Postscript 4

Great feeling of satisfaction last night. Peeled off the silicon strips from my nipple scars for the last time. Wearing those strips or sticky silicon gel 24/7 since April has been an annoyance and a constant reminder of my body’s disfiguration. A reminder I will happily miss.

Today I begin a different regime with my next set of scars. My nipple tattoos.

This morning I spent just over an hour with a beauty therapist who specialises in tattoos. She also does Botox and fillers but I gave them a miss. She is the only tattooist recommended by my plastic surgeon so she must be good. She looked like a well preserved north shore matron. Not a hair out of place and no body art in sight, if you don’t count perfectly tattooed lipstick and eyeliner.

Some people go for flowers and pictures on their chest post mastectomy. I just want nipples that will pass the gym change room test.

My tattooist used a lip liner to mark up where she intended to tattoo so I could give it the okay. The size was dictated by my skin graft scars (which look best completely covered by the tattoo). Thankfully this made a normal looking areola shape.

The actual tattooing involved a fair whack of pressure on my implants and some wincingly sore spots (despite the numbing cream I had applied). Most women have no feeling in their breast skin after a mastectomy but I still have some. Considered a good thing normally, although I could have done without it today.

The result will fade considerably over the next few days. But right now, I have chocolate brown areolas and nipples. They look very dark indeed and a little strange. Perhaps because I am so unused to having any nipple colour plus the edges are so defined whereas real nipples tend to be more blurry where they meet the skin.

Quite sore. Surprised at how much, given people get tattoos by choice. Upped my pain meds to include codeine. A lot more blood than I was expecting too. If my boobs weren’t glad wrapped (yes) the blood and weepiness would have soaked through my clothes.

I have special tat cream to apply for the next month. Who would have thought they made such a thing. I go back in November for touch ups and every 2-3 years thereafter. There can no longer be any denying that I am literally (but not figuratively) a high maintenance woman.

I have been looking forward to this day for a long time. Strange it’s over. More treatment behind me is a good thing but I have been feeling fragile of late. Think it’s because I have had some other health worries. A suspicious mole was removed from my calf. On top of that chest pains and arm numbness landing me in emergency for 3 hours. Both turned out to be nothing. The chest pains a sharper version of the same nerve pain I had back in January. Mastectomy related. The mole just a mole, despite my fear that the doctor’s face was screaming “melanoma”. It was a nervous wait for the results but I was due some good health news.

All of that has deprived me of the distraction of exercise for the last 3 weeks, which I need to feel good. I have been walking but it’s not enough. My tattooist says I can run after 24 hours so in the next few days I am planning a very long gym session, some really loud music and if I feel brave enough, a nipple parade through the change room.

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Postscript 3

Flew to Rome with the family on Saturday morning.

In transit for 26 hours. Had to wear the compression bandages on my arms to reduce my risk of developing lymphedema during the flight. I did this on my flights to the US last year and, with no sign of swelling, felt it was overkill. This time my right hand swelled up. Not like a puffer fish but noticeably swollen. I elevated my arm and massaged towards my armpit and the following morning it looked normal again. I’m not happy about it though as I only lost one lymph node on that side. I can’t believe this is going to be yet another ongoing problem for me.

Before I left I also saw the gyne oncologist. My ovarian cysts have reduced in size and don’t seem cancerous but as they remain cloudy-looking I have to repeat the test when I get back. Something to look forward to!

Preparing for four weeks away is always tricky. Trying to finish tasks at work. Packing. Leaving the house in good order. But as we went through Customs I’ll admit to feeling much more than relieved to have got everything sorted. I felt (and still feel when my mind goes there) a sense of teary exhilaration that I made it to do this trip.

When the fares were booked I still had two surgeries ahead of me. I felt it was a slightly foolhardy act at the time. Yet here I am. In Rome. Fit and well.

I was also determined that we would push the envelope a little on this holiday. I love Greece and the US but I really wanted to go somewhere new. So after Rome we head to Spain for 3 weeks. We have been before but it was 18 years ago, brief and only Madrid and Barcelona. This time we’re hiring a car and will visit both the south and the north. Before then how could anyone not enjoy getting over jetlag in the eternal city.

Postscript 2

I did it! Ran the Mothers Day Classic. All 4 kilometres of it, including a hill. It took me just under 27 minutes. It might not seem like a lot to serious exercisers but I am so proud of myself and have been on a braggy high ever since. (See the pic. I look kind of puffed.)

