Hospital!

Hospital.  noun.  An institution providing medical and surgical treatment and nursing care for sick or injured people.

For my recent surgery I had to have a stay in Dunedin Public Hospital.  Here I will document my thoughts and experiences related to this stay.  My last hospital stay was 8 days at Mercy Hospital, which is the affiliated hospital for Southern Cross.  It was pure luxury, well as much luxury as a hospital stay can be.  Comparing this to my stay at a public hospital was like going from a 5 star hotel, to almost a backpackers hostel.

At my pre-op appointment (which I think is another blog post in itself) I was advised my hospital stay would be anywhere from 5 – 10 days, depending on my progress, healing, pain etc.  I had a goal of being out of hospital before Quinn’s mum went home.  I went into hospital on a Tuesday and she was leaving the following Tuesday.  That would give me 7 days……could I do it?

I will go into the other stuff like surgery, anaesthesia, recovery in another blog post.  This is all about my stay in hospital.

High Dependency Unit

Right from the first discussions of this surgery my Surgeon explained that due to the complexity I’d need to have a 2 day stay in the HDU unit.This is where they put patients that need to have constant care and monitoring after surgery.  I later discovered I was put there due to the type of surgery and the epidural medicine.

So, I can remember arriving in the unit after surgery.  I think I had been in recovery for a couple of hours, but that was mainly just waiting for someone to move me.  I can remember Quinn being there, visiting for a few minutes, making sure I was ok.

The unit gives expert care to patients.  There are only 4 beds.  There is one nurse for two beds.  I think this model works well for most patients but it didn’t work well for me.  My main issue was I was in a lot of pain due to the epidural not working properly (I knew the risks before surgery that it might work perfectly or it might not work at all).  And, I couldn’t sleep due to another patient who was literally dying beside me (as far as I know he is still alive, but at the time it was touch and go).  Because he required more care than there were nurses, it was always busy in the unit, there was never silence, pain was a problem, I couldn’t move properly.

This is where hindsight is a wonderful thing.  In hindsight, I would never have taken the epidural, which would have meant I could go straight to a ward after recovery.  But, there was always that chance it would work, and my experience would have been extremely different.

I was admitted to hospital on Tuesday and on Thursday I was moved to the ward!

Ward 4A

So, Thursday saw me moved from the HDU unit to ward 4A at Dunedin Public Hospital.  I had tried to convince my surgeon before surgery that a transfer to Mercy under my insurance would be a good idea at this stage, but that didn’t happen.  But, luckily, I had 3 wonderful ladies in my room, who were chatty, happy and more than willing to help each other.  Without these 3 ladies my hospital stay would have been far, far worse.  There were other rooms where no one spoke to each other, had their curtains closed all the time, no interaction, nothing.  We had our curtains open all day and all night, chatted all day, and even in the night when none of us could sleep.

Another thing that made my stay a little better was the staff.  Sure, there were some downright awful nurses, but I also had some of the most amazing, caring nurses you could find.

Ward 4A is the medical ward for the hospital.  I’m not sure how many rooms but it is mainly full of people who have come from surgery.  It is a noisey ward.  It is a ward where every patient is checked with 3 hourly obs.  And medication is given at the correct intervals so to keep on top of pain relief.  And obs are never at the same time as pain relief, so you get to cat nap the whole time you are there.

Hospitals! Where they provide a bed for you but don't let you sleep! Click To Tweet

Nurses

So, back to the nurses.  Nurses, in my opinion, run the hospital.  Although, there was normally a Dr floating around the ward due to the nature of people there, the nurses did the hard yards.  Now, there are a lot of different types of nurses. (now, this is only my opinion, so don’t take this the wrong way).  There are nurses who absolutely love their job and love their patients.  I had a few of these.  Nothing was too much trouble.  I went through some pretty traumatic, soul destroying, humiliating experiences, and most of my nurses never blinked an eyelid.  It was all normal to them.  Nothing was ever a problem.

