day three

This morning I didn’t get to see the sunrise. Why? Because I was sleeping – hooray! Apart from a being woken by my beeping IV machine, and by the nurses feeding me more drugs, I slept all the way through. Last night I was watching Mandela, it was only 8pm but I was feeling sleepy. The nurse had given me a selection of drugs with strict instructions to take them at 10pm, so I set my alarm on my phone. Lucky I did, I was fast asleep.

It was just past 7am before I decided to get up this morning. Now that it is my third morning in hospital, I have worked out a morning routine. I order breakfast then get in a lap around the ward. I have been given orders to do at least four laps per day, so I like to do one first thing before breakfast – work up an appetite (ha). Today I was feeling good so I decided to take in the North wing as well as my East wing. I was feeling comfortable and noticed my speed increasing… by the end of the week I might have to start wearing my Garmin to keep an eye on my pace. The hallways are usually empty but last night, on my walk, I saw another young woman.I might have to go on a stealth mission to find her room and see if she wants to start a walking club. We could be called, The Tenth Floor Wanderers. Anyway…

My nurse for the day has just arrived to hand me my next lot of pills. I think I’m going to like this one… she seems to know what she is doing. I know that sounds a little harsh but yesterday the nurse was asking ME what she needed to do. My nurse today complimented me on how well I look! She is also impressed with how my chest looks and how little pain I am in. See, nothing to worry about. She was a little concerned I was doing work on my computer, but I assured her I was just writing.

Now that I have done my first workout for the day, I am looking forward to my breakfast. I have chosen the healthy option today, egg white omelette and natural yogurt. I’m saving the pancakes for tomorrow.

The Sunday Mail has arrived, room service should arrive shortly. Remind me, where am I again? Oh yeah, hospital.

 

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ten-oh-oh-nine

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I lay here in bed watching the early, morning light filter through the blinds, marking day two since surgery. Through the night I managed two lots of three hour naps, an improvement on the previous night. It’s not because I’m in pain, I’m just not used to sleeping continuously on my back – I’d do anything to roll onto my side and curl up with a pillow. In exactly seven minutes room service opens; it reminds me of being jet lagged on a work trip, waiting for the breakfast buffet to open. Now it’s only six minutes…

I’ll rewind a little and give you an overview of how the day of surgery played out. And before I do that I’m going to tell you a (very brief) story about another surgery I had four years ago. I was living in London and having surgery on my veins. The olds and I had planned a trip around the UK and I used those holidays to recover from surgery. I was in hospital waking up from the anaesthetic and the olds were being annoying – they were taking silly photos of me and laughing. I told the doctors to send them away… I wasn’t joking. The point of this story is to highlight their behaviours when it comes to these situations. I’ve worked out they get a bit delirious when hospitals are involved. Thursday was no different. They were signing a random theme song in the car (I can’t remember what it was).

We arrived at the Mater and the foyer is just like any hotel lobby, suitcases, luggage trolleys, a long reception desk. Once my registration was complete, a volunteer came to take us to the Welcome Lounge. I thought only one person could join me, so I had told the olds I would go alone. The volunteer, a sweet, little old lady said they could both come up. Ok.

The lounge is like a Business Class or First Class lounge – minus the free flow champagne and canapés. It was a small room with soft, leather couches, a section to watch TV, iPads and newspapers. We chose three rocking chairs in the centre of the room and sat down, each with a newspaper. I was starting to wish I had a boarding pass in hand, instead i was waiting for a name badge to be strapped around a limb.

My name was called to see a pre-admission nurse. I went in solo as there was only room for one parent – it’s only your basic questions, weight etc… I’ve done it a few times now through this journey, I got this. After all questions where answered the nurse said someone could stay with me a bit longer. I told the nurse that we could send the parents away now. She looked a little confused but accepted my wishes.

So we walked out and told the olds it was time for me to change and time for them to go for lunch. Mother tried to pretend she wasn’t crying, but she cries watching anything (last night she cried when an imaginary kangaroo was killed in a comedy movie) so I hurried the goodbyes and sent them on their way.

As I walked through my anaesthesiologist (is that what they are called?) arrived, so I was taken in to have a chat to him. He talked about his plan for me – I didn’t know giving anaesthetic was so involved. He asked me if I wanted something to calm my nerves. No thanks, I’m good.From there is was the usual shuffle from getting de-robed, onto a chair, then onto a wheelchair, then into a bed… I was now in the holding bay. My anesthesestic returned to prep me by inserting my cannula, and somehow, through random conversation, we discovered that we used to live a street away from each other in London (but over 20 years apart.) I was his new star patient. Dr O, my plastic surgeon, arrived and out came the marker pen. You could think by now I would be staring to freak out, but I wasn’t.