I never did any distance running at school and although I’ve become fit in recent years, and have been training, I had never run that long without stopping for a breather. My running training only began last November and I had a five week break following my nipple surgery in March.

Thanks to all my sponsors: Alex, Shay, Dennis, Jo-Ann, Stuart, Linda, Stephanie, Julie, Tanie, Chris, Marilyn, Robyn, Kerry, Ken, Rose, Jim, Nikki, Claudia, Joshua, Lance, Jay, Mike, Helen, Angus, Chris and Nivek.

One of my union sisters ran with me, which meant a lot. Chris trained with me and ran with me. As we approached the finish line I grabbed his hand and we crossed together (although the official time has him four seconds ahead, this is not correct!)

There was a big lump in my throat and I still feel teary when I think about that moment. I have come so far. To think in June last year I was gingerly stepping out with Dad for a slow walk around the block.

We visited Chris’ Mum in hospital in the afternoon. So happy to see her looking better. She had some kind of brain injury nearly two weeks ago. It presented as a stroke originally but now they’re not sure. She is eating purée, sitting up in a chair and beginning to recover her speech. Such a relief. It has been a stressful time, especially with Chris overseas when it first happened and the prognosis looked more grim.

That night I did an interview for the ABC TV news about cancer, Mum and missing her on Mother’s Day. Good that they covered that angle. Mum was never into Mother’s Day but I resent the assumption you have a mother to embrace at this time of year. And the perfect bookend to the day – I cooked Mum’s roast beef.

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Postscript 1

Loved my Reconstruction Party. My Aunt and cousin came up from Melbourne. Union comrades. Old friends. New friends. Family.

The cake my sister organised was fabulous. It was perfect in fact. Rachel was surprised I didn’t guess the theme. Such a great idea. A set of boobs in a white singlet with a pink ribbon that said “yes they’re fake, my real ones tried to kill me”. Just like the singlet I have. Except the cake boobs were ginormous. Dolly Parton-esque. Mine are not even in the same league.

I drank way too much champagne. Not my normal drink of choice but it felt celebratory and no hangover the next day thankfully. Wore the strapless dress I got for the work Christmas function. Always makes me feel amazing.

I’ve uploaded a whole lot of pics. Thanks to everyone who came and celebrated and all the lovely messages from those that couldn’t be there.

Life post daily blogging is a little strange. I find myself feeling at a loose end around 9.30pm at night or thinking about things to blog about during the day. Like last night when a fellow traveller told me the cream she was using to moisturise her radiated skin was called, ridiculously, “udder cream”. Or this morning’s sunset. Or the chaos at home because everything is being re-painted. Dust. Drop sheets. Boxes.

On medical news, I’m worried I may have strained my hamstring this morning. Planning to give myself a few days off running. Bad timing as the Mother’s Day Classic is on Sunday week (not too late to sponsor me!)

More medical news, my plastic surgeon isn’t happy with the way my skin grafts are healing. The scars are “thick”, which is apparently not a good thing. He was surprised they scabbed at all. (I should have known scabs were bad.) He said the scar needs to be good to take the tattoo so I won’t have tattooed nipples for Spain. I also have to apply some hideously viscous cream to the scars every day. I’m disappointed but not sad. My plastic surgeon always said reconstruction is a slow game. I’m in for the long haul.

I have an appointment with the gynecological oncologist on Thursday to discuss my ovaries. A bit nervous. Especially as Chris is still away. I know there’s no problem. I just want to hear an expert say that.

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Day 366

When I started this blog a year ago tomorrow, I was scared. I had been told I had breast cancer just hours before. I was scared I wouldn’t be able to sleep. I was scared that as soon as my brain began to unwind I would become consumed with thoughts of my own decline and death and how that might be frighteningly closer than I ever imagined. As Chris slept next to me I never felt more alone.

Being diagnosed has been a profoundly isolating experience. Not that I think anyone could have done anything to change that. When my family and friends banded around me and smothered me with love when I was diagnosed and throughout this past year, it really helped. But the profound feeling that me alone is on this path through to whatever conclusion is probably the hardest part of having cancer. That, of course, is life, not cancer. But the cancer has made that reality so much more acute.

The thing I have tended to say more than anything when I’m overcome with it all and sobbing in Chris’ arms is “I want my life back”. I feel that less today than I did six months ago. I am reclaiming my life.

