Author: bobnroberts

I need to go back a year in my life to the few days before August 29th 2023.

     I was in our back yard trying to fix some fencing. Just some regular yard work for a 75 year old man.

     This work was done over the  last weekend in August. Sunday night I began to feel yucky and cold.  Come Monday I just had no energy and was both cold and hot.

     Monday night I had all the blankets on me and could not get warm.  I struggled to get out of bed to get to the bathroom.  Then in the morning my wife brought me a walker to get to the toilet.  The final straw was when I could not stand up from the toilet because of my swollen right knee. On the third try I agreed with my wife that she should call for an ambulance.

     I will leave out the details of the ambulance crew helping me and the trip to the emergency room but to say the least I was foggy and remember little about the transport or even that day. In fact not much memory of the next 9 or 10 days of my two weeks in that hospital.

     I had an infection totally in my blood centered on my right knee that had been replaced five years prior.

     An infusion of a very strong antibiotic directly into my heart was started . Surgery was done to debride some bone and check to see if the metal joint was still firmly attached. I do remember the surgeon asking me if I wanted to be taller. The flexible spacer used in the replacement needed to be replaced and it could be done with a bigger one,  I said NO. 

     The first week in the hospital I was very much out of it and remember nothing!

     Friends did come to visit and check on me in the hospital and rehab. I am so blessed to have those friends.

     Finally after two weeks in the hospital I was transferred to a Rehab facility  for an additional four weeks.

To be clear and direct, the infection came very close to killing me!

     Fast forward to August 18th, 2024 when I almost fell, bruised my left arm and right side catching myself. I also twisted my back and strained my right arm and shoulder.

  Took some tylenol after that plus before going to bed later. Was hurt but not bad. Mostly ache. 

Or so I thought!

      Sleeping was not easy and the first time I got up to pee it hurt getting up and walking.

Then the flashbacks to last August in 2023!

      I must admit that in my wildest dreams I never imagined I would first hand experience what might best be described as PTSD but the rest of that long night.  

BUT I did!

     The first time I woke up to go to the bathroom I thought it was spooky that I had most of the covers on me and was still not warm.  The room was very cold because I had fans ON blowing cold outside air in. My body ached when I moved but I thought little of it. Then I remembered last year.

     The next time I woke up I still was freezing under the covers so I put the last ones on to warm up. I was in more pain for my shoulders and left hip than ever. I slowly got up into a very cold room and even slower walked to the bathroom.

     Sitting on the toilet it hit me hard remembering last August. Anxious,spooked, scared it was happening again it was so real! I could see the walker in front of me so real but imagined. I was living the nightmare all over again.

     Unsure as to how I got back to bed but there under the covers I shook with fear for I don’t know how long but I did fall asleep.

      I woke to sunlight and warmth.  My fear was gone but the memory refused to stop. On the actual anniversary date, August 29th I Prayed it will not happen again.  I know that there will be other times it surfaces I fear.

     Today August 29, 2024

      My understanding of PTSD is now based on personal experience and I wish it was not so. I had a good night with no PTSD.

     Two things I know: Life is precious so celebrate it.  And memories both good and bad will always surface.

Of course everyone will think of Christmas and New Years when I say the title.

  Well not in this sense: Last week I started a Holiday from both my Cancer medications. I was convinced by the recommendation of my previous Medical Oncologist and my new MO that given all the great numbers and duration, 33 months of Nubeqa and almost 4 years of ADT that a Holiday was in order and in fact could be surprisingly positive. First would be a return of Testosterone a plus on energy. Then when good numbers continue life could be less of a Damocles sword life.

  Unknown as to how long for T to return or how much it could rise to given my soon turning 76. This birthday is kind of a milestone. I have already surpassed my mom, 65, and dad, 67 but with this birthday am older than my only sibling, brother was when a stroke took him at 75. Next will be my maternal grandmother who was 80 when taken, also by a stroke. After her will be my paternal grandfather who was with us until 93. There is one more but that will wait until 4 years from now when I am past my grandmother in age.

  Now for some recent background: August 29th, 2023 I was taken by ambulance to the local Emergency Room for emergency surgery on my right knee due to a major Strep infection in the joint and in my blood. I was messed up big time.

  Surgery included opening up my knee like done for the replacement done in 2018. They looked for bone involvement and did do some debridement but also included the soft part. Before the surgery the doctor asked me if I wanted to be taller because he could replace the soft piece with a thicker one. I declined.

