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How to stop feeling devastated?

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User
Posted 24 Mar 2015 at 07:27

Hello. We went for my husband's results yesterday and found out he has prostate cancer - a Gleason score of 4+3. We now will be waiting for the scan appointments and I am utterly devastated. I think my lovely, gentle husband is in shock - not really taken in he actually has cancer (he was quite convinced there would be nothing there, and I just agreed with him because I did too) and when the nurse told us it was cancer, I felt a terror rip through me that is difficult to describe. I don't show him how grief-stricken I feel - I don't want to pull him down especially since we don't know yet what we are dealing with, but I am so desperately sorrowful for him, for me and for us. 

He is genuinely the most gentle, deep-thinking and kindly man I have ever met and he has had such a hard, hard time. We have had to live a complete nightmare from time to time since we married 18 years ago and for the last few months we have felt so much more peace. I cannot get my head or my heart around what such a good and kind man has had to endure, and I am so frightened, I feel constantly sick. I am good at hiding it, but it is so lonely even though we talk about everything; right now I am matching how I respond to his mood, where he's at. As he put it, he has a fight on his hands and he's up for it; I'm not going to do anything to stall that.

The nurse told us not to bother with altering his diet or anything and he is such a pragmatist, he won't - he'll just pooh-pooh it, but I've just ordered a couple of books from Amazon by Jane Palmer (by coincidence reviewed by a man, who I later discovered on this site, who has beaten a bad prognosis for 10 years) and she says to cut out dairy - my husband eats dairy none-stop, so I don't know what to do ... sorry, I'm rambling. Just so afraid.

User
Posted 25 Mar 2015 at 14:05

Dear All of You,

I've just discovered that I have a load of responses on my post - I've only just discovered how to find the bloody thing - so I’m going to try and tell you what your kindness has meant to me.

Since finding out the diagnosis my whole abdomen felt like it was in a vice made of vomit. The terror just sat screaming, filling up my chest, stopped at my throat by the spasm of my throat muscles. I was permanently stuck in the moment that a dum-dum bullet of pure terror and despair exploded inside me.

My mind was filled with the horror of what was going to happen to my beautiful best friend in the end. My heart was bursting from the despair and fear, for him and for us. And over and over thoughts flashed in about how snappish I could and have been over the years, and with no real reason because the truth is, Graham has not a nasty bone in his body. Sure he can be as infuriating as everyone else, but his kindness, patience and self-control have never wavered. He is my rock – and I’m his spark, but sometimes I am a bit too fiery. One thing I do know, one thing that does bring me some sense of perspective in all this self-flagellation and anguish is that our love has only continued to grow and deepen through all the adversity – and there has been some, let me tell you!

I had no idea anyone else had replied other than Steve and Georgina in messages, God bless you both, so it was with utter amazement, when I managed to find my post again I find all these replies from people I’ve never met who just want to send wave after wave of support, encouragement and love our way. We have been so isolated for so long (a long and almost unbelievable story which I won’t bore you all with), the effect of such generosity has been outside of anything I’ve ever experienced and unbelievable to me. But I want to try and explain what each of you, all added into one uplifting voice, has done for me in my time of desperation.

Last night found me searching the internet for ways to commit suicide with a modicum of painlessness and with certainty. Because I decided that when the time comes – whenever that is, I cannot watch Graham suffer pain and crushing indignity and then stay behind without him. I simply cannot live without my other heart beating by my side.

I discovered information on how to search the Dark Net, how to find and download the information and how to find dependable sites. I knew it will take me many weeks or months to understand it all but by the time we need it, Graham, with full knowledge and by his own hand, and I can slip our skins together, in the peace of knowing that the other isn’t left to suffer life bereft and that we will take the final journey together into wherever it is we are going.

That sorted, I realised that I couldn’t cope with the overwhelming grief and rang the Samaritans. The torrent of anguish that poured out was a tsunami; it engulfed me. But at the end of it, although the panic and the terror remained, I was spent enough to face Graham with a smile, however wan, and with calm.

And then, today, I read all your replies, felt all your hands reaching out, for the first time.

As I read each of your responses, and wept and wept, the vice around my guts and my heart started to slacken, the silent scream of panic and terror began to subside; the inside of my head slowed from spin cycle to tumble dry.

Over the next couple of hours I put on some makeup, took the dogs out in the beautiful spring weather and was able to breathe. From waking up at 3 in the morning each morning since, and living the waking hours through the silent scream of terror, I feel … wobbly but in control; the anxiety has subsided and slipped into the background. But standing behind that is a great big wall of knowing that, actually, it will be ok, whatever it is; it will be doable and that for once, even though I can’t lean on Gray for a change, I’m not alone.

So “thank you” doesn’t quite say what I want to say to you generous, kind and loving people whom I’ve never met but will always be grateful to and for. But it’s all I’ve got. So, from the bottom of my heart, thank you.

User
Posted 26 Mar 2015 at 08:32

Phone call yesterday: bone scan this Friday, MRI Sunday. Rob the calm, pragmatic and reassuring oncology nurse is going to marshal the results as fast as he can (they have a system of nagging the radiologists, apparently) and get the results to the consultant for this Tuesday, in front of the danglies’ team for Thursday with an appointment to see the consultant the following Tuesday, if the nagging works at optimum

Rob says that the ‘grumbly’ feeling in Graham’s abdomen since the biopsy – without wanting to be patronising – is very likely to be anxiety related rather than anything more sinister. Rob says that Graham’s wanting to wee more over the past couple of years can be just as much from the aging process as the Gleason 7. (What a f**** name for it – Glea-son. Where’s the glee?) Rob says that this waiting is the worst time of the lot – he knows, he’s been through it. Rob says that there will be lots of options for treatment, so get to understand them because we have choices. Rob says, Rob says …

Calm, calm, sick-sick calm. It’s my new waltz. Felt calm at the phone call, calm all evening; woke up at 3 am and felt sick, awoke at 6 o’clock and felt sick – then found even more people had written to me … and started to calm down again. What magic is this?

I should know, being a psychotherapist would you believe, long accustomed to ‘the process’, as we call it in the trade. It’s a euphemism for allowing ourselves to wade through a swamp of emotional s*** in order to find the blockage in the sewer, shovelling and smelling it until it starts to flow again rather than trying to ignore that there’s a blockage whilst the sewerage starts to build. The magic lies in the presence of another willing to wade through it with you and let you know you are a) not alone and b) not drowning and c) not dead yet. And honestly? I’m not at all bothered about what comes after c) – we've got some lovely characters waiting to greet us. I’m just sad we’ll lose the scent and the pleasure and comfort of this skin on this skin. 

I’d forgotten how the magic has worked for me in the past. You have reminded me. I’m shovelling, I’m not alone – you are there. I haven’t got the energy to reply to each of you individually, but I will, especially when my hands stop shaking. But please know that again, this morning, to find a few more people had lent their time, energy and voices to a chorus of kindness has brought the six o’clock beat back from ‘sick’ to ‘calm’.  Thank you. x

User
Posted 28 Mar 2015 at 10:32

Hi Step,

It's not rambling, it's a chance of sharing what you are feeling and what's happening in your life.  I find it really helps me to get things off my chest and I feel much better afterwards, especially with the wonderful support everyone here provides.  Whatever dark place you find yourself in, you are never alone.

I expect Graham now knows what it's like to be a sandwich filling, that's how best I would describe a bone scan.  The scanner lowered itself even further once it cleared my head to maintain the same distance from my body.  I thought to myself if it raises again when it reaches my stomach I will be most offended!  When I was given the letter about the scan, I was told it could last anything up to an hour.  When I walked into the scanner room, the nurse looked me up and down and said "you should only take 30 minutes" (probably due to me being only 5' 6").  When I got up from the scanner bed I said to the nurse that I bet they booked all the shorter people in on a Friday (it was a Friday afternoon and the first day of last year's World Cup in June) so they can scan their quota of patients but go home sooner because they hadn't taken as long to complete!  She said she hadn't thought of that but thought was a great idea. When I reached the waiting room and told my wife, she asked the question "Has anyone measured you yet?".  I thought about saying "So long it isn't the undertaker, I don't mind" but I didn't, fortunately, as I'm sure she wouldn't have shared my sense of humour at that point.

Anyway, I hope the MRI goes well for Graham.

Thinking of you both.

Steve x

 

User
Posted 24 Mar 2015 at 11:28

Steph. So sorry that you and your OH are in such a desperate feeling position at present. The waiting to see what you are really up against is the hardest I think. Unfortunately this cannot really be hurried up too much and we have to survive the waiting the best way we can. My husband was also diagnosed with pca in December with a gleason 4 + 3. Do you have any other details as many on this site will be able to discuss your likely options. Hopefully the Cancer is contained to the prostate and/or nearby area and if so surgery may be an option as it was for my OH. If not many treatments are available and many on this site with advanced disease are bravely living quite well with the disease. I know you will find lots of support and information on this site. In the meantime try to take it easy by walking your dogs and doing some normal things together . All will do revealed in time and you will get through it together. cheers Georgina.