I’m so glad of my Dad’s steady voice in my head on Day 1: telling me to keep a diary. And I’m glad my gut told me it would be better to make that diary a blog. Starting the blog was one of the best decisions I have ever made. While it kept my family and friends in the loop, the real benefit for me was exploring and ordering my thoughts, emotions and decisions. I also hope it might help others who are diagnosed and want a contemporaneous account of what to expect along the way.

I’ve also, as the blog dragged on, tried to include some stories about my life. More than anything I hope one day my kids and grandkids will read it and get a better understanding of who I am. I hope I am around to show them myself. My early diagnosis would certainly point to that being likely but in the pit of my stomach I confess to feeling the cancer will get me at some point.

That doesn’t mean I’m not positive or strong. I’m proud of the way I’ve handled the past year. Really proud. I’m not sure I was sufficiently self-aware beforehand to predict how I would handle such a diagnosis. I’ve continued to give my best to my family, friends and work. Even when my best has been less than my normal standards. I hope I’ve set a good example to my kids and everyone who knows me.

There have been some highs this last year. Traveling to the US. Wandering around New York. Seeing my Harvard friends. The creative element of writing. The balm that is music. The feeling of recovery and gaining strength after a major debilitation. Beauty. Laughter. Love.

Some thank yous.

To my kids. Despite the strength I have shown I’m scared I have scarred them for life. When my Dad unexpectedly picks up my daughter from school she automatically asks what’s wrong. They will remember this year always. The hospital visits. The scars. The tears. The disruption. I hope they too can learn about life from what we’ve been through together. I love them both so much.

To my Dad. Everyone that knows him knows what a lucky person I am to have him as my father. He has stepped in and worked so hard, doing all the household chores and being my chauffeur whenever he’s been needed. I can’t imagine how harrowing it has been for him to go through my breast cancer diagnosis after it took Mum. But he’s never shown anything other than strength, even when he’s been wiping away tears. I simply don’t know what I would do without him.

To my sister Rachel. It’s been particularly hard for her because, of course, the shoe could have so easily been on the other foot. We have always been close, especially after living together for seven years in our twenties. She has been a real confidant during this year and words cannot describe how truly grateful I am to have her in my life.

To my friends Kirsten and Brett. You have gone above and beyond. Looking after me, and my family, with so many wonderful meals and invaluable support.

To my sister-in-law Amal. She dropped everything to come take photos of me and my real boobs before the first surgery so she could create charcoal drawings for me.

Two special mentions to fellow travelers. To Ellen. You have guided me from the very beginning. Thank you. To Tammy. You liked my post on day one. No one knew I had even started a blog. I didn’t have the courage to read your blog for months. You always have a friend in me.

Final thank you goes to Chris. I always said he should enjoy my boobs while he could. I really don’t think either of us took that line seriously. It’s been a hard job, being my partner this last year. He’s the reason I started a blog not a diary. I knew if it was a diary I would just complain about him. And he certainly would never deserve that. He always says “I don’t know what you’re going through”. I love that. He’s run with me. He’s tried to understand, even when I didn’t even know why I was crying. We’ve been together for 24 years and he’s without doubt the best person I’ve ever known.

I’m reluctant to single out others. The phone calls. Messages. Flowers. Meals. Music. Words that have given me great strength, comfort and courage.

Some people with cancer seem to lose a few friends during the tough times. I don’t feel like that. If anything, I feel I’ve gained some. One friend I know through work messaged me one night shortly after my diagnosis to tell me about a whole lot of my work he had just done on my behalf without me even asking. He said “…your blog is great. My mum had the exact type of breast cancer you have and told no-one. Not even her siblings. You start a blog on the first day. That’s awesome…”

In the end no one knows what their future holds and I am no different. I’ve always lived my life well. Travelled. Indulged. But still done the responsible stuff like buy a house, save and have a few kids. Dad’s life advice has always been the same and I’ve tried to honour it. From Shakespeare’s Hamlet: “As Polonius advised his son Laertes as he was leaving for France, ‘to thine own self be true'”. I’ve tried to write honestly. I’ve trusted my instincts throughout it all and I haven’t felt let down. I’ve fought to get back on my feet and I’m almost there. But the person who has emerged is different. Not to most people. But I know I am, although it’s hard to put my finger on how (other than the obvious).

The obvious is two tear shaped silicon breast implants under my re-orientated pec muscles with reconstructed nipples (how could I not mention them in my final blog). My nipples are made from my breast skin and fat and a full thickness skin graft from the site of my old caesarian scar. I have two tiny tattoos under my arm pits that mark where the surgeons took my sentinel lymph nodes. I record the detail because I still find these physical changes surreal.