I will always remember three nurses who will be forever in my mind.  One took great care of me when I first arrived in the ward.  She was there every 30 minutes for the first few hours to make sure I was ok, to make sure I wasn’t in pain, to make sure I was comfortable.  It was amazing.  I can’t really remember the HDU nurses….I think I tried to block that experience out of my life!  Then one night, Friday night, the lady cross from me, her and I had the same nurse.  A Male Nurse.  He was just wonderful.  Nothing was a problem.  He helped us both with having a wash, checking wounds, getting meals and extra drinks, medication, everything you could think of.  He was fantastic.  I could rave about his nursing skills for ever.  His name was Adam.

And then on my last night, well the afternoon and evening, I had the joy of having a lovely nurse called Sue.  She was a gift from the heavens.  She was totally disgusted that I hadn’t been walking by then (this was Sunday afternoon).  I should have been out of bed and walking a few days before, but it just hadn’t happened.  Anyway, she helped improve my mind and body so much in her short 8 hour shift that I was able to go home the following day.  If it hadn’t been for her help I’m sure my hospital stay would have been another few days.  Sue helped me out of bed, got me a walker to walk the corridor, helped me have a shower (up until then I’d just been having a daily wash beside my bed).  Oh, it was bliss.  That shower was one of the hardest things to do (showers are really exhausting after surgery) but it was like heaven.  She even went to the trouble of finding me shampoo as she knew I would feel a million times better if I washed my hair!  She was right!  I will be forever grateful to Sue.

Food

I can’t comment too much on the food.  I was on a liquid diet for most of my stay, so I can comment on the liquid diet.  It was horrendous.  I was supplied with as many Ensure drinks as I could tolerate.  This was not too many.  There were two options.  A juice based and a milk based.  I tried the juice based one first.  It was tolerable but after 2 or 3 I’d had enough.  It took me a day or so to drink a whole juice, which was around 250 mls.  Once I became a bit more hungry I opted for the milk based one.  It was just as horrible but I tolerated it, small sip after small sip, with about a 30 minute break in between.  Then I started getting hungry! Like really hungry!  So one night I attempted to eat the rest of my liquid diet.  It consisted of asparagus soup (in the middle of winter), jelly and ice-cream.  I never eat jelly.  But that night I was so hungry I ate it.  Then in the morning I needed extra.  I asked my nurse if I could have some food.  She kindly bought me two pieces of semi-toasted white bread with butter.  I managed to eat half a piece but I felt so satisfied after that piece!

I was able to lay eyes on some of the meals, as I had three room mates who were allowed to eat proper meals.  They weren’t too appetising, some were downright disgusting looking.  Normally there was 3 choices….a beef, fish or chicken.  I am sure if you were vegetarian you would have been helped, and after seeing those meals, if I have a next time I will opt to be vegetarian for my stay.

Your stories

I would love to hear about your stories and your hospital stays.  Please feel free to share your comments below.  I hope it wasn’t too horrendous or you, and you have all recovered well.  Did you get your own room?  Did you have some great roommates like I did?  Was it a short stay or a long stay?  I’d love to hear from you.

A CT Scan: What happens at your appointment!

 

A side view of myself from the CT scanner

This is my take on a CT Scan.  What happens to me.  My experiences.  

On 11th April, exactly one year since my original bowel surgery, I was due to meet with my Surgeon for our yearly check up.  I couldn’t believe it.  One whole year.  Anyway, a week before our meeting he had arranged for me to have my yearly surveillance CT Scan.  A CT scan is nothing to be afraid of, it is a painless experience, except for a few extremely common side effect to the contrast.

 

A CT SCAN

A CT scan (computerised tomography(CT)) is a donut shaped machine that is used to take a series of x-ray images from different angles around your body.  These x-rays create cross-sectional images, or slices, of the bones, blood vessels and soft tissues inside your body.  It is a lot more details than a normal x-ray.

