Just a wife.....

User

Posted 25 Jun 2014 at 23:26

Hello, my husband has just been diagnosed. (3+4) G7. Had his MRI yesterday, so we are waiting to find out if it's spread. I'm trying my hardest to support him, but not sure if I'm doing it right or if there's anything else I can do. He's pretty messed up by the diagnoses, and has bad days and less bad days. He's at work at the moment, but really doesn't want to be there. I was thinking of buying him a journal so he could write all his thoughts and emotions down, any thoughts please? He's 48.

User

Posted 26 Jun 2014 at 00:48

In difficult times when teaching, I found writing things down helped. Compared to the pressures at work, I found dealing with PCa relatively straight forward, dealing positively with every situation as it arose. But we are all different - you know your hubby. The more he communicates his fears in any way, the better it will help him cope. One thing he should not do is bottle it up.

I'm 61 and retired, so maybe that has helped. At 48, I might well have been the same as my daughters were teenagers. Read Andy Ripley's autobiography - that may help. Andy was an English RU forward in the early 70's, and dealt positively with his PCa. He certainly does not bottle up his feelings.

Paul

Stay Calm And Carry On.

User

Posted 26 Jun 2014 at 22:21

Jams better half.

We came out of this experience a much closer couple, our relationship is stronger and we have had a lot of fun post op getting back to normal. I wanted to do all the consultations, tests and results on my own and excluded my wife, in hind sight not a nice thing to do to your partner, but that is how I coped with it. When the consultant said you have prostate cancer the brain shut down and I only remember a couple of things he said, better to have someone with you. Getting a positive result from the MRI scan will be a big leap forward. I was messed about with some test appointments and got down at those times, my wife pestered the NHS and got them sorted. I am fortunate to have good work mates who I could talk to, a couple of guys had prostate problems but not cancer. Only today I was telling the guys at work personal things about Viagra and pumps. Keeping busy stops you thinking about the issues all the time. When you talk to people it will surprise you how many people will say my friend, uncle, etc had prostate cancer years ago and they are fine now. I went on the usual roller coaster even considering not having any treatment, six months from initial diagnosis I look back and think what an idiot. Life is almost back to normal and ED is fun to sort. People are going to get fed up of this but start doing the pelvic floor exercises now, I was dry 16 days after op. Echo previous comments talk to the support nurses on this site. My cancer went undetected for three years due to a mistake at my medical centre and although the ED outcome could perhaps have been better if treated earlier, six months after first test in am clear of cancer. There are lots of success stories on this site make yours and Jams another one.

Thanks Chris

Edited by member 04 Jul 2014 at 20:25 | Reason: Not specified

User

Posted 26 Jun 2014 at 23:09

I was 49 at diagnosis.....Gleason 7, PSA 32, T3b spread into seminal vesicles ( whatever they are!)

That was 4 and a half years ago.......still bouncing along as normal.....had RP, then RT....now on HT but that is ok and I am working full time and enjoying life as normal..and I am planning on enjoying life for many many years yet.

Diagnosis is a shock.....but life can go on pretty much as normal

Email me if you want more info or a chat

Chris

User

Posted 27 Jun 2014 at 09:45

Hi Jams wife,

Like your husband, being diagnosed with cancer hit me hard. I'm sure it does this to most men and of course we all handle it in our own way. What I can say is though that the initial shock wears off and after a time and when you get to understand it better you sort of get used to the idea and stop worrying about it so much. I guess we all develop some form of coping mechanism. Mine was to fight it. Get on with the treatment I was advised to have and above all be positive as well as realistic.

My wife is also my nurse now. She is incredibly supportive and I don't know where I would be without her.

Good luck with it,

Steve

Show Most Thanked Posts

User

Posted 26 Jun 2014 at 00:48

Paul

Stay Calm And Carry On.

