Saturday 18th October - Johnny is HOME

Finally, and I mean finally - Johnny was discharged from ICU to come  home.  Friday evening.

Home is a fabulous word - say it out loud to yourself.  "Home".  Home is one's base, comfort zone,  castle, kingdom, where no one can touch, prod,  wake you up at all god hours for surgery, temperature checks, blood checks, bleeping machines constantly going all night.   "Home".  Johnny is thrilled to be home.

We are now set up for 10 day's of intravenous antibiotics as well as oral.  Johnny has his P.I.C.C Line inserted.  The nurse came this morning, explained what I will be doing.  Yup I finally get to be a nurse, without the outfit . . .

Incredible set up.  Sutter Home Infusion want the patient and care-giver to be comfortable at home.   They will take weekly blood work,  co-ordinate with the doctors, change dressing, be on call 24-7.  

Late last night medication was delivered,  two large boxes one for the fridge and one for room temperature.  I peeked in, an array of goodies.  Snapping the box shut I did not want to know, until the nurse arrived in the morning, upon arrival,  she  matronly gives me a tray.  I look at the tray which has  several pictures for explanation and instruction.   Alcohol Syringe Saline Flush Medication Cleaning Saline Flush.   Big FAT Syringes. I can't just push the medication, after I open  up the line I have to with syringe in hand push wait push wait push slowly-slowly into the P.I.C.C  Line.  Johnny is ever so patient.

Completely overjoyed Johnny is home, but I am sorry zero visitors.  We cannot jeopardize his immune system, he is weak and slow and spends his time sleeping.  We have to allow him the rest.  

Keep sending the emails and Halloween photographs he loves to see them.

Once again my Rock Kavie von Husen - has been with Johnny and I every day all day for these last 5 days.  I would not have made this horrendous week without her.  It's not just the medical support and following up with the doctors, I caught her today folding our laundry, cleaning, putting items away for me.  Running the medical errands and picking up for me.    Cuddling Bubble n Squeak and Dragonfly & Jellyfish.  

Thursday 16th October, 2014

Good evening,

It's Thursday night and our Johnny is still in ICU.   His Chest Port was removed late Wednesday night.  The first chest port as you will recall, was removed due to infection and now the second chest port has been removed due to the cause of the main infection.   This, however, does mean no chemo.  Or no chemo for quite a while.  It is essential the body  recovers from this assault before he can even think of having chemo again.

We hope to have Johnny discharged Friday lunchtime.  Our fingers are crossed, we wish to the stars we hope deep inside we give strength to ourselves of positive energy  "Johnny shall be discharged tomorrow".  But.  And yes there is a but.

He will be released with a month long P.I.C.C Line of  antibiotics.  Which cannot be taken orally, must be through the vein.  A nurse will come twice daily to administer the medication.   

His body has gone through pure hell these last few days, he  has a long path to travel, remember we nearly lost him Monday night, again the Doctors reiterated this to him.   After  days of lying in bed we had to get his legs working, stimulated and walking.  We went for a jaunt around the ward.  I had to pretend there was a Ferrari waiting downstairs for him.  Funny his stride picked up slowly, albeit moderate hesitant steps.

We are keen to be at home together, a little normality, if that is at all possible.

Thank you for the emails of support, love and strength.  He needs it. 

This is for you my darling, darling Johnny: "You will never walk alone".

Below is his all time favorite:  Liverpool Football Club Anthem.

When you walk through a storm, hold your head up high
And don’t be afraid of the dark
At the end of the storm, there’s a golden sky
And the sweet, silver song of a lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on, walk on
With hope in your heart
And you’ll never walk alone
You’ll never walk alone

Walk on, walk on
With hope in your heart
And you’ll never walk alone
You’ll never walk alone

Attached is a Video - you probably will not be able view on an iPhone go to a computer:
Turn your volume UP - Take the time to listen

Wednesday 15th October - LIFE

Life. 

Life does not prepare one for when we leave school.  Life does not prepare us for venturing into the big wondrous wide world.  Life does not help one decide a college or university to enroll in, let alone a choice of career path.  Life does not prepare you for motherhood.  Life has changes and turns with horrible unjust twists for us all to experience one way or another.  Indeed we have all experienced something, which makes one appreciate Life.   The tiniest detail in Life one appreciates a gentle dew drop on a flower, a spiders web slick with dew, a happy lick from a puppy, a baby’s firm grip on one’s thumb, sharing one’s favorite ice-cream.  Giving a good friend a hug, telling her you love her and one will be there for her. The tiniest experience in Life one appreciates and one is grateful. 

My last blog I mentioned Johnny would be on a 6 week of chemo due to the tumor and cancer shrinking.  False hopes, and  happiness that the chemo was doing it's job.    As of today Bobby has said Johnny's body is completely unable to handle the aggressive chemo.  Which is why she changed to a 3 week cycle and then a 6 week cycle.    

Today I am grateful to have another day in our Life with my darling dearest husband, Johnny.  Johnny has been in ICU since Monday afternoon.  I am so lucky to have him, you are lucky to have him around as your friend.  He could have left us all very swiftly Monday night.  Honest but true – strongly reiterated by the doctors here.  

Monday afternoon Johnny had one of the more complications and side effects called “Neutropenia”.   White blood cells are part of the body’s defense against infection.  When one say’s one is “Neutropenic” this means one has a low white blood cell count and one’s body's inability to fight infection may be impaired.  