  Then the team flushed 10L of antibiotic through my knee then closed me up. The next day they did similar flushing but arthroscopic, holes in my knee. I was still messed up.

  Spent two weeks in that hospital then was transferred to ReHab 45 miles away for six weeks. But insurance changed the time to four weeks. A bit early but i managed.

  ReHab was a very different experience. The needed me to work at physical therapy hard. Took a week to get me going but I did. Made friends with the support staff, very nice ladies.

  Ok, so now PT at the local gym and doing well. Walking often with no cane and endurance still stinks but hopefully testosterone will help with that. So my MO says.

  Will update in few weeks.

     This is the time of year that we see friends, old acquaintances, and new people.

     Friends are those we have connected with in the past. Old acquaintances are those that we crossed paths with sometimes  in the far past, and new people are just that, new to us.

     Friends can be from the distant path like ones my wife and I have from High School back in the mid to late 60’s.  Yes I am that old.

     Old acquaintances are those of any time frame that we met but did not click with as friends. Could be age difference or just not able or willing to connect. No harm.

     New to us are those that we cross paths with professionally or in voluntary acts or even through casual encounters.

     I am leaving out the required meetings with medicals seen often and connected with. They are a special group for another Blog Post….soon.

     Each of these have a common thread; Us  the individual. We choose either consciously or unconsciously to create a thread of commonality, a connection of sorts between us and them.

     There is an amazing thread for all these connections. The desire to be understood and cared for. This is what inherently makes us who we are.

    I have seen this with kids that act out or are always in trouble. Often in their home life the only time they get attention is when they get yelled at. So in school they act out to get the attention they crave.

     The same applies for adults. Needed attention is sought in the way that works. Type of attention doesn’t matter

     Now during Holidays we all need attention. Love of family is sought in various ways.  Traditions created long ago when either we or they were young. New traditions created along the way. Just plain different gatherings and dinners with special foods.

     Friends join in with remembrances and shared memories of other holidays. As we get older memories of those lost in time. Our long time friends have lost their parents as have we. Father and mother actions and sayings rambled out and shared are fun and nice to hear.

     Acquaintances bring in their own special tone. Often similar to family but often very different. Change is good and refreshing. Differences can be celebrated.

     New people also offer special things and often chaotic interactions.

     We need to remember one thing: December Holidays are very special. A celebration of life and the ending and beginning at midnight of what we wanted and what we hoped for.

So let me say Merry Christmas and Happy New Year!

     More often than not those of us that are in Hospitals, injured, afflicted with a deadly disease, or recently disabled are put in the position of making those around us Feel Better.       You can recognize this when you hear the patient say – I will be OK, or Things are not that bad.

Often that is true when the person has non-life changing issues. Broken hand, arm, leg, etc. for example. 

     When the diagnosis is a level that presents a life change: loss of limb, loss of function, deadly disease, like Cancer, or mental function the interactions with those around us becomes very different.

     Patients need to feel normal, safe, and unchanged. This is part of their reaction form called grief. 

The usual steps of grief are: 

• Denial: No I don’t have a problem.
• Anger: No, not me!
• Bargaining: If I do this then……
• Depression: Why me, why now?
• Acceptance: I get it so will work on it.

     Do we all do each step? No. In order? Not really.  Only once per step? Nope.

     In my opinion each of these steps, with the exception of Depression, include some level of the patient making an effort to comfort those surrounding them.

     Maybe it is because the other person(s) don’t know what to say, say the wrong thing, assume the worst, or simply ramble about nothing. Personally I have experienced this on two occasions at least. Both family members. Both passed shortly after our last encounter. Hard lesson for me on how to interact.

     The latter was while I was on a Cancer remission. I actually had learned the basic tenet of being quiet and for a previous job. He had trouble speaking as he had a stroke but I mostly did remain quiet unless reacting to what he said. As simple as it sounds it was an extremely uncomfortable skill to demonstrate. I wanted to reassure him, comfort him with positive outcome statements but knew in my heart they would be false. 

     The few words we did share were of remembrances of our younger years. To his credit he did not express any of the above noted steps of grief. At least not when I was there.

     Now step into my reaction with my recent, 2nd, Cancer. It is not curable, only treatable, and although aggressive not to the stage, yet, ever?, that would take me out.