User

Posted 26 Jun 2014 at 00:57

Hi Jam's wife. My husband was 50 at diagnosis and although he wasn't very messed up by it at the time (he turned out to have a really annoying ability to instantly forget any bad news and only remember the good bits of every appointment) what did hit him hard was being in an outpatient waiting area surrounded by much older men and having nurses and doctors keep on saying "you're very young to get this"

In actual fact, we have a surprising number of men on here who were diagnosed in their 40s or early 50s, it is not an old man's disease. Only you can know whether a journal is a good idea - I think quite a lot of our members use this forum as their journal. One thing that my husband did was to ring the helpline this charity runs - they put him in touch with a man who had already been through it so he could talk about the treatments and side effects.

There is no self help guide on how to be a wife or partner in these circumstances, just trust your instincts. My husband kept talking about us splitting up so that I could find a 'proper' man while I was still young enough, and it took some effort to persuade him that I wasn't going anywhere. To be fair, a friend of ours was just going through a divorce because his wife had an affair and left him after his op. Your husband might be worrying about the side effects but also about how this will also affect you. Just keep reassuring him that you are in it together.

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

User

Posted 26 Jun 2014 at 08:11

Hi Jam's wife. "Just a Wife" ?

I think you'll soon find that any wife/partner that takes the trouble to come onto a site like this to find out how best to help their other half is far from just a a wife.

Some men cope, some don't. Some cope by denying or ignoring the fact that they have cancer at all, which initially was my husband's attitude.

You know your own man best. You would, in any case, without any input from anyone on here, have given him all the love and support that you can muster.

My husband's Gleason was also 3+4 and he went down the low dose seed Brachytherapy route.

You could make a start for yours by ordering the free "Tool Kit" from this site which has all the information regarding treatments, side effects etc.

You'll need all the information you can gather in order to be able to make an informed decision. In general, hospital staff don't help - they expect you to make up your own mind.

Love him, and reassure him all the time. Eventually he'll get his head round it but it is a shock when the cancer word is used and worse still when it's no longer about somebody else but about YOU.

Chin up. You are already on the road to helping him by being here.

My other half will not come on here but he does listen to the stories I tell him and it has helped him realise just how lucky he has been believe it or not.

Take care. Best Wishes Sandra

We can't control the winds - but we can adjust our sails

User

Posted 26 Jun 2014 at 10:09

There are no blueprints for how to cope in this situation, but you will find a wealth of advice and experience here. My partner was diagnosed last May, most difficult thing has been adapting to all the changes in our life together, certainly for me, I have always described some of this like being bereaved. I have found learning as much as I can about PCa invaluable, especially as treatment options sometimes depend on where you live, preferences of your oncologist, surgeon, etc so helps to be able to have informed discussions. Remember to take care of yourself as much as you can, it is easy as a wife and partner to forget your own needs because of what of happening to your other half. Sounds like you have not got the full story regarding your husbands diagnosis yet, when you do , treatment options will be clearer. Most of us say the waiting for diagnosis, scans, etc is the worse time as your imagination runs away with you. There isnt a right or wrong, just being there for your husband is often a very under estimated means of support so dont worry that you are not doing the right thing ! Do keep posting, as I always say, I couldnt have coped without the good people here. Wishing you all the best,

Fiona.

User

Posted 26 Jun 2014 at 17:26

By coming on this forum you are showing that you are not 'just a wife' but a worried and loving wife who wants to know as much as she can to support her husband.

The diagnosis stage of this disease is really stressful for both of you, so many tests, waiting for appointments and then results. Once they are all in there is usually time to consider the options for treatment.

I can truly say that this forum has been a lifeline for me over the last 12 months there is always someone that can offer advice and the friends I have made are invaluable to me.

I would urge you to download or send for the toolkit from this site it really is packed with information and advice.

Keep posting and ask any questions you need to no subject is taboo on this forum.

best wishes

User

Posted 26 Jun 2014 at 19:33

Hiya.

I'm 44 and was diagnosed 3 weeks ago. I'm now booked for a radical prostratectomy in August.

It's hit my wife harder than me I think but she has taken some great support from the nurses here at prostrate cancer uk.

I've spoken to them too and we've had the toolkit & lots of information from PCUK. Please don't hesitate in picking up the phone, they truly are wonderful & can put your mind to rest or offer advice & support all round.