 

PREPARATION FOR A CT SCAN

In preparation for a CT scan, they like you to have a fairly empty stomach.  As such, you need to stop eating 3 hours prior to your scan.  Its all good though, you are allowed water.  You have to drink a lot of water.  One litre in the hour prior to your scan…..but, unlike an ultrasound, you are allowed to pee.  Oh, the first time I had this I didn’t read the instructions properly and thought I couldn’t pee.  It was painful.  But, second time round I knew better.  The reason for a lot of water is to help flush the contrast out quicker after the procedure.

 

NO METAL!

As a CT scanner is magnetic, no metal is allowed.  I’ve been allowed to leave rings on, as most times my hands have been above my head on the scanner, but other than that, everything has to be removed.  And, you get to wear one of the awesome, really sexy, hospital gowns that just about strangle you if you are not carefull when lying down.  Yep, been there, learned that mistake.  Always hitch your gown up and loosen it around your neck before lying down.

 

THE SCAN AND CONTRAST

A CT scan is a fairly painless experience.  You lie down on the bed, and move through the scanning machine.  They send you though once, without contrast, then once with contrast.  Probably takes about 10 minutes all up.  But, the contrast is kind of strange.  Anyone who has had it before will warn you.  

The contrast is injected through a needle into the vein.  They put the needle in place before any scanning takes place.  Once ready, they release the contrast.  It takes maybe 30 seconds for the tube to be empty.  In that 30 seconds you will feel a range of experiences; mine go in this order:

  • First I get a hot flush, normally over my upper body.
  • Second I get a weird taste in the back of my mouth.  It is kind of strange, metallic type taste.
  • Third, you feel the contrast moving through your body.
  • Forth, you feel like you are peeing your pants.  No kidding.  It is quite scary the first time.  You are certain that you have peed your pants.  It is very real.  But, it is just the contrast coursing through your body.

All this takes about 30 seconds and then it is all over.  Done.  Get off the bed.  Get changed and out.

There are no lasting side effects and the contrast works its way out of your body through the kidneys.  You can go about your normal daily business.

So, in a nutshell that is a CT scan, and the process.  Not scary.  Not painful.  Not uncomfortable.  One of those things that has to be done.

Until next time…..

Chemotherapy – my experiences.

Chemotherapy – my experiences.

When it was first suggested to me that a course (8 rounds) of chemotherapy would be beneficial to my health I was horrified.  Actually, I didn’t really comprehend what this was all about, as it still hadn’t sunk in that I might have cancer.

Chemotherapy!  How horrible is my life going to be?  What is going to happen to me?  I’m going to be very ill for the next 6 months?  I can’t sit at home and throw up for the next six months?  I can’t lose my hair?  Horrible, horrible thoughts…..all day, every day….until I met with my oncologist.  Dr Chris Jackson.  What a lovely man.

Anyway, as we were talking about chemotherapy and what I needed, and why I needed it (it was basically a “just in case” treatment to clean up any cancer cells the surgeon might have missed), I was starting to come around to the idea, but not entirely.  I needed to do my own research.

So, after a week of research, another meeting with the oncologist and numerous calls to the cancer care nurse I started chemotherapy.  I was to do 8 rounds of what is known as CAPOX.  This is a combination of 2 chemotherapy drugs, one given through an infusion over 2-3 hours at the hospital, and the other is a course of tablets, taken twice a day for 14 days.  Then a week off.  It is known as a 3 week cycle of chemotherapy.

I have written about my first week on CAPOX here, it was a pretty harrowing week.  But I got through the first week, altered my dose with the oncologist, then, quite frankly (compared to a lot of other people in the world) sailed through the next few rounds with minimal side effects.

Sure, I did have side effects, but they were all manageable.  My main one was fatigue.  Some days it was a struggle to get from my bed to the couch, and other days I had this unknown energy surge.  But, all in all, the fatigue just got worse and worse.  The week between chemo treatments is there for your body to recover from the previous two weeks, and get well enough again to start chemo the following week.  It got to the stage that my body just didn’t recover in that week off, and I was still tired and drained when starting my next round!

