Come & Go

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Come & Go, I see it often

Sometimes I think about is it them or me

If it is me than I cannot be soften

One Lovely Blog Award BorderI am me & they are them

And we cannot all agree

But is it me, her or him

One Lovely Blog Award Border& I try my best to be for all

Though I know this is beyond my control

I do my best to make the call

One Lovely Blog Award BorderCome & Go, I see it more and more

But that is ok, because I myself sometimes

Will take advantage and even the score

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It’s 2:16 in the morning

I have had a restless night, not much sleep because I have thoughts swirling in my head.

It is a while now since I really have had one of these nights.  Since surgery, I am taking medications to help me sleep because I continue to have pains associated with my surgery and recovery.  I also have pains not associated to my surgery and recovery that make it difficult at times to find a comfortable position to sleep.

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But on this particular night, it is those thoughts swirling in my head.

I am unsure how long it will be by the time I publish this post.  I may have upset someone and I may have upset you and I may have upset myself.  I make no apologies to no one, including myself.

This blog has always and will always be about me and my life and for that I make no apologies.  I am who I am and have changed for the better in many ways over the years.  I continue to change for the better, though at times the changes come slow; to me at times slower than what my life will provide me here on this earth.

When I die, I will not be a perfect person; I hope to be a person that at least tried to be a better person.  I strive every single day to be a better person.  Some days I succeed and many days I fail; some days I fail miserably.

My point is I try and I do it my way, because I know me better than anyone else knows me.

I have been told at times by people that they do not understand me.  I at times do not understand me either, but I still know me better than anyone else.

When creating this blog, it was a way for me to write about me and my life.

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My life in words for I hope one day those important to me would read.  I have no idea if they will read it or not – I don’t know.

This brings me to those thoughts swirling in my head tonight, this restless night and me writing this post at 2:16 in the morning.

I don’t really like to be rude; I can be though, and have been times in my life.  I can be rude and have been rude to people I know and to strangers alike.  My personality is complex and at times people do not understand me.  This has already been identified.

When writing and publishing posts, I attempt to write in a way where I do not come across as rude and I try to consider other’s feelings.  So please do not take this the wrong way – I am being honest here.

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When I write posts about me, the true very personal me, I ask for no advise.  I write the true personal me because it is important for me to do so.  I have come to appreciate support and encouragement here and the friendships I have made are invaluable.

Now, again at 2:16 in the morning, I am writing the true personal me.  It was a little while ago; and that week was tough and that ‘I don’t know’ was tough and therefore I was rude because I did not ask for advice.  I was writing the true personal me because it is important for me to do so.

Look Forward

Friday a week ago, I met with my Oncologist Dr. D. to discuss the option for a possible trial medication for Stage 4 Bladder Cancer and possible Cancer Centers that could administer the trial.  At this time, research on my part is taking place with regards to my future cancer care.  Because I am currently recovering from my recent surgery, no future possible treatments will take place until after the next round of imaging tests; these will take place next month.

This past week I had a routine appointment with my Urologist Dr. P. to discuss my surgery recovery.  Dr. P. is pleased with my recovery and we will have another follow-up appointment early April.

I also met with another Oncologist Dr. A. for a second opinion at a Cancer Center here in Pensacola.  Dr. A. will meet with peers on his facilities tumor board to discuss possible options.  He did indicate that one possible option is radiation.  At this time, no decision will be made until after imaging tests are conducted next month.

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This past Tuesday in my post ‘Seeking a Home Base’, I mentioned Gary and I are searching for a location to plant roots and use as our home base.  A trip is planned in a couple of weeks and we will be visiting different locations that best meet our needs.  The trip will also include visiting a major Cancer Center located in Tampa, Florida.  A referral is submitted and a consultation appointment is in place.

Currently there is much planning taking place for a future move to a more permanent location and finding a new medical facility for my healthcare.  As indicated a couple of days ago in my post ‘Exactly 1 Month‘, I am feeling good with my recovery.  I will admit though, I do not feel excellent as I am having difficulties with some pain and other minor issues.  I am not sure if they are related to the surgery or my cancer diagnoses and if over time I will overcome these minor issues.

I want to feel great every single day, and honestly, I do not.  7 weeks ago I had a very major surgery and I have to remind myself the recovery will take 2-3 months.  I will be starting my 3rd month of recovery very soon and when it ends; my hope is the minor issues come to an end as well.

I have not felt great in a very long time and I miss those days when I felt healthy, active and invincible.  I was truly happy those days and I feel they are gone for good.  Am I being a little pessimistic and down?  Yes, I am.

What do I have to look forward to in the coming weeks and months?

