Pink Hope member Nadene shares her experience and tips for organising surgery when you live a considerable distance away from your surgeons and hospital.
I was supposed to be lazing on a beach in Malaysia right now, but instead I’m preparing for a bilateral mastectomy and immediate tram flap reconstruction – in a couple of days’ time.
This cancer diagnosis was the latest of three and the first since I found out I was a BRCA carrier two years ago. Treatment this time round is the double mastectomy; however this operation is not available in my home town so the only option is to travel to Sydney, about 4½ hours away.
It’s not easy for any of us, but I think it’s additionally stressful when you have to leave your home, family, friends and work to travel to the city.
Finding the right surgeons
My local surgeon had suggested that I needed to have the mastectomy within the next “few” months, so sent me on my way to research my options and determine a surgeon I wanted to be referred to. I trawled the internet for recommendations, advice, and other people’s experiences. I researched different procedures and read everything I could put my hands on. After much research I decided on my specialist breast surgeon and was able to get an appointment with her within two weeks. As soon as I met her I knew I had made a great decision and I was in the very best hands. She then referred me to the plastic surgeon and again I felt comfortable. I knew I’d made the right decision.
What I have learnt
- When researching surgeons, read as much as possible, research as much as possible and talk to as many people as possible. Everyone will have a story – but yours will be different. Go with your gut feel! (And don’t be afraid to consult with more than one until you find “yours”).
- Check whether your breast surgeon and plastic surgeon consult on the same day. If not, it may mean additional trips to Sydney or a longer than anticipated (and costly) stay.
- You will need to have tests – an MRI, blood tests etc. See if your surgeon can arrange for you to have these while you’re in Sydney. I was able to get mine done the afternoon of my plastic surgeon appointment which was great.
- Research parking options before you get to Sydney – we found it was cheaper to park on the street and use the meters than it was in the car park at the medical centre.
- Use a Navman if you don’t travel to the city very often – it’s a jungle out there!
OMG – The cost..!
I elected to go private so I could ensure I got the surgeons I wanted. I also didn’t have the luxury of time on my side. I have private health cover, including top hospital, however I was still stunned at the cost of my surgery. Even just the initial consults with surgeons is expensive – no bulk billing! Think about how you are going to finance your surgery if you are going private. The ‘out of pocket’ expenses will be thousands of dollars and most surgeons require payment in advance of the surgery (often 21 days out). Also, we ‘out of towners’ will generally have a longer stay in hospital as they won’t let us travel home while drains are still attached.. Longer stay in hospital, longer hubby stays, more accommodation and expense!
Getting sorted at home
It’s simply not possible to have my kids with me in Sydney. My kids are older, but they aren’t old enough to leave on their own for more than a week. Thankfully I have my parents close by so they will assist with keeping a routine for the kids and most importantly, make sure they eat, have clean (ironed) clothes and feed the animals! I’m taking a laptop with me. I’ve had a quick lesson in “Skype” so I can talk to – and see – the kids, family and friends at home when I’m up to it. Of course those at home need to have access to Skype too!
I work fulltime and have a reasonably senior role. To walk away for up to three months is daunting; however I need to remember that apparently, everyone is dispensable!! The team will survive without me!! I think the biggest thing I’ve learnt is to do whatever you need to do so that you can walk out of the office on that last day and leave it all behind.
Support in Sydney
My gorgeous husband will be with me in Sydney. Thankfully he is able to take leave from his job. Although considering the cost of hotels, motels and even pubs in Sydney, perhaps I should be making this trek alone! We have a couple of friends in Sydney – no family unfortunately. Hubby wants to be able to come and go as he pleases and not feel obliged to have to “talk” to people when he doesn’t want to, so he needs somewhere to stay.
- Contact a social worker either at your local hospital or at the hospital you are going to. They will assist with booking some ‘reasonably’ priced accommodation near the hospital
- The social worker will also tell you about the Isolated Patients Travel & Accommodation Assistance Scheme (IPTAS)
The final countdown
It’s the day before I leave for Sydney. I’m booked in to the beautician to have massage, pedicure and facial (in an attempt to relax…!) then to my hairdresser to have the roots done. I don’t want to be looking in that mirror in a week of so looking at all that grey coming through!!!
So now comes the last minute packing… I’ve had some great advice as to what to take with me to hospital:-
- Pj’s that do up at the front – check
- Throat lozenges & lip balm – check
- Facial wipes – check
- Moisturiser, mascara & eyeliner, perfume – check
- Drink bottle able to be used laying down – check
- Comfy clothes – tracky’s, hoodies, loose shirts – check
- Wrap for if it’s a bit chilly, easy to throw on and take off – check
- Laptop / ipad – check
- Ipod & charger – hmmm will have to ‘borrow from one of the kids….. – check
- PRE-ADMISSION CLINIC PAPERWORK!!!!!!! – check
So that’s it… Wish me luck!! I’ll let you know how I go……..