User
Posted 24 Mar 2015 at 13:16

Steph

15 Months ago I was exactly where you and your OH are now, I too was expecting a negative result. I have had a few issues along the way but 11 months post op life is almost back to normal, PSA is undetectable. I know the next few weeks will not be easy, coming to terms with the situation and waiting for results, but stay positive.

Thanks Chris

 

User
Posted 24 Mar 2015 at 13:25
Hi Steph, sorry that you find yourself here but you will receive amazing support from the people here. Have a look at my profile - I hope that it will encourage you

Arthur

User
Posted 24 Mar 2015 at 15:18

I would just like to echo what some of the others have said Steph, firstly welcome although like the rest of us this is not a club that you wanted to join.

Your words reminded me of my own reaction when Trevor was 1st diagnosed all of that fear and terror the sickness in the pit of your stomach  and of course the why us thought. Our own first consultation with the Oncologist was a pretty for gone conclusion and even though I knew what he was going to say before he said it, it still felt like the end of the world.

We are fairly similar to Paul IE not in the cure camp and it will be 2 years in May since dx. So even with the worst of dx there are many treatments that can and do extend lives. I agree with Paul that your OH stats seem promising (I know that's a weird thing to say) but more than likely you will be in the cure camp. There are so many options that yes I also advise  getting the tool kit. It does help to have a head start when you next visit the Onc.

The forum is a great place for advice , a chat, and a sense of support.

Keep posting .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Mar 2015 at 18:30
Hi Steph

When I read your opening post it brought back memories when my wife and I were given the same news - that I had PCa. That was back in 2012. So I know exactly how you will both be feeling at the moment.

Our forum friends have already offered you some good advice so I won't repeat it. I just want you to know you are not alone. Others on this forum have travelled a similar path and understand all the emotions involved.

On the day I found out I hardly slept a wink that night. All I knew was that I had PCa and then thought the worst. However, after various other tests it transpired the PCa was considered to be non-aggressive. So still PCa but not as bad as I originally thought.

I opted for an op to remove the prostate and here I am still alive and generally quite well. I am not advocating what treatment path your other half should take but just trying to give you some hope.

You did the right thing joining this forum. There are some wonderful and kind people here and the other women on the forum will be able to relate to your situation.

User
Posted 24 Mar 2015 at 18:36

Steph,

It looks like your hubby and I have similar "scores on the doors".  Check out my profile. I hope it will give you both some comfort that, 2 years on from dx, things can be good.

Others have mentioned the PCUK guides and Jane Plant books. I would also recommend:

"Lifestyle after cancer  - the facts" by Professor Robert Thomas.

and when you're ready:

"Dr Patrick Walsh's Guide to Surviving Prosteate Cancer"

both of which have helped give myself and my partner a sense of control over things. I wish you well.

flexi

User
Posted 25 Mar 2015 at 15:24
Steph,

What an incredible, heartfelt post. I'm so pleased that we have been able to help in some way. I'm sure everyone here will feel the same way.

Keep posting, I think you have an awful lot you can offer to this site which will help others as well as yourself and your husband.

Best wishes,

Steve

User
Posted 25 Mar 2015 at 18:08

Steph that was such a heartfelt post and I am so glad that you have found out what a pretty smashing bunch we are.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif In the early days I felt exactly the same as you are feeling know and finding the forum really was like a light at the end of a very dark tunnel. Believe it or not when things don't seem quite as dark for you and I know this is hard to imagine but I promise you will feel better able to cope , we often describe ourselves as being on a journey and it is a journey that each one of us on this forum is travelling, some with a better diagnosis heading towards a cure and others well not so easy a journey but still walking beside each other every day.

No one in life can imagine what you are feeling at this moment except for others who have walked and are walking the same path. I often end my posts to others by saying stay strong because the one thing that you need is strength in mind and body and when you are feeling weak we are all here to help you back up.

If you click on peoples avatars (that's our ugly mugs)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif you will see there Bios telling just about everything from diagnosis to what is happening today. OK mine is not as up to date as it should be but I am working on it. You can check out people who have posted for you. I would say check out George H he has just celebrated 10 years after a pretty dire diagnosis. I have everything crossed that Graham will be in the cure camp and with your stats so far I think there is a very good chance. Caught early there are very good treatments and prognosis.

So as I say many times Stay Strong and keep posting , lean on us when you need to.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Mar 2015 at 21:16

Steph, there are so many kind supportive people here and many have responded to you. I am afraid that it isn't really my style to be fluffy and I do think that your imagination is running away with you. I recognise it because I have a tendency towards the catastrophist myself.

Based on your stats so far, there is every chance that your much loved man is going to be offered a treatment that leads to full remission and this terrible time will become simply another challenge that you faced and overcame together. My husband is now more than 5 years post-diagnosis and getting on with his life - there is no reason to think that he is not cured.

Our dear friend R is 8 years post-op and fully recovered.

My dad is 13 years post op and although the cancer has come back recently, it is so tiny that he is simply keeping an eye on his PSA.

A vivid imagination is useful if you are a novelist or film maker but not so great when it causes you unnecessary pain & distress. There again, if you are a catastrophist, imagining the worst is simply the route to working out a coping strategy and has stood me in good stead over the years.

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

User
Posted 25 Mar 2015 at 22:04
Hi Steph and welcome

That was a very powerful post, I am only glad to hear you found some help during the worst of the anxiety and that you also know that we are here too. Every single person here understands that awful feeling. In our case we got told, spread to bones, Gleason 5+5 and you can imagine our world fell apart. Only it didn't, my husband was an amazing oasis of calm, as was I outwardly. Inside and at night, I was a quivering wreck. Fast forward more than four years and we are both still here, hubby is still an oasis of clam and me, well I usually am too these days. These four and a bit years have been frightening and wonderful im equal measure. We are closer than ever and have a great relationship. Our girls visit often and are making the most of having their beloved daddy around. We hope to go on like this for many years yet. It takes time and knowledge to understand the illness. The best advice I read here is to find out from reliable sources the true picture, the toolkit is excellent.

One other thingI want to say is that you are free to pick up the phone and call macmillan or the charity and speak to qualified nurses, who will advise and help you. There should also be a specialist nurse at the hospital who should be assigned to you, you can call them and discuss the diagnosis too. At the moment, as far as anyone knows, your OH is in the cure camp. Once the scans are done you will be fully informed about this and decisions about next steps will need to be made.

Please let us know how things go, my fingers are crossed for a good outcome.

Best wishes

Allison

User
Posted 27 Mar 2015 at 08:59

Thank you all so much. Rob's voice, for Graham, is the calm, reassuring centre at the moment. Yesterday, when we were walking the dogs he was able to say that it's not the test that will make him feel terrified - it's going for the results. Then he'll be really anxious. i asked him what he thought was so terrifying and he managed to get it out that it might be the worst thing in the world and that he had 6 months to live. 

I was able to say, quite calmly, "well, actually, it's not quite like that," and all the wonderful words of encouragement and all the factual stories came together giving me the ability to quietly explain how it actually is - that the worst-case scenario might mean 10 years, and that if the disease is rampant. I was able to tell him about curative and containing treatments and that life may be different but it will be better different, in some strange way - according to you wonderful people.

The anxiety just left him. He visibly slackened-off and his face stopped being so tight. After we talked and I told him of some of the stories you guys had shared with me, he decided to read the information in the booklet Rob had given to us and familiarise himself with what might be said at the consultant's appointment.

Bit by bit I - we  are taking heart, Bri, and I now know you are there Steve and all you generous people who have touched me.

Bone scan today - one more step forward.

Thank you without limit. 

User
Posted 28 Mar 2015 at 09:32

I think he might surprise you and you will find that he copes with all this much better than you.

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

User
Posted 30 Mar 2015 at 22:27

Thanks, Luther.

I know no-one can say any more than they have, but I have no-one else to talk to, or confide in so this is just a place to 'speak'. I cannot show Graham how I am really feeling - I can't impinge upon his own fears and all I can do is bolster his hope and belief that it will all be ok and whatever the case, we'll manage. I've been trying to make plans on how to care for him post-op and all sorts. I just can't stop my mind from bolting and I can't call the Samaritans because he's at home most of the time, so just to fling out some of the pressure and to know that it's heard is all I've got right now - and I'm grateful for it.

I saw your profile - I am pleased for you, I really am. Please God this is what they say - not as bad as you think it will be, but thank you so much for just saying you're there. It helps, it all helps.