More recovery, a possible new location and new doctors with new ideas.

I hope also, I can look forward to feeling healthier, active, and invincible once again.

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I don’t know

Preface –

For almost 2 years now, I have written about me; not just those events from the far and near past, but my personality, my feelings, my emotions and my thinking.  Yes, I have my days of good, that are then followed by days of bad.  What do I mean by this?  I have always revealed my weakness and along with that my strength.  Recently I am weak and struggling and I pretend to you and others that I am fine and I am strong.  But, right now I am not.  And because of this, I become that other me; that mean me – that I try to hide from others except the one that matters the most.

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I voice recorded the following words yesterday and document today for all to read – especially the one that matters the most –

I have the last few days been a little down, a little angry and upset.  And, as usual because of who I am, I take it out on Gary – I am a mean person.  I am not respectful to him, even after he puts so much effort into helping me out, I disrespect him – I am mean to him, flat-out mean.  I went to the doctor the other day and the recovery is going fine and he (the doctor) spoke of because of some Stage 4 Cancer; I don’t remember what exactly what we were talking about, he spoke of a patient he had that went through the same surgery as I did and within a couple of months he (the patient) died because the cancer had spread.  Not necessarily what I wanted to hear, but, um – then I spoke with my Oncologist the week before who talks about all her patients being terminal; once again not what I want to hear.

So, I have aches and pains and other issues that bring me down and I think to myself; are these pains associated with cancer spreading or they a result of my surgery and I am still recovering; or are they result of inactivity on my part because I am restricted to a certain extent to exercise and being more active?  I don’t know, I don’t know.  And that is what brings me down; I don’t know.

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Uncertainties right now in my life are majority and certainties are the minority.  And sometimes this gets to me.  And my optimism and positiveness results in negative and pessimism.  That brings me to just not wanting to try anymore, just forgetting about it all: and just like screw it.  I don’t want to deal with it, I just don’t want to move on; I just don’t want to move.

But, then there is Gary, who continues to put a great deal of effort into helping me, not just me physically, but you know preparing for the future and dealing with doctors and other things associated with my health.  And he does this it on a consistent basis and I don’t always, um, you know recognize him for it; because I am dealing with my own stuff.  I make it about me, it is always about me; and so, this is what it is about today.

‘My Personal Hell’ (Reader Discretion Is Advised)

I wrote this post over a year ago, and never published it because I felt at the time it was too personal.  Since that time, my early cancer treatment resulted in Stage 4 Bladder Cancer and a major surgery to remove my bladder.  Since that time, I have written other posts that were sensitive in nature.  Since that time, now I have nothing to hide.

Written February 16, 2016 –

wikepedia.org uses these words to describe Hell; I also use these words plus others –

Agony, Torture, Pain

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This post will be very personal in nature and will expose my thoughts that you may not want to read.  Stop reading at any time you feel uncomfortable – I understand.

A week ago I had a tumor removed from my bladder.  After the tumor was removed I had a catheter inserted into and through my penis into the bladder to help it drain urine and to also flush out any remaining pieces of tumor and any blood clots that had formed.  The catheter used on me is a ‘3-way catheter for irrigation’, therefore it was a very large catheter in circumference.  Upon having it removed, which I thought was bad enough; I am experiencing the usual pain and burning when peeing.  But the pain and burning is nothing compared to what I experience on a nightly basis since having it removed.

I do not look forward to sleep, as I know upon the many times I wake during the night, waiting for me is ‘My Personal Hell’.

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Let us review what takes place upon waking from sleep for a typical male.  goaskalice.columbia.edu has the following –

Contrary to what many believe, waking up with your flag at full mast is not caused by urine buildup in the bladder. Morning erections are technically nighttime erections (or Nocturnal Penile Tumescence) which happen three to five times per night. They usually pop up (pun intended) during periods of Rapid Eye Movement (REM) sleep (when most dreaming occurs) and last around 30 minutes each. Unrelated to dream content, they are both common and completely normal and men older than sixty years may even have them during non-REM sleep.

Yes, I am a normal man in that I experience this normal body function.  But less than a week after having a very large tube inserted and removed from my penis, this normal body function is now an experience that brings me to tears.

The last several nights, I have cried more than I ever have in my entire life.  During these normal body function times, the fire, torment, punishment, agony, torture and pain I feel is so overwhelming, I plead with God to let me die.  I am weak, I cannot handle the pain, my life will never be the same, please God, let me die now.

I am tired as this is my new nighttime ritual.  How long will it last, how long will I last.  I am tired not only due to the lack of good sleep, but the emotional toll it is taking on me.