I was then wheeled into the theatre. My surgeon was standing by, I jokes about him being famous now as he was interviewed on TV, then they pressed GO. The drugs infused and I was out.

Surgury only took about three hours, but I took me another five hours to wake up. The poor olds had a long day of waiting around and called it quits when I was still not responding. At 9:30 I was finally able to keep my eyes open.

Now that I was alert and awake, I decided to have a look at my chest. When I looked down and saw my stitched up chest I felt nothing but relief. I am not mourning the loss of my breasts. (Although my surgeon and breast care nurse have both assured me it’s ok if I do. Is it not normal to be ok about it?)

Without turning this post into a novel, I will end by saying I am not in pain. I am up walking around the ward – doctors orders, I am showering – with the help of a nurse (still waiting for the hot male nurse, oh well….) and I am enjoying the food on offer. I have received some beautiful flowers and am in my own private room. I also had a visit from a breast care nurse who gave me a few supplies and gifts from Mater Chicks in Pink. Anyone who has been involved with a charity run or walk for this organisation, thank you! They really do make a difference.

I am working my way through the movie selection. The computer has yet to be turned on, mainly because it’s too heavy for me to pick up. I’ve managed to type this whole blog on the touch screen of my iPads! I think that deserves an award.

That’s all for now. Today I am expecting a few visitors, I better go do my hair…

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Holiday Time

A year ago today, I jumped on a plane from London to Milan, navigated two trains, and ended up in one of the main towns in Lago di Como – Lake Como. There to greet me was my faithful travel companion, Jacqui. We were spending two nights cruising the lake before Jacqui headed back to Australia – any excuse for a rendezvous somewhere in the world. We partook in all the standard Italian activities: we drank Spritz, we ate pizza, and we harassed Italian boys. Life was good.

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Today I am going on a different type of holiday, and it won’t be like any other holiday I’ve had in the past.

  • I won’t be drinking cocktails; however, I will be offered a cocktail of drugs.
  • I won’t be spending long hours soaking up the sun; however, there will be topless activity.
  • I won’t be having long, lazy siestas; however, there will be a lot of drug-enforced slumbers.

It will be the first time I go on holidays and I don’t have to debate over taking my gym clothes and shoes. Will I be needing them? Not this time…

Today I will be checking in for a weeks stay at the five-star Mater Private Hospital. There was no option of booking a sea-facing suite with king-sized bed or twin. There is, however, rooms service and on-demand movies. Close enough…

My bag is packed: pyjamas, study workbooks (am I kidding myself?), iPad, noise-cancelling headphones, and once I sign off on this blog, my long-serving Macbook will be added to my belongings.

This morning I had the intention of going to the 5am CF session, but after a failed attempt at running last night, I decided my body was telling me I should take it easy. So I did.

I had a favourite treat of Buckwheat pancakes for breakfast. Don’t worry, I was allowed to eat until 7:30. The joys of private treatment. Uncle Gary stopped by with a few treats for hospital – I think the nurses will love me. The hips, not so much.

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Am I nervous? Just a little – it is major surgery. I look forward to waking up and cracking on with things. And I never thought I would say it, but I am looking forward to having a lazy week staying in bed. I’ve been so busy lately with work and training that I don’t feel an ounce guilty for my upcoming bed-ridden state.

If you’re local, come say hi. I’ll have the tea ready. And just so you know, pyjamas are the dress code.

I’ll try to wait for the drugs to wear off before I post my next blog – could be very interesting otherwise.

Time for a shower and last minute pack.

Thanks everyone for the messages of well wishes. I know I have a lot of people sending positive and healing energy my way, and a lot of people praying for me. I feel very loved.

X

 

 

Newsflash!

Stop the running.

Stop the burpees.

Stop the rowing.

AND stop the flashing of undergarments (well, only if you want to…)

The cost of surgery is covered!

I have crunched the numbers, and added the total raised from Thea’s Run for Boobs fundraiser, along with CrossFit Western Front’s Rack for Rocky fundraiser AND another generous donation. The result, the cost of surgery is covered!!!!

Although the cost is still only as a ‘quote’ because anaesthetic fees are only a ‘guesstimate’ until the procedure is performed, it shouldn’t vary too much.

I can’t begin to explain how much this has impacted my life. It means I can take the time to recover without any additional stresses. I have said all along that I have had an easy time through my cancer treatment as I have had limited additional stresses. This now ensures I can remain stress-free until the end of treatment.

