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Fear and loneliness

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

I am very new to this forum and to the fact that I have prostate cancer.  I am moving through the medical system, learning about my disease and think I am heading in the right direction. And I have moments/times of real sadness and fear.  I read some of the posts on this site and can head for a tailspin.  

I am sure this will level out As I get more information.  In the book "Thrive" the author said something to the effect until they say "you have cancer" you cannot understand what that feels like.  I get that now!  

I shared my news with a good friend last night and he said "we knew that" I replied no, we knew it was a possibility. There is a great big difference impossible and you have cancer.  He didn't seem to get it.  

I appreciate everyone sharing of your journeys.  Some of it is hard to read and I wish all well.  I guess reality is setting in.  I am hopeful and afraid at times.  It is clear I need to practice "one day at a time" from my other program. 

Have a great day everyone. Denis

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Welcome Denis!  You are in good company here.  Everyone here "gets it".  You may wish to utilize some of the other resources here on CSN... put some information in your "About Me" space so that others can see where you are in your diagnosis and treatment.  There is a link at the top of the forum page.  It will help anyone who is trying to answer any questions you may have.  There is also an acive blogging area accessible from the My CSN Space page, if you would care to document your thoughts, feelings and experiences.  And there is a chatroom listed on the left.  It is very active at night with many individuals who are either currenly battling cancer or are survivors or caregivers. 

There are also several other prostate cancer forums on the internet, some more active than others. Each has a different "flavor", some are more chummy and others more clinical, so hopefully you can choose one of your liking. Personally I use three and know of three others.  PCa is very common so even though men typically do not open up as much as women often do, these forums tend to be very active just because of the large number of men who have been afflicted with prostate cancer.

Good luck to you Denis!

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, I will look for other resources. Denis

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Denis:

You may feel lonely, but you are not alone.  Just look at the number of others on this list.  All of us have, or currently are, experiencing "those" feelings.  It is not normal to have cancer, but it is normal to feel what you described.

To give you an example of a positive outcome I decided to respond to your post.  I was diagnosed, by accident, with PC in March 2009.  I was 57 and had a PSA score of 17.  I had never heard of PSA and knew nothing of the significance of that score.  After 90 days of information overload, waiting, referrals, DRE's, biopsies, scans, and a self-induced marathon of Google research, I underwent the robotic radical prostectomy in June 2009.  The surgeon immediatley declared it a success but it took me a few years to accept that declaration. 

Of the two negative outcomes from the surgery (impotence and incontinence) I was left impotent.  To spin it with a token of humor I tell everyone that "he" took out my squeaker.  After a few years I finally stopped fretting over that and became thankful to be cancer free.    Incidentally, my PSA screens have been 0 each year since my surgery.  So here I am, one of those who came out on the other side with good health.

However, my tenure of good health has recently been interrupted because in May 2017 I was diagnosed with stage 2 rectal cancer.  I can now jump back and forth on this forum from the colorectal board to the prostate boardUndecided

There are significant differences in the treatment protocols for these cancers but the mental and emotional effects are absolutely the same.  What you are feeling today with/about prostate cancer I felt in 2009; and I am once again feeling the same things in 2017 with rectal cancer.

You are not alone.  There are so many of us - too many of us.  If you want or need to process your feelings I recommend that you do so with another who is walking the same path, or has walked that path.  It's like a private club.  Once you become a member then you have instant credibility with all other members.

Off the subject, but were you by chance a submariner?  I noticed your name.

Jim

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Jim thanks for the post and I wish you well in your next chapter.  The waiting and unknowns are the greatest challenges for me.  And I know sharing is part of the answer.  

 

Yes, I am a retired submarine officer, 24 years in the canoe club!  I assume you are airborne?  My son-in-law got out of the 82nd a few years ago.  

 

each day is a gift!  Thanks, Denis

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Denis:

Yes, I was in from 72 until 92.  My last six years were at Bragg, not with the 82nd, but with other similar units.  Jumping out of airplanes was my midlife crisis.  I loved it however my back did not.  I now have two rods and six screws holding together my lumbar spine and the VA said it was not service related.  Some things in life I can not understand - cancer and the VA are on the top of that list.

The stories on these forums are so depressing and I can't imagine the overwhelming burden of healtcare costs on top of everything else.  You and I have a small advantage with TFL.  When you cross the 65 yard line you will acquire Medicare coverage as well.  That combo is invinceable.  So far, not one penney of cost has slipped through to me.  Apparently all of those "less than happy" days in the military finally paid off.

I would not have done it differently.  The people with whom I had the honor to serve were real people and I truly miss the comraderie.

As we say in the airborne - keep your feet and knees together! (bounce that off your son-in-law and see if it doesn't make him smile).

Every day is a holiday and every meal is a feast!

