Week 19 – Friday/Sat – Enjoy the ride!

A lot has happened over the past two days.  When you get sick the team certainly come running and watch you very carefully.

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Looks all clear to me!

The chest x-ray taken in my room had been analysed and so far does not show anything of concern.  I have CT Scan of my lungs scheduled.

The tests from my diarrhoea showed up positive to a bug (that we all carry) so they carry out more tests to determine if it is aggressive enough for antibiotic treatment.

 

 

 

 

 

 

However because I had a number of temperatures over 38 (38.9 tops) the team have taken no chance with infections and have put me straight on to a dose of Tazocin antibiotics.  You may remember that in the early days I developed a major rash on my torso and this was thought to possibly be due to Tazocin, but after exhaustive allergy testing the VID team were happy that I have another go at it (under close supervision) and I’m back in the game with Tazocin.

This added with lots of the normal IV drugs and “Uber Eats” IV Nutrition has meant that my body weight has fluctuated considerably on a daily basis.  To counter that, yes you guessed it, another IV drug- Lasix, a diuretic, to encourage me to pass the fluids – which are measured daily.

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My Christmas tree is certainly a full house these days. We added a beautiful paper star made by Liz Dowling.

The biggest news of the day was the addition of the super self controlled syringe for the Morphine  (actually Fentanyl for me as the morphine has an effect on the kidneys and as we know my kidneys have already been stretched during the process………remember when you offered how you could help – how about a kidney donation!!!)  They call the syringe PCA – patient controlled analgesia.

Under this system the patient controls the delivery 24 x 7.  At last something I am in control of!  Its Great!  But the flipside is you have more hardware attached to keep you awake at night – the buzzers, beeps and sirens aren’t conducive to sleep.  But then again this drug knocks you out so that helps – perhaps too much at times.  Try writing a blog when you can only keep your eyes open 5 mins at a time!

I found it works quite well……….until a few out-riders.  This one appears to be all about pain management so the nurses will ask on each visit do you have any pains or headaches.  Standard greeting really – “morning…. any pain or headaches”.

Mind you in talking to our parents and friends this is a question we will probably all sadly gravitate to!

The nurses want a rating between 0 = no pain and 10 = unbearable.  Sounds easy but does 5 mean comfortable or in a lot of pain?  Apparently in loads of pain.

So my answer becomes 2-3 when doing light breathing and 6-7-8 when trying to swallow.

dad and the PCA button
Pressing the magic button

Now this is my conundrum – how can I keep the level of Fentanyl high enough to stop pain when I might be asleep for 1-2 hrs at a time?  The nurses answer is only press it when you need it.  My point is I need it throughout my sleep so when I wake up I’m not in pain and having to wait 30 mins for pain relief after I wake up.

My answer is simple – automation, I will maybe get the answer tomorrow from the “Pain Team Doctors” who are the anaesthetists who supervise the PCA process.

 

 

 

I have also done some Feng Shui rearrangement of the room to improve my view.

 

 

 

8 thoughts on “Week 19 – Friday/Sat – Enjoy the ride!

  1. Keep on keeping on Geoff Just an aside you may find interesting. The nurses that control that very complicated system of I V drugs keeping you alive and healing you, are paid a pittance despite uni degrees and Huge responsibility.

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  2. Hi Geoff
    Have been thinking of you….love that you are sharing your journey with us all xx your strength and determination is amazing
    Love Soph x

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  3. G’Day Geoff. My dentist Chris Bell suggested I follow your blog to which I have been doing now for a few weeks. After speaking with Chris again this week he suggested I introduce myself. Today marks 8 years since my allogenic Stem Cell transplant for AML INV 16 (my brother was donor also). While some of the treatments have slightly changed, the symptoms you are having as a result of the treatments remains very much the same.
    I’m sorry to hear you have hit the 2-3week blues, they can be pretty horrendous at times but know it’s not for too long. While you certainly have a challenging time ahead, the worst is now so you just have to get over this bump (aka mountain). You are a great writer and I hope to be reading your story in form of a published book within the next few years! Keep fighting the good fight Geoff and I will certainly continue to follow your journey and keep you in my thoughts. Happy to compare war stories with you anytime! Cheers, Celeste O’Brien

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  4. Thinking of you geoff and jan. Keep up your hard work geoff. It sounds like your being well cared for. Keep pressing that button. Lots of love Di and micheal Dawson.

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  5. Geoff you are an absolute machine. Brings into perspective all of the “problems” in our lives to see you soldiering through this while always remaining positive. You are an inspiration.

    Lots of Love
    Jack and the Gilfedders

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