newsflash: port, or no port

My appointment with the surgeon, Dr Densai lasted all of five minutes.

‘Since you have already started chemotherapy and have cytotoxic drugs in your system, there is a high chance of further complications and infection by performing the surgery. Unless your oncologist is happy to delay your next round, I am unable to recommend this as an option for you.’

‘Ok. I understand. Thanks for making the decision for me,’ I replied a little too excitedly.

*shakes hands*

*out the door*

The New Regime

Since when do you need a Plan B for chemotherapy! I wish I could muster up some statistics as to how often this happens, but given how varied the world of chemotherapy is, I wouldn’t even know where to start.

I would be extremely grateful if Plan B was completely out of my hands and I could sit back and let the specialists make all the important decisions. I am not ashamed to admit: I hate making decisions. Big or small, I cringe when faced with options. My decision-making skills have been put to the test in the past few months: where to have treatment, what type of surgery to have, and how to live life during treatment. Every day I wake up and have to decide how I wish to live the day: couch potato, or the naughty-girl-pushing-limits. I will be honest and say that couch potato has won more often than not lately, I’m learning to be ok with this.

It’s not only major life-changing decisions that can unrattle me: a simple meal can cause sweaty palms. Ordering a meal with friends proceeds in one of three ways: someone orders for me and I am pleasantly, or not so pleasantly surprised with the meal presented, we pick a few options with the intent to share (I have friends who were not comfortable sharing in the past. We’re still friends, they now share.), or I need to know exactly what everyone else has selected before I make my executive decision. “Food Envy” is a an issue not to be taken lightly.

I think you can grasp how I feel about decision-making.

So back to treatment…

I have tried my best to be the good patient. I was happy to sit there quietly, for 4 rounds, every 3 weeks…but alas…it’s wasn’t to be. Just when I thought I had all my ducks aligned in perfect formation, with one sweeping hand-bomb-dive, the naughty big brother, Life has pushed them back into the bathtub. A little dramatic?

So what now…

Fast-forward to today. I have just received news about my new treatment regime. My oncologist has kindly taken time out, in Paris, to review my situation.

Her recommendation: 9 weeks of Taxol (the gentler of the T’s). It has the same properties as the drug I was reacting to previously, but smaller doses, weekly, should eliminate the issue of my blushing *laughs*. Let’s see…

The only forseable problem, for me, is my oncologist doesn’t feel it necessary to have a port implanted. As the port may not be implanted until next week, it wouldn’t be usable until the following week. She feels it’s a ‘big’ commitment to have surgery, and a possible scar for only 6-7 weeks of usage.

How do I feel about this? My veins are silently crying at the thought of 9 weeks of needles, twice a week – at least (if they get it first go!). I have an appointment today with the surgeon who would implant the port. I will see what magical advice he can enlighten me with. A good friend once told me, if you are struggling with a decision, you need more information. Let the research begin.

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the girl with the red face

I had a completely different blog in mind for today. However, today did not go to plan, again. My chemotherapy regime is going to have drastic changes from today onwards. To explain these changes further, here is a run down of how today played out.

My appointment was booked for 9:40 to review my blood test results with my oncologist. There is always a wait, so the oncology coordinators tend to mingle with the patients in the waiting room, asking how we have been, how we are managing with the treatment…etc..etc…

The coordinator I have dealt with the most, Jana was eager to chat to me. She had a few exiting things to tell me. Firstly, I had popped up on her Facebook news feed! Last Sunday, a photo was taken of myself and sister, along with one of her friends dressed up in a Pink Bunny Onesie. My sister is still fundraising for the Walk to End Women’s Cancers that she participated in recently. Donations were offered if her friend walked around Riverlink Shopping Center, for an hour, in the onesie. Strangely enough, Jana’s husband is friends with the guy who snapped the photo (that’s you, Trev, if you’re reading this). Secondly, a lady who was already in receiving treatment this morning, had asked who else was coming back today. “Is the 22-year-old back in today?” she asked. I am the 22-year-old! Bless…nothing like having 10 years knocked off, especially whist receiving treatment.

As usual, on arrival, I weigh myself. The quantity of drugs administered is worked out on your body weight. I hate to admit it, but I have put on 1.9kg’s! Last round I weighed 63.5kg, this round 65.4kg. I could easily pass the blame and say it’s from the chemotherapy and steroids…but let’s be honest…I’ve just been eating too much cake. Story of my life.

