Dark day and thoughts.

So I am having a very bad day today and feel the need to share it with whoever is out there. I have found in the past that just writing ones thoughts down on paper gets them out of your head, even if you just tear it up and throw it in the trash after, I then find that I feel a little better within myself. My thoughts are irrational, stupid and somewhat dangerous, but mostly unfounded at the moment, but it is the way I have always been and to long in the tooth to change now...............

I lost my father last year and still miss him greatly. He was almost 95 so had experienced and enjoyed life to the full, so I can be grateful for that. He had always been a very strong and independent type of guy. Being ex special forces had made him that way. Even as a kid I never felt close to him, I never received hugs and kisses from him as I did my mom, but now realise his tough time in the army had made him that way. But! He was always a very good father to my sister and I. Some time back he made me promise not to have him put in a home when he was no longer able to manage things himself, so for two years I became his full time carer. In that two years I became closer to him than I ever had in my entire life. Well, you cant change a persons dyper and do other personal stuff for them on a daily basis without having a close relationship with them. He even used to hug and kiss me, apologising for being such a burden to me, that contact shocked me at the time, but drew us closer together than we ever had been. Then one morning last year just after I had made his breakfast he just collapsed on the kitchen floor.............. As the Lutha Vandross song goes “ If I could dance with my father one more time, I would play a song that would never end” I think it could be that it is remembrance Sunday over here today that I am mostly this way today.

With such a hole in my life now, combined with so much extra time on my hands I have spent my time this year pulling my house apart and making it a nice and comfortable place to live, so that when I am no longer able to do stuff like this I will at least have a nice home. But my results from last Tuesday have almost brought me to a halt. All the new heating is in and most other stuff has been completed, just a final bit of decorating to do before all the nice new carpets go down next month. I have even installed new security lighting and cameras to keep away unenvied visitors “Prostate Cancer, did you hear that?” But when I got up today to start decorating this big black cloud just descended from nowhere and I started thinking all these random thoughts. Like how much time will I have left to enjoy all my hard work, should I even bother finishing it, should I cancel the carpets and all other work and make a bucket list, using the money to do stuff that I have not managed to do before. You may be saying “its not that bad, there are people far worse off than you. You are just feeling sorry for yourself, don’t do anything stupid, pull yourself together, go and talk to someone and get counselling” Well I spose you would be correct in saying that, but right now all I can focus on is the “here and now” I have always been a strong person in life, a great problem solver, but this one has got me beat. I was always the one who would rush and help if someone was in trouble and have done so many times through my life. I have always been involved in a lot of charity work in the past, raising thousands of $ for good causes. BUT........I have never been the kind of guy who is able to accept help or any kind of charity myself. I am a giver, not a taker. Losing almost all of my family in the space of 12 months 12 years ago put me in the darkest place I had ever been in my entire life, but after a long battle and almost doing something very stupid I managed to fight back. But that was 12 years ago, I was a much younger guy back then. I have been sat here today trying to find that inner strength that I called on 12 years ago, but “the box looks empty!”

My neighbour caught me when I got back from the hospital on Tuesday and asked how it went. I just looked at her and shook my head. She went silent for a while and then said “look, if there is anything you need, shopping and such I am always here” Then to lighten the mood a little she laughed and said “but don’t expect me to wipe your ass” She is young, with a young family, so would not want to bother her as she has enough to do with work and raising two kids. It was not until I got indoors that it hit me what she had said. Reading about all the incontinence issues on here already had put me in a bad frame of mind, but to be honest I had started to deal with that possible outcome. Having to change many wet pads for my father gave me a better understanding of all that. But from what my neighbour said and doing some research I was shocked to find out that treatment can cause incontinence from “both ends!” That has been a very big shock for me and not sure I could come to terms with that. Being out some-place and pooping my pants.....No No, I could not handle that one. I only had to do that for my father twice, both times it was in the middle of the night, but even though I loved him very much and would do anything for him, that was a tough call for me.