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Update

I will admit that this will be the most uninspiring or creative blog I have posted. But it’s necessary. An update is in order for those of you far away that I haven’t had a chance to talk to. So this is merely a simple update to let you know what’s happening in life and treatment. I think my University Professor would take back the Distinction he awarded me for the unit on Creative Writing if he was to read the following…

Firstly: Surgery. I have received the quote and crunched the numbers. It’s on the higher end of my budget but it’s manageable. It is all locked in for July 31st. I have over (just) eight weeks of freedom. Eight weeks to enjoy my mobility.

Secondly: Running and fitness. I’ve had a goal to take part in the Gold Coast Half Marathon for many years. I’ve heard it’s one of the best courses for your first HM – it’s flat, very flat. I actually registered about six years ago but it never eventuated. Since being back in Australia it’s been on my radar, although I thought there was zero chance of being able to participate this year. Since my last triathlon I haven’t committed to any events for the rest of the year as that date for surgery was still not confirmed – they could have turned around and booked it in with a few days’ notice. Those on my Facebook know I had a ‘light bulb’ moment when I realised the HM was before July 31st. It’s July 6th. Standby for another running story – sorry. I am also trying to maximise my time at CrossFit to ensure I am in the best possible shape before undergoing major surgery.

Thirdly: Hair. I had my first haircut the other day. Exciting. It was starting to resemble and Afro – a dark blonde Afro. My friend Meg did a great job of trimming the back and giving it some shape. I haven’t escaped the “chemo curl” and the hair definitely has a mind of its own in some places. I’m starting to master the art of using hair wax and my brushes have been dusted off and resumed their position in my bathroom draw.

Lastly: Study. It continues. I have enrolled in my next unit: Writing Magazine Features. I have also enrolled in Certificate in Professional Editing and Proofreading. The Certificate allows me to work at my own pace so I will be able to take on more study post-surgery when I will be house bound. The other unit is through university and structured over three months. My brain seems to be coping with the workload, for now.

I have mentally decided treatment has finished, but on paper it’s a different story. I know I have major surgery to come, but I feel healthy and strong (I’m slowly making gains to where I was before). I am continuing to remain calm and content with the journey. It’s taking longer than I expected, or hoped for. But I am still enjoying life in the meantime.

That’s a wrap.

 

 

 

Starting with the letter: B

*** WARNING: The following blog contains a lot of words that make the male species squeamish. Men, continue at your own risk ***

Today I had my first appointment with a plastic surgeon to talk about one (or two) thing (s): my boobs, or breasts as corrected this morning by my male friend. He’s very old-fashioned.

After a short wait – the joy of private consultations – my name was called. A tall, impeccably dressed woman welcomed Mother and I. It was Dr O, as I’ll refer to her. We walked into the corner office of her top floor Wickham Terrace practice. The office had floor to ceiling glass windows with contemporary white furnishings. Well, she has good taste and is tidy. Surely that’s a good thing.

We reviewed my treatment history then got straight into the nitty-gritty. The boob questions started: to stay the same size, or not; to keep the nipple, or not; to rebuild and tattoo nipples, or not. My only request is that I’m not ‘high-beaming’ for the rest of my life. Most of these questions don’t have to be answered just yet. First things first, it’s all about the first surgery and inserting the tissue expander. To give you a very brief overview about how things work: they insert a tissue expander under your pectoral muscle. Once recovered from surgery they fill the expander with saline in small amounts over a period of weeks. Once you get to your desired size you have a second surgery to take the expander out and replace with the implants. Simple, no?

Dr O then asked the questions I get asked by everyone: And how are you feeling now, health-wise?

My standard response, “I did a triathlon last month and am back running 10km.” This is usually enough for people to understand that I’m feeling ok.

“So you’re doing better than some us,” she smiled. I’ll take that. Moving on…

The next step in working out my options for reconstruction is to have a look at what I already have. When you embark on the journey of treatment for breast cancer, taking your top off becomes normalised; the romance is gone. Dr O examined me in an adjoining room to her office; she asked if I was comfortable keeping the door open (for mum to see, not the whole waiting room). Bless. It was the first time my boobs, sorry breasts have been examined by look rather than feel. No poking or prodding for once. I’m not sure how often my female friends look closely at their breasts, but clearly I don’t look enough. I learnt a few things today. But I’ll keep things as PG rated as possible… for now.

I asked if she was comfortable performing this surgery on me, as a lot of hospitals are starting to steer clear of immediate reconstruction with tissue expanders. We talked about possible complications: infection (the implant will have to be removed), maintenance (the implants will have to be replaced in 10-15 years) and general recovery after surgery. She explained how my muscles will be affected and the changes to my abilities with swimming and cycling. Finally, a surgeon who gets what’s important to me and incorporates it into my recovery.