Hope all goes well & you can get the right treatment for you guys.

Best wishes.

Carlos.

Edited by member 26 Jun 2014 at 19:47 | Reason: Not specified

Life's a Marathon. Run in peace.

User

Posted 26 Jun 2014 at 22:21

Jams better half.

Thanks Chris

Edited by member 04 Jul 2014 at 20:25 | Reason: Not specified

User

Posted 26 Jun 2014 at 23:09

I was 49 at diagnosis.....Gleason 7, PSA 32, T3b spread into seminal vesicles ( whatever they are!)

Diagnosis is a shock.....but life can go on pretty much as normal

Email me if you want more info or a chat

Chris

User

Posted 27 Jun 2014 at 09:45

Hi Jams wife,

My wife is also my nurse now. She is incredibly supportive and I don't know where I would be without her.

Good luck with it,

Steve

User

Posted 01 Jul 2014 at 21:41

Hello, I know this entry has taken slightly longer than I would have liked, and part of that reason is because I just didn't know where to start. Obviously having my deer husband diagnosed with cancer is going to evoke many tears (I now have conjunctivitis) but, neither myself or Jim had any idea of the support and genuine affection that anyone would write...... This site needs to come with a health warning in itself - "Tissues Essential" - anyway, thank you for all your warming words..... they carried me through on the down days. .......... So, today was our consultant appointment after the MRI, ...... In a nutshell the overall prognosis was very good...... "Although there is a lot of cancer and your prostate is pushing against your bladder, as far as we can tell - it is contained. Because of its size and spread however there is little chance of being able to save any of your nerves around your prostate." Holding my husbands sweaty hand I knew he was relieved. Without going into detail I'm sure you all know and understand the conversation that followed regarding survival rates, possible onward treatment should the lymph nodes and blood test reveal that the cancer has started to spread. We know the stats and that there is a very good chance that the surgery will be a physical success and rid his body of the disease, but how do I convince my beautiful, young viral husband that although our love life will now be different it will still just as special. It's a bitter sweet feeling knowing that I probably won't loss him physically but I may lose him mentally as he struggles to come to terms with the radical surgery after effects on his body. (Surgery was our agreed option). Thank you for your time in reading this. X

User

Posted 01 Jul 2014 at 21:58

Hi,

Its a good prognosis and with luck there is light at the end of the tunnel. There will be lots of issues to deal with following surgery but there are many on here who can answer your queries. Unfortunately I did not have that option nor RT which you have in your locker if surgery does not get it all. Its a tough road ahead but one which if you stay strong to each other there will be ways forward. Good luck on your journey. Take one step at a time!

Edited by member 01 Jul 2014 at 21:59 | Reason: Not specified

User

Posted 02 Jul 2014 at 07:06

Oh Jamswife. What a bummer. BUT, you'll know from the conversations on here that for many members, PC hasn't destroyed their love lives, even if it has removed some of the necessary aspects of it . Look at Lyns talk on what happened to her and her husband - it's no holds barred. It is also uplifting and reassuring I think.

We went a different route so I cannot advise you.

I am equally sure though that you'll both be there for each other and will work through it, indeed as some have already said, it does make you stronger as a couple.

There are ways and means - it's just different. Different doesn't mean worse.

The only advice I would offer to both of you is to talk it out. No good one or other of you bottling up how you feel or being embarrassed to say something.

If you don't hear it, you can't know
If you don't say it, the other one can't hear it.

All the best. I'm sure you will come out the other side together.

Edited by member 02 Jul 2014 at 07:27 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 02 Jul 2014 at 09:08

At least you now have the satisfaction of knowing the direction you are going.

What I will say, and I am not medically qualified, is be sure of the consultants experience.

I saw two surgeons and checked out their experience etc. I opted for the one who had done over a 1000 of these ops and trains other consultants. His focus was very much on removing the cancer whilst trying to minimise SE's. He said some surgeons will remove everything but one thing he could guarentee was that they couldn't put anything back. I believe the skill of my surgeon ensured I also quickly regained my continence.