Johnny started with uncontrollable shivers, teeth chattering body shuddering, along with a soaring temperature of 104.00.  Bobby was called and we were advised to go to ER.  Upon arrival, a series of questions and checks were taken. Hooked him up to three drip bags to hydrate the body. Nurses, Doctors buzzing around him.   It took three hours to get his temperature down from 104 to 98. Then came the bad news.  We were told he has no white cells a total count of 0.4.  Nothing.   Along with low-low-low blood pressure.    Blood pressure should be 120-over-80.  Johnny’s  was 64-over-41.  Dangerously low.   Gradually over night and over the course of Tuesday it increased slowly 74-over-42, 79-over-45, 83-over-47.  He was definitely in his boots (deep in the mud).

The second number needs to be higher it’s “the” indication blood is pumping throughout his body to his brain and organs, pumping-pumping blood.  Johnny’s was too low, with huge dehydration and fever it is indication of infection. Sepsis. Sepsis is a life-threatening illness that overwhelms the blood stream with bacteria. It is caused by an infection that can start anywhere in the body.  Cultures were taken and were positive for infection.  Now they need to figure out where the infection is.

A decision was made to keep Johnny overnight for observation, three days to be precise, if not longer, along with blood transfusion to be done overnight.  Monitoring his blood pressure and heart every 15 minutes.  Currently he has a series of EIGHT cables plugged into him along with the blood pressure device strapped to his leg. 

Tuesday, today he is anxious to depart, he believes I tricked him coming into the hospital, thinking it was just for blood work.   Funny boy.  Johnny has some recollection but it’s hazy or with heavy gaps in memory.   His actions are significantly slower, one would like to think that’s from the heavy medications they giving him.

As I sit here with gloves and mask on watching him rest, murmuring away he takes me down memory lane to when we first met in 1983 at Earls Court Station, London.  In that era I was a “Fame” Look a Like and Johnny dressed fashionably as a Duran Duran drummer. 

Johnny will not be up for visitors, you would have to glove up and wear a mask, to protect his immune system. No  Halloween parties.  But you can always send him your love and photographs and support via his email: johnnypye@yahoo.com  he does read them and appreciates you taking the time to write him, he is your friend too as well as my dearest love. 

I can’t thank Kavie von Husen enough.  Kavie has been my rock, my support.  Been with every step of the way since 4th July. Attending all the meetings of doctors and nurses.  Being in the field knowing the right questions to ask, thus we have clarity on Johnny’s health.  

Currently we are advised to take on Hospice or AIM.  He will need home care as he is a fall risk.  Decisions will be made in due course and of course Johnny will be part of that decision. 

Tuesday 30th September

Good afternoon,

Yesterday we met with Bobby,  I do feel we can call her on a first name basis now,  given our forced friendship don't you think? 

It has been a grueling three weeks for Johnny, no bounce back whatsoever.  Bobby explains  it's the chemo which is  "accumulative".  Trying to get Johnny to eat something sumptuous has been dampening, small mouthfuls, bite size mouthfuls of a morsel here and there.   Two Sunday's ago I cooked him a typical English Sunday Roast with all the trimmings - Yum.   His eyes gleamed and he devoured as much as he could.   Yes he has food desires, from his Chemo bed yesterday, he asks "can you get me a burger",  I look at him in horror,  "you want what and with onions too".  Burger or not he can only eat small portions. 

 

Chemo Day yesterday was pretty punishing, his body has extreme   temperatures from hot to freezing cold, along with  heavy incessant sweats.   The sweats are the toughest to handle physically and emotionally, severe weight loss along with the onerous task of  changing  bed linen on a daily sometimes twice daily basis.   Last Monday he had a  temperature of  103.  I find myself constantly slapping my hand against his forehead, he looks up at me in shock,  rolling his eyes, saying "little one what are you doing",  I ask fiercely  "are you hot why are you so hot" or "are you sure you are not cold, shall I close the doors".  "Do you want a blanket" "let's change your t-shirt you are sweating". " "Are you hungry shall we snack, oooh how about some ice-cream".   I  will do absolutely anything to keep my darling Johnny as comfortable as possible.

Currently swallowing is the hardest, right after Chemo his jaw up to his ear clamp/tightens up.  He has to massage his jaw on a regular basis in order to swallow the endless pills, glug juice or even eat. 

Chemo without a doubt has it's drawbacks, the good  the bad and the ugly.  The side effects are truly horrible to watch, no matter how one is prepared this is truly an arduous road for him.  But my Johnny, your friend Johnny we all, must  applaud him for being so terribly brave to go through this. 

 

Our tumor(s) are shrinking or shall we  say they have been "stunned" but note this is not "remission".  Johnny's lifestyle balance, quality of life has been shot to pieces.  Repeated conversations with Bobby to this effect, a decision now been made to have chemo every 6 weeks.   It seems Bobby had a game plan after all.  Wanted to ensure his body could take the aggressive form of chemo and stun  the tumors/nodules for a quick period of time and thus pull back on the chemo, upon good results.

But one cannot say how quickly the tumors will grow back.  They are not going away.
But for a small grace period of time Johnny can have  quality of life and enjoy the Autumn and his all time favorite theme of the year "Halloween".

Lee Carter Pye will be arriving this Thursday for several weeks here at the house.  Lee is Johnny's son a strapping 6ft 2' of a lad.  Will be nice to have him around.  Haha - I might even enlist him to walk Bubble n Squeak!

Do keep sending emails of support, strength and love to Johnny at,  johnnypye@yahoo.com 
Don't be offended if he might not respond, it's due to lack of energy and less of a fight in him but he does read your emails.

Given the weather changes this comes with germs and bacteria.  Please be mindful when you do visit that you do not have any snivels, use the hand sanitizer as you enter the house placed conveniently at the door for your use.