Jim

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Jim thanks for your service, we were in similar times I was 71 - 94. The idea of jumping out of a perfectly good airplane is not on my bucket list and most people think submariners are a bit crazy, they are correct! Yes the best thing that has ever happened to me was my time in the service.  And  I have heard the combination of TFL and Medicare is amazing; pretty sure we earned it!  Peace brother!  Denis

GeorgeG
Posts: 127
Joined: May 2017

Welcome to the forum. Yes the words you have cancer can rattle you pretty good and it takes time to process your situation and get re calibrated to your new normal. One thing to consider is that being told that you have cancer while scary for sure, does not have the same meaning that it did years ago. We can image and detect tumors that were never found early years ago. Or never found al all. In decades past being told that you had cancer was the beginning of the end for most. We would go to the doctor because we had the symptoms of metastatic disease that was end stage. In today's world we are often times told that cancer has been found that does not mean the end or at least not for a long time because it is so early in the process or was never going to threaten our life. Many people die with but not of cancer, particularly prostate cancer. The beauty of the present day is that so may detected rtumors  are  cure able or not dangerous. Verified prostate cancer rumors are 90+ % cure able or not life threatening. We really need more than one term in today's reality for lesions/tumors.

As a matter of fact in today's prostate cancer reality many detected cancers are monitored and not treated. You will know more as your details unfold. Try to relax the best you can and live life fully every day, even if you have 30 more years. get educated and go the the best doctors and facilities that you have access to which will tilt the odds in you favor. Most prostate cancers are fully cure able and the more advanced cases are having better outcomes every year due to advancements in knowledge and treatment. We have some very knowledgeable guys here so if you also want some opinions about treatment, post your numbers and you will get some informed opinions to consider.

take a deep breath and try to accept your situation, then work the problem to get the best outcome possible.

 

George

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks and I agree with all you shared.  I appreciate your thoughts. Denis

GeneRose1's picture
GeneRose1
Posts: 64
Joined: Aug 2016

Airborne72 and SubDenis, I really enjoyed reading your posts. I'm retired from 28 years in the Marines and must have really gotten used to the punishment! I've been a PCa patient since my RP in April 2014 and subsequent ADT and radiation. Right now, I'm having a lot of success with Lupron and, if things keep going this well, will try a strategy called intermittent ADT starting next January (I learned about it here from VascoDeGama). There's a lot of new drugs and treatments coming out that hold a great deal of promise and I'm very hopeful for the future. Jim, that's just crazy that you were in the Airborne, made a ton of jumps, now have a bunch of rods and screws holding your spine together, and the VA said it wasn't service related!?!? Hopefully you got to 100% P&T some other way and don't have to worry about it. If that was me, I would have had to appeal that decision or get my Congressman involved. I sincerely hope you're able to kick the rectal cancer to the curb like you did with PCa. How was the RC discovered? Denis, you're in the right place to learn and get practical advise pertaining to your PCa. I'm certain that you'll be able to scroll through all the posts and find precisely what you need to take ownership of this and be part of the solution with your Oncologist. Yes, I know some of the posts can be pretty discouraging but I suspect that you worked through some underway emergencies that could have been catastophic and can certainly master this and keep charging ahead. I look forward to many years of discussions with you both. Best/Gene

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Gene thanks. Do you know what the best Marine is.... Submarine!!!!  Kidding aside thanks for your service and for your kind words.  Like the military bond that we share I am clear the bond of PCA is something that can help us all through the challenges ahead!  Gene your post caused a memory flash of a time when I was 22yo and on watch, in the torpedo room and a flooding casualty started (water int he people tank is bad!),  The first step is to shut the TR hatch and stay on the wet side to fight the casualty.  When it was over I had the shakes from the adrenaline.  But we fought the casualty without thought, just leaned into the training.  So I am in PCA boot camp now being trained.  Peace!  

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Guys:

I have been out of uniform since late December 1972 but I have found that you can still quickly identify a veteran in civvies.   That bond transcends dates of service, branch of service or all that was experienced while in the service.  We commonly shared burdens while learning to lead and follow (which is more difficult that many civilians understand).  We met people from other locals and upbringings, different ethnic identifications and different educational levels.  We learned that people are people once you share misery.  All those other labels disappear and what remains is just another soul like you who is trying to get by and to do it collectively makes it possible.  We became part of a unit.

I did not realize how much I learned about life and about myself in the military until I was out of the military.  Here I am 25 years after retirement still recalling something that happened and its application to civilian life.

There were some miserable moments and to this day I tell whomever will listen that I will never again get rained on nor miss a meal.  And, sleep is more important than food.  I was once asked what the most memorable day in the military was for me.  I laughed and said that one is easy - it was my last day.

Continue to march Gene.  Denis, you will need to Google that one.

Jim

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Jim thanks and I agree.  I got commissioned at the 11-year mark, E8 to O1 and went to "how to eat school" in Pensacola.  Part of the training was instruction on using a sword to march troops.  Hmm, I was on submarines, not a lot of marching!  Denis

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Thank you Airborne for a walk down memory lane. Though my service was nothing like yours (Army, 68-74) your first paragraph took me back some 45 years... remembering people I know I'll never see again, but will never forget, and wondering who if any are still alive. Sometimes wondering if they knew how much they touched my life, but then realizing that they're probably wondering the same thing. And the jargon, lingo, as well as local customs that those who have never been there will never understand. Same goes for cancer. Until you've had it or been touched by it, you have no idea what it is like. My wife said "it's the loneliest place you'll ever know".

