Hospice & Home

Last Monday’s post ‘Cancer will take my life‘, I wrote the following –

Cancer will take my life.  I have always referred to this cancer in my body as my cancer as it does not belong to anyone else.  My cancer will take my life.  Those pictures associated to last Friday’s post revealed just how much my cancer has taken over and my fight is coming to an end.  My body and mind are worn and it is time to prepare for what is ultimately to take place.

The family visits of past weeks are over and my body is tired and mind is ready.

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Image Provided by: Harbor Light Hospice

Hospice will begin this week and changes will take place in many areas for both Gary and me.  If you read my post yesterday, starting this week; the amount of posts will be reduced.

In today’s post, I write the following –

Now being home for a week, I feel much better being back in my comfort zone.  I am thankful to have spent time in the hospital, because I needed to be there.  I need to be home also, and I am certainly thankful to be back here now.

This past week I have I received much needed rest and Gary and I have started new routines based on my Hospice care.  The nurses and other associates with Hospice are wonderful and I feel very comfortable in their care.  This past week, though at times difficult both emotionally and physically; this past week, the transition felt right, certainly felt needed and I was ready for it.

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Emotionally I accept where I am in my life, what is left of it and honestly, I am ready for the end.  I know others are not ready for the end; it is coming and I find myself at times wanting to look at a calendar to see what date that will be.  I have no date, and find at times I am frustrated with not knowing.

Physically my body is beaten down by my cancer and as each day passes, so does some strength, flexibility and mobility.  I preform exercise at least once per day and sometimes twice to help slow down the deprivation taken place in my body.

Now that I have a ‘G Tube’ inserted into my stomach, I no longer eat by mouth.  All my nutritional needs are through IV as well as my pain medication.  Remember I also have a urostomy bag that collects my urine and along with all other outside aids, I have lots of tubes coming and going from my body.  I also recently was put on oxygen due to shortness of breath and the amount of effort it takes me to do small tasks; such as changing positions.

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Gary is here beside me always willing and able to take care of me with the small tasks to taking care of changing my nutritional IV that requires changing on a daily basis.  There are many other daily tasks he does to help make my life easier.  I eat lots of ice chips and if it has flavor, then it is like having a treat every day.  So, Gary makes sure I am stocked on ice, popsicles and the like.

The first week with Hospice has gone well and I am grateful to be home.

Mishaps

From my post ‘The new confidence‘, here are some excerpts –

‘….. I wrote about my struggles with having a urostomy bag on the outside of my body.  As the weeks pass I am learning to cope and accept this new reality. ‘

‘Past weeks had me hesitant in going anywhere I did not have to go because of my fear of ‘leakage’ from what is now an extension of my body – my urostomy bag.’

‘With different manufacture products tested by me; there were some trials and errors that took place and incidents that were frustrating and embarrassing.’

‘…a learning process has taken place for both Gary and myself with regards to the supplies needed and process of maintaining and replacing this new extension – my urostomy bag.’

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Image Provided by: http://www.dogingtonpost.com

In today’s post, I write the following –

The post I just mentioned I published on February 24th of this year.  My urostomy bag must be changed often.  There is a method that is followed and equipment required for maintaining my urostomy bag.  At home the maintaining is easy and usually scheduled.  But what about being in public away from home and a mishap occurs?  When I use the word mishap; I am referring to my bag leaking.  I literally have had urine draining down my leg in public.

I have had 2 major mishaps regarding my urostomy bag.  Because these mishaps can happen, Gary and I have to be prepared for them.  In the truck is a bag that contains everything needed to remove, clean, and replace my urostomy bag.  And just in case the mishap is major, I also have another bag with a change of clothes.

I wear my clothes differently now because of where my stoma is located; my urostomy bag is positioned at my waistline.  Because of this, my boxer shorts are worn high above my waist and my shorts need to be very loose and worn below my waistline.  The urostomy bag collects my urine, but also will collect gas.

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Image Provided by barkingroyalty.com

Generally, this works out the best for me while I am out and about in public.  Concerning driving, I must place a small pillow directly on my urostomy bag and the seatbelt over the pillow.  This will place less pressure on the bag resulting in less likely that is will leak.  I have confidence being out in public and the previous mentioned mishaps thankfully were taken care of without much fanfare.  My hope is these mishaps rarely occur; but when it does, I am prepared.