I had a play with a tissue expander and a few implants to get a feel for this foreign matter that will be living inside me.

As you know I’m pretty gung-ho. This is part of treatment; no need to think about things. I like her; I feel comfortable with her. What else do we need to discuss? Oh, the cost… the fun part. Her team is putting together a quote and confirming dates that align with my surgeon. Unfortunately she is away for a month over June / July – European summer holiday, perhaps? I’m jealous…

She has given me two possible dates: June 4 or July 30. June 4 would mean having the initial surgery and one fill, then waiting four weeks for her to come back from holidays to continue with the fills and exchange surgery. July 30 means I can continue with life as normal until then. The process will take nearly four months from bilateral mastectomy to exchange surgery and recovery. Looks like I won’t be finished in time for my birthday, the one-year mark since embarking on this journey. But I will have recovered in time for next years triathlon season. Win.

For peace of mind I have an appointment with a second plastic surgeon on Monday. I really like Dr O but it may not work out with the timing. Standby for more breast speak.

BRMx RS

No, I haven’t gone crazy. The codes have meaning.

BRMx = Bilateral Risk-Reducing Mastectomy

RS – Reconstructive Surgery

BC blogs and forums are riddled with such abbreviations. Even I am still learning to decipher them. The other day I read NED. Who or what is Ned? No Evidence of Disease. That one is a winner! Technically, I can already call myself NED, can’t I? I’ll make sure to ask my doctor.

Anyway…there is a point to this blog…I promise.

Today I was booked in for another appointment, presumably to meet with my surgeon. You might think it’s slack of me to be unaware of whom I am meeting, and why. Well, they never specify on the appointment letter. I have learnt to narrow things down depending on where in the hospital I have to go. Also, I haven’t seen my surgeon, Dr Pyke since October 5th – after my initial check up post-lumpectomy. Since then I’ve been shuffled from one surgical assistance to another. He’s been there for the big appointments but since then I’ve met with 3 different minions (is it a bit harsh to call them minions?). It’s one downfall of going public; the personalised service becomes less personal. This would be my only complaint thus far.  Oh, and the time spent in waiting rooms. A two-hour wait per appointment is standard. Which was how long we waited today.

Mum and I finally completed our usual game of musical chairs from the waiting room to the doctor’s room.

Nurse: “Do you need to change into a gown?”

Me: “I don’t know. I’m not sure who I am seeing, or why.”

Nurse: “Right…I’ll go ask.” She never returned.

We continued to wait with our eyes fixated on the connecting door. Welcome to The Mater Hospital Game show. Behind Door #1: Would it be: Dr Pyke? An assistant? Reconstructive Surgeon? The door handle turned. It opened slightly. A man’s voice danced through the crack. Mum and I glance at each other in anticipation. The door closes. The wait continues. Is this a Big Brother experiment, or a hospital? Then enters Dr Pyke. The big man on campus. Happy days.

He sat down and commented on my hair growth, not that he ever seen me bald. We recapped on chemo and genetics. I was pleased to know he’d been informed of my decision to have a bilateral mastectomy instead of radiation. No need to explain myself, again. Phew. Today’s appointment was to find out specific details and work out timeframes for my mastectomy and reconstruction.

Since making my decision to go down this path I’ve been doing my homework and looking into the different reconstruction options. Standard. Even though I am yet to meet with a reconstructive surgeon, I feel certain I want to go ahead with prosthetic reconstruction – more on that later!

Reconstruction Hurdle #1

Dr Pyke broke the news that I wouldn’t be able to have immediate prosthetic reconstruction through the public system. A lot of public hospitals, in particular mine, only do this as a delayed reconstruction. The plastics team won’t even book an appointment for me until after my mastectomy! Meaning: boobs off now, wait 3 months, then hopefully be booked in for my reconstruction – if the wait list allows for it.

He continued…

Strangely enough, the same surgeons who won’t do this procedure as immediate reconstruction through the public system, will if you are seen privately. Public Hospital VS Private Hospital: the battle of protocols. The question was asked. How much would it cost privately?