User
Posted 31 Mar 2015 at 00:28

Steph, ramble away but then use some of your therapist skills to talk yourself back down. In the calm light of a few weeks or months down the line, you will realise that this initial panic and over-interpreting every tiny thing was just a coping strategy. Graham looks older becasue he is older, he is probably lethargic because he has been getting up for all those night time wees, there are all sorts of rational explanations for the things you are now inspecting in the tiniest details. It is extremely unlikely that any of these things are to do with his cancer; as far as you know, that is still a tiny (and I do mean tiny) cluster of cells which is in its earliest stage of differentiation and least aggressive form. The fact is that many members here diagnosed at the very late stages have absolutely no symptoms so it is rare for someone in Graham's situation to have any. Try to stop worrying about the things that are probably not applicable and instead set your mind to the things that you can and will have to deal with.

I worry that you are imagining the treatment as much more debilitating than it is. Comments about 'after four weeks you might be able to do some online stuff' for example. Some facts about after treatment for you to focus on:
- if he has open surgery, his sick note might be for 8-12 weeks but it depends on what kind of work he does. He is likey to be out of hospital in 3 - 4 days and they will expect him to be up and walking round the day after the op. My husband took it easy to begin with but was dealing with work emails & calls from about week 4 and back at work full time in week 12 (delayed only because he had to wait for his car insurer to agree to him driving)
- if he has robotic or keyhole surgery, he may only be in hospital for one night and most men are back at work within 6 weeks
- if he has radiotherapy, he will probably be able to continue as normal throughout, just rearranging his day slightly to allow for the appointments and maybe for an afternoon nap. My husband had his RT every morning on his way to work, worked all day, went to the gym on the way home, continued with his rugby and with our regular dance dates! He did a couple of times come home early for a nap or a quick kip at his desk.
- not sure why Rob the nurse has already discounted brachytherapy for you but if it does turn out to be an option, is for most men even less intrusive that the other options.
- it is possible that once all the scores are in, Graham decides (with your support) to go for active surveillance at least to begin with. This would give him time to get his head round the diagnosis and begin to assess how he feels about the lifestyle changes and possible side effects of wheichever options are available to him - there will probably be no need to rush into a decision. The best bit of advice we had from our urologist was to go away for a nice holiday, maybe enjoy the summer and then deal with it in the autumn. John didn't take this advice but afterwards we both wished he had.

Generally speaking, with your ME, I wouldn't worry too much about how you are going to look after him. He will be pretty self-sufficient fairly quickly.

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

User
Posted 31 Mar 2015 at 09:15

The builder's house is usually the one that's falling down, the plumber's house leaks and the cobblers kids go to school with holes in the soles of their shoes. !

A therapist has it hardest of all I expect, since the other problems above are probably caused by being too busy to do the repairs.
You, on the other hand, are having midnight conversations with yourself and writing the horror story of the century!!

No good telling you to calm down. That's like telling somebody with depression to "snap out of it", not helpful.

The "what ifs" and the "maybes" are going to plague you until you have a definitive answer regarding treatment.

I don't know why your Rob said Brachytherapy wasn't an option but we were told EXACTLY the same thing by our nurse specialist. She also told us that nerve sparing wasn't an option if we chose an op because the cancer had impinged on the nerves.
None of that was exactly what had been decided. It was her interpretation of the results she was seeing on her screen.

By the time John's active surveillance had to end because the PSA had crept up a bit, we were also told by the surgical specialist that Brachytherapy wasn't an option and very sniffily told us we should have taken that option when it had been offered to us the previous year.

We opted to see the radiologist again who expressed surprise at a) what the nurse specialist had told us because the cancer wasn't affecting the seminal nerves and b) she thought John was eminently suitable for Brachy although they didn't do it at our local hospital. She did however refer us on and that new specialist thought John was ideal for it and that was at 73 with PSA of 6.7 and Gleason 3+4.
So, even the surgical consultant was incorrect.

Your own health is dragging you down too remember. Under normal circumstances, if you had a bad day, you'd rest up, and get back to life feeling a bit better.
Not happening because you are expending energy on worrying about Graham and his treatment and the future (or in your darkest hours - the lack of it!!). Seeing things that ARE there, like Grahams fatigue and looking older.
Without this cancer diagnosis hanging over you that situation would still have happened it's just that you would have been more pragmatic about it and put it down to the stress you had already been under, the disturbed nights and the general aging process.

Take a step back. Become a therapist again. How would you treat a patient who presented as you are feeling. What would you tell them.
When those dark thoughts appear again, tell yourself you WILL cope, no matter what.
But honestly, like a lot of members on here, I think you are overthinking it all. Yes it's frightening, but it's definitely doable.

Big breath in, big breath out and tell yourself, this isn't going to beat you.
YOU are going to be the strong one in this if Graham is wobbly when it comes to his health.
YOU are going to be the one to be matter of fact about the treatments and the possible results such as initial incontinence etc.

You will do it, because you have no choice, but you are not much good to Graham if you put yourself in hospital because you've frightened yourself half to death.

Keep posting. We'll keep listening. Keep reading and researching if it helps but do be careful of anecdotal stories on the general web pages.
Especially about magic treatments etc.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Apr 2015 at 11:13

Hi, Sandra – thanks for posting. As I recall, Rob said brachytherapy was not an option because the guy performing it was very choosy about who he operates on – Gleason 6 and under, I think, if I am recollecting correctly. Will have that discussion if and when – I’m not one for taking what they say quite at face value, once I’m up and running!  But from what you say, this diagnosis and treatment is as much of an art as it is a science; there is no firm way or route through treatment, rather than a meld of opinions, which makes it a bit like shadow-boxing. Especially if you don’t have the results of the tests – ours are due in today. So we will be genned-up and ready to do battle, with the knowledge gathered on here especially.  You and your OH sound like you’ve been on a manic roller coaster. 

You’re right about being more phlegmatic about the changes if the diagnosis wasn’t hanging over our heads – I can see that. And in my less anxious hours I can control the wayward thoughts. But yep – “physician heal thyself” doesn’t cut it when the thoughts are in free-fall. It puts me in mind of a bolting horse. The way to stop it if possible is for another rider to come alongside and help slow it down – that’s what I find on here. The kindness and the patient “hang on, wait a minute, just look at this, just think of that” cuts through the mad flight and offers a bit of sanity which can’t be done when one is panicking and terrified. So after being checked in the mad long dash I can take in the words of sanity and wisdom and I do find they are building up a reservoir in strength. Big slow breaths, breathe ... actually, I guess the trick is to keep on breathing at all! But oh, thank you thank you all. 

And you’re right – I am overwhelmed; I can’t be my own therapist at the moment because I’m in territory that is new and terrifying. Slowly I am getting a handle, but I’ve got to say, without the help and support of all you fabulous folk on here I would not have coped as well as I am doing. As the terror subsides I can grab hold of my thoughts again, but I will keep on posting and seeking support; I need it! 

Thanks El for the tip. If it comes to it I’ll have a clue where to get some support. And thanks for the love – I am focusing on my heart to receive it. 

And Chris, of course, for the reminder!

The results go before the danglies’ team today and Rob is going to call us. Don’t know if he’ll give the results over the phone, but at least things are still moving. I suddenly need a wee! 

Love, Light and Power to all. x

User
Posted 02 Apr 2015 at 12:07
Hi Steph,

Fingers crossed and everything else for good results today. Hope they can at least give you an indication of how things are going, just so you can have a more relaxed Easter.

I'm preying that all turns out ok for you and Graham.

Steve x

User
Posted 03 Apr 2015 at 21:22

Alison - sending you love. x

User
Posted 06 Apr 2015 at 11:04

Yorkhull,

thanks for your understanding and compassion. I re-read your post yet again the other day and ordered the toolkit. Gray has read the booklet now and so I don't feel as though I'm pushing him against his will to know, or taking complete control - or bl*** well losing it from terror if I know more, so we're going to go into the next meeting with at least a degree of understanding. The scans so far look positive, but I'm trying to stay cool because they are going for a second opinion from a team in another hospital, and the nurse who gave us the results kind of changed tack half way through the phone call from "it has not spread" to "it looks like it might have reached the outer margin, so they might want to opt for radiotherapy as opposed to anything else". I wish he had been sure of what he was saying before he said it.

I love your balanced view of things, and the diet stuff as well. We are considering the diet changes, but Gray just loves cheese, so at the moment we're aiming to reduce it drastically in the short-term. Wasn't it Groucho who said that giving up smoking won'[t make him live longer, it would just feel like it? Maybe as time goes on we'll manage more Paleo with less red meat.

And I love your positivity; on this site it has such authenticity. From all of the people, fighters and family, it is quite difficult to describe what it means to hear reasoned voices of sanity, with fact and experience to back-up what your saying. Thanks, Paul. 

