I have decided to start a diary of my experiences with Prostate Cancer. I know it's a bit (read a lot) retrospective but things have happened that I am worried that I will forget and may be useful later.
I seem to remember a fait bit – dates, good days, bad days etc but with so many things happening it is easy to forget some of them.
My latest incident (which got me thinking about diaries) involved blood in my urine which gradually turned from a few drops to quite red. Initially it was only when I voided naturally and nothing was coming from my catheter and so I wasn’t hugely concerned but it soon started coming from my catheter as well and at that point I took myself to the Emergency Dept at the local hospital. I was given a saline drip and drank a lot of fluids and after a while the red became pink and today at home it is good ol’ wee colour.
As you may be aware one of the side effects of the surgery that I have had is impotence. I have been gently (and I mean gently) encouraging things along in a hope that my ‘manhood’ may return to some of its former glory and may damaged things in the process. The ‘fly in fly out’ (FIFO) ED doctor that saw me suggested that it was an unlikely cause and put it down to alcohol consumption. Given that I am drinking very little since my surgery I am having some difficulty believing that. So she doesn’t think that what I did in the way of encouragement is the cause and I don’t think that alcohol is the cause it leaves me in a bit of a quandary. Hence the diary!
I am sure that many of you keep diaries of the daily goings on and find them useful. I think that those with Breast Cancer are given a diary upon diagnosis.
Apart from that all is ‘good’. I had my Mother here for Christmas. I lost my Father to non-Hodgkinsons Lymphoma in 2003. It was the first time that I have seen her since all of this started. As you would expect she was pleased to see that her first born hadn’t wasted away to a shadow of his former self. She was also pretty pleased to see the rest of my family again too.
I trust you all had a good Christmas and laughed a lot.
Cheers (and beers)
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Here is something that has blown me away.
Most of the people that I know are aware of the fact I have been diagnosed with Prostate Cancer. People often ask my wife how I am going and she will happily give them a full account of my woes and how much this is changing our lives etc. And to some large extent and with much soul searching I have come to believe she might just be right. People certainly haven't given me a wide berth.
A couple of weeks ago we were at a Christmas Party and one of the people there had only recently learnt of my/our situation. She was upset to hear of things and unbeknownst to us went to Mass the next day and spoke to some others who were there including the local Parish Priest. Our family isn’t Catholic nor do we go to Mass, but our children are all in the Catholic education system.
Last Thursday she came to visit with a bag of food for us – mainly luxury things like cheeses, wine etc. Things to cheer us up. She is an absolute delight – full of positive thoughts and hugs and cuddles.
Then on Sunday we were visited by a family who are involved with St Vinnies with a large (and I mean really large) food hamper together with a mob of presents (and I mean a mob) for the children. We know the family and our children were at school together at one stage. I was, and remain acutely embarrassed by the whole thing. You see I still don’t see myself as being particularly crook (denial maybe). Sure the catheter is a pain and is irritating but generally speaking all is good. I certainly believe that there are others in our Community more deserving of the generosity of St Vinnies than us. I am still working, earning fairly good money and maintaining things pretty well. Well at least I think so – the eternal optimist. I guess though people see me as having cancer.
So what am I trying to say – support and friendship can come from the most unexpected quarter. Like this forum for example. And maybe the local group / school / church that you are involved with will be the ones that help not the friends that you perhaps expected to.
And the message and resolution I take from this is that I will be doing what I can to make the lives of others a little more bearable because my life is pretty bearable and I can enjoy a beer (although getting rid of it hurts sometimes) and taste my food and I have some great support around me. Please have faith in whatever you choose to have faith in.
And I still awaiting a visit from our local Parish Priest
May you all have a magical Christmas. Take a day off from the problems and enjoy time with you family. And laugh til you cry.
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I cannot possibly imagine just what you are going through. You are obviously a very strong person (as all supporters need to be I guess) but you seem to be taking it to a whole new level. I think we can all take strength from you.
Are you able to get some 'home help' to get you through the difficult times when you need time-out. Family can often be very willing to help but I suspect that they come to it with an emotional attachment. Maybe someone else skilled in this type of thing may be what is needed.
Getting the bad calls that you have unfortunately had makes my woes pale into insignificance and I feel a little guilty having a whinge.
I am not sure that anything I could say would make a difference to the situation except to say that I am sure everyone who reads this feels the same for you. Remember that our thoughts and prayers are with you and your family.
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Thanks to all of you for your comments and best wishes. I must say that I feel a great sense of relief. I know that all may not be over but a break from it is good.
My wife seems less positive than I am - not sure whether that is trying to protect me from things or its just a negative reaction.
Hope your Christmas is spent with all the important peopl in your life and the New Year brings good health and good fortune.
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I had blood tests last week to see if my PSA has improved.
Well the good news is that it has come down. Yeehaaa
It is still high but that may due to the catheters / plumbing problems that I have been having. This is going to be checked out again next week (another hospital visit) but I don't have to have a blood test to check my PSA for another two months. I feel like I have been given a reprieve.
Radiotherapy has now been pushed back - "we don't want to radiate you unnecessarily" and may not be needed at all. Another Yeehaaa
I will still have a catheter until I can p*ss without pain (and it can be painful). Skinnydipping in the pool is not on when there is a tube hanging out of you is probably not the best look. Although maybe if I was suurounded by others in the same boat (or pool) it wouldn't be so bad.
