OTIS Foundation Family Getaway, Inverloch

Its been a while since I’ve written anything here.  Its been great to have some time-out of this experience and enjoy some normality, well my new normal.

I have taken the opportunity to take up a gift from the OTIS Foundation.  They offer free accommodation to breast cancer patients.  There are several property owners who donate some weeks to the Foundation.  The place we are staying is in Inverloch, in Gippsland, Victoria called Merrileugh.

I sit here looking across the farm and out to the sea.  It is breathtaking and almost criminal that I am typing on my computer.  I will share some of this place with you in photo’s but its better than the photos.

We had a great holiday to the USA last year, it was life changing for the kids, and fun to share it with them. It was action packed and busy. But it wasn’t all that relaxing, except for some wise extended bookings in a resort at Universal Studios where we relaxed by the pool.

But this is totally good for the soul.  There are cows, and sprawling farm land, dogs and cats, a tennis court, ping pong table and of course the surf beach is just down the road.  Its funny I thought of the movie, Beaches.  The kids bundled me up in blankets and put me in a sun lounge chair out on the deck with pillows for wind break as they played coits on the lawn.  It was a moment worth savouring. Andres asked me to blow a fairy and make a wish. Mine was to live a long and healthy life and see my babies get married and have babies themselves.

In terms of this BC story, I have visited the menopause clinic and they gave me some medication to deal with the leg nerve pain that keeps me awake at night.  The good side effect of this is that it makes you drowsy. This is a great benefit to overcome hot flushes and helping me sleep.

At my oncology appointment in February, my oncologist told me that I should be exercising 6 times a week to help in keeping any recurrence away.  So I drag my sorry self up at 6am and swim 300 metres at least 3 times per week, and the other days John and I go for long walks/jog.  Although I’m going to miss daylight savings with dark nights and dark mornings.

We've had fun together, but we all missed John of course. There's been dinosaur digs at a known dig site, going down an old coal mine, 65 metres below the surface and surfing lessons at Inverloch beach.  The lack of technology has made a huge difference to our re-connecting after the last 2 years.

'Bella' the friendly cat

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Happy New Year

A belated Happy New Year to all of my friends and family. 2017 is going to be a great year! (I think I said that for 2016, but that was just because active treatment for cancer had finished). I didnt anticipate the ongoing leftovers of each of the treatments.

John and I saw the new year in on the 21st floor of a hotel in the city watching the fireworks - it wasnt quite Sydney new years fireworks, but it was a great experience all of the same. This was on my bucket list that I put together in my spare time during chemo waiting for appointments. It is a very long list, some a dream due to financial and other constraints, including how long I will live out my days and how fit I will be as an elderly woman :)



January 3rd saw me at my plastic surgeon appointment for the year. So far he is happy with it (he doesnt have to wear it does he). Anyway, next step is creating nipples and some liposuction from my hips to fill in the dents in the breasts he has created. I also have one Dolly Parton and one Winona Ryder - containing them is not easy. There are no bras that have a size large C and B in one. The large C is soooo wide that it probably is more of a DD in width, but not in projection. My plastic surgeon couldn't really grasp my difficulty - at least his offsider got my point. Anyway, singlet tops are proving useful for the moment.

When it comes to my bottom, I am still visiting a physio to deal with the after effects of the cat incident. Wearing clothes is still interesting with my hollows in my butt. I even played around with the bra inserts and stuck them in the hollow - kind of like a prosthesis....ha, ha. If only I could show you the photos - hilarious! But then I can imagine if it slipped and fell out - how would I explain that!

Just recently, a friend and I took the kids to a swimming pool. We did some laps. Only when I was getting changed did I realise I had lost my nipple prosthesis in the pool. I was debating whether to send the kids in for a look around. Many laughs were had as we talked about the possible scenarios of it being found and the finder realising what it was!!! Oh to be a fly on the wall. Or they'll just find it in the filter all rolled up like a bandaid and none the wiser.

It's fun to imagine how it could play out.

Its not Black Friday

So it wasn't even Friday the 13th, but Friday the 16th, I wasnt even having a good time with champagne in hand.

Just when I had restarted my exercise program and was looking forward to regaining my fitness and health as I am healing, and this happens. A hungry cat cutting me off as I spilled the cups that I was carrying, wetting the floor and in my half running pose, slipped over backwards hitting my head on the stool and slamming onto the wooden floor with my coccyx and my newly healing lower back! Ouch!!!