User
Posted 06 Apr 2015 at 11:07

Arthur, verses 5 and 6 are apt too. [and up to end of verse 11 ]

Stephanie, the first dx throws us all into a panic, which is why having this site helps us all, it helped me when I had nowhere else to find info from, Cancer UK put the phone down on me because we were living in France, now you have to wait to see what the medics are going to do next, when you go to next appointment take a notebook and pen to remember what is said as it could be overwhelming, then take note of what PSA, Gleason and any other tests results are.

God bless,

Chris xxxx

User
Posted 07 Apr 2015 at 22:27

Thanks, Chris. You're not kidding - I must have sounded demented! It must have been a nightmare for you, in France. Could you not get treatment there? Would it be not as good or better than the UK? But how frightening, blimey.

I will take a notebook and pen. Waiting for the toolkit - hope it arrives before the meeting, but I'm already lining up a few questions after reading some profiles on here. Don't feel able to offer any support to others right now because I'm still a bit disorientated and I feel it would be a bit disingenuous, when I'm still wooley.

God bless you and your OH too.

Steph. xx

User
Posted 09 Apr 2015 at 01:29

The urologist is a surgeon so will probably lean towards prostatectomy. But usually a multi-disciplinary team looks at the results before your appointment and the uro will tell you what the MDT felt was available & suitable in your case. He / she may also recommend that you see an oncologist to discuss radiotherapy, brachy, etc.

John managed to get through the whole thing without ever reading anything and he has certainly never looked at this site. It worked for him - I did the research and the worrying, he developed a miraculous capacity to forget all bad news as soon as it was delivered and to wander through treatment, failure, recurrence, more treatment and then success without retaining any important stuff at all. Sometimes it has driven me mad but it has worked for him.

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

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

Xx

Mo

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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User
Posted 24 Mar 2015 at 11:28

Steph. So sorry that you and your OH are in such a desperate feeling position at present. The waiting to see what you are really up against is the hardest I think. Unfortunately this cannot really be hurried up too much and we have to survive the waiting the best way we can. My husband was also diagnosed with pca in December with a gleason 4 + 3. Do you have any other details as many on this site will be able to discuss your likely options. Hopefully the Cancer is contained to the prostate and/or nearby area and if so surgery may be an option as it was for my OH. If not many treatments are available and many on this site with advanced disease are bravely living quite well with the disease. I know you will find lots of support and information on this site. In the meantime try to take it easy by walking your dogs and doing some normal things together . All will do revealed in time and you will get through it together. cheers Georgina.

User
Posted 24 Mar 2015 at 11:57

Thank you, Georgina, for you reply and your kindness. All we know so far is that his Gleason score is 4+3 with a PSA of 4.2 last time it was measured - about a month ago. I don't want to know the other stuff about percentages in this bit or that - I'm too devastated at the moment, and he sure as heck doesn't. I really believed that we had entered a time of peace and even until we got the diagnosis I felt quietly confident it wouldn't be too bad - but this is bad and my trust is shattered to the point of being terrified of scan results but desperate for them. But you're right - we have to carry on as normal, which is how we are tackling this, and whatever happens we will be together.
Thanks again for your supportive kindness, Georgina, it is very appreciated.

User
Posted 24 Mar 2015 at 13:16

Steph

15 Months ago I was exactly where you and your OH are now, I too was expecting a negative result. I have had a few issues along the way but 11 months post op life is almost back to normal, PSA is undetectable. I know the next few weeks will not be easy, coming to terms with the situation and waiting for results, but stay positive.

Thanks Chris

 

User
Posted 24 Mar 2015 at 13:25
Hi Steph, sorry that you find yourself here but you will receive amazing support from the people here. Have a look at my profile - I hope that it will encourage you

Arthur

User
Posted 24 Mar 2015 at 14:23

Sorry to see you here Steph. It sounds as if your hubby has had other problems to deal with and this has come as an additional blow, so much so that you feel justifiably shell shocked and asking what next! Well there are no easy answers here but a lot of support from some great people getting their heads around similar shocks.

Firstly try and get hold of the PCUK Toolkit available from the site and a great start for getting the information you need. I know you don't want to get into the detail but the detail does matter and helps you and us understand what is happening. The info you have provided helps a little but the results of the scans are crucial in determining whether you are in the curable or incurable camp. Either way there are lots of solutions. For instance I am over three years on from an incurable diagnosis and still here and still working. But it could be with your Gleason score and PSA that you may be in the curable camp and this offers a real chance to work at long term solutions. There is a long way to go whatever your situation.

As to diet there is plenty of disagreement about the impact of diet, some on here have supported the Plant non-diary diet others are sceptical that it makes any difference. You may want to search through some of the many diet threads. For me looking at your diet can be a way of taking control of the situation feeling you are doing something! But at a time of stress your hubby needs to be happy with some things he has control over and not having to deal with diet changes he finds unwelcome. I enjoy dairy and continue to have an eclectic diet which I enjoy.

So Steph, there is time to take stock of this. Get the scan results, tell us the details and others will comment and support whatever next steps you choose. Good luck on your journey.

User
Posted 24 Mar 2015 at 14:58

Hi Steph,

A horrible time.  Try and keep the faith.  Your husband's lower PSA figure may mean there may be several treatment options available, unlike myself who had only one option.

Thanks for your PM, I'll reply to that later today.

Keep posting.

Steve

User
Posted 24 Mar 2015 at 15:18

I would just like to echo what some of the others have said Steph, firstly welcome although like the rest of us this is not a club that you wanted to join.

Your words reminded me of my own reaction when Trevor was 1st diagnosed all of that fear and terror the sickness in the pit of your stomach  and of course the why us thought. Our own first consultation with the Oncologist was a pretty for gone conclusion and even though I knew what he was going to say before he said it, it still felt like the end of the world.

We are fairly similar to Paul IE not in the cure camp and it will be 2 years in May since dx. So even with the worst of dx there are many treatments that can and do extend lives. I agree with Paul that your OH stats seem promising (I know that's a weird thing to say) but more than likely you will be in the cure camp. There are so many options that yes I also advise  getting the tool kit. It does help to have a head start when you next visit the Onc.

The forum is a great place for advice , a chat, and a sense of support.

Keep posting .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Mar 2015 at 15:42

Hi without a doubt this is the worst time. You have some scary information but don't have all the information. Once the full results are in the treatment options will be clearer.

In the meantime as others have suggested order or download the toolkit from PCUK this will help to prepare you for the inevitable meetings with the specialists.

Until you know what you are dealing with its difficult to.offer any concrete advice. Suffice to say there are many men on here who are living good quality lives regardless of their dx. Some describe it as adjusting to a new normal. This worried me when I first heard that phrase but I soon came to realise that this new normal can actually be a better normal.

Regarding diet I did cut down my dairy and red meat consumption but as time has passed I have started to revert back to my old ways, which although was reasonably healthy,was not a diet that was 'prostate friendly' but my latest PSA result was good. This was nothing to do with my diet but as a direct result of my treatment. There are many many people who will continue their same lifestyles and come out the other end ok.

Having said all that

Please ask any questions as there is a wealth of experience and knowledge on here.

But always remember you and your OH are not alone with this

Bri

Edited by member 24 Mar 2015 at 15:54  | Reason: Not specified

User
Posted 24 Mar 2015 at 16:20

Hello Steph and partner,

Hopefully he will look in here at some point and take some comfort and hope from what he reads? PCa is not the sentence it may have been only a few years ago, but treatments and options improve all the time.

You have been through a difficult and come through it together to an altogether better place, excellent, look at this issue as just another hurdle to get over together, and together you will make the best of whatever comes your way.

The start of the diagnosis routine is the worst stage as so much is unknown and there is so much to worry about until you start looking at researching treatment options, even though you do not know which ones will apply to you at this time. You could look at it like this, shortly you will get a diagnosis and you will be offered treatment options, and when these options are mentioned it would be good for you both to have an idea of what each option entails, what the potential consequences are of each option and what may best suit yourselves and your lifestyle and projected family longevity. Take a notebook and a pen with you and write down what you can because sometimes the salient points and the important bits can be forgotten due to the emotion of all.

Knowledge really is power and gives some degree of control.

I can understand that you may not wish to know details at this time, it is a shock being diagnosed, but to be blunt, nothing is going away. All these figures, these per'centages and the rate at which anything increases or develops will be significant for you both as time passes and decisions need to be made. Please think again about not wanting to know details. Be sure that this is what you both want to do, and if it is that is your considered choice, so be it.

atb

dave

User
Posted 24 Mar 2015 at 16:34

Hi Steph,

 

Initial diagnosis is a terrible shock, none of us are born with a blueprint to cope with this, and horrible as your feelings are, they are a natural reaction to  your life suddenly feeling very out of control. Remember, you are devastated for your husband but also trying to keep it together for yourself, both massive undertakings. Everyone copes differently, I remember when my partner was diagnosed wanting to go somewhere and just scream to let emotion out and one time I ended up throwing oranges down the garden, I felt like I was going to explode, I have never felt anything like it.