So now I can have a 'relatively' relaxed Christmas.
Now that this has happened to me it makes me really feel the pain that all of you are going through particularly when you can't see the end of the tunnel. I feel guilty. My heart goes out to you and I hope and pray that all the 'issues' get sorted your futures are full of promise.
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Hi Julie and others too
Actually I guess I wasn’t really worried about embarrassing myself – beyond that now. More a case of embarrassing all you good folk out there. I generally don’t discuss my erections (or lack thereof) with people. Seems a totally inappropriate and I would normally get the measure of someone before I say too much anyway. I guess I just don’t know who I am talking to here and so I worry that I have said the wrong thing. Sex (along with politics and religion) is one of things we are taught not to talk about in company.
I have discovered that I can talk to people with cancer about all manner of things that are affected by cancer without too much discomfort although I think I say too much and then think “Hmmm went a bit too far there”.
Quite frankly I could do with a shag right now and knowing that I may never have another one leaves me quite depressed so the less I think of it the better off I will be – but hell I am a bloke and we are always supposed to be thinking about it – aren’t we. I really have to get over some of the other issues surrounding my surgery.
Sailor, - your comments from the Oncology Society meeting make some interesting reading too – it is interesting the she was a ‘she’ and probably hasn’t a clue what blokes prostate blokes are going through. The loss of the ability to have a ‘useful’ erection takes away some of a man’s manhood and can be quite disheartening both for him and his partner. I tried to explain this to a counsellor and used the analogy of a woman losing her breasts. She said “I hope you think of women as more than a pair of breasts”. Well der… yes but the loss of them is devastating for a woman as is the loss of the ability for a man to have an erection. But I am getting off the point.
I guess there are other ways and means of releasing sexual tension for cancer sufferers and their partners but along with sex comes intimacy and that cannot be traded away.
Ah well maybe a good night’s sleep will make me feel better.
Is the sun over the yardarm yet?
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I hear what you are saying - its a bastard
I had a Radical Prostatectomy recently that was not nerve sparing. As a result I am unable to acheive an erection possibly for three years (a year to eighteen months without sex seems quite doable in my eyes.) To give you some idea (and now we are cutting to the chase) all the nerves responsible for the erectile function are shot to buggery and will take time to sort themselves out if they do at all. Nothing I or anyone else can do (and I mean in a personal private way) will help get an erection or even give me hope. Hell I cannot even go to the toilet standing up as there is not enough length to get out of my pants. Sheesh. And I am only 49
Added to that is the incontinence - well that just makes for a real dandy night between the sheets.
And I hear what you are saying about pills and potions. They hardly enhance a romantic night / day whatever. Added to that maybe the need for pumps or injections then a fair bit of the sponteneity goes away.
Now that I have embarrassed myself I had better stop. It seems that the big C has lots and lots of side effects. Its a pity that some of them are spoken about in such a roundabout way.
Do not give up - kiss, cuddle, squeeze, fondle. And yes, laughter is great
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Hi Mrs Elton,
Sorry I got you confused.
Please as difficult as it is to do you need to keep positive. I know smiling can be difficult.
Your husband is feeling pretty ordinary too say the least and a smile from you or the children can make all the difference - especially at the most unexpected time.
I will be the first to admit that things are strained where I live too and I am being blamed for dragging the family down. Hell one of my wifes 'friends' said that me getting cancer was karma. Didn't make me feel good to hear that but, well, she might get hit by a bus mightn't she. (No I am not a bus driver) Now that would be karma. But, do you know what if I told someone else that like I am telling you now, then they would be horrified. Frankly I don't give a you know what about what that woman thinks I just get on with things - dems are people you can do without.
Look I really don't know all the answers. I guess you have done the counselling thing. Some blokes find it harder than others. Maybe a directive from your specialist might be the go.
Everyone that I work with is amazed that I have been so open about what is happening to me. Maybe that is helping me a bit. It may be an avenue that you could suggest. I don't know your husbands situation but sometimes being out there may help. Not a whinge mind you but more of a 'look I'm crook and still able to do things' type attitude.
My heart does go out to you and your family. Remember there is plenty of help - come here to vent your spleen or the Cancer Council for professional help.
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Mrs Elton, Mrs Elton, Mrs Elton (said with an increasingly despairing tone)
I cannot for a minute possibly undestand what you are going through. My situation is different however we do have something in common. All your energy will be spent maintaining the new 'normal' in your household. You do not need to spend it trying to reach out to your friends for fear of letting them down. If they are not there to support you and your family, then they are letting you down.
If you and Rob need time together ask your friends to take the children for half a day or a night for some much needed R & R (both for a change of scenery for the kids and for some 'up close and personel' time with your husband).
It might be the time (if you can) to do something that you don't normally do.
But please please please don't feel that you are letting anybody down.
And remember to smile and find humour in strange things - works for me. Stay positive and people will want to be around you.
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I had the same operation nearly three months ago. It ain’t a heap of fun as I sure you are aware.
I hope that you haven’t had the same problems that I have had – blockages and catheters. If you haven’t and you are not having incontinence problems then you are well on the way to getting better.
Your six week blood tests will let you know how things are going. My PSA was up caused in part because of the plumbing problems that I was having and also because not all the cancer was taken. So now I wait.............
You have come to a good place – not specifically for prostate cancer -but for help in the issues that surround cancer in general. You can vent your spleen if you like and no one holds it against you. Everyone is here to help.
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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.