Since getting my results this week and finding out my score I have spent a lot of time here reading and asking questions. As usual you have all been there to answer my call, no matter how stupid some of my questions may have been to you. To the point that I have felt I have been wearing out my welcome a little. Yes, I know that is a stupid assumption for me to make, or you would not respond to my questions in the first place. But read above ^ A giver of help and advice, never an asker or taker. I have never understood the meaning of the numbers, but one guy here said “I will swap my 4+3 for your 3+4” But I thought we are both 7, so why would you say that! Now after reading stuff I have found out. Scoring 1-10. I-2 the cells are not cancerous. Then 3 and up there is cancer. My results were 3+4. So most of the samples taken were grade 3, but there were some that were grade 4, making a score of 3+4 and I can now understand why that score is “better” than a score of 4+3.

You may think we are lucky over here with FREE health care, but with all the spending cuts going on within the NHS at the moment it is not as good as it used to be. Especially with regards to cancer treatment. Because of cost they have withdrawn or refused to give some life saving treatments. Did you read the story from over here about the parents who took there 5 year old son out of hospital then went abroad to get life saving treatment for him in Prague because the doctors here said there was no more that could be done for there son. The British government even issued an international arreast warent and had the parents thrown into a Spanish jail, on the grounds that by removing him from hospital here they were endangering his life..........WHAT! The boy has now responded well to proton beam therapy in Prague and can return home, but the parents have said they no longer wish to live here and will probably stay in Europe. I cant blame them either.

We do have private health care here, but like America it is expensive. But like anything that is insuranced based they do like to limit there losses. If you have ANY previous health issues at the time of taking out the policy they will not cover them in the future. So the answer is to take out a good policy when you are young and healthy and never stop it. It has amazed me to read how many of you travel hundreds of miles for treatment. Even going to another state! But at least that way you can get the best possible advice and treatment for your condition. We cant do that here. Even with private health care. It just does not work that way over here. When I was due to have my back surgery at the beginning of this year, I asked the consultant about having it done privately. He told me it would be quicker, but the treatment would be exactly the same as being done on the NHS. The only difference, and at a cost of about $40,000 I would have better food and a private room!

I am not sure what direction my mind is going right now. When I get the call back or what treatment to go for, that is if I decide on any! The side effects are pretty much the same for all. I am feeling ok right now, so why make life unpleasant with treatment. The way I see it right now is when you are born you have an internal clock that starts ticking. Well this week I have been given a second clock and now it is a matter of which one stops ticking first.

It is getting dark here now, I am hungry so will go and fix something to eat.

I apologise about this post, because you have all been so kind and supportive since I joined, but right now I cant see much hope for the future, either physically or mentally. If only I could have one more dance.

There is no need to reply to this post, as none will be expected. Maybe I should never of posted it in the first place......Maybe.........Maybe.........Maybe........

Thanks for all your support and help in the past. It has helped, Honest!

Casper.

Hi Casper
I don't know much of your history -- I was a regular, maybe even obsessive, visitor a couple of years ago when my husband was first diagnosed, but now I check in very infrequently and to be honest, probably more on my own "dark days." So I don't know the background, only what you wrote in this post, but I do know the sky isn't as dark as you think. You're in the belly of the beast right now. This is still a fresh blow, and all the unknowns can get scary fast. It does get better.

Pratoman said he was encouraged by the advanced guys with ominous stats fighting on years later. If that's true for you too, maybe the best thing I can do is testify to that. My husband was one of those guys with dreadful numbers at the outset -- G9 (5+4), his prostate was essentially entirely replaced by cancer (11 cores were 100% cancerous cells, 12th was merely 95% cancer cells), it had spread to his lymph nodes and throughout his skeleton...it didn't look good. And then I did some of that research you mention doing following your neighbor's failed attempt to lighten the mood. Wow. The internet is pretty depressing when you've got a fresh cancer diagnosis.

