Above & Beyond

By now you’ve probably worked out how sincerely grateful I am to those involved in my care – both medical and personal. I’ve also mentioned how often I’ve been reminded that ‘help is only a phone call away’.

Earlier this week the Practice Manager from Dr D’s (a very likable, knowledgeable and busy woman!), took the time to give me a call. (She’s also a very private person – so let’s just refer to her as ‘J’.)

J told me both she and Dr D were a ‘bit concerned’ about me, following my last visit ‘my smile just didn’t have the same spark’. I guess the emotional strain showed no matter how brave a face I tried to put on.

After asking if there was anything they could do, J asked what it was that I was having difficulty with. ‘Is it the implants – the fact you have something foreign in your body?’, ‘Is it the changes that have occurred to your body?’, or ‘Is it the fact there was a big ‘C’ in front of everything?’. (Did I mention how experienced this woman and her staff are?) My honest response was ‘no drama with the implants, but probably a combination of the other elements’.

The reality check is clearly underway (might I add J had warned me about this months ago – actually the day before my mastectomies) and I’m doing my best to ‘get a grip’. From her experience women usually ‘fall’ or ‘crash’ while the expanders are in-situ. Perhaps it’s a bit delayed in my case as I went back to work and tried to keep everything as normal as possible during that time. As J afforded me the opportunity to touch on how the diagnosis and treatment has affected every area of my life (personal and professional relationships, my career, physical fitness etc.), she reminded me that my prognosis is very good and reassured me that I’d done everything in my power to ensure that is the case.

I was also offered assistance in arranging to speak to a counsellor – if I wanted to (‘not saying you need to – but just if you’d like to’).

At this point, I’m pretty sure that (and anti-depressants – not that she mentioned them, but a Dr or two may have), wont be necessary. I told J I had my head on straight and know this is just a phase of ‘adjustment’ (big time!). I’m certain of this, in part because I’m so confident in the people alongside me on this journey.

J’s caring and compassion, the generous giving of her time and sharing of her knowledge is, I’m sure you’ll agree, above and beyond what one might expect. Another very special person, doing extraordinary things in her daily life, to help people like little old me. Sometimes, life can throw these curve balls that end up exposing you to some wonderful human beings. This, is just another example.

*You may notice I haven’t said ‘Thank you’ here. This is quite deliberate. Every time I try to express my thanks to J (and Dr D and Andrea for that matter), I’m met with a very humble ‘that’s not necessary’. Guess by the footnote – you can see I think it is!

Best & Worst

It’s fair to say that a cancer diagnosis can bring out the best and worst in people.

Granted – those who have travelled with me since April 23 this year (even back as early as January when I initially went to the Dr about the first lump), have seen the best and worst in me. For the not-so-nice displays of ‘cranky-pants-Carlyle’ – I apologise.

While fessing-up about my highs and lows, let me add there have been times when dealing with others has created a ‘mood’.

Everyone warns you that ‘people don’t know what to say’, they ‘find it hard’ etc. etc. Okay – I get it. What I don’t get is some of the irrational responses and completely insensitive comments some individuals either blurt out or concoct (perhaps in the hope of saying ‘the right thing’, but failing miserably as it just ‘came out wrong’). A clanger delivered with a very straight-face recently was that my four surgeries and the trauma my body has been through was really ‘controlled butchery’. Now – my initial shock quickly turned to an image of Dr D working delicately with scalpel in hand. I’m not too stupid to think that certain elements weren’t very ‘nice’, but comparing his expertise to that of a bloke slicing your lamb cutlets – I felt was a huge insult, to him! Secondly – as I, in my own way, deal with the fact that my breasts have been removed to rid myself of cancer and try not to feel, well mutilated – could this person not have chosen more suitable words? (or just shut the hell up!)

There’s been some remarkable examples of caring, understanding, kindness, thoughtfulness, generosity and compassion from not only my nearest-and-dearest, to new ‘cancer’ or ‘boob’ friends – and also complete strangers. (Like the parking attendant who waved me through with no charge every Wednesday morning after my 3hr session at the Cancer Council. She recognised my ‘floatie’, having used one herself while battling breast cancer years earlier.)

To all of you who have been so wonderful – my sincere thanks. To those who have found it difficult and at least tried – thank you too.

Transition

It’s become apparent I’ve entered the ‘transition phase’.

No longer am I attending appointments with Dr’s etc. on a very regular basis, no longer am I being poked and prodded, needled and taped. Now – it’s back to life as normal. Just gotta sort out what’s ‘normal’!