My blog, I have always been truthful about me and my life.  The good and bad, the ups and downs and the in-betweens.  I hide nothing here as it is important for me to be honest and write about my experience with something that many people will never understand.

I write these types of posts, because one day those that do not currently have access to this blog, will read this and will hopefully understand what I went through.

boat slip

My category ‘Pictures & Stories’ are posts with me writing a fictional, creative short story about a picture.

boat slip

boat slip –

He informed her: ‘I told you this would be a lost cause!’

She responded: ‘Well, what can I say; this is the address they gave me.’

They both were distraught and tiredness was wearing them down.

The address was correct, it was the correct marina, but what was the boat slip number?  There should have been more information given to them at the time, but nobody offered the information they needed.  The slip number was needed and no one knew it.  As they walked amongst the boats, they knew their efforts would be futile.

He again informed her: ‘We need the boat slip.  I told you this would be a lost cause!’

She responded: ‘Yes dear, I know that.  Now let’s go!’

expectations

As usual the month of December rushed through with a fury and if you blinked, you missed it!  Christmas and New Year’s Day came and went, and before those holidays; Gary and I took a cruise to the Eastern Caribbean.

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Last week in my post ‘to whine some today‘, I let you know of my follow-up visit with my Urologist Dr. P. that resulted in my ureteral stent being removed.  During that visit, pre-surgery documents were signed and Dr. P. made time for Gary and I to ask questions and discuss details and expectations of my surgery that will take place a week from tomorrow.

To review; my upcoming surgery is Radical Cystectomy, please read my post ‘My Message‘, as it includes detailed information about the surgery.

Here are some expectations concerning my upcoming surgery –

The surgery is performed using robotic assistance, but if issues arise a traditional ‘open’ surgery would be performed.

Surgery could take up to 8 hours to complete.

Once surgery is complete, I will be in ICU for several days.

I will be in the hospital up to 10 days or longer if issues arise.

10-15 lbs. of body weight loss is likely.

A long recovery of 2-3 months will take place.

How do I feel about this surgery, the recovery and the change in my life?

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I have many mixed emotions leading up to this surgery.  I think back when this all started over a year ago, when I noticed a discoloration in my urine.  This was followed by a diagnoses, blood and imaging tests, procedures, 2 minor surgeries, more blood and imaging tests, more procedures, chemotherapy, still more blood and imaging tests and procedures and many, many days of experiencing pain.  The pain continues today and the upcoming surgery will end the current pain only to have me begin experiencing new pain.  The surgery pain should be short lived, but the recovery will be much longer.

For the rest of my life, I will have a urostomy bag on the outside of my body to collect urine.  This entire concept will be something I will grow accustom to over time.

I will have a period of recovery not just physically but also psychologically and emotionally.

With this surgery, my body will have less organs and a new way of life will begin.

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Sleep

Okay, it is known the importance of sleep; sleepfoundation.org has the following –

Researchers have also shown that after people sleep, they tend to retain information and perform better on memory tasks. Our bodies all require long periods of sleep in order to restore and rejuvenate, to grow muscle, repair tissue, and synthesize hormones.

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Image Provided by: Dreamstime.com

For the past several weeks or more likely about a month now; sleep has been difficult for me.  What caused this and how do I get back to sleeping good again?  Back in September in my post ‘The lab experiment‘, I wrote about having a medicine cabinet overflowing with medications I am unable to pronounce the names to.  Since then, I have stopped taking many of those medications and only take the necessary ones that are needed during this time of chemotherapy treatment, recovery and a benefit to my overall health.

About the same time, my inability to have a good night’s sleep started.  Could it be that these medications were helping me sleep?  My guess is yes, they were helping.  I have for most of my life had issues sleeping and for many years dealt with this by drinking.  I have not hidden my drinking habits here on my blog; some of you may remember these posts I wrote about my use of alcohol:

Addictions or Habits or Routines

My Life My Way

Drink, Drink, Drink

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Image Provided by: Clipart Panda

Upon my cancer diagnosis and the treatment plan, I stopped drinking on a regular basis, and now with taking only the medications that are essential in my recovery – my sleep is affected.  Without something to aid me, my usual sleep habit for most of my life is back – basically insomnia.  Several weeks ago, my Oncologist Dr. D. prescribed me medication to help with the sleep.  The medication did not help at all and I continued to have sleepless nights, so I stopped taking that medication.