But it's now 2.5 years later, coincidentally the life expectancy mentioned by the diagnosing doctor, and what I've learned in the meantime is that those stats online are of course based on the past, and men diagnosed today can expect better outcomes. I'm not claiming it's been a fun ride. Ted lost that confident assumption of perpetual tomorrows, and a lot of weight and strength and energy, and took a lot of meds, and had a lot of emotional turmoil. I've suffered from this, our kids have suffered from this, but we're all still here, making plans for tomorrow and next year and beyond. He's still able to work, ride his bike, yell during Ohio State games, leave his socks all over the house.

His bones are somehow, amazingly, unexpectedly, now clear of cancer. His PSA was undetectable for about two years and is currently detectable, but staying nice and low (between .3 and .7). His lymph nodes have been a little more stubborn (the cancer hasn't grown, but it won't shrink either), but he's currently scheduled for a surgery that will remove them. Usually surgery is not something to be excited about, but given where we started, the idea that his cancer is small and contained enough to be removed feels darn close to a miracle.

So don't despair. You don't yet know exactly what you're dealing with, and even when you do, if you hear discouraging things, don't jump to conclusions. You are a strong person who knows how to give and sacrifice. That's what you'll do. Some hard stuff may come your way, and from what I read in your post, your tough dad's blood is running through your veins too, and you will gut through the hard stuff and keep on going.

None of that's to say you should be stoic and confident. I think you should be confident, but I know you'll also feel pretty terrified and down at various points. Be kind to yourself, you have every right to feel that way, just try to remember you're going through hell, not building a house there.

Know that there are a lot of people out in the world pulling for you -- the many people you've helped over the years, the many friends and supporters you have on this forum

Katie

Caspar -

First, no need to apologize at all for posting about the way you are feeling or for your concern about bothering us or "wearing out your welcome" here. Just remember that there is probably no better audience in the world than right here for listening to you talk about this or for understanding how this is affecting you.

The kind of day you are having just "goes with the territory" when one is facing this beast, but, believe me, it always passes, and it's really true that tomorrow is another, likely better, day.

Things can be done to help. You didn't indicate this in your post, but do you have a wife and/or children who can help? Sometimes just having someone like that to talk to can be a huge help.

Something else. I assume from references in your post that you live in the UK, where there are many support facilities for men with PCa. Have you considered attending a PCa support group that may be located in your area? Just for the heck of it, I googled "prostate cancer support groups uk" (without quotes) and got a number of hits, including locations and addresses. This one, and I'm citing it only as an example, looked helpful:

prostatecanceruk.org/we-can-help/support-groups/find-a-support-group

Please do think about looking into attending such a group. I noted in your post that you did not seem keen on this kind of help, but please do think about it. You would find people there who can relate completely to what you are experiencing, and have experienced it themselves, and who may well provide you just the kind of support that could make a big difference in your life.

And then there are always PCa forums (personally I have always felt this one is the best) which are always just a keyboard away, 24/7. We are here for you.

Whatever you may find that helps you, good luck with it, and do check in with us anytime with an update or just to talk.

Casper,
What a great post! Why? Cause you were totally open about how you're feeling right now and that is a great thing. Nothing wrong with being fearful, indecisive and unsure about what's in store for you. That is the stinking' part of this disease. As days go on and you get a better grasp of everything - just as you're learning now - that will be immensely helpful to you.
I believe you stated your not married, right? No children? It sounds as if you've kept yourself busy over the years with some type of charitable work, you can still do that and it would benefit you & others. You're that same person but with a new fight on your hands. You're not out of the game, Casper, you're taking a time out and thats ok. Time outs are to regroup, strategize and carry out a plan.
As you can see there is an abundance of empathy and kindness here. Everyone helps everyone else. Thats what this forum is for and about. Please continue to post, Casper. You can be sure the day will come when you'll be helping someone else, it's funny how that happens. Look at Pratoman - as worried as he's been he's right there offering his help along with the the others. That is a great thing.
Best to you Casper,
Susan

Well I have just come back to delete this thread, but found the people have already responded. Now why does that not surprise me!