Apart from getting on with the day-to-day side of things, there’s actually a fair bit to work through. On speaking to people with cancer, who’ve had cancer, who’ve looked after people as they negotiate their way through ‘cancerworld‘, I’ve discovered I’m fitting the classic mould of being a bit ‘lost’. There’s a kind of hole, that above mentioned care and care-givers once filled.

You undoubtedly become attached to those who are just doing their jobs looking after you. That emotional investment is huge. It’s trust, it’s confidence and belief that you’ll make it through just fine because you’re in the best hands. Rather than feeling scared or anxious at each appointment – I actually felt safe.

Now I’m ‘out the other side’, it’s almost as if that safety net has been taken away. (I do know it hasn’t though. I’m reassured at every turn that help is available should I need it!)

As I get my head around what’s happened, how my body has changed and ultimately how my life has changed through this experience I plan to continue writing. There are so many people I’ve met on this journey who have enriched my life very much. I hope to share more about them on this blog.

6 wks after reconstruction

It’s six weeks since my reconstruction and things are as they should be. I’m still wearing the post-op bra day and night for support. Under the tape – the scars are healing well, that burning pain where the internal stitches were has eased and I’m moving about more freely. The only pain I experience now is when I’ve stretched out too far to reach something, picked up something too heavy or ended up sleeping in an uncomfortable position. Although I can’t feel most of my chest area, feeling is starting to return down my sides and underneath, where the bottom of the bra finishes.

My muscles feel pretty weak, my overall fitness has definitely declined and while I’m trying to get it back by going on walks or doing a few kays on the stationary bike – I’m frustrated at how much that relatively light exercise is taking out of me. Having a nap each day isn’t always a choice – sometimes Paul & I’ll be chatting and he ends up having a conversation with himself!

My appointment with Dr D yesterday was a bit emotional. We ticked off all the important boxes, but spent a bit of time discussing the big picture. It’s obvious my head is now catching up with what the body’s been through.

I’d really like to say how thrilled I am with the ‘new set’ etc. but, I’m not. Pardon me for seeming rude. I’m happy enough – just not jumping for joy. Those who’ve been following my story know how grateful I am, so please don’t take any of this the wrong way. I’m not excited about my ‘breasts’. Let’s be clear – they are, as Dr D promised, the closest he could get to a natural breast mound. The implants are being accepted by my body, are sitting well and look perfectly fine with clothes on.

The reality for me now is to adjust. As I look in the mirror (being thankful for the incredible effort so many people have made to get me to this point), the scars and new shape is a big change to my body. What I must acknowledge is that change = I don’t have cancer. I guess coming to terms with that will probably start to happen now I’m out the other side of treatment.

My greatest fear is that the dreaded C will come back in either the minimal breast tissue I still have, or somewhere else. I don’t intend to let that fear dictate how I live my life from hereon in.

Dr D encouraged me to gradually get back into everything – including swimming! I’m tempted to get in and go crazy (especially seeing as we’re now in the warmer months!), but have promised I’ll be sensible. By that I mean I’ll take it easy for 4-6 months before beginning training for the Masters Games next October. Wont that be a great way to celebrate? For now, my celebration will be to just lay back and enjoy being surrounded by the water.

Wealth of Information

Making informed decisions has been so important throughout these past seven months and quite obviously – knowledge is key.

Now I’m through all the big stuff, I’m viewing some of the information through different eyes.

As you know, my diagnosis was DCIS – not the standard ‘invasive’ breast cancer and at times I’ve found it a bit hard to explain (& I’m sure some of you have been left scratching your heads!)

The following link provides what I think is a really comprehensive look at DCIS – everything from symptoms to diagnosis, treatment and follow-up.

As it explains clearly – there are many factors to consider. The ones that had a real impact on my course of treatment were;

  • Age – 31 (crucial point -under 35 or 40)
  • Location – Multifocal
  • Grade – Intermediate
  • Hormone Receptor Status – Oestrogen positive
  • Sentinel Node Biopsy result – no involvement of lymph nodes

It also touches on phantom breast pain. So as you read with amusement – have a laugh at my getting used to the fact there are no nipples, when my body is screaming the left one is still there!

breastcancer.org/symptoms/types/dcis/

Here’s another one;

nbocc.org.au/breast-cancer/about-breast-cancer/what-is-ductal-carcinoma-in-situ-dcis

As far as the big picture goes – I know there are some women I’ve met on my journey who have been on/are currently on a similar ride. So, I thought I’d also include links to some other websites I have found helpful and I’m sure you will too.

