What's a man to do?
Sun, 08/11/2009 - 21:31
I have something that I need some help with.
Since my last update (I had an RP after being diagnosed with Prostate Cancer), I have had two more trips to hospital for post surgical complications. I have had issues with blockages ie “I canna do a wee” and when that happens it hurts like hell. I have had two proper blockages and one almost ( I knew it was coming) blockage. After my second blockage I had a cystoscopy which proved that the plumbing was in good order. Three hours after the catheter coming out I was blocked again and by God did it hurt. Answer to that was to stick another catheter in. So back into hospital last Friday to have a suprapubic catheter stuck in (it goes into your bladder through your stomach). Makes it hard to look good in the old budgie smugglers. So although all of this is due to the fact that I was diagnosed with cancer I haven’t even got to the point where I can have a PSA test that doesn’t give artificially raised readings (apparently the blockages can cause the PSA to be high) and it will be another three to four weeks before I can find out if things might not be right. My doctor thinks that they might still be too high even after the plumbing is sorted out.
Despite this I think I am still pretty fortunate – I am sure things could be a whole lot worse.
Now I have an issue that I am sure that some of you may be able to help me with. I have remained pretty positive throughout all of this despite having a catheter of one sort or another for 7 ½ of past 9 weeks. I have been going to work for the past five weeks.
The issue that I have is to do with my supposed reaction when people ask me how things are going. When people ask what happened and how I am I tell them – yes I have been diagnosed with cancer, yes I have had a Radical Prostatectomy and ongoing issues with urine retention and yes there is a high likelihood of Radiotherapy. And I am not sure what the future holds. But I say “it could be worse”. Well it would seem that saying such things (ie ”it could be worse”) is the wrong thing to do. I should be running the ‘woe is me’ line. It seems that my wife has to “set them straight” when people say that Kym seems OK. Apparently I am not telling the truth. Things are a lot worse than I make them out to be. And (here’s the rub) I should be telling everyone what a wonderful job my wife is doing at keeping things going.
Well it’s just that I would prefer to remain upbeat rather than sit and whinge about things. So what is a man supposed to do? Sheesh.
Mon, 09/11/2009 - 20:52
#2
Re: What's a man to do?
G'day KymG
I am now at the stage where people assume that I am worse than I am and because I say I'm doing well, that I must be covering up. You just can't win on this one!
When people ask me how I am doing, I usually try and make a joke of it - "I'm still warm and vertical - Ha Ha" Like you my wife will tell our real friends anyway. Those who really want to know do not ask me inane questions, or socially nice questions. They will quietly ask how the last week has been, and if I seem to facile, will ask further. If I say again that things have been OK then they rejoice with me. If things are bad then they lament with me.
Like you I have blockages and have had to to go in every two months for a cystoscopy and dilation for the past five years. I haven't had a suprapubic yet! When it gets to the stage they can no longer dilate, then it will be suprapubic time.
Funny, they never seem to tell you that this could happen before they recommend the procedure!
Cheers
Sailor
Out in mid-sea, by guidance of the stars. George Elliot, Middle March
Mon, 09/11/2009 - 23:05
#3
Re: What's a man to do?
We had lodgers from overseas, whom we didn't know, staying with us for a conference. At dinner one night I mentioned I was on sick leave from work and pretty much left it at that. Afterwards my wife said she was surprised I didn't 'tell the truth'. I said I was being courteous to our guests (who were not referred to us via personal contacts) as I didn't consider cancer a dinner table conversation.
What does one do?
I decided long ago that once I knew 'the truth' about something I would start making things up that would better represent that truth.
Writing it down is telling the truth, don't you think, kymg?.
Tue, 10/11/2009 - 02:14
#4
Re: What's a man to do?
Hi kymg,
I'm 'a wife' and it sounds like I am very similar to your wife, so I am looking forward to how this thread develops. I might get some very useful tips!
I too feel that my husband isn't always being honest with his/our 'situation'. On a physical note he looks, and is, remarkably well. I am more concerned about his emotional wellness.
I know that he is not speaking to anyone about his feelings, he has told me that. He has only spoken to me a couple of times since the diagnosis about how he is feeling.
When I 'set people straight' on the latest developments I am doing it in the hope that he will get support from others who now have a 'full picture' instead of the 'edited' version they get from him.
Maybe I am wrong, I just want him to have an opportunity to open up to someone, even if it's not me, about how he is really feeling and coping.
Just like you, he is not a 'woe is me' kinda person.
It is useful to hear it from the 'male perspective'!!
Wed, 11/11/2009 - 12:46
#5
Re: What's a man to do?
Well Mrs Elton I must say that you have actually made me think about things from a quite a different perspective. I think that you are giving me the helpful tips.