I am down and I am sad and I am frustrated and I am mad.  I try to stay hopeful and positive for the future – but it is difficult.

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It is difficult because every night I do not look forward to sleep – because waiting for me is ‘My Personal Hell’.

(This will never be an issue again.  As many of you know, my most recent surgery removed not just my bladder, but other organs that now prevent me from experiencing Nocturnal Penile Tumescence.  Lucky me!)

blessed our roads have crossed

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When I started this blog almost 2 years ago, I never imagined I would be writing about my journey with cancer and events that would lead me here today.  But, here I am today with those events and experiences and sharing them with you.  I just write and share and put it out there for those that want to read it.  This blog is about my life; nothing really special, many others are leading more interesting lives.  When I write a post, sometimes it affects others and sometimes I receive a comment that affects me.

From my post ‘I remain grateful (Reader Discretion Is Advised)‘, I received the following comment.

Comment from Hungry Breton (Franck)

Hey man… I know that I have read your post a few days ago. It touched me; to a point that the other night, I dreamt about you and Garry, you had a hat on, kinda cowboy like, but not as extreme as Texas Rangers. You were in good humor, as you walked inside the hospital, we met as we were leaving. 5 years ago, my wife got a big “Mother” of a cancer; a stage 3, grade 4, a 10x10cm tumor on her kidney… Nephrectomy…. She survived, but our couple was never the same after, even if I think I was a good carer. She was never the same after, kissing Death on the lips would leave you like that. I admire her, I admire you, even if I have made my peace if – God forbid- it would happen to me.

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My Mother died of Cancer when I was 25, she was 49, cervical cancer, and a love for bad wine to drown bad memories. Destructive… I am not really sure where I want to go with this, apart from the fact that I feel blessed that our roads have crossed. You are a very brave man in so many ways, I respect people like you. If you guys fancy visiting our crazy Island one day, give me a shout. You rock like hell, Garry the helicopter guy rocks like hell, when I cannot even jump on a plane. Spread your arms, look at the sunset and scream: ” Freedom ya Mothers!!!” ‘cos you know what it feels like to be free… Fair play to you my friend… Fair play!!!

My response –

Franck, I read your comment yesterday early morning and several times yesterday and again this morning. It has taken me a day to respond because your comment had me feeling many emotions. I had to take my emotions and think about where they were coming from and why. First of all, I am sorry to hear about the loss of your mother and the experience both you and your wife went though. Life throws situations at us we are not always prepared for and we just do the best we can each day.

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For you to write you feel blessed our roads have crossed is the best compliment anyone could give. This blog is me writing down my experiences and feelings and emotions and for others to feel something and get something out of it – I am humbled and honored. Thank you for being a friend and being honest and sincere. I hope to one day take a trip to your island and meet you – what a privilege that would be. Have a happy day my friend, I truly appreciate you.

To Franck and each one of you – I am blessed our roads have crossed.

I struggle with the new me

Little over 4 weeks now since surgery, since the new me was created or updated from the old me.

Many of you know, I now have an urostomy bag on the outside of my body because I now no longer have a bladder.

These past weeks have me struggling at times, less with the physical part, though that can be challenging at times, but more with the mental part.   The changes to my body at times brings me to tears; what has taken place to me and how am I supposed to accept this?

As my body continues to recover and become stronger, I know too will my mind, my thinking and my attitude.

A couple of weeks ago in my post ‘my struggle with cancer‘, I updated you with the most recent information concerning my health and my cancer.  That post received many comments from you with your always welcomed support and encouragement.  Those comments, your comments have great meaning to me and bring me strength in more ways than you can imagine.

My friend Kat over at Time No Matter left me one of those strengthening comments –

IN my belief of healing and beating all odds…is first the positive attitude, and man do you have that one nailed down….your outlook on life up close and personal is so important to your healing….in my opinion of course, and its always right !!! lol second is your support group…you couldn’t be more supported if you were a pair of veins in good Ted hose…LOL you have a loving, caring, devoted husband, your personal family, Roxy, and then all of us…there isn’t a day that goes by your not in my thoughts !!!! We may have never met, but my friend I hold you near and dear !!! And then there’s your medical team…and I think you have a wonderful group of professionals that know their stuff….I know you feel the same as you have literally put your life in their hands and they are caring, loving, knowledgeable group of people…finally there is the sprit, social ideologies, we all believe in our own ways, no ones God, Goddess, Buddha, moon worshiper – whomever/whatever is better than someone else’s, but to me its important to be spiritual…and I know you are……you have cancer on the run….you are over a huge hurdle in your fight…..you’ve got this my friend….one day at a time…one moment at a time….danced in the sliver of a moon for you last night….sending you much warmth, love and moon beams……xxxxkat

I responded with the following  –

You bring tears to my eyes, because I know what you write is the truth. I have this past week have had my challenges mentally as I struggle to accept the new me and still the unknown that lies ahead. I find strength in your words and your friendship. kat, you are special – I appreciate you very much, thanks dear.

