How to stop feeling devastated?

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Posted 15 Apr 2015 at 21:29

Thanks Lyn. And edited! They didn't say about sparing the nerves on one side or another - or not, that's me surmising that if there is no cancer on that side, they may be able to spare them - erring on the side of caution, I guess. they mentioned cialis and viagra, pumps and injections, but we were too startled by the good news, I think, and we'll go into all that when we need to. Right now, they're aiming for a cure ...

We'll know more when we see the surgeon, and then we'll have all the questions listed - the ones in the toolkit are a good start. But I know that until they get in there they won't really be sure of what they are faced with, even though the MRI scan shows it's contained, etc. Just pacing my response, I guess. Gray seems fine right now - he can compartmentalise brilliantly. I'm so tired I'm b**** shattered!

3 years? Blimey. Oh well, they say necessity is the mother of invention.

User

Posted 15 Apr 2015 at 22:30

Good evening Steph,

Time for you to "wake up and smell the coffee" perhaps? Think about this, will you?

Your last post is really worrying and enlightening about your predicament, in that you are not sure what was said what was mentioned, you are having to surmise, guess etc. It is difficult to see how your recollection of that meeting is of any use to Gray.

If you and Gray are still at the stage where you are devastated, shocked, startled, etc etc and unable to take in what is being discussed and suggested how can he possibly make an informed decision?

Have you considered getting some help in the meetings so that when you and Gray are unable to take in what is being spoken about due to emotional involvement or other stress, that friend could remind you of what was said, so that any decision moving forward could be an informed one?

There will be only one chance to get this right, there are no second chances.

atb

dave

User

Posted 15 Apr 2015 at 22:45

You could always request to record the consultation...ive heard of others doing this.

Regarding nerve sparing...This was part of the reason I was hammering home the need for a very experienced surgeon. It can be a very difficult operation to remove the prostate and leave the nerve bundles intact.

Just out interest was the surgeon Mr N O

Cheers

Bri

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Posted 15 Apr 2015 at 23:30

If they didn't actually mention having to do non-nerve sparing, I would assume they are hoping to leave both bundles intact Steph - something to check with the surgeon when you next see him / her. Usually, they would be very careful to explain that the nerves are going to have to go - if nothing was said, and they were talking about viagra as a possible help afterwards, then it doesn't sound to me like they think they will need to do it.

Further to Bri's point, I don't think it is leaving the nerves intact that is such an issue these days - it is managing to get the gland out without damaging the nerves. ED following full nerve sparing is usually down to either bruising or cauterisation which the nerves just never properly recover from. The most skilled surgeons seem able to get the gland out without any collateral damage.

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

User

Posted 16 Apr 2015 at 01:07

Hi Steph,

Just wanted to say that I'm so pleased that things are becoming clearer for you now. I hope this is helping make you feel far more relaxed about things. It sounds like everything is working out for you both.

I do agree with Bri that if you're allowed to record any of Graham's appointments, it really helps. Most smart phones have that facility now. I was allowed to and it really helped. It's surprising how much you miss or forget.

Anyway, hope everything continues to go well.

Steve x

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Posted 16 Apr 2015 at 07:12

Hi, guys - good to hear your perspectives. I think I may be conveying that we're not taking anything in because we are stunned, but it's not quite the case. We ARE stunned, but still receptive - but not quite as receptive as I first thought, after reading your replies.

The thing is, the urologist we saw is not the surgeon who is going to do the operation - we are going to see him at another hospital. That's when we would be asking the more searching questions about exactly what his proposed treatment will be and how he envisages the operation going, all being equal to the MRI results when he gets in there. But after reading your replies, I'm wondering.

We did ask the questions that we thought were relevant to the urologist who is referring on, but Gray has read up on the options, decided on an operation because that's his prefered option with regard to post-op effects and God-forbid further treatment, but we couldn't really ask the fine detail until we see the actual surgeon himself. We tried, but the urologist was very vague because he didn't want to gainsay the operating doctor. Why the two can't communicate is such an anachronism - you'd think we were still at the stage of gentleman's agreement and frock coats, but there we are. We had the toolkit question pamphlet with us but we didn't think it was of too much use, I guess.