One of the side effects with CAPOX is the infusion, which is called Oxaliplatin, is that it attacks the nerves.  Most people get this in their hands, feet, mouth.  The tingling starts in both hands and makes it hard to touch anything cold or metal.  You need to wear gloves all day long.  Anyway, the Oxaliplatin attacked my nerves, but at the surgical points in my abdomen.  It was attacking the healing nerves from surgery, so for about 4 months of treatment I had constant pain in my abdomen from this.  Not cutey cutey!  But, it meant I could still do things with my hands, so it was one of the things I put up with.

With CAPOX, the medical professionals like you to get as far as you can through the rounds before they will consider dropping the infusion, mainly due to the side effects in imposes.  Most people make it to round 4 before the infusion is dropped.  I did round four then it was decided, due to some neuropathy that was starting to creep in, my infusion would be dropped (and I was only on a half dose) and I would just stay on the tablets.

This was such a relief, as when you have the infusion you need to take Dexamethasone, a powerful steroid that is used as a equally powerful anti-nausea medication.  It is horrible.  I was so happy, not that my infusion was dropped from my drug regime, but that I wouldn’t need to take any more steroids.  They really messed with me, my mind, and my sleep.  As well as being an anti-nausea medication, they induce insomnia.  So, while you really need as much sleep as you can so your body recovers, the medication prevents you from sleeping.  It is not very win-win.

So, all in all, I was happy I got through most of my treatment.  Some people are unlucky in that they only have one treatment and react so badly that it is better for them to not have chemotherapy as the side effects are just too horrendous.

My list of side effects included:  fatigue, pain in the left elbow, insomnia, tingling in the left hand, numbness in both feet, peeling skin on the soles of my feet, tingling at healing surgical sites, numb lips (but only in the center 3rd, not the outer parts), blurry eyesight, anxiety (this developed during chemo, never suffered beforehand).

Never once did I feel nausea.  I think this was because I followed the instructions to the tee, and always took my medication on time.  After 3 – 4 rounds, I only had the anti-nausea medication for the first few days then was fine.  I did suffer constipation regularly, as this is a side effect of one of the anti-nausea medications.

So, in a few words, that is my experience of chemotherapy.  There are much harsher drugs out there, for different cancers, that do different things to the body.  My treatment was solely for colorectal cancer (bowel cancer) and purely as a “clean up” “just in case” measure.  Sure, it was tough, and many times I thought about giving up, but it is just one of those things you have to do!

Take care everyone.

Life In General.  Ups and Downs.

Life In General. Ups and Downs.

So, I thought I might start writing a wee bit of the past and bringing it to light.  This might be a bit jumbled up for a while, as I go through a few subjects I want to embrace and let you all know about.  Certain medical procedures I’ve been though, the mind games that go on, the prep involved with some things, living with a diagnosis of bowel cancer etc.

I want to bring this blog to highlight the struggles that go on for some people.  Not only me, but others as well, and also highlight how prevalent bowel cancer is in the community.  It is not just an old person’s disease anymore.  It can strike anyone, anytime.  For me, it struck me when I was 38.  I had no warning, no symptoms, no history (and that is the scary thing, most people have no history).

With having no family history, after a lot of investigation, reading, researching, talking to my surgeon (who ultimately said there was no cause, it was just bad luck), I have come to the realisation that I have to make some quite significant lifestyle changes to halt the bowl cancer in it’s tracks and make sure my body does not provide a comfortable breeding ground for it.

So, in real life, I have to change a few things.  Some things are easier than others.  With the help of my medical professionals, a naturopath, a massage therapist, and all my cheerleaders out there, I will take you on my journey to better health, better wealth, and a whole new lifestyle.