I certainly went down the diet route, my partner didnt want to talk much or know anything about any aspect of the disease so I felt very alone but I tried to take control of what aspects of our lives I could and cooking prostate friendly meals was one way that helped me. My partner also ate a lot of dairy but he did change a lot of his eating habits, it helped that he didnt cook so it was my meals or nothing !

Remember you are not alone, many of us here have felt the same as you and you will be in shock at present and life seems dominated by the diagnosis. Lots of men here have done well so take heart from this. It is good advice to learn all you can about the illness, you will be in a better position to discuss with your medics in an informed way. The PCa specialist nurse are great to chat to and I have found Macmillan are also very good. Look after yourself too. Keep posting, we are all here for you.

 

Fiona x

User
Posted 24 Mar 2015 at 18:30
Hi Steph

When I read your opening post it brought back memories when my wife and I were given the same news - that I had PCa. That was back in 2012. So I know exactly how you will both be feeling at the moment.

Our forum friends have already offered you some good advice so I won't repeat it. I just want you to know you are not alone. Others on this forum have travelled a similar path and understand all the emotions involved.

On the day I found out I hardly slept a wink that night. All I knew was that I had PCa and then thought the worst. However, after various other tests it transpired the PCa was considered to be non-aggressive. So still PCa but not as bad as I originally thought.

I opted for an op to remove the prostate and here I am still alive and generally quite well. I am not advocating what treatment path your other half should take but just trying to give you some hope.

You did the right thing joining this forum. There are some wonderful and kind people here and the other women on the forum will be able to relate to your situation.

User
Posted 24 Mar 2015 at 18:36

Steph,

It looks like your hubby and I have similar "scores on the doors".  Check out my profile. I hope it will give you both some comfort that, 2 years on from dx, things can be good.

Others have mentioned the PCUK guides and Jane Plant books. I would also recommend:

"Lifestyle after cancer  - the facts" by Professor Robert Thomas.

and when you're ready:

"Dr Patrick Walsh's Guide to Surviving Prosteate Cancer"

both of which have helped give myself and my partner a sense of control over things. I wish you well.

flexi

User
Posted 24 Mar 2015 at 19:37

Hi Steph,  In reply to your post title I would say:you are grieving for the future you had imagined for yourselves.  Accept it will be different but it can still be good if not better -weird tho that sounds.   You will appreciate every day and small things that people do.  PCa treatments are improving all the time.  So allow yourself to grieve, shout at the pillow ,speak to a nurse or Samaritan if it helps.  Take inspiration from many who are fighting this alongside you and your husband.  Spoil yourself and him,it helps.  Best wishes to you both,El .

User
Posted 24 Mar 2015 at 19:44

Good advice from Flexi & t'others.

Being a bit slow http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif , it took me a while to realise I was being a muppet not to change the environment in which my cancer was doing so well.

Then luckily Jane Plant was doing a talk fairly near to me. That helped sort myth from facts & I have been non-dairy for over ten years now.

Read the books & then decide but don't fall out over it  !  Takes time to adjust to a recent diagnosis & some men are happy not to change diet. That's fine as all we do here is offer the information & then it's up to the individual.

Just learn to take one step at a time which we have all had to do.

 

User
Posted 24 Mar 2015 at 23:51
Hi Steph

you are getting all the good advice already from the amazing people on this forum.

I just wanted to say Hi and add to the chorus of people telling you that you are not alone, your head will be all over the place right now with more questions than you will ever believe can be answered. So,hard as it sounds, try and step back for a moment and write down the things that come into your mind so that you can tackle them one at a time.

Until you have all the test results in do not try to second guess by immersing yourself in google searches that may not be relevant in your partner's case, just downlaod the toolkit from here and work your way steadily through that and prepare as others have suggested.

Best wishes

xx

Mo

User
Posted 25 Mar 2015 at 09:24

Hello Steph and welcome.

I was pretty certain from the off that my husband had either an enlarged prostate or cancer but in my heart I was convinced it was cancer. He was more pragmatic - let's wait and see.

By the time we went for the results he was also thinking what I was thinking so when the nurse broke the news our attitude was "OK" what next. She even checked that we had understood what she had just said as we appeared so laid back.

Now part of the reason for that attitude was that I had done the research because I want to know what's going on.
There really isn't anything to be gained by the head in the sand approach because you already know what the situation it.
Knowledge is power.
If you haven't researched the cancer how will you know what questions to ask, or understand the treatments on offer.

It is a terrible shock to be given that horrible word. This is my 4th bout of it in 5 years, three of those being my daughter and young grandson and my husband, my niece making the fourth so I do understand your initial feelings.

You will get to grips with it. You already have a lovely relationship with your Gentle Man. If that has any room for improvement then it will during and because of his diagnosis. It definitely brings you closer together.

A lot of people hate the terms "Battling or Fighting" cancer. Cancer is a word, an emotive horrible word which goes back to the days when it meant certain death because there wasn't the knowledge or treatments that there are today.

Thank goodness that's in the past. There are many on here with PSA and Gleasons far higher than your lovely mans and as some of them have already said they are terminal. However, they still live their lives to the full and will continue to do so for as long as they have it.

Your sense of despair and fear is caused by the sudden knowledge when you were certain that life was on the up and nothing was going to come along and spoil it.

If you've both been through hard times then you know that you will pull through together no matter what.

The "Toolkit" is available through the HOME page, then INFORMATION, then OUR PUBLICATIONS. It's downloadable or you can send off for hard copies.

My husband was (is) like yours as far as diet is concerned. He loves his butter etc.. I started small, swapping dairy yoghurt for soya etc, increased the amount of fresh fruit, especially the red ones, substituting soya mince for some of the beef mince in Bolognese etc. He never even noticed and now it's 50/50 and we eat more chicken
I haven't been able to stop this chocolate intake mind you. He calls it medicine!!

I hope I haven't come across as "get on with it". That wasn't my intention but you will need to get proactive on your husband's behalf. These men - well some of them need a bit of a push!!!!

Remember - All knowledge is power. Be sure when you see consultants that you know what you want to query and don't be fobbed off with "this is what you must do".

Research your options so that both you and your lovely man will know that you have chosen the path best suited to you - and not one that a doctor says is best for himself because it makes his stats look good

Best Wishes to you both - we are here if you need us. Please don't despair. You both have many years together yet.
This is a bit of a hiccup

Sandra

Edited by member 25 Mar 2015 at 09:25  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 25 Mar 2015 at 10:48
Steph, Sandra is right. Knowledge is power. I think I was more anxious when we did not know for sure it was Cancer. First an irregularity then biopsy confirmed Cancer gleason 4+3. His psa was always low for his age. I researched a lot and took on board what was discussed on this site and you know I was quite calm by the time he had his surgery.. It was a period of three months in total which in the beginning would have appeared unbearable. Our histology was very positive and gleason was actually downgraded to 3 +4 at surgery so there is sometimes better than expected news. I think not knowing makes us more fearful. For me anyway I pictured the worst case scenario when I was not informed about this Cancer. Reading the posts from those who are not curable but are making the best of the time they have is inspiring. Cheers Georgina

Edited by member 25 Mar 2015 at 10:51  | Reason: Not specified

User
Posted 25 Mar 2015 at 14:05

Dear All of You,

I've just discovered that I have a load of responses on my post - I've only just discovered how to find the bloody thing - so I’m going to try and tell you what your kindness has meant to me.

Since finding out the diagnosis my whole abdomen felt like it was in a vice made of vomit. The terror just sat screaming, filling up my chest, stopped at my throat by the spasm of my throat muscles. I was permanently stuck in the moment that a dum-dum bullet of pure terror and despair exploded inside me.

My mind was filled with the horror of what was going to happen to my beautiful best friend in the end. My heart was bursting from the despair and fear, for him and for us. And over and over thoughts flashed in about how snappish I could and have been over the years, and with no real reason because the truth is, Graham has not a nasty bone in his body. Sure he can be as infuriating as everyone else, but his kindness, patience and self-control have never wavered. He is my rock – and I’m his spark, but sometimes I am a bit too fiery. One thing I do know, one thing that does bring me some sense of perspective in all this self-flagellation and anguish is that our love has only continued to grow and deepen through all the adversity – and there has been some, let me tell you!

I had no idea anyone else had replied other than Steve and Georgina in messages, God bless you both, so it was with utter amazement, when I managed to find my post again I find all these replies from people I’ve never met who just want to send wave after wave of support, encouragement and love our way. We have been so isolated for so long (a long and almost unbelievable story which I won’t bore you all with), the effect of such generosity has been outside of anything I’ve ever experienced and unbelievable to me. But I want to try and explain what each of you, all added into one uplifting voice, has done for me in my time of desperation.