I too look good from a physical point of view. None of my contemporaries at work knew I was crook until the week I was going into hospital for surgery. Since going back to work I have had a catheter in which has made movement awkward. And I am not in pain. Just frustrated that I cannot do some of the things I normally do with ease. So to all intents and purposes, there is nothing wrong with me. And so I say things like “I’m warm and mobile” or “I’m upright and ambulant” or “A day above the earth is better than a day under it” I am trying to be upbeat which makes me seem OK. Given that most of my problems at the moment are post surgical not ‘cancerous’ than I feel no different to someone who broke an arm or had their appendix out.
Now having said that, Mrs Elton I think that maybe you are right in what you say. My wife is trying to tell people that despite what Kym says or how he looks, there is an underlying problem that has not been resolved. Hmmmmm now you have me thinking. I feel like a bit of a s#*@ now. Don’t take that to heart.
I have had a few ‘melting moments’ particularly when I was in hospital but I have not had one for ages. I do have a wife and six children to be ‘tough’ for – don’t I? Yes I know that you will say that I am allowed to be a bit sad but I don’t want to. I don’t want to let this beat me and the more that I hear that is negative the more chance there is of that happening. The other problem is that if I do have a need to ‘melt down’ or vent my spleen I am not entirely sure who should be at the end of it.
Or should I not allow this to worry me, get on with things and take each stage as it comes. I am buggered if I know. Is too much information / talk a bad thing or not necessarily a good thing.
Cheers
Thu, 12/11/2009 - 01:12
#6
Re: What's a man to do?
Hi Kym,
Wow, six kids, you and your wife deserve a medal (or 6!!). I am glad to read that you are not in pain and 'generally' are doing well!
I think we can both be of some help to each other, because it sure is helpful to me to hear the 'male' perspective.
As far as ' melting down' is concerned, I find this site is very cathartic for me (hope that's spelt correctly!), I have used the blogs as my personal journal, dating from when we first discovered the tumour, to this last set of results.
Admittedly, I didn't know about this site at the beginning of all this, I have only discovered it in the last few weeks, so have had to write a number of blogs to 'catch up' to real time.
When I write these blogs, I am doing it to 'cleanse' myself of the fear,frustration,hurt,anxiety, guilt etc etc. If no-one else reads them or responds to them, I have already gained just by 'off-loading' the stuff. If someone reads it and responds, then that is a bonus.
I don't feel that I am burdening anyone by doing it this way. I can be honest and know that people who may read it will have an understanding because even though the journey is different, the emotions needing to be dealt with are the same for all of us.
Taking each stage as it comes seems to be the option I lean towards.
Thinking too far ahead is frightening, but for me, I find I have to 'visit' it every now and again, for just a short while, and then I retreat to where I feel safe and supported.
We seem to find the strength to cope with what is thrown at us, sometimes it is enough strength to throw it back where it came from and sometimes it is just enough to 'dodge' things for a while.
I feel the more people on our side to help 'throw' the better, or maybe they can act as a shield. Not sure if this analogy is working for you or not but I hope you get my gist.
We can't do it all on our own and we don't have to do it all on our own. If people are aware of the reality of the situation, they can make the decision to help or to back away. For those who offer to help, be it, emotional or practical support it is one more person on your team. Those who back away probably aren't worth thinking about.
Accepting support from others is not a sign of weakness or that you are giving up, I see it as an opportunity to better 'equip' yourself and therefore make you stronger.
For me, taking each stage as it comes seems to allow me to 'cope'.
My mum and dad gave me a little plaque a number of years ago, it is hanging on the wall in my kitchen so I am reminded of it regularly!! It reads as follows:- (the bit in brackets I have added!)
Time is eternity (specially when you are waiting on results!)
Remember yesterday
Dream of tomorrow
But live today.
Would be interested to hear yours and others thoughts.
Thu, 12/11/2009 - 10:30
#7
Re: What's a man to do?
Mrs Elton,
Agree, agree, agree.
I, too find it hard to talk to people, I feel as if they might think I am a whinger. By being able to write down and share to "unsighted" friends - people that post on this site) it gets rid of any frustrations etc.
Hope everything is going well with you and your family.
By the way, mum is having her colonoscopy tomorrow. Goes back into hospital today and they will prep her. To put it bluntly she is "shit" scared.
Thu, 12/11/2009 - 20:33
#8
Re: What's a man to do?
Hi all
First of all I must apologise for a comment I made in the first post in this topic. I was rather scathing in my comments about my wife. I think I must have been in a rather bad mood and said what I don’t really mean. My wife is doing a really great job at making appointments, arranging things with Centrelink and generally doing a mob of things that I can’t do cos I am at work. So I apologise to her and to you all for making it sound that way it did.
Oh and thanks Mrs Elton for thinking that I need a medal for having six children. Most people say that my wife deserves a medal (which she does) but no-one thinks that I am deserving of one. Its nice to hear.