Sure, it isn’t going to be easy.  There are easy parts to it, like some basic food swaps, not drinking alcohol, not smoking (things I never did in the past), and there are a lot of hard steps, like giving up dairy, limiting my sugar intake, upping my vegetable intake, changing the quality of food that I eat, only eating red meat once a week, upping the amount of fish I eat!  And then, after all those changes there are the mindset issues that go along with this.  How am I going to live without dairy for the rest of my life?  How am I going to eat less sugar?  How am I going to only eat red meat once a week?  How?  How?  How?

Well, it’s going to be a long slow process, and recovery.  Over the years I have done a lot of damage to my body and now it is time to heal it!  Slowly!  The slow tortoise wins the race remember.  And after chemo (which is a complete brain fucker by the way (sorry for swearing but there is no other way to class it)), it has to be a slow process.  My brain doesn’t work the same anymore (I will go deeper into this in another blog post), but for now, changes have to be made slowly.  And this is also a great way to make the changes stick.  If you change everything in your life in one day, you start to get the feeling of deprivation, the feeling of overwhelm, the feeling of missing out!  Slow changes mean forever changes.

Now, that was a story and a half wasn’t it!  Right, got that all out of the brain and written down.  I’ll be back next week to let you all know about life after chemo!  It is certainly a rollercoaster if ever there was one.

Music.  My Daily Therapy.

Music. My Daily Therapy.

Music. Music is such a powerful healer. It can help to turn around depression. It can help heal the soul. It can lighten your mood. It can motivate you. Music is such a wonderful healer.  

And along with music comes singing. Daily singing, whether you are good or bad, has the ability to boost your immunity and clear your throat chakras.  

Before last Winter (when I was just at the beginning of my chemotherapy), a good friend of mine, Sarah from BodyMana Wellbeing – Pilates & Nutrition posted a video about different ways to clear your throat chakras and boost your throat immunity so you don’t suffer over winter. I truly believe that singing can help this. So, every day I sing. I’m not good at it, and no one is around when I do sing, but I sing. I am prepared to do most things to boost my immunity.

Recently I have also found a medical journal article that shows through some studies how music and singing has helped cancer patients.  It states that:

Studies have shown reductions in anxiety, improvements in mood and reductions in cardiovascular measures such as blood pressure. However, to date there has been little attention on the impacts of music interventions on biological markers of endocrine and immune function. There is nevertheless evidence to suggest that music interventions could have a combined effect on the mental health and immune function of people affected by cancer.

Most of the research I have read relates to choir singing, and singing for an hour at a time.  I, for one, am not at the moment going to join a choir, so I’ll continue to rock on to my own tunes, and probably over a day my singing equates to one hour, but not all at once.

While I definitely support the use of traditional medicine in the treatment of cancer, I am a huge advocate of natural therapies alongside traditional treatment, as long as these are discussed with your oncologist (although I’m sure that if you bring up the topic of singing every day with your oncologist, I’m sure you will get a few sideways glances and glares).  Although at present I have no cancer (that I know of) floating around, and am not undergoing any current traditional treatment, I am all for other natural therapies to help boost my immune system and increases my chances that cancer will not return, cos we all know, that once you’ve had it, you have a high chance of it returning some day.

So, as I sing every morning to boost my immunity and also help my mental health and wellbeing, I’m going to post a song. Every day, at 7.30am, a song will pop up over on my Facebook page (follow me to listen) for you all to sing along to. It will be fun. There will be some old, some new, some funky, some cool. A mixture of everything.

Who’s in for a bit of singing?

(Let me know your favourite singers, songs etc in a message below and I’ll add them to my list).

Chemotherapy – the first round!

I had been programmed in to have 8 rounds of chemotherapy.  Each round is 3 weeks long.  This consists of one morning attending the Cancer Care clinic for my infusion of Oxaliplatin, then two weeks of tablets at home, then a week off.  I was happy with that!  Seemed easy!

Until the first round!