The bump-and-grind of chemo day finally started at 10:20 when the doctor called me in. My usual doctor, Dr Niara Olivera was away this week – she’s in Paris for a work conference, doing it tough I’m sure. Today I was greeted with another oncologist from the Mater, Dr Jim Coward. Dr Coward is a big, burly, African man with a posh English accent. I do miss the English accent. We discussed my blood test results from Tuesday. This indicates if I am “healthy” enough to receive treatment today. I am not going to lie, I was a little nervous about the ‘ol WBC’s. Hearing “your white blood cells are high enough for you to commence treatment today,” was music to my ears. The meeting was short and sweet and after 5 minutes, “let’s crack on” was his closing speech. Shakes hand. Bye.

What comes next?…

Where to sit. Unfortunately, I don’t get to choose where I sit, the nurses do. My heart started to race, my palms became sweaty with anticipation. I was getting nervous about WHERE they were going to sit me, more than knowing poisonous drugs were about to be injected into my veins! Mother and I followed the nurse. I felt like I was walking on tiptoes, as if walking silently through the ward would work in my favor and the angels above would pick a different suite for me, anything but SEVEN. Gently, quietly, one foot in front of the other, we continued following the nurse. Today was a full-house, all I could see was a lot of full chairs…all except SEVEN! NOOOO. I explained my plight with the number seven to the nurse and she advised five would be free shortly, if I wanted to move. We decided to give seven one more try to redeem itself. I don’t like to be difficult. The nurse guaranteed me if any issues occurred today, they would never sit me in seven again, ever!

Let’s crack on! Cannula in – first attempt – success. Phew…Pre-meds administered. The Phenergan was given to me first, so I “shouldn’t” have another reaction. Within 5 min’s I was sleepy and slurring.

“What’s your name and D.O.B?,” asked the nurse. This is part of their checks to ensure the correct drugs are administered to the correct patient.

“Roshellllle Vaisanennn, 14 Ougust 1981,” I replied, or tried to reply.

Off I drifted, eyelids fighting against the medicine to try and stay awake. Even though I was sleepy from the Phenergan, it wasn’t enough to hide the symptoms of a reaction. I remember the feeling all too well. I was quick to recognise them again: tight chest, flushed face, and stabbing pains down my spine. How was this happening again! They gave me drugs to stop this happening. Mother was quick to call the nurse over. By then my face was as red as my red skinny jeans. I like to coordinate, but not that much.

So here we go again…counter-drugs, halt IV infusion of Taxotere and recover. This caused a lot of discussion between the nurses and doctor. There was a stop-work-meeting, all about me. I don’t like to be fussed over, but I guess this is an exception.

They decided that I can not, nor should not, receive Taxotere again. My body keeps reacting to it, and they have not been successful in controlling this. The suggestion is to switch me to another drug. The new drug will contain the same properties as Taxotere, however it is administered weekly! I have heard that weekly chemo is actually easier as it is in smaller doses – let’s see. So today I only received half of my prescribed chemo regime – only Cyclophosphamide, the “C” part of TC.

There are other implications that go hand-in-hand with weekly treatment. Needles, needles, and more needles! I am generally ok with needles, but having weekly blood tests and cannualas for the next 2 months is not going to be favourable for the health and well-being of my poor veins.

There are two options given to chemotherapy patients to assist in destroying the veins through treatment: a PICC Line, or Port-a-Cath.

  • A ‘PICC Line’ is a permanent cannula put into your upper arm. It’s not the most practical of options: you have to cover it when showering, and NO swimming. No thanks! Hello, it’s SUMMER.
  • A ‘Port-A-Cath’ is a small port implanted under your skin in your chest. It’s implanted under general anaesthesia – more day surgery *cringe*. The only major downfall is it can be visible under the skin and a small incision scar may remain. I’m actually not too bothered by these details. If it means not having to worry about needles for the rest of treatment, book me in.

As my usual oncologist is away, we need to wait for her to approve the change to my treatment regime. If she does, I should be booked in next week to have the Port implanted, then commence my weekly treatment next Thursday.

As the ward is small, most of the patients catch on pretty quickly to what’s going on with other patients. Two ladies, who had been there during my last treatment – when I also had a reaction – and also went red in the face, expressed their sympathy for my bad luck. “You went a little red in the face, again.”

This is my new nickname at the hospital. The girl with the red face.

Time to keep rollin’ with the punches. Relinquish control, accept the setbacks, and CRACK ON!

Round 2… DING DING

Are you aware that each course of chemotherapy is referred to in ‘cycles’ or ‘rounds’? I tend to use the term ‘round’ more often than not when discussing chemotherapy with others. One round is from when you go to the Oncology Ward and are injected with the nasty-cell-killing drugs, until the next time you repeat this process. It also includes the period of time that is considered your “rest” between each treatment. The rest period and the number of rounds varies from person to person and from cancer to cancer. For me: it’s 4 rounds, every 3 weeks.