Last night found me searching the internet for ways to commit suicide with a modicum of painlessness and with certainty. Because I decided that when the time comes – whenever that is, I cannot watch Graham suffer pain and crushing indignity and then stay behind without him. I simply cannot live without my other heart beating by my side.

I discovered information on how to search the Dark Net, how to find and download the information and how to find dependable sites. I knew it will take me many weeks or months to understand it all but by the time we need it, Graham, with full knowledge and by his own hand, and I can slip our skins together, in the peace of knowing that the other isn’t left to suffer life bereft and that we will take the final journey together into wherever it is we are going.

That sorted, I realised that I couldn’t cope with the overwhelming grief and rang the Samaritans. The torrent of anguish that poured out was a tsunami; it engulfed me. But at the end of it, although the panic and the terror remained, I was spent enough to face Graham with a smile, however wan, and with calm.

And then, today, I read all your replies, felt all your hands reaching out, for the first time.

As I read each of your responses, and wept and wept, the vice around my guts and my heart started to slacken, the silent scream of panic and terror began to subside; the inside of my head slowed from spin cycle to tumble dry.

Over the next couple of hours I put on some makeup, took the dogs out in the beautiful spring weather and was able to breathe. From waking up at 3 in the morning each morning since, and living the waking hours through the silent scream of terror, I feel … wobbly but in control; the anxiety has subsided and slipped into the background. But standing behind that is a great big wall of knowing that, actually, it will be ok, whatever it is; it will be doable and that for once, even though I can’t lean on Gray for a change, I’m not alone.

So “thank you” doesn’t quite say what I want to say to you generous, kind and loving people whom I’ve never met but will always be grateful to and for. But it’s all I’ve got. So, from the bottom of my heart, thank you.

User
Posted 25 Mar 2015 at 15:24
Steph,

What an incredible, heartfelt post. I'm so pleased that we have been able to help in some way. I'm sure everyone here will feel the same way.

Keep posting, I think you have an awful lot you can offer to this site which will help others as well as yourself and your husband.

Best wishes,

Steve

User
Posted 25 Mar 2015 at 18:08

Steph that was such a heartfelt post and I am so glad that you have found out what a pretty smashing bunch we are.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif In the early days I felt exactly the same as you are feeling know and finding the forum really was like a light at the end of a very dark tunnel. Believe it or not when things don't seem quite as dark for you and I know this is hard to imagine but I promise you will feel better able to cope , we often describe ourselves as being on a journey and it is a journey that each one of us on this forum is travelling, some with a better diagnosis heading towards a cure and others well not so easy a journey but still walking beside each other every day.

No one in life can imagine what you are feeling at this moment except for others who have walked and are walking the same path. I often end my posts to others by saying stay strong because the one thing that you need is strength in mind and body and when you are feeling weak we are all here to help you back up.

If you click on peoples avatars (that's our ugly mugs)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif you will see there Bios telling just about everything from diagnosis to what is happening today. OK mine is not as up to date as it should be but I am working on it. You can check out people who have posted for you. I would say check out George H he has just celebrated 10 years after a pretty dire diagnosis. I have everything crossed that Graham will be in the cure camp and with your stats so far I think there is a very good chance. Caught early there are very good treatments and prognosis.

So as I say many times Stay Strong and keep posting , lean on us when you need to.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Mar 2015 at 18:48

Hi Steph

I get the impression that the cancer is the tip of the iceberg with other things that have been going on.

We are all different - both my OH and I deal with what faces us pragmatically. I was diagnosed in August 2013, G7 but fortunately no spread from the prostate, and eventually had my prostatectomy in April last year. I am impotent, although tablets are starting to help, and have to wear a pad a day for slight incontinence.

For me, all has been worthwhile. I play lots of golf, run around helping my parents and mother-in-law, and am looking forward to lots of travelling when my wife retires next month.

Don't despair - there is much to look forward to. Life is a little different for me, but I live as full a life as I can.

Hopefully, your hubby who you clearly care for deeply, will be in the cure camp. Whatever treatment you choose, there should still be plenty to look forward to. Read all the info available, ensure you choose the treatment that is physically and emotionally right for him, and there should be plenty to look forward to.

Paul

Stay Calm And Carry On.
User
Posted 25 Mar 2015 at 19:26

Dear Steph

I have been reading your posts and did not respond, as everyone else was giving such positive advice that I felt I had nothing to add.

However I should have done.

After reading your last post I feel sorry that I did not respond, as even just knowing that likeminded people are here is a help in itself.

We have all been to 'dark places' when fighting this disease, but thankfully we are not all there at the same time, so can try to help each other.

I realise that you have been through a lot, and many of us have, but I hope that you now can feel a little better and more ready to tackle this damn disease head on!

Once you get the full diagnosis (after scans etc) let us know and there will be lots of people on here who can advise you. It may not be as bad as you fear. Lets wait and see. Not easy though - infact this waiting is the worst bit.

All the best

 

Alison

 

Edited by member 25 Mar 2015 at 19:29  | Reason: Not specified

User
Posted 25 Mar 2015 at 21:16

Steph, there are so many kind supportive people here and many have responded to you. I am afraid that it isn't really my style to be fluffy and I do think that your imagination is running away with you. I recognise it because I have a tendency towards the catastrophist myself.

Based on your stats so far, there is every chance that your much loved man is going to be offered a treatment that leads to full remission and this terrible time will become simply another challenge that you faced and overcame together. My husband is now more than 5 years post-diagnosis and getting on with his life - there is no reason to think that he is not cured.

Our dear friend R is 8 years post-op and fully recovered.

My dad is 13 years post op and although the cancer has come back recently, it is so tiny that he is simply keeping an eye on his PSA.

A vivid imagination is useful if you are a novelist or film maker but not so great when it causes you unnecessary pain & distress. There again, if you are a catastrophist, imagining the worst is simply the route to working out a coping strategy and has stood me in good stead over the years.

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

User
Posted 25 Mar 2015 at 22:04
Hi Steph and welcome

That was a very powerful post, I am only glad to hear you found some help during the worst of the anxiety and that you also know that we are here too. Every single person here understands that awful feeling. In our case we got told, spread to bones, Gleason 5+5 and you can imagine our world fell apart. Only it didn't, my husband was an amazing oasis of calm, as was I outwardly. Inside and at night, I was a quivering wreck. Fast forward more than four years and we are both still here, hubby is still an oasis of clam and me, well I usually am too these days. These four and a bit years have been frightening and wonderful im equal measure. We are closer than ever and have a great relationship. Our girls visit often and are making the most of having their beloved daddy around. We hope to go on like this for many years yet. It takes time and knowledge to understand the illness. The best advice I read here is to find out from reliable sources the true picture, the toolkit is excellent.

One other thingI want to say is that you are free to pick up the phone and call macmillan or the charity and speak to qualified nurses, who will advise and help you. There should also be a specialist nurse at the hospital who should be assigned to you, you can call them and discuss the diagnosis too. At the moment, as far as anyone knows, your OH is in the cure camp. Once the scans are done you will be fully informed about this and decisions about next steps will need to be made.

Please let us know how things go, my fingers are crossed for a good outcome.

Best wishes

Allison

User
Posted 26 Mar 2015 at 07:23

Steph, I've been a member of other sites (non cancer related) and it's always baffled me how people who don't personally know each other can send big hugs if somebody says they got a splinter from gardening etc.

Then everyone gets on the bandwagon and you'd think they'd lost a leg!!

Totally out of proportion to the original post

Now here - here is a different place altogether.

Everyone on here is either a cancer sufferer, their partner, friend etc. We have all seen the result of this disease on our nearest and dearest which is why, when we send a hug or a message of support it's heartfelt and like being enveloped in a big fluffy blanket.

Enjoy that warmth and never again feel that you need to research dark sites. We'd all much rather you came on here and ranted and raved to us and got it off your chest.

Sending a BIG WARM FLUFFY BLANKET your way.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 26 Mar 2015 at 08:32

Phone call yesterday: bone scan this Friday, MRI Sunday. Rob the calm, pragmatic and reassuring oncology nurse is going to marshal the results as fast as he can (they have a system of nagging the radiologists, apparently) and get the results to the consultant for this Tuesday, in front of the danglies’ team for Thursday with an appointment to see the consultant the following Tuesday, if the nagging works at optimum

Rob says that the ‘grumbly’ feeling in Graham’s abdomen since the biopsy – without wanting to be patronising – is very likely to be anxiety related rather than anything more sinister. Rob says that Graham’s wanting to wee more over the past couple of years can be just as much from the aging process as the Gleason 7. (What a f**** name for it – Glea-son. Where’s the glee?) Rob says that this waiting is the worst time of the lot – he knows, he’s been through it. Rob says that there will be lots of options for treatment, so get to understand them because we have choices. Rob says, Rob says …

Calm, calm, sick-sick calm. It’s my new waltz. Felt calm at the phone call, calm all evening; woke up at 3 am and felt sick, awoke at 6 o’clock and felt sick – then found even more people had written to me … and started to calm down again. What magic is this?