     I stepped right into Acceptance with a few, still, short bouts of depression. While accurate to call it depression I was only being honest with myself realizing that at 72 my life time was not the 50 plus years as it was when I had my first Cancer. And some of that depression was triggered by the country’s turmoil with SARS-Cov-2 and political division.

    Friends, some family, and neighbors that are framily (friends/family) check on me and my wife. Often they simply ask How are you?

     So what am I recommending or offering up?

     Even though you know the patient, no matter how deeply you know them, you do not know where they are mentally. What state are they in or for that matter stages of the grief cycle. They themselves might not know.

     So do something that is very difficult.  Tell them you are there for them and truly mean it.  Then comes the really hard part – be quiet and listen to them!

     Being quiet gives you the opportunity to watch them and react if necessary.  They might want to talk so let them, they might want to watch TV, again let them. While watching TV they might laugh appropriately or not, but join them laughing.

     The hardest part is to be quiet if they are quiet. They are processing. How they feel about their situation and about how they feel about you and your being there. When they are comfortable with you eventually they will talk.

     Do not be judgemental or contradict them. Just listen and respond if they ask. Unless you are a medical professional skilled in their situation do not offer advice. Just be there for them!

     To be there for them is work, to be quiet is hard work, and to not judge or offer opinions is even harder. You must be sincere and if you say you will do something then follow through.

     So back to the initial question: Why must the patient make others feel better? Mostly because the other person doesn’t listen to the patient and says sorry or the like. We patients try to comfort them and be normal.

Patients need support, sincere and consistent support.

Mom Nature sure is playing with us this winter. Warm, cold, warmer, colder the below zero at night: hit 11 below last week!

I can easily say that those with Cancer have thoughts and feelings, (moods), that swing in similar fashion.

For the people we contact that do not know of our Cancer and its stages or progression they might not notice or see what we are dealing with. Of course some are less able to deal with the Cancer and some are better.

Both better and less able present to the surrounding public similarly. Masking the inner workings of our mental and often physical state of being. Our fears and pains are well hidden. That is what our Society expects. Yes, we can tell them we have Cancer and field any questions but most of the time our response is “I am fine, doing well!”

I can state that I really am doing well. Given, now starting my 7th year since diagnosis. I am also now 7 years older, birthday soon, and the frailties of age are coupled with the effects of my treatments that mirror each other. Simply put – Yuck!

One thing I can say is I adapt, adjust, accept, and do not struggle. I know what I can do and cannot do. Yes I push myself and sometimes fall into the frustrated or more easily frustrated moods. Just ask my wife.

What my point it; Never assume that the person you work with, meet, or interact with doesn’t have problems or issues. Most often just listen or accept what they present as who they are.

Reflect on what you have going on in your life and how other cannot see it. Try to be the person you would like to have around you as family, friends, coworkers, or daily contacts.

The roads we each travel are similar but how we handle that travel can be arduous and effected by those along the way. Be a good effect on the travels of life.

Pretty sure some of this is a remind or restating but here goes. Feb 2021 I somehow broke my right knee cap. Well just this past Thursday my ortho had xrays taken that showed it finally is healing fully. His wonderful NP gave me the news. She was quick to say she had good news.

On another note my Prostate Cancers marker, psa level, is so low as to b non-detectable by the lab. Of course my testosterone that feed my Cancer is also that low too. Fully intentional because of my medicines.

So even though my energy level stinks I am doing well and quite Happy.

Remember that your attitude makes all the difference in your life. So a positive attitude makes life better and the treatments work better too.

Like I used to tell my students “If you think you can or think you can’t; You are right”.

We recently traveled a 24 day driving round trip to Las Vegas. We spent some time in interesting places, talked & interacted with some good people of all types and backgrounds. And I mean all types!

One common theme of all this is there was no anger or envy simply nice, polite, and interesting people.

One time at breakfast in the hotel a trucker struck up the conversation with me. We spoke of his work, my retirement, and life in general. I do not want to say this but we were different in many ways including visual.

We were equal in his eyes and in mine just different reasons for meeting. I learned more about truckers in just a few minutes than I did before that time.

In another place, Iowa, we had a conversation started because of our NY state plate. We were kiddingly asked if we were lost. Answered then spoke for a few minutes about where we were and where headed and learned a bit about the area.

Some big places, Vegas, Denver, Salt Lake City, and some small places; Ouray Colorado population 998. This last was also the county seat!

I will try to recount somemore but have done so on my Bob Roberts Facebook page. Look for the two Cancer ribbons.

The title says so much more that the simple wording.