In other cancer patients, this treatment plan is considered “lucky” – there is enough time to recover and feel “normal” before the next hit, and 4 rounds is the minimum treatment used. WIN, WIN.

It’s very hard to know what to expect when you start chemo. You may experience all of the side effects, or only a few (nausea, vomiting, body aches and pains, tiredness, mouth ulcers, digestive problems, taste changes…just to name a few). You may feel the effects immediately, or in the later stages. Chemotherapy drugs can have cumulative effects – the first round you still feel healthy, the next you don’t recover as quickly – your energy levels are affected a fraction more, the next is a little worse again, and the next…etc..etc

So if you’re wondering why I am still cycling and running hill sprints – this is why…the first round hasn’t hit me too hard. Although we all know now I need to be more cautious of my physical activity when my WBC’s are low. *smacks hand*.

So, taking all this into account, I can’t help but make a comparison between chemotherapy and boxing. Boxing? YES, boxing…

To ensure I wasn’t going completely bonkers by making this comparison, I spent some time with my trusted old friend, Google. I found this description of boxing that I feel cements my theory.

“In the early rounds of a fight, boxers figure out what their opponent’s strong points and weak points are, and then try to find a winning strategy, taking into account their own strengths and weaknesses as well. As such, boxing is very much a “mental” contest as well as a physical one…”

Ok, maybe I haven’t quite convinced you just yet. Let me continue…

Although I have never been in a boxing match, I have considered it in the past, and trained by some extremely talented boxing trainers. I learnt all the moves: jab, cross, hook, uppercut, duck, slip (is there any moves I have forgotten?), but unfortunately for me, I don’t have a desire to punch someone in the head…and let’s not mention my two left feet.

If, however, I was a boxer…I hope this is how a typical first round would play out…

Round 1 – full of energy and a few nerves, quick on my feet, moving easily, alert to my opponents’ moves – what combos they use, defence is still strong – I react quickly to their attacking 

DING DING

Break – pep talk from my support, a quick rest and re-hydrate

DING DING 

For me, the first round of chemotherapy was much the same. Every day I felt I was alert to what was happening to my body. What moves did my opponent have in store for me, and how would I react.

So what happens next?…

I go into round 2 with the same mindset as would a boxer. I will accept the knocks to my body, but keep mentally strong. It may be harder than the previous round, but with determination I can make it to the next.

Side note: If any of my ex-boxing trainers are reading this, I hope I have done it justice. I may have to get out my gloves and dust them off.

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Hair loss: the loss of hair from head and/or body

The medical world amazes me. You’re told hair loss usually occurs from day 14 after your first round. Yesterday, was day 14. Yesterday, my hair started falling out. Amazing.

In no way am I worried about my hair falling out. If anything, I’m excited. Why? Because it’s another milestone – going bald brings me one step closer to the end. Also, I have become addicted to running my hand over my shaved head, imagine how nice it’s going to be bald!

There are two more pros associated with the hair loss: I finally get to start wearing my selection of scarves and turbans, and for the next few months, a lot of money will be saved on waxing – and I’m not talking about underarms. *wink wink*

My trusted barber, Man, has come back today to run the clippers over my malting head. We decided to go with ‘no gauge’ this time. The best way to deal with hair loss…have as little hair as possible. Done.

Another package was perfectly timed today – I received a stunning designer scarf!!! Eager to make use of it, I decided to try some tying techniques. Lucky for me, my personal barber doubles as a very talented photographer. And the result…

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Neutrophils, Neutropenia and Neutropenic.

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I like learning new “big” words. My vocabulary has increased significantly since being diagnosed. My whole life, I have always been rubbish at word games – I would choose a game of Backgammon over Scrabble any day! Maybe in six months time, I will feel more confident in the Scrabble arena. Let’s just hope “chemo brain” doesn’t get the better of me.

So, some further insight into why I ended up in hospital on Sunday. The purpose of chemotherapy, is to kill cancer cells. Unfortuantely, along with cancer cells, white blood cells are also affected – this is not a new development…it’s a heavily researched and proven fact.

Ten days after your first round of chemotherapy, a blood test is taken to measure your ‘neutrophil’ levels – neutrophils are a type of WBC, whose job is to fight off bacteria and infection. If they are dangerously low, you qualify for an injection that will help boost your WBC’s, so they don’t get dangerously low again. This is all well and good, but you have to get through your first round to see if you qualify, and I had to learn the hard way about HOW dangerously low your WBC’s can get. I ended up in hospital ON day ten! When I went to hospital with a fever, my neutrophil levels were ZERO! Zip, nil, cero, nada…my body had no defence mechanism to fight off any nasty germs or bugs. I was told many times I was suffering from ‘neutropenia’, or I was ‘neutropenic’…same same. Two more big words – tick.