We could have had the option of radiotherapy - but Gray didn't want it. We were offered the option of the DaVinci or the laparoscopy. We said that we have read the DaVinci seems to have a better result at getting out all the cancer cells if it is close to or has threatened the capsule, but the urologist said that because the cancer is completely contained, there is no need to consider that and that the results of either are virtually the same.

Since the DaVinci would be at the Christie in Manchester and would also require a wait of unspecified duration, Gray did not want that. He also wanted to be nearer to home. But that was the only choice Gray had not decided about, laparoscopy or DaVinci. Rob did say, when we asked how many ops the surgeons in Preston had performed that they had been doing this for many years. I found out on Googling them that one of the surgeons was an early pioneer of laparoscopic prostatectomy in this country.

One thing I am concerned about, though, is that the DaVinci seems to have a better recovery of other functions. Your collective words of warning have woken me up a bit and I'll be talking to Gray this morning - if there is a chance that the DaVinci will be better for him post op and prognosis, then we at least can wait a short time, but I felt at the time that we were being subtly steered in the direction of the laparoscopy. How they put it was, "Well, we know that Preston will be getting you in and getting it done, they have a certain number of weeks from referral to blah blah but we don't know about Manchester's targets or their waiting time ..." Come to think - don't all hospitals have to aim for the same treatment time from referral?

That's a great idea to record the meeting - will be doing that one. And taking the toolkit questions and all the others. And I'll be running the answers past y'all. But before that, I have just had a quick look at the Christie - I'm going to be speaking to Graham. I think he needs to think this one through more carefully.

Cheers guys.

Edited by member 16 Apr 2015 at 07:43 | Reason: Not specified

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Posted 16 Apr 2015 at 08:08

The concept that Da Vinci is better than LRP or open RP in terms of side effects is not borne out by data, more of a marketing thing I think. Perhaps a bit of 'newer must be better'? Looking at members here, more of those that had problems later seem to have been DV patients than others. My OH opted for open RP because his particular surgeon advised that in our case, it would be the best option.

Edited by member 16 Apr 2015 at 08:08 | Reason: Not specified

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

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Posted 16 Apr 2015 at 09:23

The voice of reason - thanks, Lyn. I actually thought that the daVinci guys had better outcomes! Better try to find those posts. Oh, and Bri - no it wasn't that one!

User

Posted 16 Apr 2015 at 09:42

Steph I have refrained from posting on your conversation for a while now as others have been much more able to deal with your issues. Now that you know Gray is almost certainly curable take Dave's advice ..and that of everyone else trying to help you it is time to compartmentalise and prioritise. Record conversations or take someone who can make notes at the next critical meetings.

Then think of your compartments ..ie

Surgery...which type and what are your expectations from the choice you go with? Which hospital and which surgeon.?

Pre surgery things to do to improve results and minimise downstream issues.

After surgery and whatever that might entail like continence, EF and penile rehabilitation etc.

What you can do to help through all of the above without taking total ownership of what is uniquely Gray's cancer. He needs to have control and you can help by giving generalistic support.

Let Gray decide what his priorities are out of the options living, continence, EF etc. And make sure he can tell his chosen surgeon those things. Sometimes things change once the surgeon is in and knowing Gray's priorities will mean he can carry on with surgery knowing he is following your wishes.

Finally take a step back and say to yourself that neither of you had any part in the fate of Gray having PCa but then think yourselves very blessed to have these options as others have no choices.

I really hope that in time you will be able to look back on what has clearly been a very distressing and traumatic time for you and know you got through it all and both SURVIVED.

best wishes

User

Posted 16 Apr 2015 at 11:44

Steph,

When it was clear I had made my decision as to what treatment route I wanted to take ie RT or RP, I was referred to a hospital and very experienced surgeon who specialises in and also trains other surgeons in robotic techniques...