I should know, being a psychotherapist would you believe, long accustomed to ‘the process’, as we call it in the trade. It’s a euphemism for allowing ourselves to wade through a swamp of emotional s*** in order to find the blockage in the sewer, shovelling and smelling it until it starts to flow again rather than trying to ignore that there’s a blockage whilst the sewerage starts to build. The magic lies in the presence of another willing to wade through it with you and let you know you are a) not alone and b) not drowning and c) not dead yet. And honestly? I’m not at all bothered about what comes after c) – we've got some lovely characters waiting to greet us. I’m just sad we’ll lose the scent and the pleasure and comfort of this skin on this skin. 

I’d forgotten how the magic has worked for me in the past. You have reminded me. I’m shovelling, I’m not alone – you are there. I haven’t got the energy to reply to each of you individually, but I will, especially when my hands stop shaking. But please know that again, this morning, to find a few more people had lent their time, energy and voices to a chorus of kindness has brought the six o’clock beat back from ‘sick’ to ‘calm’.  Thank you. x

User
Posted 26 Mar 2015 at 10:43

Hi Steph,

Really pleased to hear that it looks as though everything is being sorted quickly with the scan, MRI and the results.  It should put your mind at rest when you know better what's going on.  Fear of the unknown is often worse than knowing what you have to face.

The next week or so could make you feel far better.

Always hear to listen,

Steve x

Edited by member 26 Mar 2015 at 10:44  | Reason: Not specified

User
Posted 26 Mar 2015 at 21:23

x

User
Posted 26 Mar 2015 at 21:50

I think the nurse Rob has given some good advice that is not to dissimilar to what advice has been given on here :)

Take heart in the stories of others. I am classed as high risk. I had a PSA of 22. Had to have surgery followed by RT as the cancer appeared to have been left behind once the prostate was removed. 18 months after the RT finished my PSA is almost undetectable.

It sounds like things are moving for you which is great

Bri

Edited by member 26 Mar 2015 at 21:52  | Reason: Not specified

User
Posted 27 Mar 2015 at 08:59

Thank you all so much. Rob's voice, for Graham, is the calm, reassuring centre at the moment. Yesterday, when we were walking the dogs he was able to say that it's not the test that will make him feel terrified - it's going for the results. Then he'll be really anxious. i asked him what he thought was so terrifying and he managed to get it out that it might be the worst thing in the world and that he had 6 months to live. 

I was able to say, quite calmly, "well, actually, it's not quite like that," and all the wonderful words of encouragement and all the factual stories came together giving me the ability to quietly explain how it actually is - that the worst-case scenario might mean 10 years, and that if the disease is rampant. I was able to tell him about curative and containing treatments and that life may be different but it will be better different, in some strange way - according to you wonderful people.

The anxiety just left him. He visibly slackened-off and his face stopped being so tight. After we talked and I told him of some of the stories you guys had shared with me, he decided to read the information in the booklet Rob had given to us and familiarise himself with what might be said at the consultant's appointment.

Bit by bit I - we  are taking heart, Bri, and I now know you are there Steve and all you generous people who have touched me.

Bone scan today - one more step forward.

Thank you without limit. 

User
Posted 27 Mar 2015 at 09:43

Steph the waiting for the results, be it from the bone scan, a PSA test etc, is affectionately known amongst us as squeeky bum time. I think we all have something in common with that.

Word of warning for the bone scan. You can usually see the monitor that shows the skeletal frame. The pelvic area will be lit up like a belisha beacon. Tell your OH not to worry about that it will be the radio active substance they have injected that is gathering in his bladder ready for leaving the body when he goes to the loo.

Hope all goes well
Bri

User
Posted 27 Mar 2015 at 11:20
Hi Steph,

The very best of luck for today's bone scan. I'm at the hospital now having just seen my cardiac consultant.

It's a beautiful day here, much like it was when I had my bone scan (mind you, mine was done on a Friday the 13th!). I spent a very special day with my wife, eating ice creams in a local park while we waited for the dye to work it's way through the body so I could have the scan.

Today's scan will answer questions, another step towards knowing what's going on.

Thinking of you both.

Steve x

User
Posted 27 Mar 2015 at 18:42

HI Steph,  Keep up the good work with Graham.  We are all here for you, El.

User
Posted 27 Mar 2015 at 21:59

Hi Steph

 

By now you will have sussed out that this is a real rollercoaster of a ride. My wife and I have been there and now wear the T shirts http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

I should  be dead by now according to my urologist but instead I find myself in year 8 (post diagnosis) and still having a ball. Read my profile and trust in the technology. Your husband has drugs available that didn't exist when I was diagnosed and I am still here, totally fine and healthy. That's not to say that this is not serious but there is a lot of hope and we as a forum are here to help you through this http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Nil desperandum

Allister

User
Posted 28 Mar 2015 at 08:31

28th March 2015

Hi, guys. I wish you could feel my gratitude over the ethers. I'm sending waves of love and power to you. If you think that's slushy, sorry, but what can I do?

Gray strode into the hospital and read a book in the waiting room. Strode through the doorway into the unknown for the injection and strode out - it was ok, needle hurt a bit but no big deal.  We went shopping - needed stuff because routine has fallen apart a bit and strode back in for the X-Ray.

He came out a bit pale but ok - he was quite chuffed with the way he managed the claustrophobia, the machine being an inch from his face one time and all. He said the guy operating the machine asked if he'd injured his shoulder and he told them no, not really. But he didn't remember that his shoulder has been hurting for years, or that he can't lie on it for long, or that it seemed to have come on through constantly hurling the ball for the dogs like an outfielder over the years and is exacerbated by throwing balls or chopping wood. 

The younger guy went to speak to the boss man who had a closer look on the screen or whatever - I wasn't in there - and when the scan was over the boss person said, "well, that all seems fine/ok/clear/normal" ... take your pick; Graham doesn't 'do' conversation. Nor did he recall anything else that was said other than general blahings. Conversations to Gray have that same quality of dreams, slipping from the grasp upon wakening and fading into thin air. This is one of those times when that trait is so bloody infuriating!

He was fine with it. I needed him to tell me over and over again what the radiologists/doctors were asking, what he told them, what they said – I controlled my panic to just two, puzzled, “so, what did they say about … ?” Nope. It had gone. But we agreed that a doctor wouldn’t say “that all looks fine” if he’d seen something worrying. He’s just say, “that’s fine, we have all the images and these go to your consultant” – a general blahblah rather than, “well, that all looks fine”. Wouldn’t they?

We got home and neither of us had either the energy or the appetite to cook. (Unfortunately, I’m hampered by ME/CFS – it was a feat of willpower to get through the day and one I physically won’t be able to repeat daily; I’m going to have to carefully plan how I can manage to care for him through whatever treatment he has.)

Graham had some soup and then went to sleep on the settee for the next couple of hours. He had experienced a body blow from the stress. It hits him as trauma, anything to do with his body going wrong, and one of the things I worry about is how he is going to mentally cope with anything invasive and/or debilitating he might have to undergo.

I’ve been trying to gently get him to get his head round what treatment might involve – like saying ‘after a month or so, when you have recovered a bit from whatever, then you can start to do some of that stuff online you wanted to do, even whilst sitting in bed or on the settee’, just trying to get his mind tuned to what Rob had told us on that first meeting – “it won’t be brachywhatsit, it might be radiotherapy or robots poking around in you or a surgeon having a fiddle…6 to 12 weeks…tired but get better .. aids…mmn.. mmn.. mnm.

Blimey, it sounds like I’m mothering him or he’s an imbecile or a right wimp.  Actually, he is a wimp (self-confessed) when it comes to illness or operations. He really can’t hack it – when I had treatment for cancer in 2001 he was present bodily but there were invisible birdies tweeting round his head, when he wasn’t wandering off to buy a newspaper because he’d forgotten his book, or grumping at being kept waiting (amongst all the very fearful, sick-looking people). He gets irritated at a cold, and outraged if ever a virus has the audacity to stop him in his tracks.

Illness frightens him – he’s not in control. I guess, now I think of it, it’s quite a masculine trait, this needing to be in control (as in, many men share that quality – I know women do too, get off my case) so it would seem logical for him to dive in and find out just what all the options are, what all the permutations of this f*** illness, now referred to as ‘TFI’, might be, but the fact is, illness, any illness, traumatises him. And I mean, really traumatises. And that’s my other worry – how the hell am I going to help him manage this? He slept for two hours from shock after a bloody X-Ray. But I guess it’s not really ‘just a bloody X-Ray, is it?