So how many neutrophils does a healthy person have? In the context of the figures I am working with, a healthy person should register with a count between 2.0-7.5 (there is an equation to work out per litre…but let’s keep it simple). After 24 hours in hospital my levels had risen to 0.16. You are usually kept in hospital until your levels reach AT LEAST 0.5, as this is the minimum your body needs to be able to do their job of fighting infection (this could take another 48 hours!). After much discussion, and since I was “feeling well” they decided to let me continue my isolation at home, and the medical team would come to my house to continue with blood tests and monitoring. Minor Win.

After another 24 hours at home they had risen to 0.4, let’s hope by tomorrow they have surpassed the 0.5 mark, and I will hopefully be discharged from my house arrest…just in time for the weekend.

Although it was very worrying for a lot of people to know I was in hospital, it’s all too common after your first round of chemotherapy – my Oncology team came to visit and assured me of this. There is no way of knowing exactly how your body will react to chemo, the first round is the “guinea pig round”. It’s safe to say I definitely qualify for the WBC booster – hopefully this shouldn’t happen again.

Lesson learnt for myself: Day 7-10 – stay away from public places as much as possible.  This is when your WBC’s are at their lowest. They tell you these things, but it’s hard to grasp to what extent you need to be cautious, especially when you are not feeling sick!

I had started to think that maybe they hadn’t given me enough drugs during my first round, as I hadn’t experienced many major side-effects. I can banish those thought now. It’s secretly nice to know that the drugs are working and killing any nasty cells that may be playing hide-and-seek.

Side note: I hope this blog gets the tick of approval from all my medical friends.

Hospital Stays VS Long-Haul Flights

After 56 hours and approx 8 unfinished movies (I always fall asleep before the end), I couldn’t help but feel I could have completed a round the world journey. There are many similarities to being stuck in a hospital and stuck in an airplane.

Apologies to my non-flying friends if you don’t get as much amusement from this as the others.

My observations on both…

The Cabin: In hospital you are provided with a nice comfy bed, a touch of a First Class no matter what your budget. I was a private patient in a public hospital, I am not sure how beds would differ if I was in a private hospital – better quality plastic covering? My bed was so old-fashion that it had to be wound up and down with a lever at the end of the bed, technology upgrades definitely required. As I was in isolation, I was lucky enough to have my own room…oh the luxury!

The Food: Hands down hospital food is economy class standard…actually worse. I would happily eat (and I have many times before) a tasty economy curry, however in hospital, I found it hard to finish my meals. People know I like to eat, and I’m not too fussy either, so that’s saying something! Also, a drinks trolley came around between each meal service – this is what Qantas likes to call “continuous refreshment”.

The Call Bell: There is a rule of thumb about using the call bell on flights – unless you are stuck by the window, with an inability to get out, or having a medical emergency, then it is advisable to stretch your legs and take a walk to the galley to make your request. We honestly do have your best interest at heart, DVT is a serious issue, you really should move around more. Well, in hospital, I was forced to press the call bell. It goes against everything I believe in, but when you are in isolation, you don’t have a choice. I did feel for the nurses when I could hear the call bells going off all through the night..

The Entertainment: Having entertainment issues on a long-haul flight can really make-or-break the journey. Hospital stays are no different. Since I have private health (thank you Bupa), my TV usage was free. The 5 movie channels plus standard TV made the 56 hours fly by. The picture quality wasn’t the best, and the sound would randomly stop every now and then – complaints I have had to deal with many times before. I was a little jealous when a nurses told me Ward 5 had flat screen TV’s! Say WHAT! I was hatching a plan to get transferred to Ward 5, until I found out Ward 5 was ICU and CCU…NO thanks!

The Service: We all know this is the backbone of it all. I had a rotation of 7 different nurses care for me during my stay, and all but 1 were amazing. I know this is no different with cabin crew – there a lot of people still in the profession that really don’t want to be there, and if you are their passenger, you’ll know about it. The rest of us, are happy to look after you.

As much as I would have preferred to fly around with world instead of lying in a hospital bed, I am happy not to have jetlag, cankles or suitcases to unpack.

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Unlucky Seven

Warning: the following may cause people to worry. This is not the intent. Just facts.