I attended the clinic as I was supposed to.  The way your chemo dose is measured is by body weight and mass.  Being my first treatment I received the full dose that was made for me.  Before receiving each infusion I had to take Dexamethasone and Ondansatron.  The Ondansatron I had no problems with, it’s anti-nausea.  I had plenty during my hospital stay.  Dexamethasone is a steroid.  I had lots of problems with this (although I didn’t know that until a few days later).

So, I have my infusion.  My eyes go all funny and I feel like crap.  Long drive home.  Feeling like crap!  I wonder if this is what each treatment is going to feel like!

That night, I went to bed.  Feeling like crap!  Couldn’t sleep for the life of me.  My eyes wouldn’t shut! I was wide awake most of the night!  Tried napping during the day but that didn’t happen either.  The next night, Thursday night, rolls around!  Went to bed!  Couldn’t sleep again.

Friday comes by and I try to sleep.  Feeling like crap!  Can’t eat! Don’t know if I’m Arthur or Marther.  Wondering what is happening to me!  Crying that I can’t sleep!  That I feel like crap! That something is happening to me and I don’t know what it is!

Phoned my Cancer Care nurse!  She advised I needed sleeping tablets.  It’s 8.30pm on a Friday night.  I live in a small rural town!  Well, by share will and good luck and kind heartedness, a local pharmacist offered to open up so my husband could go and get some sleeping tablets that were prescribed and sent through by my Oncologist.  Sleep!  I needed that!

Saturday rolls around.  Friday morning was my last dose of Dexamethasone.  I’d had a good sleep on Friday night.  Saturday morning and I’m still not sure what is happening.  I lay on the couch all day.  Like, I only move to go to the toilet and that is it!  I can’t move!  Everything feels weird!  I’m not sure if I’ve got nausea!  I’m not sure when I last ate food!  A bowl of cereal every now and then seems to be helping.

Saturday night sees me sleeping all night!  Thanks to the sleeping tablets!  Sunday!  Another day!  Today I learn that I’m having a steroid withdrawal.  It’s not pretty!  I wonder why people take these things as a recreational drug!  The withdrawal is awful.  I can’t say anything nice to anyone!  I know it’s not me talking but everything that comes out of my mouth is nasty!  And then comes the bad thoughts!

The deep nasty side of steroid withdrawal that no one ever talks about.  The wanting to end it all because it just feels so bad! Like life has nothing left in it for you!  The “I just want it all to be over” thoughts!   It’s not pretty.

Sunday afternoon.  Ring my Cancer Care nurse as I have left elbow pain!  It’s quite bad!  She advises it’s all ok.  Just a chemo side effect and to ring back if the pain moves.  Pain moves to my left shoulder.  Ring my Cancer Care Nurse.  She calls Oncologist who advises I need to go to A & E and have an ECG.  The Capecitabine can mimic a heart attack!  Great! Just what I needed!  After a few hours there it was home again! All was fine with my ticker!

Sunday night sees me sleeping well again.  Thanks to the sleeping tablets.

Monday.  Well, I could now fill a swimming pool with tears!  I don’t know where they come from!  They just keep coming!  All day! And all night! And on Tuesday they keep coming!  All day!  Steroid withdrawal is so nasty.

Wednesday I wake up and all is normal in the world!  I feel wonderful!  Steroid withdrawal is just a nasty nasty side effect from Chemo.  Along with all the other side effects I was getting, this was just the straw that broke the camels back.  I was not going to do another round of chemo.  I was not going back to the hospital.  That was it!  It was all over!  I gave it a go and it turned into the most evil place, what I would call the equivalent to hell, and I was never going back there again.

But I did go back!  After great discussion and persuasion, my oncologist and I agreed we would lessen the dose of steroids and halve the dose of Oxaliplatin (intravenous chemo) and see what happened next round! Compromise!

So, that was round 1 of Chemo in a nutshell!  It was one of the worst experiences of my life and has left me wondering why people take drugs like steroids as a recreational habit!  Is it for the high!  I don’t know! But I do know that if I ever need them again I will always ask if there is an alternative.

Until next time…keep smiling, it helps the world spin!

R xx

 

 

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