Used to be that in a few places we expected to be reduced to jut a number. Post Office lines, Motor vehicle department, pretty much all government lines, military, to name just some.

However in this year of Corona/Covid/SARS-Cov2,the last being the real name, we have progressively been pushed through the steps of face masks, social distancing, closing businesses, shutting churches, banks only drive thru and online. large businesses limited to number in attendance all intended to slow the spread of the virus.

We all have gotten used to the Social Distancing while having our faces hidden by masks or other coverings. We now shop online or sit in our cars waiting to have our needs dropped off.

If we go into stores we rarely say Hi or interact with others, just store staff and that rarely.

Family & close friends are in many ways absent, many are fearful of the virus to the point of avoiding others and even wear the mask alone in cars or when walking. Many people are doing the bidding of the Health Directives placed on us to keep us safe. Some very few not.

With a mask voices are muffled, facial features are hidden, and the person is minimized.

The result of all this is we in many ways are just a number.

This can be mitigated if we take the effort to talk clearer to those near us. Be social, but safe, and above all else listen.

Listening to someone gives them the opportunity to open up.

Listening quietly gives them the opening to Share. Being quiet while listening then the speaker fills the silence with their words.

Often we hear that ¨Caring is Sharing¨ and listening to someone quietly is caring for them.

Be Safe; Be Healthy but care for others and they will care for you.

Well, I need to say this: I plan on writing a second book about Cancer and include a brief update on my experience with Cancer.

Book #2 will keep the same title but a different sub title. Title still Pink isnt the only Cancer but sub titled Collection of other patients interaction experience.

I need to be clear that the actual treatment is not necessarily part of the story but the way the patient (and caregiver) were interacted with. The actions of medical staff and how they talked, answered questions, and supported is what I am looking for.

What I want to do is give a voice to the patient/caregivers a voice to express their feelings about the process. And maybe show the good and not so good.

The ultimate goal is to compile a book for the medical staff to see how to improve and help the Cancer community.

Please connect with me if you have a story to tell. I need to share and help.

Pinkisnttheonlycancer@gmail.com

One thing I know about my life its that things happen, stories are told and asked about. People come into our day and give us an opportunity to learn.

The only thing we need to recognize is each of these happenings is a wonderful and possibly a great experience for learning. About someone or ourselves. Not always a good experience however but something to learn from.

We all have the ability to ignore or just not hear things around us. We are focused on us. To the point that all around us is lost in a fog. Lost opportunity for sure.

The other day I was working in a local school and at the end of the day after the students left the other adult in the room and I chatted. She shared a story about a relative and her experience with Cancer.

As she tells it her relative went to her doctor because of a swollen leg and was diagnosed with arthritis. She was treated for that and didn’t get better but not worse. Her doctor was a long time practice, stand alone, doctor that both she and her husband went to.

After she had several falls due to her leg she went to another doctor and was eventually diagnosed with Cancer. Now I did not ask the kind as it was not germane to my research.

After diagnosis she was treated by several doctors involved with a local hospital but eventually got a second opinion at a National Cancer Institute. They treated her but were not able to help her.

During all this she suffered horribly and gradually got worse then passed in miserable pain.

My point on this story is that you must Trust your doctor plus make sure they understand all your problems. Sounds simple? Right?

Well many of us believe that our doctors are all knowing and never wrong. Plus if we were to seek a second opinion the doctor will be hurt and mad. Or not treat us well.

She trusted her first doctor to know everything and be aware of all possible things related to her health. She trusted the doctor because she had always seen him but for minor things.

My take on second opinions is: if your doctor doesn’t like you getting a second opinion then drop them. If they get mad: run away quickly.

You need to Trust those that have your health and most likely your life in their hands. You need to know them to trust them so interview them just as much, or more so, than they interview you. If they balk tell them you need to know them to build that trust.

Also you need to understand that doctors DO NOT know everything. They specialize in areas of human health. Primary Care doctors know about common things that affect our health. The really good doctors know what they don’t know.

You don’t ask about family but you do open the door to who they are. Getting this makes you feel good about the person, who happens to be a doctor, helping you. This goes double for your second opinion. Or maybe a third opinion.

If you can take away anything from this post know this: Trust your doctor only after you get to know them and get second opinions from another that you trust. And be sure to ask questions.

There are no guarantees in life and certainly not with our health and life but we can do better if we try.

The best patients are the ones that ask a lot of questions.