To those on the support side – there’s a wealth of information for you to digest as well. One area I’d like to highlight is under the ‘My Directory’ tab at The Warwick Foundation.

mcgrathfoundation.org.au

nbocc.org.au

nbcf.org.au

bcna.org.au

cancerqld.org.au

thewarwickfoundation.org.au

Happy browsing!

Scientists to trial breast regrowth

Perhaps this will one day make the whole mastectomy & reconstruction experience less traumatic for the thousands of women who have to go through it because of cancer.

Scientists to trial breast regrowth Technology Telstra BigPond News and Weather

Another Ride


Seems in my excitement at the fact the last surgery was finally here, I’d failed to remember what my body was about to go through again. Other survivors I’ve come to know all felt the same – excitement and pure relief to get to this stage.

I’ve come out of the past three anaesthetics really well and had no reason to think this would be any different. For some reason though – it has been. I’m now eight days out and still feeling drugged up to my eyeballs. I’m not – the pain is easing and I’m not taking as much pain relief as you might think, however my system feels clogged, I feel like a wreck and am just giving into it rather than fighting to get back on my feet asap.

The pain this time has been quite different. It’s very specific, in fact I reckon I could draw a line where the internal stitches are located! After getting back to everyday activities after the mastectomy, it’s hard to have such a limited range of movement again. There’s difficulty showering, dressing, eating (especially if it involves cutting up a nice steak!) and I’m just kind of hurting a bit.

Good thing it’ll pass. Even better this is the last one.

Construction Complete

Joking about the new set being ‘under construction’ has actually provided a perfect analogy;

  • Bilateral lumpectomy/building inspection with removal of suspicious looking ‘timber’
  • Pathology/report showed termites
  • Clearance of margins/removal of dangerous looking materials
  • Bilateral Mastectomy/internal demolition to remove any trace of ‘nasties’
  • Insertion of Tissue Expanders/new flooring and framework
  • Silicone Implants/wall cladding, ceiling & carpets

All that’s left now is to decide whether I need nipples/tattooing (fancy front door maybe?), then go on a little shopping spree to take care of the decorating. Lacy bras rather than paintings and vases!

How Exciting

In spite of the fact that physically I feel, well – not so great, this is bloody exciting!

Sure – it’s early days and I’ve got a new ‘set’ to be thrilled about at some point, but here are the things I noticed in the first 24-48hrs post-surgery;

  • No sloshing!! Seriously. What a relief!
  • I can put my arms down by my side (without them sticking out around the expanders, or as Paul says ‘looking like Arnie’.)
  • The implants are soft (but not squishy or sloshy), with no hard ridges around the outside or metal chamber somewhere at the top.
  • The implants are shaped like boobs, rather than saucer-sized hot-water bottles. As such, I have a very feminine ‘curve’ at the top of my chest – as opposed to looking like a chest full of ribs.

Ohhh..I’m worn out just thinking about the changes.

Here We Go Again.

The sun couldn’t have come up soon enough on Monday.

Had my last shower with the expanders in (!), arrived at Pindara Private Hospital and made my way through all the paperwork involved. The Admissions area has become very familiar these past six months.

Amazing when I think about them really. Six months ago this week, I was in for that initial surgery – the bilateral lumpectomy. There was another operation about a week later. And exactly five months ago, I had the bilateral mastectomy.

Thought we’d get a shot given it’s the last time!


Medical history confirmed, it was time to don the sexy paper undies again!

With all the checks done and wearing the correct attire (don’t forget the paper shower cap to match!), I was saying goodbye to Paul and being wheeled off to ‘pre-op’.

A bit different this time – very quick. The anaesthetic nurse went through the necessary preparation, I spent a bit of time with the anaesthetist and then Dr D was back with the camera and purple texta. (Even though he reminded me – I knew not to smile this time. Still, I found myself laughing!)

He marked out my ‘Centre Front Seam’ as Mum calls it and where he’d like the new implants to sit. Dr D asked how I felt about going in ‘underneath’ and I told him I felt a bit differently as the reality set in following my last appointment. Here I was thinking about asking if there was a chance he could ‘tidy up’ the old scars while I was under – and he said “that’s okay, we can go through the old ones and just extend a bit.” I was so shocked and relieved at the same time I don’t think I said thank you. As you know, I’d been so flattened by the prospect of having new incisions, the healing, risk of infection etc. This was one of the nicest surprises I could have received.

With that, the ‘gas mask’ as they’re known in medical circles (no disrespect intended Dr S.) was back and injecting a clear fluid into the cannula he’d just popped into my elbow. The last thing I remember was him saying “this is the good stuff”, and me protesting “if it’s that good please tell Dr D and everyone in the operating theatre that I’m now not accountable for anything that comes out of my mouth!”