He also advises NICE on the subject..

Although I did not specifically ask for robotic assisted surgery I was happy to go along with it under this particular surgeon as his track record looked to be very good as far as I could tell....

During my pre op consultation with him he explained that with da Vinci surgery he was able to have much better vision of the operating site with less blood loss and more precise movements of the instruments used in order to perform the delicate movements required for a successfully op.

Having said all that to coin a phrase, " he would say that wouldn't he" as this is the discipline he specialises in!

When I asked about possible nerve sparing he told me that he would make that decision " when he got in there" his primary objective was to save my life but he would save nerves if he could... ( he did save my nerves on one side only )

Recovery of continence he told me was also very individual to each person depending on how much tissue had to be removed and also the condition of the external sphincter muscle and associated pelvic floor muscles both before and after surgery......

He was not able to predict one way or the other how swiftly my return to continence would occur other than to say " some are dry within weeks, others within months, and most patients are dry within a year. Some may take 18 months or even 2 years but they are very much in the minority, and we can help those that have ongoing problems after that if necessary.

As others have pointed out, I doubt there is any difference in the eventual overall outcome whatever procedure method you go for.

I would not wish to influence you in any way in what decisions you make

This is just a quick personal summary of my pre op consultation with that particular surgeon....Others may differ in how they explain things, and may well hold different views / opinions...

Best Wishes
Luther

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Posted 16 Apr 2015 at 11:46

Hi, Mo, and thanks for the reply.

The list of questions is really useful and I will be adding them on.

I wish Gray would decide on his priorities - in fact, I wish Gray would grasp the sodding nettle, but he is relying on my information to make his decisions and there is only so much information I can gather at any one time. So I'm adding-in the info I'm turning up bit by bit up and he's changing his mind accordingly and to be honest, I'm pi***d off, tearful, feeling hugely responsible and very alone.

When I had cancer there was no choice in treatment for me - it was radiotherapy or nowt (Non-Hodgkin's Lymphoma of the type I had didn't respond to anything else). But in my head I refused to be in the 'cancer club' and dealt with it my way. Gray was witness to my fight and is reinterpreting my way as his - whether he's right or wrong I don't know, but what it means is he only reads a bit of what he thinks he needs to and then charges ahead.

After reading the latest replies I've spoken to him this morning about the different options and some of the reasons why you choose them (I can't remember them all), spoken to Christie's on his behalf with a list of his questions (he's too busy today), the Christie nurse advised me for us to see an oncologist to make an even more informed choice - I forgot we hadn't been offered a consultation because we are being "fast-tracked" - which results in being railroaded, told Gray of the potential wait for the daVinci referral (Christie's again), and on and so on - and he's now pi**** off with me because he'd made up his mind (based largely on my emerging understanding) and now I've thrown another spanner of choice into the works.

I can't win. He says he doesn't like choice and just wants to get it done. I just don't know what the hell to do. Do I just shut my mouth whilst he decides to charge ahead with the laparosopy because it's what he wants and he doesn't want to think anymore, or do I try to be the voice of reason and try to get him to see an oncologist or at least look at the other f**** options? He just doesn't want to face it head on, but rather deal with what comes along when it comes. What do I do? I honestly don't know.

Edited by member 16 Apr 2015 at 11:47 | Reason: Not specified

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Posted 16 Apr 2015 at 11:53

Thanks for that, Luther. I think I'll copy some of the replies and print them for Graham to read. He won't post on this site at the moment, so I'm trying to work out whether to try to encourage him to take ownership of this f*** thing, or just shut the f up and let him do what he wants. I really am at a loss. Actually, I don't want to be responsible for persuading him one way or the other - it's just too big for me.

Edited by member 16 Apr 2015 at 11:55 | Reason: Not specified

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Posted 16 Apr 2015 at 12:16

Originally Posted by: Online Community Member

Hi, Mo, and thanks for the reply.

The list of questions is really useful and I will be adding them on.