A call to Nurse on call, ended up with an ambulance administering pain killers and taking me off to emergency at St Vincents Hospital. There I stayed until things settled down and it was clear I didn't break my back. Home at 2:30 am with a sorry looking cat on my bed and my 10 year old girl eager to see me walking again.

I still cant believe it happened really. So I'm off for xrays to see if anything had been done in the process as I'm still hurting. Then it will be off to a physio instead of a personal trainer!

So just in time for Christmas, and I think I'm ready for the New Year now. Bring on 2017. I thought 2016 was going to be a better year - I guess it was in the cancer department. Just dealing with the after-effects from all of the 'procedures', drugs and coping with my new body which is a new weird shape from my backside, hips to my chest. Let's just say dressing takes me a little bit longer and it will be a while until I can wear a dress again - if ever.

I finished work for the year yesterday with some relief really. Even though it is a bit easier going to work than facing the maintenance of the house, getting ready and sorting out the kids in the morning adds to the stress.

Looking forward to spending some downtime with the kids and not thinking about things too much and a quick trip to Torquay in January before the work/school year starts again.

At least this Christmas I am not visiting radiotherapy at the Austin everyday and have managed to drop all of the extra fluid I had onboard then, thinking that it would never go away.

Merry Christmas to all my lovely friends and family, I hope you have a wonderful time with love and sparkle over the festive season. Hug your loved ones close and be thankful for each of them.

Remembering our trip

Gosh, it seems so long ago we were in the US. While I was in hospital I used the memories of our trip to keep me going. Thinking happy thoughts.

Anyway, Ive got some of my favourite photos to reflect on, John took 4000 of them. I'm sure there's a lot more, but here is a small collection.

Putting myself back together

I expected this to all be finished by now :( It's so frustrating and slow this recovery. I'm concentrating on putting myself back together again, I know I will never be the same again both physically and mentally. Still living with the fear and sad when realising I'll never have my body back the way it was, not that it was any "elle Macpherson" body but still it was mine, all the flabby bits and all. I feel a little Frankenstein-ish when see myself in the mirror with slashes like I'm the main actor in some kind of gory horror movie. The weird shapes are hard to get used to also. But I need to be patient to get it back together.

So the body, the mind, my hair and my toenails are all on the mend. And then there's Tamoxifen. Just when I got used to the stuff, I've got the lovely bone pain (which makes you fear the worst), hot flushes and tiredness - all that I had got over when taking it before. (I had to stop it before surgery and have only just started taking it again).

I will never feel under my arms again, making it dangerous to shave under there. Its interesting when you spray your deodarant in the morning, the door behind me must be covered in deodarant - I can never find my armpit. I'll have to revert to roll on - less mess.

Decided go bra shopping as well, well not a bra but something that could hold my bandages in. One benefit, I dont really need to wear one of those anymore if I dont want to, but with the natural tissue they can still sag. But 1 is a B cup and the other is a large C or a D - my clothes hang in a very interesting way.

I saw the big moon the other night - I feel like I have to part of anything that's happening and make the effort rather than miss out and fully participate in life's these days.

I have also started a journal with all the things I'm grateful of each day - hmmmm...turns out I have a lot more than I thought I did.

I'm grateful for the beautiful flowers and chocolates I received from Leanne, book club and work. Also, Susie brought around her most excellent meatballs - yum. The girls, Carolyn Jill brought me magazines and chocolate for while in hospital and coffee and muffins when back at home, yummy Haigh chocolates from work (I managed to eat them all myself, but had to hide them to do so).

Then of course the gift of my Mum, thanks Dad for lending her to us. The cooking and washing were taken care of while I recovered. Mum and I had a lobster for lunch on Oak's day. So with drain in hand, I decorated the table, the weather was beautiful. It was fun in our own kind of way.

Thanks for all of your support of me, I am very lucky.

Anniversaries to forget

Today was my anniversary of my last chemotherapy 1 year ago. I so looked forward to the 20 November 2015 like no other date in my wee life. As I fight to keep the fear buried within, I hope I never have to go through that shitty experience again, or for anyone else for that matter. I know some people fly through it with hardly any symptoms but I don't know how or why? Probably different chemo drugs I guess.