I went and had something to eat, but still felt no better, so although it is cold, dark and wet out, I got my bike out and went riding like a thing possessed to try and drive all these dark thoughts and frustration out. To some extent it has worked, although I did get very wet and cold.

Whilst riding I go to thinking how wrong and disrespectful it was of me to post this. All you great guys and girls with far bigger problems than my own, yet still you drop by with words of wisdom and support. I feel so guilty now and wish I could remove this, but now there are replies attached I am not sure how I should go about it. I feel so embarrassed right now. Normally I am a pretty private guy, so would write this kind of thing down on paper then scrap it and feel better for it, but this time it just didn’t work, so I stupidly posted here. Sorry.

Pratoman.

I wish you would change your name, Do you know the meaning of that name? I have taken a kind of liking to you and followed your posts and tried to give the best advice that I know right now. I believe we are more alike than you would think. Although a little ahead of you I often share that worry bench you often sit on. I would be very interested in that link you mention, but have no clue how to PM you. You are such a nice guy, I don’t know you but feel that I should. Maybe we knew each other in a previous life! I truly hope your journey ends real soon and you don’t have to join me on the long road of discovery and uncertainty. Thank you for being you.

Infohound2.

WoW! Your post has impacted on me in a very big way. You have been on one hell of a journey this past 30 months, and from what you have said has managed to beat all of the experts expectations. I truly hope that his up and coming surgery goes well and that you can all put this beast behind you once and for all.

You mention that you now only drop in here during your own “dark” moments, I hope your visit today does not mean you have to bad a problem, but I would like to think it was fate, as you have found my post and offered me hope. Thank you so very much. I wish you, your husband and family all the very best for a long and PC free future.

81GyGuy.

Thank you for your words of support, although I was hoping to get back here and remove this post before causing any distress to others.

Yes, I do live in the UK, but have no wish to get the support you mention. I was given information on counselling and support at the hospital on Tuesday, but it just is not for me I am afraid. These recent events are not my only issues, they go back some 12 years now. So this PC thing is only part of my problem and where I am right now.

No, I do not have a wife. You may of missed this in my long rambling post. I lost my son through a freak accident in 2002, then my wife through a brain tumour just 5 months later. I could not live at home after that, so moved in with my parents. Then 3 months later my mother passed very suddenly, then just 3 months after my precious 5yo granddaughter, my late sons daughter and my only grandchild. All within a 12 month period. So as you can see I am now on my own. Well you did ask! Friends! Well I used to have, but after the death of my grandaughter I found that there was word going around that everybody should keep away from me, because I must have a kind of jinx, as everybody that comes into contact with me is dying! Well that done it for me and I made a failed attempt on taking my own life. Even now my old friends avoid me, for whatever reason they may choose.

I do have an older son left, but this recent news has also placed him in a state of shock and he is finding it hard to take on-board. He also lost his mother and brother back then, so he is scared he could now lose his father. Leaning on him right now would not be to good for either of us I don’t think. I feel that my life comes with to much baggage to even think of unloading it all in a room full of strangers with regard to any form of support group.

So now you can see that my story goes much deeper than the events of this week. I never did manage to grieve for any of my family. The deaths were all very quick and to close. So I just shut it all away and tried to move on with my “life” Not easy I can tell you, but caring for my father gave me some purpose. That has now gone and here I am today.

Browntrout.

Thank you. Fishing! Now there is something I have not done in a very long while. I do remember that when I used to go I found it a great stress reliever and placed me at peace with the world. Maybe I should look at dusting my old fishing polls off.

Myman.

Another wonderful lady has come to my rescue. Thank you Susan very much.