That, my friends, may be the deciding factor. I didn’t completely fall over when I heard the quote. Maybe just a slight stumble. I need to investigate further and should have a clear idea by next week of the final figures. The good news is there’s no rush. As long as my surgery happens before August (12 months since diagnosis), my surgeon is not worried. I think I know what I’ll be getting for my 33rd birthday… Boobs!

tbc…

 

 

 

 

 

 

Clarity

This week I’ve been playing hide and seek. Clarity has been hiding; I’ve been seeking. To get from point A, to B, I’ve presented my dilemma to friends, to strangers, to doctors… and to myself.  Thursday was circled in my diary as D-day #2. Not because I needed to make a definite decision by then, but I had appointments with my oncologist and surgical team. I was hoping by the end of the day I would know which way I wanted to go. I also threw in a good chat to a breast care nurse whose contact I’d been given. It was the first time I was reaching out to the support offered in the system. I now understand the importance of money raised through charities to keep these resources available. The McGrath Foundation have me as a sponsor for life.

I started to realise it wasn’t a matter of hearing the doctor’s recommendation – I already know this – it was about explaining my concerns with each treatment option. How radiation or surgery will affect me, as an individual. I understand they have standard recommendations depending on your tumour size and type, but what about how I will be affected, not just my cancer.

Let me explain…

There are a few things I feel haven’t been considered with the doctor’s recommendation. Of course, as I’ve said and believed all along, everyone is different. I may get through radiation and be completely fine… or I may not. My mindset is: surgery is only making external changes, radiation is making changes to me internally, changes that I may not necessarily see or know. That concerns me.

The two main concerns I have with radiation:

1) Fatigue.

The main side effect of radiation is fatigue. Extreme fatigue: long lasting fatigue. Do the doctors know that I work as a flight attendant? Have they considered my job environment? A ‘healthy’ person working long haul will struggle with fatigue. Radiation is going exasperate that. It could take an extra 6 months recovery compared to surgery, to feel myself again.

2) Fitness.

Radiation can affect your lung capacity. These days the instruments have improved so the damage is usually very minimal, but they can’t guarantee anything. They advise at the start: “Radiation may cause scarring on part of your lung, but you’ve got two…” I remember when the words came out of my radiation oncologist’s mouth. As if losing part of your lung capacity was completely normal. Others may not mind… but I do! For someone who wants to get back to triathlons and training for Ironman, lung capacity is quite important. I’m part of a Facebook group: Young Pink Sisters. The other day I put up a post about my concerns regarding radiation. A woman responded by saying, “I continued to exercise at 80% through radiation…the radiation has done some damage to my lungs… I get a slight wheeze when doing cardio.” Do I want to have shortness of breath or a slight wheeze when doing cardio? Umm NO.

To one person these concerns may not be valid. This is where it becomes very personal. What’s important to me may not be important to another. For some women their breasts mean everything to them, they identify with them. Also, having the option to breastfeed in the future is of great importance. Neither concern me.

Now, surgery…

It’s a misconception that having both breasts removed improves your chances of the cancer NOT coming back. Studies prove that having a lumpectomy with radiation is just as effective as a double mastectomy. This is why, if you qualify for a lumpectomy, it’s the recommendation. And even if you have a double mastectomy, some breast tissue remains. The current statistic is that you have 1% chance of it coming back. I’ve heard too many stories of woman who have had radiation then it’s come back in the healthy side. I have 60+ years ahead of me; I would rather take the 1% option.

Also, if you have radiation, then have a recurrence, THEN need a mastectomy, the reconstruction is harder. Not impossible, but harder. They take tissue from another part of your body. Doctors explain this as if it’s completely fine to cut tissue out of another part of your body. This may not bother other people. They may get a tummy tuck along with new boobs. For me, it doesn’t sit well. I would like to think I don’t have enough fatty tissue around my stomach to make new boobs later. Maybe I do. Not to self: stop eating chocolate!

Another comment I’ve heard too many times: “If it comes back, you can have a mastectomy later.” If it comes back and I need a mastectomy later, I will have a major case of regret. Regret is a nasty headspace to be in, I don’t want to live with regret.

This is where deciding on a treatment that also helps maintain a healthy mindset becomes important. What decision will I feel comfortable living each day with? If I have radiation, will I be looking in the mirror wondering, did I make the right decision?

I wrote these thoughts and concerns down on paper and prepared for my day of appointments. Each time I thought about radiation or surgery, I feel more at ease with surgery. I knew it was important to remain open minded during these discussions and listen to their responses, not just hear what I wanted to hear.

And that is what I did. And everyone – my oncologist, breast care nurse and surgical team – all agreed that it was very valid for me to feel surgery was the better option. As my breast care nurse said, “You’re not refusing treatment, you’re just choosing the best option for you.” She actually joked that I should become a breast care nurse. I had done my research, knew the statistics, looked at both options from each viewpoint and understood the pros and cons of each.

I am now at peace with my decision. Radiation is cancelled. Next step is to meet with the plastics team to talk about reconstruction then book surgery.

The wait continues, but I feel healthy and strong… and happy.