help, after all, we would want to help friends in trouble, wouldn't we.

User
Posted 12 Oct 2017 at 21:05
I blogged my treatment on FB - the good bits and the bad bits. It brings the disease into the public arena which is no bad thing. A couple of friends (real, not just FB type) went and chased up their GP for a PSA test. I believe it’s not a thing to be kept private though I respect folks who may have good reason for doing so.
User
Posted 16 Oct 2017 at 19:59
The most difficult thing I find is people think I'm well. I had my prostatectomy almost a year ago and took a few weeks of work. I don't look ill at all. Most of my staff think I'm cured. What people don't see is the anxiety around the three month PSA testing time.

By the way, it's odd for me too because I think I look and feel healthy. So, if it's hard for me, I can understand everyone else!

Ulsterman

User
Posted 25 Sep 2017 at 19:44
There is a great website called notanotherbunchofflowers which specialises in cards and gifts for people going through cancer or other illnesses.

It can be difficult knowing what to say and this site has a range of cards and gifts that might be a good way of letting a friend know that we are thinking about them.

Edited by member 04 Oct 2017 at 21:51  | Reason: Not specified

User
Posted 04 Oct 2017 at 19:08
Thanks to everybody for taking the time to reply, I have now started my hormone therapy (prior to radiotherapy). So I decided it's time to "come out" by starting a bit of a blog on Facebook. I already feel better.

I've asked everybody to refrain from commenting on my man-boobs, and definitely no tweaking of my nipples.

What a nice place this is! Thanks again😀

User
Posted 11 Oct 2017 at 23:19

Great that you feel so much better now you have opened up. I have had great support from family, neighbours and ex workmates (retired before diagnosis 15 months ago),

I think being open from the start helped, so everyone I know knows about it and seem genuinely interested in symptoms, treatment etc. I also found the black humour sometimes provided by my sons and workmates helped enormously - it was never unthinking or cruel and at times downright funny.

Take care and remain optimistic.

Dave

Edited by member 11 Oct 2017 at 23:21  | Reason: Not specified

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User
Posted 24 Sep 2017 at 16:39

Hello Tykey.

I do understand what you mean. Our daughter found people crossing the road in front of her rather than stop and give her a hug or "How are you coping" when our grandson was diagnosed. She found it very hurtful.

I currently have a friend undergoing aggressive treatment for breast cancer and periodically I make and send her a "Thinking of You" card, rather than a get well one. It's just a way of keeping in touch and letting her know it isn't out of sight, out of mind.

I do think that it is a combinaton of fear. Fear of the dreaded word "cancer" and fear of putting your foot in it and saying the wrong thing.

Have you had the comment yet "Well, if you're going to get cancer the best one to get is Prostate Cancer". That's a pretty common one. Because it can be treated successfully if caught early other people don't take into consideration that you might not be one of the lucky ones and PC men are lumped together.

Good luck. At least you'll have people on here, men and women, who understand your journey, and that of your wife I might add.

Best Wishes

Sandra

Edited by member 24 Sep 2017 at 16:40  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 25 Sep 2017 at 02:23

To be frank, I believe many people are embarrassed because they don't know what to say to somebody who has cancer and to be fair not everybody who has it wants to talk about it. We have even had affected fathers who don't want to discuss their situation with their own family as reported on this forum, yet alone friends.

The point made in the linked article about a dearth of appropriate cards is another factor because of not knowing whether the outlook is poor or hopeful.

Barry
User
Posted 25 Sep 2017 at 19:44
There is a great website called notanotherbunchofflowers which specialises in cards and gifts for people going through cancer or other illnesses.

It can be difficult knowing what to say and this site has a range of cards and gifts that might be a good way of letting a friend know that we are thinking about them.

Edited by member 04 Oct 2017 at 21:51  | Reason: Not specified

User
Posted 25 Sep 2017 at 20:19

Originally Posted by: Online Community Member
There is a great website called notanotherbunchofflowers which special uses in cards and gifts for people going through cancer or other illnesses.

It can be difficult knowing what to say and this site has a range of cards and gifts that might be a good way of letting a friend know that we are thinking about them.

 

What a brilliant site Alison. Thanks for the link

We can't control the winds - but we can adjust our sails
User
Posted 04 Oct 2017 at 19:08
Thanks to everybody for taking the time to reply, I have now started my hormone therapy (prior to radiotherapy). So I decided it's time to "come out" by starting a bit of a blog on Facebook. I already feel better.

I've asked everybody to refrain from commenting on my man-boobs, and definitely no tweaking of my nipples.