If you had read my blog about my horrible first round of chemo, in chair 7, you may remember that 7 was forever going to be known as my unlucky number. Today has cemented this.

Firstly, here are a few facts for you.

Fact #1: 10 days after chemo is when your white blood cells are lowest. That is today.

Fact #2: if everyone is wearing summer clothing, and you’re in jeans, jumper and scarf…and shivering…something’s not right.

Fact #3: if your temperature reaches 38 deg during chemo, call the ambulance.

This morning I went for a lovely brunch with my girlfriend. I was feeling Ok, just couldn’t get warm. I knew when I got home I should check my temperature. 37.9. Mum and I decided a trip to Emergency was probably wise.

Emergency on a Sunday – no need to say more. I was given a mask to wear and a seat away from everyone else to ensure I didn’t pick up and extra germs while waiting. The wait wasn’t too long until I was seen too – wristband on, gown on. Looks like we will be here for a while. My temperature spiked to 38.7 and I could feel every decimal of that.

To cut the long story short, I have been given some antibiotics and my temperature is slowly dropping. Unfortunately I have to stay overnight to be monitored. It’s very common for this to happen, just unlucky.

Getting back to my point about number 7 being unlucky. My first round of chemo was 17th, today is the 27th and mother and I had a chuckle when we realised I was in cubicle 7 in Emergency. The joke continued when we heard the Doctor say I was going to be transferred to ward 7B. My next round of chemo is scheduled for November 7…should I be worried?

Please know that I feel fine, just a smaller bed and TV than I’m used to tonight. We were supposed to cheer my sister on as she completed her 60km walk today – sorry, Anja.

Reality check #2.

(Oh, and for all those who have been sending positive vibes that I get a hot Nurse…they worked! Hunk-a-Rama)

Hookin’ Up…It’s just not what it used to be.

It’s not all stilettos, wavy hair, bodycon dresses and too many Negronis these days. Ok, let’s be honest…I wouldn’t wear a bodycon dress. Now, hookin’ up involves slippers, pajama pants and Love Tea.

As everyone was aware, today was Round #1. Time to get hooked up and have some not-so-nice chemicals pumped through the body. Sorry, there is no sugar-coating it. It sounds daunting, it is, it has to be done, so let’s not get all sooky about it.

I was in good spirits this morning. Mother made me some lovely poached eggs for breakfast – I did have a mild regret about this suggestion, will I be turned off eggs forever now? Ekk

My appointment was at 9am to meet with my Oncologist. There wasn’t much to discuss as this was the first round. All systems go.

Today I was positioned in Suite 7 – if things had gone to plan I could have adapated this number as my new lucky horse-racing-omen-bet…but definitely not now!

I made myself at home in my chair – shoes off, slippers on, lunchbox out. It was nearly 10:30, time for some morning tea. The nurse was very impressed with my homemade veggie tarts that we all devoured. Prep – success!

So, then came the first hiccup…

The first attempt to find a vein – FAIL. Needle in, needle out. Lucky I’m OK with needles…or do I just keep telling myself that? They are limited to the range  they can insert the catheter in the arm. I told the nurse I have lots of great veins in my legs…she wasn’t too keen on this suggestion.

Ok, job done. Needle in. Phew…

They give you anti-nausea drugs through your IV – wait 20 mins – then I was set up with ‘THE DRUG’…docetaxel. I was warned, if you are going to have a reaction, it will happen within the first 15 mins, so they keep a close eye on you. Sure thing. I grab my book, chill out…then NOOOO… I wasn’t sure if I was imagining it, but it was happening….I was having a reaction. Classic symptoms of tight chest and flushed face. I am not going to lie, it was a little unnerving when the nurses start yelling REACTION and everyone rushes over with counter-drugs in hand. I did get a little teary, just from the shock of it all. Things don’t go wrong with me! I am a Grade A patient!

It’s very common to have a reaction and easily fixed. I was pumped through with Phenergan and something else. Within 5 mins I felt drunk and sleepy and pretty much slept through the next few hours. As I had a reaction, I will always be given Phenergan prior to the chemo drugs.  At least now I know not to bother packing a book or DVD! I will be asleep for every round – not such a bad thing actually.

So, after 6 hours, I am back home. I have been spoilt with more flowers and mother is waiting on me with cups of tea.

The next few days I have lots of prescription tablets to counteract any possible side effects. If i’m going to crash, it won’t be until Sunday or Monday. Until then, life goes on.

That’s all folks. A day in my life at the Oncology Ward.

Note: I have to give credit to my good friend Rebecca Carr for the heading suggestion. Clearly she knows me too well. Thanks Bec X