Yes, I was married, read above ^ In my mind I still am. Even now I would feel guilty if I became intimate with another woman. After 30 years of marriage my dear wife and I were very close. She was not just my wife, but my very best friend as well. This week I have been wishing she was here to share this with me. Maybe that is a bit selfish of me, because she would without doubt take away as much of my fear and suffering as she could and I would not want to put here through all that. But not a day passes where I don’t miss her terribly.

I am honestly not normally as open as this. For some reason today I am wearing my heart on my sleeve, but normally I am a pretty private person. As I said in my first message, I would normally write all this on a piece of paper, just to get it out of my head. Then just throw it in the trash. In the past that has always helped me get over “dark days” but not today, so in desperation I posted it here.

I gave up my charity work some five years ago when my back problem started. It was never office based, all my charity work involved very active work and hard work I enjoyed very much. Probably the best and most rewarding work was raising money to buy Christmas presents for terminally ill children. Then dressing up as father Christmas and delivering the gifts to all the local hospitals and hospices. My back problem would no longer allow me to carry out that type of work, but the organisation that I started is in very good hands and still going strong. So I am very happy about that. Anyway. I am sure that the kids would know that Santa never had a limp or walking stick!

Yes. Prstoman has become my virtual friend on here, even though he did not know it, he does now.

Thank you Susan. Thank you very much and God bless you for caring so much for a stupid old guy that just rambles on and on and on.............


Compiler.

Thank you so much for your kind words. When I came back after my bike ride my intention was to delete this thread, but after reading all the kind words of support I am glad that you all beat me to it.

At least I am still able to ride my bike, one thing my back will still allow me to do. After reading all the kind posts you have taken the trouble to write I find myself feeling so much better now. I know it is getting late here and it is still very cold out and raining. But before turning in I think I will go for another ride. A bit more leasurly this time, with less anger and frustration in my pace.

casper555,

We all get days like the one you just had. Everything is doom and gloom, and that's OK; because we also get good days full of excitement and joy. This is life! However, we all want to be happy and live forever. True! When I got my cancer news I was in shock, a Gleason 9 (5 +4)! I did not expect it and the week following the announcement was a bit strange: my reaction, my family's reaction and my community's reaction were almost an illusion.

One of my community members had the wisdom to laugh at my dilemma and retorted "welcome to old age, you'll have a few more surprises and some of them wont be pleasant!, This is life!" It was this rather sombre assessment that woke me up from my slumber and made me realise that my planned trajectory of life was not my own any more; but life at times sets us on a new trajectory,

So my dear friend, feel "down" today, its normal to feel that way when our trajectory has shifted. I think it was Seneca the Stoic Philosopher who said "expect the worst". So if the worst happens be happy because you have at least expected it; and if the worst does not happen, well be happy then because it did not happen. So nowadays whenever, I go for check-ups I expect the worst, and I'm surprised and happy when what I expected did not happen.

Yeah, I expected that even with nerve sparing surgery I would never ever get a hard on again. And, what a pleasant surprise when I found murmurings and stirrings in the old fella.

Seneca and I have since become good friends!

ps. Find a professional in the helping professions and have a chat with them. The doctors who did the biopsy should be able to provide you with a few names, which is part of their duty of care!

pps. My dad was very much like yours, a WWII veteran. I could not help but smile as I read your post how you have become much like your dad: very independent and a giver yet at life's end he received "charity of heart" from one of the best - his son!

Take care!
.

Leave your message here. Plenty of folks feel like you do, especially during the dark early days when your life changes forever.
People need to know that they are not the only ones in the depths of despair.

Mel

Thank you for your kind thoughts. it's too bad we live in different countries, if it was easier I would enjoy meeting you as well. I'm sorry to hear about all that you've gone through over the years. After all you've described, surely you can handle what you are dealing with now, as difficult as it may seem. I assume if I get a positive week I probably won't feel much differently than you. But I know and you should too, but I will be over that once my brain settles down.

It sounds like bike riding could be a good outlet for you keep it up. And considering your back issue if there is any other type of exercise you can do it might help as well.