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks we are a different band of brothers now! 

bassoneman's picture
bassoneman
Posts: 58
Joined: Apr 2017

Over the past 5 years I have had 7 heart stents placed and even though my heart could kill me in an instant ( my dad and brother died at the ages of 55 of massive heart attacts)  as soon i heard the words you have protate cancer it threw me into a tizzy..  I have already been through the radiation process finished up in May (not hormone treatment due to my heart) have made it through side effects accept I still get very fatigued but it still weighs on me. Wondering if it still waiting in there to show up again..    Then about 1.5 month ago due to a bone scan my orthopedic ordered for atheritis in my hip not associated with PC.. My forearm lights up.. Hoping it is just some sort of a stress fracture because the likelyhood of mets being in the forearm are small.. Turned out to be not the case.. It is tumor in the bone marrow of my forearm (ulner)..  Could have done biopsy but decided to wait 10 weeks to see if it grows in size.. Is it PC  don't know, likely not. but it can be. All the Dr's are on the side of caution and are treating me like it could be but it could be benign we don't know for sure without a biposy. I am less worried now about it after coming to the conclusion that if it is or isn't I don't have the choice.. It will be what it is..  I have to deal with it and move on these are our cards that are dealt got to know when to hold em and know when to fold em as the song says..      

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

I wish you well in your adventure. I am of the opinion that sharing our thoughts and fears takes the sting out of the fear.  The reality is what it is and I choose to day to accept and move on to do the next right thing. Peace, Denis

Will Doran
Posts: 207
Joined: Sep 2015

Denis,

 I know exaclty what you are talking about.  I was diagnosed in August of 2013.  I had no symptoms.  When diagnosed I had a PSA of 69 & a Gleason 7.  Had robotic surgery Dec 2013, followed by two years on Lupron and 8 weeks of Radiation to the Prostate Cavity area.  So far my PSA is still below 1.  It is coming up a tiny bit and if it continues I'll have to go back on some sort of hormone treatment. 

The thing that upsets me so much is when people  come out with statements, such as "Why are you worried?  I thought you had the surgery." or "Well, you had the surgery so everything is taken care of."  NO, IT'S NEVER TAKEN CARE OF.  My wife understands as do doctors, nurses, medical staff, and those of us here in the forum.  The people who upset me the most are usually family members.  They just dont' get it and nobody gets what it's like to hear the words " You Have Cancer" until you get that news.  I'm not just talking about Prostate Cancer.  I'm also dealing with Melanoma.  Every time I have another melanoma removed and tested, they just don't get it.  Doctor appointments every three months for dermatology, once a year for Radiation Oncology, Every 4 months for Urology and Chemo Oncology.  People think this is all over because I had the surgery.  No, it's never all over.  

So, you are in good company here with people who know and understand what you are feeling and going through.  Ask anything you want and I'm sure we will all try to help you.  I know that all of our cases are different and we are not doctors, But we will try to help.   What some of us have been throguh might be different than others.  But, I'm sure there will be help from all of us that might help you understand your situation.

This is a constant thing hanging over our heads.  I'm thankful for my doctors who have all kept this very real.  They don't sugar coat things and say all is well.  They keep my mind where it needs to be.  I thank the Good Lord for every new day, and live every day one day at a time.  My wife and I enjoy each day and all the simple things in life.  

Know that you are in my thoughts and prayers.

Keep the Faith

Love, Peace and God Bless

Will

GeorgeG
Posts: 127
Joined: May 2017

I am sure that most of us get a similar version of the "I am sure that it will turn out fine" reactions. I think that for most people they are either trying to be upbeat or they don't know what to say and don't want to think about such terrible things so they dismiss it. Sure, while your passing through the fireball and internalizing the fear it can be very hurtful to have your anxiety over facing your mortality dismissed so easily but I offer the following.

All peace and healing has to ultimately come from within. It's wonderful if you can surround yourself with loving, caring, selfless and empathetic people so cultivating such relationships can only help but in the end, we have to become at peace with our situation and feel a sense of calm and acceptance on our own. I understand that these are some of the hardest words to put to practice but knowbody was born with a gaurantee. We are lucky to still be alive and able to work the problem. We are lucky to have access to caring and knowledgable people in places like this forum an with good doctors. Many people are not as fortunate as us. Think childrens hospitals or highway causulties, etc. Everybody reading this is still fighting the good fight. Make every day count and don't try too hard to get the fearful ones aound us to "get" our situation. Let them work out their own fears and try to help them where you can.

You will know that you have found peace with this when despite your illness, you can now comfort those who are struggling with their newfound fear.

 

George

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, George, each day is a bit better.  I am thinking once I have a plan of treatment I will fill more grounded.  Denis

GeorgeG
Posts: 127
Joined: May 2017

Put the time and your energy in to understand your options, have good doctors and get really comitted to your choices. Then go into your treatment knowing that you are doing everything that you can to get better. I am sure that this will help you feel more grounded. It did me.

 

George

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, George, I have my first appointment with Yale/smilo cancer on the 21st and hope to get some answers and direction.  

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