Without alcohol and with the reduced medications; my body begin to respond not only with insomnia, but also it started experiencing internal shakes.  After some research, I did find that for some people, chemotherapy treatment can have a side effect like Restless Leg Syndrome (RLS).  I feel this is what I have experienced in the evening specially when I go to bed, which aids my insomnia.  My mom experiences RLS and with my dad having Parkinson’s Disease, there is a possibility I am experiencing something similar if not RLS itself.

I have spoken with my Oncologist Dr. D. about this and the result is an additional medication for RLS.  I started taking this medication and it does help with the internal shakes but did not help with the insomnia.  I then decided to also take the medication specifically for insomnia.

Another effect on my sleepless nights is the fact I prefer either total silence or a constant humming noise.  I recently started using an app on my phone that makes the noise of a ‘fan’ blowing and now I use it by playing it all night.

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Image Provided by: Clipart Panda

I like the constant ‘fan’ sound and it along with the medications are helping me have a good night’s sleep, once again.

Ton of Sun & Fun

In my post ‘5 days, and more‘, I concluded with the following –

We are here in Pensacola, Florida our 5th day and the location is perfect as we are within walking distance to the beach.  The surroundings are relaxing and peaceful and the quietness is welcomed after living in the city of Dallas for many years.

The original planning for our travel adventure is on hold for now until after the surgery and recovery.  My feelings are, most likely my recovery will go into the fall and then with the holidays and winter; the travel adventure will start next Spring.

5 days, and more to come.

In today’s post I conclude with the following –

We are now in Pensacola, Florida for 3 weeks, here is proof –

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5 days, and more

In my post ‘’let’s do’ time‘, I concluded with the following –

Our new way of living also brings more ‘let’s do’ time and less ‘have to’ time.  I no longer ‘have to’ clean a pool on a daily basis.  I no longer ‘have to’ trim bushes and grass, mow a lawn and water plants.  I no longer ‘have to’ clean 4 bathrooms and clean a 3,800 sq. ft. house.  We now ‘let’s do’ a quite walk along the beach.  We now ‘let’s do’ take time to explore a new area.  We now ‘let’s do’ have a relaxing life in an area with less traffic and less noise.

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So for today, we learn a new way of living in our new home in our new location.

More ‘let’s do’ time and less ‘have to’ time.

In today’s post, I begin with the following –

We are starting our 5th full day here in Pensacola, Florida.  Today is an important day in that I have my first doctor’s appointment here.  My appointment is with my Primary Care Manager at which time a referral will be submitted for a urologist visit; hopefully sometime within a week.  Several weeks ago, I faxed a portion of my medical records from my previous urologist Dr. F. in Dallas; I wanted the Primary Care Manager here to be aware of my situation.  My hope is this would place an emphasis on the importance of receiving a referral as soon as possible.  The completed medical records will be delivered today.

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Gary’s younger brother lives about an hour away from Pensacola and we spent some time this weekend visiting him and their mom.  I have written several posts about Gary’s mom who is 93 years, suffering from Dementia and living with Gary’s younger brother.  It was nice to spend time with them and to have this family nearby.

In the coming weeks, Gary and I will grow accustom to our new surroundings, our new change in lifestyle and create new routines and meet new friends.  I will also begin the new journey to take care of the cancer that is in my body.  Additional doctor’s appointments will take place and a plan will be put into action.  After my first appointment with my new urologist I will have the information I need to proceed in the coming months.

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We are here in Pensacola, Florida our 5th day and the location is perfect as we are within walking distance to the beach.  The surroundings are relaxing and peaceful and the quietness is welcomed after living in the city of Dallas for many years.

The original planning for our travel adventure is on hold for now until after the surgery and recovery.  My feelings are, most likely my recovery will go into the fall and then with the holidays and winter; the travel adventure will start next Spring.

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5 days, and more to come.