This week I was asked to go to the a Think Pink Living Centre to support them for a media release. I couldn't not go after all the free services I have taken advantage of. Except when I got there they asked me to speak to the media. Luckily I had written a blurb for their media release but I wasn't expecting to read it. Anyway, with knees knocking and a good deal of reading from my tiny iPhone screen, I delivered my story. So tonight I saw myself on channel 9 - aagghh. It's difficult to see yourself on TV that's for sure! Anyway I do hope they have more clients utilize their services and they continue to get funding into the future. With charities it's all about how well they are known like the mnd foundation ice bucket challenge.

My beautiful friend, Cora's anniversary of her passing came and went. We were in the middle of San Francisco climbing one of those crazy hills or the Coit Tower steps, not only did I realize just how unfit I was, but thinking about the struggle, she popped into my head. I checked the date and it was her anniversary. Vale Cora.

Another milestone - I had my first haircut - Woohoo!!! So excited to need a haircut. Thankfully he did not take too much off my hair, but mainly shaped it which is exactly what I needed him to do so I could grow it. No more koala bear ears sticking out the side of my head and he cut off the tiny curls. It reminds me of the old perm days in the 40's and 50's where women would perm their hair as tight as they could possibly do it and then have their hair set to make waves. Yep I even did set my hair in curlers to make this work for me.

We also had Andres' reconciliation at school, I asked the kids what they are grateful for, Andres was glad that I didn't have cancer anymore :)

I finally got my drain out too - I said goodbye to my little friend - good riddance little sucker!!! So it was much longer at 4 weeks out from surgerY before removal. Luckily it happened just before I was due at the media release - ooh that would have been a bit gross. This drain was draining my buttock site, so Fingers crossed I don't get a seroma with this side now.

I saw my GP today and it turns out I have the start of an infection on the latest mastectomy and reconstruction site. So on antibiotics to get that sorted - wouldn't it be terrible after going through all of this with my buttock only for it to fail. Leaving me with a butt that looks like it has been through a hail storm with stones the size of cricket balls. My P.S is on holidays so he couldn't check it out. He didnt seem too worried, but an email at 1am on a Sunday morning with photos of oozing ought to tell him that his patient is freaking out, nope.

I'm back at work, but can't quite deliver on a full work day just yet. Came home today incredibly tired and heavy, tucked up in bed now ready to have the conversation with my body that it's time to sleep!!!! Good night all, sweet dreams.

18 Days Post

Day 18 has come and I'm getting better - but not quick enough for me.

I've got things to do and getting frustrated sitting around all of the time. So I've signed up to do a course, and looking forward to fixing this surgery so I look somewhat normal and driving again.

Today I saw the plastic surgeon, I have been a little down about the result of this surgery. My chest feels like I've got some type of tight bandage wrapped around my chest and it's as hard as a rock. One girl likened it to it feeling like an amputated leg stump sitting on your chest - it truly does feel that weird after the softness of your natural self. Not to mention the lack of symmetry and puckering and that it feels like the tissue is bulging and about to spread into my neck region. Then there's the issue of my back flap. Something I never considered prior to taking the 2 glute flaps for the implant, where the 2 scars cross there is a puffy section that looks and feels weird in my clothes. Anyway hurrah, it's all fixable and he says with very minor surgeries. To quote him '60 seconds to fix the back flap problem'. The question is how many more? The reason I chose this method was to reduce the amount of surgeries in the long term (implants need to be changed every 10-15 years). Anyway, I'll see what he has to say to that question.....

A few days after arriving home, I got the most excellent news from my beautiful breast surgeon that there was no cancer in this mastectomy - yay!!!! That was exciting and expected, so glad it all went to plan.

Mum has been here helping me with the kids, cooking and housework - she is my guardian angel - thanks Mum. John has been ferrying the kids around as well as Heidi backing up with drop offs. It's hard to not do the things I normally do, but doing more as I get my energy back. Grateful for being so supported and loved - thank you :)

Halloween has just been and gone.....I did consider using my drain full of blood as a prop for a costume, very creepy. Since I have to tow it around with me every where I go, it would have been a perfect Dracula prop but it might have scared some kids so I reconsidered. I dressed as Daphne from Scooby Doo and off we went to Heidi's for a creepy dinner and Trick or Treating around their neighbourhood. They have it set up so that you only go to houses with decorations and leave the others alone. At least people can choose to be involved or not. Mind you, I just sat in the house, while the fathers took the kids around the neighbourhood :) The kids had a ball and it was good to have an 'outing' outside of these 4 walls within some other 4 walls.

I must say I'm going a little bit crazy stuck here. At least I have started my Christmas shopping.