Obviously there are times when nerves can't be saved.

However as others have said there can still be intimacy post op. Your OH will just need the time to adjust to his 'new' normal

Hope all goes well

Bri

User

Posted 02 Jul 2014 at 10:45

Hi Jams Wife .just back on forum after bit of a break ( feeling sorry for myself most of the time ) diagnosed PC feb PSA 27 Gleason 3+ 4 .mri said contained and bone scan clear elected for RP which was done 5 June this year. .To be fair was knocked off my feet with diagnosis and instantly retired ( I'm now 65) soon came to terms with the idea after weighing up options ,eg Dead v Alive. ,no contest.After having my op cancelled a few hours prior to going in hospital owing to Da Vinci breakdown ,went in on 5 June was treated really well and ,op was a breeze .Waking up with tubes and pipes bit of a shocker but soon adapted and feeling better knowing the biggest step had been taken .Discharged next day .Now just over 3 weeks later feeling fit as a flea just bit of incontinence going on which will sort in a while.i had lymph nodes ,margins etc removed and I know ED is going to be bit of a prob going forward but definitely going to work on it .Appointment with surgeon planned for 3 weeks time with PSA check.I'm really hoping for undetectable but whatever happens I want to keep focused on survival.With your husband he has got the benefit of youth on his side,I have seen younger men have the op and be discharged same day ,but nevertheless he should heal quickly . Has he decided which route to take with treatment ,only he can make that decision Hope all goes well for you and that he makes the right decision .Good Luck. Chris

To Infinity and Beyond

User

Posted 02 Jul 2014 at 19:46

Hi Jams Wife,

This is the first time that I have replied for you, believe it or not the worst part that is the waiting for a dx , scan results etc is probably the worst time and you are at least through that part.

As Yorkhull says it is a good prognosis and yes all of the treatments have some side affects but not everyone has them to the same degree. When we first started on this journey I tried to second guess what was going to happen next, worrying about everything before it happened and now over a year on with a very dire prognosis I realise that this disease is so unpredictable and every man who has pca is unique . My own way of dealing with it now is to cross each bridge when we get there and that's not easy for me because I am Mrs Worry Wort.

Hope this helps.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Jul 2014 at 22:23

Hi Jamswife,

So pleased to see that the consultation went well. Curative treatment, that's what they are offering you and that's what will get you through.

Time now to start shopping (proper pants, trackside bottoms with a drawstring waist, both a size larger than usual, a waterproof sheet (modern ones are not plasticky), a bucket, some good books) and if you can, perhaps squeeze a holiday in before the op. Find time for lots of what couples do as well!

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

User

Posted 09 Jul 2014 at 19:54

Hi Jams Wife

Am so glad the consultation went well. On the issue of nerve sparing, I was told by my consultant that he was unable to save the nerves and I asked for a second opinion. He was really good when I asked, I was embarrassed but he told me it was ok. Its worth asking for this as different surgeons are more skilled than others or have different techniques. In the end I switched surgeon and he saved my nerves. He switched me from keyhole to open to achieve the result. Its worth asking. I dont know whereabouts in the country you are. I live out in the sticks but went to Birmingham for mine. There are experts in most cities in the UK, also all the top guys in the UK do NHS as well as private. My surgeon who did me private recently did a chap at our support group on the NHS.

best regards

Eddie

Living life to the full, there is always someone worse of than yourself. Smile and get on with it.

User

Posted 10 Jul 2014 at 19:51

Hi Jamswife,

Every man deals with the issues on their own way, not saying that it will be "unique" or the "first time" that anyone has written a journal or a blog or a log, just for them it will be different.

A blog worked for me.

You are supportive, and he is so lucky, not lucky, fortunate, to have you at his side and being there.

dave

User

Posted 12 Jul 2014 at 10:03

My original surgeon told me that nerve sparing surgery was not an option for me. Due to unforeseen circumstances my RRP was carried out by another surgeon who had a huge number of similar operations to his name and who, to our relief, was able to spare some nerves on one side during the operation.

Steve

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