I wish Gray would decide on his priorities Why don't you let him? - in fact, I wish Gray would grasp the sodding nettle, but he is relying on my information to make his decisions and there is only so much information I can gather at any one time. So I'm adding-in the info I'm turning up bit by bit up and he's changing his mind accordingly and to be honest, Not sure that drip feeding information is a good idea, how can anyone make a proper decision when at any stage another snippet of information is introduced that may change your/his mind again? I'm pi***d off, tearful, feeling hugely responsible and very alone.

After reading the latest replies I've spoken to him this morning about the different options and some of the reasons why you choose them (I can't remember them all)

, spoken to Christie's on his behalf with a list of his questions (he's too busy today), This would be laughable were it not for the fact that the consequences which at this stage can so easily be avoided are so serious. If he is too busy today he may not have a tomorrow to worry about? the Christie nurse advised me for us to see an oncologist to make an even more informed choice - I forgot we hadn't been offered a consultation because we are being "fast-tracked" - which results in being railroaded, told Gray of the potential wait for the daVinci referral (Christie's again), and on and so on - and he's now pi**** off with me because he'd made up his mind (based largely on my emerging understanding) and now I've thrown another spanner of choice into the works.

I can't win. No you can't. Maybe there comes a point where you step back and let him get on with this? He says he doesn't like choice and just wants to get it done. I just don't know what the hell to do. Do I just shut my mouth whilst he decides to charge ahead with the laparosopy because it's what he wants and he doesn't want to think anymore, or do I try to be the voice of reason and try to get him to see an oncologist or at least look at the other f**** options? He just doesn't want to face it head on, but rather deal with what comes along when it comes. What do I do? I honestly don't know. Let him decide, and then deal with his decision perhaps?

The old adage of leading a horse to water comes to mind here. He is fortunate, or maybe not, to have you doing so much for him, but maybe if you did not spoon feed him and gave him control he might grasp the nettle as you put it?

I wish you well with this problem.

dave

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Posted 16 Apr 2015 at 12:57

Edited by member 17 Apr 2015 at 09:56 | Reason: Not specified

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Posted 16 Apr 2015 at 12:58

Dave,

I wish Gray would decide on his priorities Why don't you let him? I am doing. It sounds like you think I'm not letting him make up his mind. He asks me what I think and why. He's too frightened to dive into the information and I keep getting the message through other users on this site that he needs to make informed choices.

Not sure that drip feeding information is a good idea, how can anyone make a proper decision when at any stage another snippet of information is introduced that may change your/his mind again? I know. I'm not deliberately drip feeding him. He won't look on the website, won't join the conversation - and I do have some vested interest in this, I do care about him and I do understand how fearful he is. I'm not "giving him snippets of information" on purpose, I'm not that manipulative. I'm trying to give him the information as he wants it, I can only tell him what I've managed to find out at any one time but I'm getting tired.

spoken to Christie's on his behalf with a list of his questions (he's too busy today), This would be laughable were it not for the fact that the consequences which at this stage can so easily be avoided are so serious. If he is too busy today he may not have a tomorrow to worry about? You would be funny if you weren't so sarcastic. I KNOW!!!

No you can't. Maybe there comes a point where you step back and let him get on with this? There is but I don't want to just leave him to flounder. It's a delicate balance, support and interference, stepping back and not supporting, especially with someone you love who is feeling frightened and alone. But this is the point I'm reaching.

Let him decide, and then deal with his decision perhaps? thanks - I wish I'd thought of that. Not. I've been married to him going on 20 years - I know him. He'll just take the first option offered by the professionals without even looking into alternative choices - that was precisely what he was doing until I looked on this site this morning and found I was being urged for us to look at different treatment options. I was "letting" him decide - I always have, I'm not puppeting him, for god's sake, but I'm trying to do my best for and with him. He had decided - until this morning when I found I was being told again and again to get the information, research the doctors, look at the options, see an oncologist, find out what treatments might be ....

