How to stop feeling devastated?

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.

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

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

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

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

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

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

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

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.

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

Alison - sending you love. x

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

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.