Apparently, it looks like there is no private message feature on this forum. But if you click on my name, it will take you to my profile page where you will see my email address. Just shoot me an email and I'll respond with the link. And we can converse in that way.

By the way I don't know what Pratoman means. Enlighten me. In my past career prior to becoming a financial advisor, I was in the garment industryand I used to travel often to a town in Italy called Prato, just outside of Florence. It is a major textile Center in Europe that is how I chose a Pratoman

I await your email. And if you remember only one thing, remember this…you are not alone.

Casper555
We all feel down at times. That is "the Beast" getting the best of us. DON'T LET THAT HAPPEN. I can totally relate to all that you say, specifically to loss of loved ones. I lost my father when he was 60 because pnumonia caused his fatal heart attack. I miss him dearly and owe him everything I have today.I lost my nephew, he was only 36 due to a brain hemorrhage. I too have looked hard at the end of my life, but my faith and family have lifted me to plan on a great future and keep on keepin on, with a purpose for my future. Just look at my stats, You recently congratulated me on joining the zero club and I truly appreciate that. Hang in there and keep the Faith brother, from one Kasper to another Casper,
Dan Kasper Aka Wings of Eagles

I just wanted to let you know that i am sending you warm thoughts and prayers. I appreciated your post probably because i am female and love to hear true honest thoughts from men. Not too many people to talk to about things this deep for men...but you have came to the right place. Dont feel bad i know we have all been there. Sounds like you are a wonderful son dad and husband! Sorry to hear about all of your losses.Neat that you give so much to others and have charity in your heart. My advise is to get your santa suit out again and get it ready as Christnmas is coming fast. I always felt better when i was doing and giving to others. But dont loose yourself take time for you. Get educated and learn all your options with your PC. Lean on these guys here they
are so knowledgeable and helpful...they have been there. Not so long ago we were in your shoes...i was a wreck we had our dark n dreary days...the storm...more storms..and finally a beautiful rainbow. I hold my breath as there will be more storms....but we will be stronger but not alone. These guys here are great:) Alison

Caspar - thank you. As I sit here knowing with a knot in my stomach, that in the next 2-3 days I'll be getting the results if my biopsy, you have succeeded in making me laugh out loud.
I never heard that before, must be a British thing, I don't think it applies here in the U.S.
I WOULD CHANGE MY SCREENNAME BUT IVE BEEN USING IT FOR SO LONG THAT it wouldn't make sense. I guess I'll just have to remain an ****** . Lol

My Italian ain't much but you could try UomoPrato which, I think, means Prato Man in italian. Or, PratoUomo if you want a smaller change. You could also just capitalize the M in PratoMan to force the "o" onto the end of Prat so people won't see the unfortunate word as strongly.

Tuscany is a lovely part of the world. Don't give up on the name. It is fixable.

Zeddy said...
Casper,

I also live in England. I had to pay to have my operation, because I was refused any treatment knowing that I had strong family history. I had to pay for MRI, then biopsy, and operation from my pocket. I see no point in suing the NHS. They spend millions on their legal fees, but cut back on treatments ..!

I fully understand your feelings ... I've been living with these dark clouds on my mind for a long time now. I wish you good luck.

Hi Zeddy. Nice to see a fellow Brit here. Thanks for your kind words.

I am shocked to read that because of family history you had to pay for treatment.

So from what you are saying a guy arrives at A&E with a heart attack and because his father had heart problems in the past they refused treatment! NO NO NO. You must challenge that and I promise you will win. Our NHS is free no matter what your family medical history is. So whatever doctor of hospital told you that pile of garbage is wrong I promise you that. You MUST challenge that decision. What about all the eastern Europeans that come over here just to take advantage of our free health service! Make a quick call to one of the many free medical lawyers that are here and get some free advice NOW.

Good luck, and you can buy me a pint when you get all the money back that you have had to pay out.