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.
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!
Out in mid-sea, by guidance of the stars. George Elliot, Middle March
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?.
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'!!
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.
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!)
Dream of tomorrow
But live today.
Would be interested to hear yours and others thoughts.
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.
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.
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.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.