The physical differences are not overly noticeable to anyone but me. On the day of my diagnosis I put on my favourite little black dress, went to my local beach and took the picture that’s on this blog. Today I recreated that photo, despite a lack of beach weather. You can judge for yourself.

So here’s a fond farewell to my blog. While I created you, I owe you. I’ll do a few postscripts about the Reconstruction Party, the medical tattooist and the Mother’s Day Classic. I’ve had nearly 25,000 visits, from 51 different countries. Thanks to all the readers. Silent and otherwise. I love you all.

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Day 365

It’s only right that I do a benchmark as my blog draws to a close.

The benchmarks were originally given on day 61, two weeks and five days post op. I re-read that post today. Made me cry. I had been home from hospital for one week and four days. I could not extend my arms above my head, remove my socks easily or lift anything above my waist without pain. I could only sleep on my back and then on a propped up mattress. I was uncomfortable all the time and occasionally in pain.

I have come so far.

I re-benchmarked after 28 days (Day 89), then 80 days (Day 169), then 66 days (Day 265). Now 99 days have passed for my fifth and final benchmark.

Here goes.

Arm movements are good. Full functionality with a little stiffness when I put my arms straight up. I went back to see the breast cancer physio specialist earlier this year, but haven’t returned since the surgery in March. I’m not sure whether I’ll ever go back.

I can’t swim as well as I used to. Breaststroke is weaker but I’m increasingly confident I could save myself. Something I couldn’t say last August. I think this will continue to get better, especially if I do some swim training. But I suspect breaststroke will always feel different because of the reorientation of my pec muscles.

My boobs are smaller than before. I was a 10DD and now I’m a 10D. I notice it more when I wear a sports bra or no bra. It bothers me but that’s what padded bras were invented for, right?

I can lift without any trouble, although I am cautious and likely to shirk a heavy lifting chore if I can. I am using weights for my upper body workout at the gym. My plastic surgeon has cleared me to do any activity I used to do.

I love stand-up paddle boarding and hope to spend many blissful hours doing this every summer. I can run. Not for as long as I’d like. My best is about two kilometers before I need to walk and catch my breath briefly. I’m disappointed at this but until November last year the longest I had run was for about two minutes.

I’m still not comfortable lying on my stomach. Not sure if I ever will be. A real shame, as I love a back massage.

My boobs don’t feel normal. I’m not constantly thinking they feel foreign. But I am very conscious of the difference. A change in weather can make them ache. In the cold they contract and the muscles spasm around them. To touch, the skin feels numb but not feelingless. For completeness I’ve included a final pic in the black singlet series.

I take tamoxifen every day and expect to for the next 9 years. I’m not experiencing any side effects that I am aware of.

I’m back doing my normal work hours and functions. I’m feeling more productive, although I still get tired. Hard to tell if this is new but I think it might be.

Driving, coughing, laughing is not a problem. Sneezing still needs to be properly anticipated, but that is likely overly cautious.

I still miss the softness of real boobs. I’m happy with my new nipples but it still feels like a work in progress. Stitches are beginning to dissolve. Scars need to fade. The tattoos are yet to come.

I feel fit. But I am aware I cling to this a little. If my body is strong I can fight harder if I ever need to again.

On the emotional side, I still get blue. It seems to come from nowhere and have no particular cause. I don’t feel comfortable with the term ‘cancer survivor’. I had/have breast cancer is my normal description of myself. I stumble over the had and the have, never sure which one to pick. Freud would have a field day with that. I suppose it does symbolise where I’m at emotionally with this. Betwixt and between. In the cancer camp but not.

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Day 364

Saw my oncologist today to discuss my ovary scan. Rachel came with me as Chris is away. My oncologist was true to form and completely frank. She said the ovary scan was unnecessary. These scans frequently identify some kind of aberration, which is why they don’t order them because all they cause is anxiety. Once you have the cancer label, less qualified medical professionals freak out about stuff that would usually be considered normal.

But now the test has been done and my GP has flagged the issue, my oncologist has an obligation to refer me to a gynecologic oncologist. She wouldn’t even look at the scans as it isn’t her specialty.

So no peace of mind for me and more medical appointments. I’m not anxious. Just annoyed for getting the test in the first place. I would like to close the door on this issue though.

My oncologist said I need a GP that meets my expectations of being thorough while not sending me for anxiety causing and unnecessary tests. I agree but how do you even go about finding such a person. You can’t interview your GP on their testing philosophy. Or can you?