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How to stop feeling devastated?

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.

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 02:01
Hi Steph it is natural to be concerned. However Lyn is right things will be fine. My husband is 4 weeks today post an open radical prostatectomy. He stayed in hospital for only 3 nights. Has been driving for a week and has very, very mild incontinence only. The only problem being a staple that did not heal so well and needs to dressed every day to facilitate it healing from the inside. His recovery is excellent. Not really noticing tiredness but he is retired and can take life a bit easier if he likes. Everyone is different of course but I was expecting a longer recovery time and have been pleasantly surprised. Cheers Georgina

Edited by member 31 Mar 2015 at 02:05  | Reason: Not specified

User
Posted 31 Mar 2015 at 07:34

Chris,
Thank you. It feels like I'm overworking saying thank you, but I really mean it, thank you. I was lying in bed, awake before dawn, listening to Graham snoring gently and breathing and stopping breathing and stirring from the sleep apnea, and I felt so saddened by the fact that it used to annoy me because it stopped me getting back to sleep once it had woken me up, and now all I want to hear in the night is him breathing beside me.

I was trying to rein-in my galloping imagination; of what it will be like when ... of what it will be like when ... all the images crowding in and taunting me like demons. I gave up hanging on his breathing and came to the computer, to the only community that gets where I am at, where he is at, and found that I'm still heard - you took up the baton in the line of people who are listening, feeling, wondering what to say, running out of words, and yet again, I was reached by another hand in the chain. Thank you.

I was lying in bed praying to God, who seems so capricious, so inactive in His marking the sparrow's fall, and pleading yet again to spare Graham, and selfishly, me, the worst, and then all I could think of was all the children who pray for rescue, all the voices in the world crying out to Him for comfort and reassurance, and I thought, I'm just another voice in the wilderness. Why should I be answered?

'God bless you in your struggle' is not a phrase you hear - I hear - very often, but in that moment of darkness I heard it from an unseen friend who had answered my prayer before it was asked. So thank you.

And then I read your profile, and yet again the vice around my heart slackened off because I was reminded that men and women can live with prostate cancer, men like you and all the other kind, courageous, fragile, brave and tender humans, men and women, on this site. So thank you. And God bless you in your living.

Steph.

User
Posted 31 Mar 2015 at 08:21

First of all, I did not see your replies until now, Lynn and Georgina - they came after Chris's when I opened the post and it opened on the first page; yours are on the second page. I’ve just seen them after his and, having released some of the terror and anguish, I’ve calmed down sufficiently to be able to absorb what you are both saying.

 

You’re both up in the night – especially you, Georgina …  2 in the morning?! (Or is that Aussie time translated to British summer Time, I wonder?) And you both took time and energy to talk to me – God, how I am grateful. All these hands, this chain of a lifeline.

 

But I can hear you now. Funny, isn’t it, when you find what and who you need just at the right time? You’re absolutely right, Lynne, about using the therapist’s techniques. I do, all the time, but I guess it really is the darkest hour just before dawn! It does take enormous energy to control the mind as I am sure you know only too well, so it’s in those times I am at my most vulnerable that the thoughts become too unruly to manage. But in this space where I can now read and absorb your reply, your pep-talk is so re-orientating. You’re right, you’re right, you’re right, and I can hear you.

 

Rob, as far as I can recall, said that brachytherapy was only recommended for those where the cancer is confined to the prostate and that the guy who did it was very picky about his customers – must be concerned with his scores on the doors or something – it’s hard to recall accurately, but whatever he said it was clear that he thought it was an unlikely option for Gray. Maybe he saw something the GP wrote, who knows?

 

But straight after Chris has released the vice around my heart I am able to absorb the factual, no-nonsense information that you wrote and Georgina supported. I’m back to being much more calm; the sick terror has slid beneath the waves again. It’s a bit like living with Jaws!

 

I’ve been looking back at all the replies I’ve had so far and I’m quite overwhelmed – I really mean overwhelmed. Please forgive me, all of you lovely people who have answered me, for not having answered or acknowledged you individually – I can’t get my head round the body of support or information, it’s still a bit of a blur and it’s taking all the energy I have to keep my head above the water, but each of you has enabled me to stay afloat; a human life ring. But I keep dipping in to all the wisdom and experience, and bit by bit it’s getting through. He’s alive, it’s treatable, it’s containable – my new mantra. Thank you, each one, for forging me this life ring when I am drowning.

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 31 Mar 2015 at 18:52

Hi,just a thought on practical matters.  If Graham needs help after the op Red Cross offer volunteers who may assist,failing that  you may qualify for District nurses or paid carers.  Macmillan nurses have online sites as do Samaritans.  Sending you love,El .

User
Posted 31 Mar 2015 at 23:32

Steph, It is what we are here for, to help others. I know that I don't put so much in writing as most of the others do, in fact I reply a lot less that I once did, mainly because I don't know the newer treatments, so I leave that up to others, like Lyn, but I still look on here daily, sometimes several times, so I was more than surprised to see your thanks for those few words, that obviously caught the right nerve. I know what you mean about listening to Graham snoring and breathing as it brought back memories of when my wife had her chemo and I used to spend time at the bedroom door and watch her chest for signs of breathing for 3 days after each chemo session. "Why should I be answered", well why not, I'm sure HE has helped me to cope, he can give you more time with Graham, yes we can live with PCa, fact is more men die with it than of it, and saying that George H is about 8 months ahead of me, he has just about reached 10 years since dx.

So, God bless you in your struggle, look forward to Graham's treatment with hope, and keep on posting.

Blessings Chris. xxxx

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 07:08

Hi, all. Telephone call with results: no bone involvement or spread on either scan. It appears that the cancer is confined to the capsule, but the protocol is that it goes to a second team in Preston for their opinion. The cancer may have reached the outer margin of the prostate but appears no to have breached it. If the margin is too close to call then they may urge radiotherapy treatment. If not, all options are open, but the aim is curative not containment.

Despite the prospect of treatment and all that that entails and engenders the difference this diagnosis has made to me is stark. I realised at the time that what I was carrying was grief; continuous, unyielding grief. It was as though somebody had already died and the pain was as intractable and un-amenable to reason as, say, diabetes. No matter how I confronted it, this terrible sorrow simply sat in my chest and guts like a vice. With the diagnosis from the unflappable Rob, it just went; gone. Melted away.

As a person I've been through profoundly traumatic events and felt this same vice-like sorrow. But it was always as a result of an event or events. I've never experienced such intractable, unrelenting grief for something that has not yet happened, nor may well not happen, and it has astonished me with how floored I felt. As a therapist I am committed to working out what exactly is the nature of this terrible, crushing feeling, because in doing so I become a better human, a better therapist.

All that said, what I do know is that kind words, words of reason, strength and knowledge - words showing the different ways people can send love, comfort and company - make it possible to just keep on moving through the day.

Last night I didn't lie there listening to his breathing; I slept. So for now, in this place where I am bruised but not broken, I just want to say again, thank you to each and every heart in the chain of my lifeline. 

x

 
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