I resent the term 'spoon-feeding' him. That's both inaccurate and unfair, as is the statement that I need to give him control.

User

Posted 16 Apr 2015 at 16:03

Hello steph,

I am sorry and it is unfortunate that you seem to have taken offence to my well meant comments. But I understand your reaction. My intention was to put some ideas up for consideration. It is difficult to convey all meaning with the typed word. A new phrase or way of presenting the same issue may resonate with someone and get a favourable reaction?

As I said at the end of the post, I do wish you well with this problem.

atb

dave

User

Posted 16 Apr 2015 at 23:05

Hi Steph,

I understand that things at the moment are stressful and seem overwhelming , choices of treatment and so many voices giving advice it can all be sometimes too much to take in. So my advice would be to sit back and take the time to sift through everything that you have read and heard and then you can relay it back to Graham . Lots of lovely people have given you such good advice , people who have been there and got the T shirt .

Graham is and I stress IS in the cure camp so you have time to come to the right choice, so maybe at the moment he is confused and bewildered by all of the different options that you are mentioning. Yes life and Men can be infuriating and wouldn't most of us ladies like to wring their necks at some point in our relationships. Of course our men would at some point feel exactly the same about us too, as you say Graham has supported you with a serious diagnosis so now it is time for you to give back .

A dx of pca is scary but please remember that Grahams case is curable some of us are not so lucky.

I have been wondering what TG would have answered to your recent posts, you can look him up we affectionatly refer to him as TG . Top Gun, he passed last year , he always managed to give a voice of reason , I would imagine he would have said something like . Be thankful for Grahams prognosis, be thankful for not having the prognosis for many on here . Keep soldering on and most importantly LIFE IS FOR LIVING.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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Posted 17 Apr 2015 at 07:38

Hi, Julie - and thank you. I'm going to take your sound advice. Gray has the toolkit and I've told him all that has been said to me on this site, so we will be doing just that. And you are so gracious; I feel so heart-sore for you and Trev; I wish you both could live free of fear and doubt and uncertainty in health and peace, I truly do. It really hurts to read the struggles of everyone on here - it's cruel.

I wish I could tell you how your words "it's time to give back" sting - if only you knew; my entire life has been spent giving forwards! I have tried in every way I am capable to make Gray's life as free and as joyful as I can as he has for me, and we have both worked in our own ways in different fields to make the lives of others a better place for them to be yet we find ourselves, in our 60s, in such a precarious position. I am quite certain that there are many others on this site like yourself who know exactly how I feel.

I can see that I need to find some way of support for myself in this awful isolation - I can't risk another day like yesterday where I ended up feeling so desolate. I realise that others comment from the perspective of their own experience but I can't run that gauntlet - I'm not strong enough right now.

I won't be returning to the site since I realise I am too fragile, but I do thank all who have given freely of their time and advice to me on here. I have found it invaluable. I will be remembering each of you in my prayers.

Steph.

User

Posted 17 Apr 2015 at 09:24

Stressful time for you both.

I do understand how you feel right now, the fragility etc.

Perhaps you will feel better after a break from us all.

We do our best to offer advice but there are many of us,in different situations with the same disease, so we each view and give our advice according to our own perspective.

I'm sure there was no offence intended in the post that caused you distress. More of a determination to show your posts from an outsider's point of view perhaps.
After all, we can only experience our own griefs and sorrows. We cannot live them for another person because we are all different and deal with our situations differently. Some of us are stronger than others. Some gain that strength but at a slower rate.

When you are ready to come back to us then please feel free to do so.

Never reach the stage where you feel you have nowhere to turn because it wouldn't be true. You have us !

There will still be occasions when you want to run something passed somebody so please run it passed us.

Good luck to both you and Graham. It's good that you have each other, but sometimes, just sometimes, it helps if there is another person you can talk to - and that's us

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

User

Posted 17 Apr 2015 at 10:17

Steph

Edited by member 18 Apr 2015 at 17:10 | Reason: Not specified

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