What a nice place this is! Thanks again😀

User
Posted 05 Oct 2017 at 13:44

Now, my decision to "come out" on Facebook had surprising results, both good!

Many people who didn't know contacted me, to thank me for being open, and to encourage me. Nobody has offered sympathy, which I don't need or want, just positivity, which I do want.!

More surprisingly, it's had a huge effect on me. Before, I felt I was hidden in the trenches, lonely, cold and worried. Now, everything is in the open, Ive got team mates in the trench with me, I'm even more optimistic.

People really do want to be involved and have the opportunity to help, after all, we would want to help friends in trouble, wouldn't we.

User
Posted 11 Oct 2017 at 23:19

Great that you feel so much better now you have opened up. I have had great support from family, neighbours and ex workmates (retired before diagnosis 15 months ago),

I think being open from the start helped, so everyone I know knows about it and seem genuinely interested in symptoms, treatment etc. I also found the black humour sometimes provided by my sons and workmates helped enormously - it was never unthinking or cruel and at times downright funny.

Take care and remain optimistic.

Dave

Edited by member 11 Oct 2017 at 23:21  | Reason: Not specified

User
Posted 12 Oct 2017 at 21:05
I blogged my treatment on FB - the good bits and the bad bits. It brings the disease into the public arena which is no bad thing. A couple of friends (real, not just FB type) went and chased up their GP for a PSA test. I believe it’s not a thing to be kept private though I respect folks who may have good reason for doing so.
User
Posted 14 Oct 2017 at 08:58
Originally Posted by: Online Community Member

Great that you feel so much better now you have opened up. I have had great support from family, neighbours and ex workmates (retired before diagnosis 15 months ago),

I think being open from the start helped, so everyone I know knows about it and seem genuinely interested in symptoms, treatment etc. I also found the black humour sometimes provided by my sons and workmates helped enormously - it was never unthinking or cruel and at times downright funny.

Take care and remain optimistic.

Dave

Black humour is really helpful both ways. I'm having hormone therapy before the radiology, and unsure about the side effects, so when I came out I warned everybody not to comment on any man-boobs, nor tweak my nipples. It's surprised me how many people were disappointed about the nipples being a no-go area.😀

User
Posted 16 Oct 2017 at 19:59
The most difficult thing I find is people think I'm well. I had my prostatectomy almost a year ago and took a few weeks of work. I don't look ill at all. Most of my staff think I'm cured. What people don't see is the anxiety around the three month PSA testing time.

By the way, it's odd for me too because I think I look and feel healthy. So, if it's hard for me, I can understand everyone else!

Ulsterman

User
Posted 19 Oct 2017 at 13:06

I had my op 4 years ago and doing fine.

I really found out who my true friends and family members were when i was diagnosed. Yes some people found it awkward to approach and know what to say. Some were marvellous as i expected and some surprised me with their help. There were a few, sadly family members living very close to me, who were too busy to even visit, send a card or make a phone call. I try to forget this but as i now see them its hard to do so. 

Ulsterman makes a good point about physical appearance. 2 weeks after the op i was up and about, walking where i could and meeting family and friends. Those especially who had not seen me for awhile couldnt believe i had cancer . If only they knew the turmoil within pre op and then thinking of 5 years of tests

User
Posted 30 Nov 2017 at 09:07

Hi, John250. Many people seem to think that prostate cancer is a good one to have, compared to other types. Everybody knows two or three people who have had it under control after 10 or 20 years. This is probably true, and that is great news😀
But you are quite right, we feel all the same emotions of fear and panic in those early months, because we don't have any handle on what's in front of us personally.

You do find out who your really true friends are, they don't need to be told you are in turmoil, they just know. Others aren't necessarily not our friends, maybe just a bit short of the empathy gene, mixed with a bit of ignorance.

We can now choose which "friends" to care for in return, and which can be relegated to acquaintances. Studies have shown that we can only sustain 6 or less friends in a proper sense. Beware of Facebook "friends"😉

Edited by member 30 Nov 2017 at 09:12  | Reason: Not specified

User
Posted 30 Nov 2017 at 14:54

We had lots of that "it's the best one to get" and it drove me mad. In the end I resorted to bullishness; when someone said "oh my father in law had that years ago and he is fine" I responded "that's great news. How many continence pads does he get through on average and, tell me, does he use injections to get an erection or has he given up sex?" Many people, even family members, have no idea what life is like even after successful treatment so they are shocked when I ask. People around us are much less insensitive these days :-/

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

 
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