OK on with the show. Something of note that I have found is that the more positive and upbeat you are then greater the chance of maintaining friendships. If you don’t sound down then people will want to talk to you. No-one likes a whinger.
And so I shall sally forth into the wild blue yonder jumping every hurdle until I get to the end of the race (which in my case will be the success of the expected radiotherapy). Then I will lose a bit of weight, try to regain some fitness, fix some things around the house, try to be good Dad and Husband - and live long enough to be nuisance to the children.
Wed, 18/11/2009 - 01:31
#9
Re: What's a man to do?
Hi everyone,
Kymg you shouldn't apologise for your first post, we all have those days. That is exactly what this site is for! By writing it on here,we get it out without hurting the ones we love. This is a real roller coaster of a ride, with ups and downs, turns and twists, and if we want to have a little moan now and again, why not!! In this house we are like you in that we like to remain very positive and upbeat about cancer and the operations associated with it, but sometimes you wouldn't know it reading my posts!! We have to vent somewhere and this is a nice supportive place to do it.
One of my hubby's favourite answers to the how are you feeling question is 'strugglin' mate strugglin!' He just likes to see the look on peoples faces when he says that. Most people don't know how to respond. He even does it to the oncology nurses and they start rattling off the questions, nausea? neuropathy? etc etc. I also have one when I notice him looking uncomfortable if people get too serious. I tell them that 'there's nothing bloody wrong with him, he just wants time off work!' or 'suck it up Princess what's wrong with ya?' Another one is 'awww, what's he whinging about now?' People think we are mad, mean or both but we think we're funny. It also deflects their negativity pretty quickly, though I don't think they mean it as that. We just dont have the energy to carry their troubles. There is enough going on within our own family unit!
I keep all our close family and friends up to date with a group email. That way I don't have to inform people of the 'truth' in front of my husband when he is channelling everything into getting better. I am glad you posted this as just like Mrs Elton, I can see how things are from the male perspective a little clearer. The last few weeks I have been really bossy with his friends, demanding they take him for a quick drink down the pub, or a trip to the shed to sharpen the mower blades, then I disappear for a while. As you can imagine it is a real effort for them (not), but it seems to be relieving the boredom for him a bit. It also seems I could be in the running for wife of the year haha, as his mates friends wives are allowing them out for a coldy to help out!
Anyway, a positive attitude will never do anyone any harm, and if it gets us all through this.......
One hurdle at a time is the way to go, your absolutely right about that one, and celebrate every one you jump.
Take care
Alana
Wed, 18/11/2009 - 09:36
#10
Re: What's a man to do?
Ahoy hoy
Well I'm so glad I read this thread.
Being the 'wife' and a you guessed it - female - I'm allllll about talking about your feelings, deseminating why we feel this way, crisscrossing and totally pulling them all apart so I can look at them under a microscope.
My husband, being a guy, when asked how he's doing says he's fine, doing really well, can't complain.
What? Well I know thats not true and I go on my merry way to get to the bottom of how he's really feeling.
I've worked out that I'm an idiot and that for Rob, telling people the edited version with a cherry on top puts other people at ease but I think it also helps him stay positive because he believes what he says.
When he's truly concerned about something, he'll say something to me but when it comes to emotions, everyone may as well live on the moon cos that's the chance of anyone hearing about it. But I kinda get it now after reading this (big step for a blonde!). So Kym, you've done the females of the human race a big service.
Alana, I love your perspective. We too use humour to allay any awkwardness. Even in the chemo ward, Rob and I are usually laughing about something and I've noticed a few of the older patients giving us a few stares. I suppose many of the older generation think we aren't being serious enough as this is a serious situation. Well this is true, but like all things in life, we just have to deal with it as it comes and we choose laughter over tears because as the doctor always said, laughter is the best medicine!
Kym - On a ride like this, there are no feelings, no emotions, no behaviour that is too weird or not normal. We're human and we deal with things in the way we know how. The fact that we're dealing with it and not shying away from it, is the best gift we can give ourselves!
This site helps me deal with some of my darker emotions, stuff that I think my husband doesn't really need to see and it's comforting to know that I'm not alone. So you're not alone in feeling that your wife might be the biggest pain in your ass today or that you're feeing sorry for yourself and your kids are giving you the irrits. There are days where I wish my husband would just go for a really, really long drive - to WA or something or that my mother in law fell off the face of the planet. But I've come to realise that these are completely normal reactions to a completely abnormal situation 
Hope everyone is doing well in Cancer Land today!
Jo xxx
Wed, 18/11/2009 - 10:08
#11
Re: What's a man to do?
Some days i feel like sharing what is going on for me and some days i just dont. Those "dont" moments are covered over in a variety of ways and thats just the way it is. I dont stress about whether its right or wrong because at the particular time i am not sharing its right for me.