Ah, well. “That all looks fine” is what I’m hanging on to right now, and that bit’s over. Sunday, MRI. Will keep you posted.

By the way, you can’t reply to each individual on this site, can you? I mean if I click on ‘reply’ under an individual’s post, it just comes out in the general stream, doesn’t it?

Tell me if I ramble on too much, won’t you? I really mean it – tell me if I’m rambling on too much and sound bites would be better to read through.

XX to you all.

Thanks,

User
Posted 28 Mar 2015 at 09:32

I think he might surprise you and you will find that he copes with all this much better than you.

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

User
Posted 28 Mar 2015 at 09:55

Hello Steph, I know exactly how you feel as I cannot stop worrying, my OH had brachytherapy in January, he has suffered bad side effects and it still hurts him to sit down (being a farmer he is finding tractor driving very uncomfortable) so with the pain inside, plus his hips and lower back hurt all the time it is always in our minds the question of is it worse than original diagnosis, he was never offered a bone scan so I worry everyday that they may have missed something. I am sure everything is fine, I have to trust the consultants, but in my mind the worry doesn't stop. Even if it is gone (takes a few years with brachy) I know I will be worrying about when (I should be saying if not when) it will return. The consultant said he has very high success rates and sees less than 10% of patients returning so I should be happy.

OH doesn't seem quite so worried as me, he says he would like another 10 years of life but has already booked the plot next to his parents grave in the local church yard!! So he obviously is worrying, not only do I want him here still in 10 years time but our youngest son will be 15 so I hope he will be around a lot longer!

There are a lot of people on here with very positive attitudes, in a far, far worse place than we are and I admire them.

I just wanted to say I know how you feel and I don't know if the worrying will ever stop, hopefully your husband, like mine will have some good treatment soon.

All the best. 

User
Posted 28 Mar 2015 at 10:10

Steph, if you are replying following something one of us has posted, the yes, we all see it.

If you click on the persons name, under their picture, it opens their profile box and you can private message there.

Good luck for Sunday.

All the best Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Mar 2015 at 10:32

Hi Step,

It's not rambling, it's a chance of sharing what you are feeling and what's happening in your life.  I find it really helps me to get things off my chest and I feel much better afterwards, especially with the wonderful support everyone here provides.  Whatever dark place you find yourself in, you are never alone.

I expect Graham now knows what it's like to be a sandwich filling, that's how best I would describe a bone scan.  The scanner lowered itself even further once it cleared my head to maintain the same distance from my body.  I thought to myself if it raises again when it reaches my stomach I will be most offended!  When I was given the letter about the scan, I was told it could last anything up to an hour.  When I walked into the scanner room, the nurse looked me up and down and said "you should only take 30 minutes" (probably due to me being only 5' 6").  When I got up from the scanner bed I said to the nurse that I bet they booked all the shorter people in on a Friday (it was a Friday afternoon and the first day of last year's World Cup in June) so they can scan their quota of patients but go home sooner because they hadn't taken as long to complete!  She said she hadn't thought of that but thought was a great idea. When I reached the waiting room and told my wife, she asked the question "Has anyone measured you yet?".  I thought about saying "So long it isn't the undertaker, I don't mind" but I didn't, fortunately, as I'm sure she wouldn't have shared my sense of humour at that point.

Anyway, I hope the MRI goes well for Graham.

Thinking of you both.

Steve x

 

User
Posted 28 Mar 2015 at 10:51
Hi Steph,

Glad to hear the bone scan is over, that's one thing down. Pity after they give you the injection you don't glow in the dark! That would be fun. Keep sharing with everyone here and as Steve says you will get wonderful support. Unless there is someone here that I was with when I had my treatment and I'm unaware of I don't know anyone personally but feel like I do such is the relationships that build up.

Hope the MRI goes well

Best wishes, Arthur

User
Posted 28 Mar 2015 at 12:40

Thank you all. x

User
Posted 29 Mar 2015 at 07:36

Scheduled for 12,40. Interesting time - very precise. 

We went to the theatre last night - it's been booked for ages. Not been for years and years. We didn't know when we booked it that a) we wouldn't feel like going, b) Graham would confuse which theatre to go to and we'd end-up at the wrong one, c) Graham would try to open the driver’s door of the cab we hailed in a panic, d) we’d only just get to the other theatre across the city in time, e) we’d enjoy the play as if under a teetering boulder, f) Graham would try to open the cab door with the pull-bar when we got back to the car from across the city, f) We’d discuss how it was going to be more than the play on the way home – until we fell silent for the last 60 minutes of a 90 minute drive, g) we’d sit for an hour into the night staring at the TV screen and not seeing the crap inevitable on it.

Has quite an impact, this illness, doesn’t it?

User
Posted 29 Mar 2015 at 09:09

It has Steph.
And in a few months time you'll look back and ask yourselves, how did we cope.
You will and you'll both be stronger for it.
Life will always be different now, no matter what path you choose, because of the physical aspects, as well as the mental ones.
It would obviously be better for us if our men never had to go through this.
There are positives. You'll appreciate each other even more than you did before and every minute of life now has a bigger meaning and a purpose.

Best wishes Graham for today.

Keep strong

We can't control the winds - but we can adjust our sails
User
Posted 29 Mar 2015 at 09:24
Hi Steph,

Good luck to you both for today.

Hope you've remembered to alter you clocks.

Steve x

User
Posted 30 Mar 2015 at 00:20

Thanks both of you. i know you're right, Sandra, but at the moment it's too much to contemplate. but i will be remembering what you and all the others have said.

And thanks for your good wishes and remembering us, Steve. Gray coped well, but we did forget to put the b*** clocks forwards - just about remembered the appointment.

Now we wait.

User
Posted 30 Mar 2015 at 20:35

I feel so sick and sore with worry. I've been looking at photos because I suddenly became aware of how drawn Graham is looking - he has lost weight, I can see it and I've seen it for a while, his face having become thinner. He's been so tired and a bit weak in the legs for quite some time; we've put it down to getting older, even though he's only 64, even though something was not right to me - his dad is 92 and still labours in the garden. I kept looking at him, long before this bl*** thing started wondering why he's been so lethargic, so tired all the time, thinking it must be his sleep pattern being disturbed from the sleep apnea and the getting up in the night, but something hasn't been right for me for ages.

Why the hell didn't I make him go to the doctor? I kept suggesting it to him, but he just shrugged it all off. Now all I can think of is that the damn cancer has broken through the capsule, it's in his bones, lymph nodes - and what the hell are we going to do? We have no family and are quite isolated since moving to here - no friends. It is like a nightmare slowly coming towards us. I'm really so frightened.

I keep wanting to cry, but swallowing it down all the time because he's in during the day for the last couple of days, but he really doesn't have much of an idea of whet is coming, other than the dread of going for the results. What a nightmare - absolute dark turmoil.

User
Posted 30 Mar 2015 at 21:17

Hi Steph,

Just been reading through your  thread....... It is a difficult time for you both, as all of us know only too well.

I can't add much to what has already been said in trying to allay your fears.

Hopefully when you have all the results back and have had chance to talk at length with the consultant you will feel a little calmer, as things may well be not as bad as you think they are.

I'm no medical expert by any shape or form, but looking at what you have explained so far I would say your partner / hubby has every chance of a good outcome in dealing with this disease...


Sorry, but I'm not very good with words...

Best Wishes to you both


Luther

 

 

Edited by member 30 Mar 2015 at 21:23  | Reason: Not specified

User
Posted 30 Mar 2015 at 22:27

Thanks, Luther.

I know no-one can say any more than they have, but I have no-one else to talk to, or confide in so this is just a place to 'speak'. I cannot show Graham how I am really feeling - I can't impinge upon his own fears and all I can do is bolster his hope and belief that it will all be ok and whatever the case, we'll manage. I've been trying to make plans on how to care for him post-op and all sorts. I just can't stop my mind from bolting and I can't call the Samaritans because he's at home most of the time, so just to fling out some of the pressure and to know that it's heard is all I've got right now - and I'm grateful for it.

I saw your profile - I am pleased for you, I really am. Please God this is what they say - not as bad as you think it will be, but thank you so much for just saying you're there. It helps, it all helps.

User
Posted 30 Mar 2015 at 23:12

Steph,
That is why this forum is such a godsend, we can put, more or less, what we like, how we feel and someone somewhere will be reading this and feeling for us.
Rambling on, so what, we want to hear how YOU are coping, as it is always those around us who feel it more, we are all here to listen and help you where we can.

God bless you in your struggle.

Chris.

 
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