So, as you see from her comment and many others I receive, I have great support from you that brings great strength to me.  The physical strength is returning and with your help I know my mental strength will continue to increase as well.

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Big Day Monday

For over a year now, a long road has been taken to bring me to this point in my life.

A few words before the day –

Big Day Monday

(Note: my reference to the weather in Florida does not pertain to the whole state because a large portion is sunny and warm this time of year.  I am currently located in Pensacola, Florida and yes, it certainly does become cold here this time of the year)

Happy Year

Today 1 year ago, my post started with the following –

Happy New Year Everyone!

As I start this New Year, I first wanted to say ‘Thank You’ to each and every one of you that read my blog.  When I started this a little over 7 months ago I really had no idea where it would take me.  Really I was at a point where I was not doing much in my life.  At that time I knew my extreme Christmas decorating was not going to take place, so I had time on my hands to do something else.  And with me retired and not working, I have time on my hands.  So, what should I do?  I have always had the idea of writing a book about my life, I felt for me that was important.  But, deep inside I knew that would most likely not occur as I consider myself not a writer – I do not know where to start in writing a book.

So there I was last year with time on my hands and wondering what I should be doing with my time.  I could start a blog about me and my life; and that is what I did.  Would anyone read my blog about me and my life?  Would anyone really care about those things in my life that brought me to here today and a new year?  But I am not a writer; would people read and criticize my writing?  Should I expose the true me and everything about me?

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In today’s post, I write the following –

Happy 2017 Everyone!

The first day of 2016, I had no knowledge of what that year would bring.

The first day of 2017, I have some knowledge of what this year will bring.

I never write words that are not the truth and I never pretend to be something I am not.

This blog, my blog is about me and my life; my thinking, my emotions, my feelings, my experiences, and events that shape me.

I am privileged to have a platform to write and express me.

I am privileged to have a platform to read and comprehend you.

I write often ‘I appreciate you’, ‘Happy Day’ in posts and comments.

I do not have other words to describe my feelings for you who read my posts.

I will never have words that exactly describe my feelings for the support I receive here.

My wish is each of you have a year full happiness and whatever the journey you are on, that you never give up hope.

I will continue to write and post and I certainly will never give up hope.

I appreciate you, truly I do – happy year my friends.

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My mom, she worries

Today is my mom’s birthday!

Image1What can I say about mom, that I have not already written about here on my blog?

Oh, you may have missed some of my past words about mom?

Well, since you asked?

Here are some excerpts from past posts about my mom, a special lady in my life –

Post: Thoughts From Years Past.18

….I once called my mom pleading for her to leave work and come help me.  Mom was there for me, helping me get through a tough time as I found in the years to follow she would do on a consistent selfless basis.

Post: My Time in a Psychiatric Hospital

I looked forward to those visitations because each time I knew my mom would be there – not once did she miss coming to visit me.

Post: Thanks Mom!

My mom may not have always understood me and my actions; but she has always supported me.  She has never questioned my choices in life even when those choices were bad ones and she has always been there to help pick me up so I can continue to move forward. 

Post: Happy Birthday Mom

She was there for me in the most difficult dark days of my life and literally saved me and my life.  She has never failed to be available for me in so many ways, so many times, for so many years.

Post: Magnificent

My mom is splendid, grand and outstanding.  But more importantly she’s understanding, unconditional, accepting and loving.

In my post ‘Mother Mary‘, I wrote the following –

I made my mom cry the other day.  It upset me that she was crying; she was crying because she knows I am going to go through a major surgery to have my bladder removed and some other organs removed, and that my life will be different.  And, I guess as a parent we don’t like to see our child suffer; we don’t want to see our child struggle and we don’t want to see our child go through certain situations.

In today’s post, I want to conclude with the following words –

When I visited my family last month for Thanksgiving and it was time for me to say goodbye to my mom – I made my mom cry again.  Image3Well, I did not make her cry, she cried because she knew what was going to take place very soon.  Thanksgiving would be the last time my mom and I would be together before my surgery.  My mom, she worries – and so she cried when it was time to say our goodbyes.  I hugged her and told her not to worry, it all would be fine; it is all good, I will be okay.

I write this post, thinking she may never see these words, but she knows how I feel about her – I have never hesitated to let her know.

Love you mom – happy birthday!

Terry