Wed, 18/11/2009 - 10:23
#12
Re: What's a man to do?
Hey Larn
I like "suck it up buttercup" lol
Wed, 18/11/2009 - 10:55
#13
Re: What's a man to do?
Well said everyone.
Thu, 19/11/2009 - 21:01
#14
Re: What's a man to do?
Well blimey,
I didn’t think for a minute that this would get quite the response that it has.
Having said that, I’m kinda glad that it has! I am still coming to grips with all of this.
M current situation is ’with catheter’ – a really dandy suprapubic job that sits exactly (and I mean exactly) where the waist band of my pants is. So every time I move or sit down it hurts. I wore shorts with an elastic waist to work last week which is not really the right thing to do in a office but it did help. This week I am back in pants with a belt (and a sore stomach). So enough of me grizzling– as I say things could be worse. Having this thing stuck in me has made the seemingly inevitable radiotherapy go off the radar.
The thing that I find frustrating, and maybe some of you gals can help me here, is the really polar moods that my wife has. One day she will be all concerned then the next she will be blaming me for dragging the family down. I fully expect that there will be mood swings amongst all of us but to blame me for something over which I have no control really seems beyond the pale. When we are out she says that “Kym must take it easy with things” and when we are home its “go and do some jobs”. So last Sunday I cleaned the pool, mowed the lawn and washed two cars. The next day I was buggered and could feel myself blocking up again slightly. All because if I look alright I must be alright.
Apparently I have really bad mood swings and I do get pretty cranky when things change around the house for no good reason. But I think I am handling it all pretty well. Maybe I am not.
Fri, 20/11/2009 - 00:37
#15
Re: What's a man to do?
Hi Kym,
Just got back from our 'family' holiday and gee, do I have some thoughts on mood swings!! Will have to deal with that one later, or there might be another mood swing about to happen!!
With respect to the 'go and do some jobs' bit, my experience is that it is 'all or nothing', hubby doesn't seem to have an "I'll ease into it and see how far I can get without totally wiping myself out" button. He either sleeps or runs himself into the ground.
Frustrating all round!!
Will get back to you on the mood swing stuff after giving it some thinking time!!
Fri, 20/11/2009 - 00:39
#16
Re: What's a man to do?
Oh, forgot to mention, maybe you can start a new trend and start wearing caftans to the office!!
Fri, 20/11/2009 - 08:48
#17
Re: What's a man to do?
Hi,
I don’t want to go flat out. I know that things won’t get better if I do that. I am doing everything I can to get my immediate problem sorted without even thinking about the underlying cause. Hell I have even stopped drinking and now only have drink at weekends (and only one) – all to give this body of mine a chance to recover.
No, the pressure I receive is from SWMBO and regardless of how I feel, I feel like I should saddle up and try to do more. When I come home from work at 5:00pm after getting to work at 6:30am I am told to go and do something. I live in a Regional centre so its only 10 mins to work and I am not travelling two hours each way.
But what I can’t abide is the “you’re dragging the family down” line. OK I understand that when people are feeling annoyed / frustrated things are said, that, in the cold hard light of day shouldn’t have been but to continually blame me for this is a bit extreme. It seems that she is trying to find someone / something to blame. All I can really say is S*#@ happens and you have to deal with it when it does happens.
It is really important for those people nearest and dearest (and even those who aren’t) to someone with Cancer to understand that none of it is their doing, they don’t want to feel like crap and they want to be good again so that they can eat properly, drink to excess if they want too, play sport, shag – everything.
Poor buggers like us do not need to be made feel guilty.
Enough of the whinge – its onward and upward from here.
As far as wearing caftans goes - well it is tempting - I could really let the breeze do some good.
Have a good one (whatever that might be - a couple of things spring to mind)
Kym
Fri, 20/11/2009 - 10:33
#18
Re: What's a man to do?
Kym,
I hope you are feeling better today. Your world has been turned upside down. Your nearest and dearest can help only in their usual way.
Only someone who has had prostate cancer can understand what you are going through.
I found what helped me was lowering my expectations of myself and others, either by communicating/managing them - bummer I know (it would be great if someone could do this for us)! Initially, I had a lot of anger - I felt victimised by the disease - it ruined my holiday plans, my husband plans possibly my fertility and I was out of work. I wanted to be around people but on my terms not theirs incl my husband. It's about control and power struggle. It is really hard for people to see it that way because on the outside you appear ok.
On this forum you can have a "whinge" with us - that's what we are here for because "we get it". Empathy is hard to find these days.
You have been through a lot (and still are) so your feelings/reactions are a moving target and adapting to your new life. Some things will be same but you also need to see it as a time for change - eg. work hrs, alone time with your wife and spending quality time with the children. Perhaps you need some quality time for yourself.
Zactly what you are doing imho!!
Regards
Julie