Category: Surgery & recovery

Tough tits

In the time since my operation my right foob has recovered beautifully. Initially swollen and tender and sore at the stitching site, it has settled down into a relatively squishy, comfortable part of my body which I know I will learn to live with and maybe even love. The scar, under the implant, is present but not obtrusive. The nipple is nerveless but, I’m told, responsive to touch.

Well done, right side. A round of applause.

Left side. *shakes head* Why can’t you be more like your sister?

Instead I’ve endured a red and angry scar that has been by turns very hurty and then very itchy. And s-l-o-w to heal – the doctor made me fill three scripts’ worth of antibiotics while it took its sweet time to fix itself. The radiation-damaged skin had seized around the implant, making it flatter and harder and at one point about two inches higher than the right side.

It hurt. A lot. I thought about writing  a dark and poetic piece about it, but listening to tales of pain has the same appeal as listening to other’s dreams, i.e. none. But in summary it stressed me out and made me grumpy and forced me to interact with my kids at arm’s length, as if I were a not-so-affectionate aunt.

One thing I’ve been told is tolerating pain is very bad for you. Much more effective to take pain killers and do what you can to get on top of it. You are psychologically stronger and recover more quickly.

I know this. But did I act on it? Did I fuck. We are part of a species whose actions often make zero sense. I got lazy and didn’t take the Nurofen and suffered because of it.

“I just want to hide in a cupboard!” I told Faye on the phone, through a river of snot and tears. As she has for 30 years, she listened and sympathised. She then urged me to talk to my doctor, who I wasn’t supposed to be seeing for a fortnight.

So I got an earlier appointment and went along. In fairness, the pain had tapered off on that day, but was still a major source of concern. After the routine inspection/photography-from-4-angles, I hit the file transfer button and start to download.

She listened patiently before telling me, in iron-fist-in-velvet-glove doctor speak, to take a teaspoon of cement.

“Radiated skin is always compromised. A degree of discomfort is to be expected.”

She goes on to offer a bit of comfort which I cling to like a drowning man. “While sometimes it’s chronic, other times it comes and goes. It’s still early days after the operation and it may just be things settling down.”

But of course when I call home with the summary, I headline for the sympathy “HTFU is what she said, Ted! I don’t want to HTFU! I’ve hardened up enough, haven’t I?” Back home he is tender and kind, and along with his mum they provide an excellent force field against the kids as I book more sessions in the oxygen tank and wonder how the fuck else I’m going to strategise my way out of this.

Then a strange thing happens. The next day I wake up and the pain is gone. The ghost of it lingers, but it’s largely gone. I am weak with relief, euphoric.

Another lesson: there is always room for redemption. Always. I shouldn’t believe in decline, and should fiercely believe in hope. Time was, and we’re talking last week here people, time was I’d think “Well this is it. The side effects of radiotherapy are here now. Still worth having the treatment was it? Can you live with this?” and then I’m released from pain prison and I realise there is hope for improvement and has been all along.

Maybe it’ll turn out the left implant is just a place I hold tension. I am certain it’ll play up again and aesthetically, it’s still hard and high. But I can also be hopeful any pain it causes me won’t be permanent.

In the meantime I salute/take my hat off/give a deep bow to anyone actually suffering from chronic pain. People call me brave but you… you are legend.

Switcheroo

A routine check up at the plastic surgeon’s this week, where I received some great news. The good doctor says my skin has recovered sufficiently from radiotherapy to proceed with what’s known in the game as ‘the exchange’. That’s to say the switch from the saline-filled implants – the tortoise shells – to the gel-based ones – the squishies. I am booked in for the operation next Wednesday.

Most surgeons flat out refuse to work on radiated skin, fortunately Dr. Moko is in the minority. I had prepared myself for months of waiting, however she is confident there’s no need to delay. On the day of my upcoming surgery, it will have been just eight weeks since my last radiotherapy treatment. Apparently my skin has shown remarkable resilience. I’ll never know what element of the care regime helped most – the Miaderm cream, the hyperbaric oxygen, the vitamin E oil (that made me stink like a docker, by the way) – but in combination, they’ve done the trick. And while problems could present themselves on the irradiated side at a later date, here and now I’ve plenty to be encouraged by.

It’s a far simpler procedure this time around, and while I’ll be under general anaesthetic I’ll be in and out in about an hour and can go home the same day. There will be no drains to manage, no complex pain relief regime and few restrictions to my mobility. I will have to look after the stitches, though, which I didn’t do very well last time, but I’ve learnt my lesson and will take it a bit easier.

The doctor will re-excise the cut under my right, prophylactically-removed breast and make a new cut under the left, irradiated side (the existing scar runs along the middle). This is disappointing in that I’ll get another scar on the left side, however it’s a relief too because the existing scar has healed well and I was concerned whether it’d hold up if it was cut open again. I know it’ll look okay. I’ve come a long way since my first encounter with the new me back in August. I can recall my horrified reaction and the brutality of the physical response it evoked – self-loathing manifesting as nausea and breathlessness. Yuck.

As surgery approaches, I find there are many familiar elements but the way I feel about it is totally different. The other day, I sat with the surgeon, calmly discussing which implant to choose, round or anatomical ‘teardrop’ shape. She recommends teardrop: “It’s a more natural look, and better if you’re leaner.” Breastless I may be, but I am all woman and am delighted by the compliment. Physically holding them, weighing them up, I had the sense ‘this is surreal’ but this time I could see the humour. The last time I held one, my ears were ringing and I was going out of my mind with fear and repulsion.

Next on the bizarre-but-now-normal discussion agenda – nipple reconstruction options, which would require a third surgery followed by a session with a specialist tattoo artist who draws on an areola. But Ted and I have discussed it at length and kind of like how it looks currently, so have decided not to bother. “That’s not uncommon. Nor is changing your mind. It’s completely up to you and a very personal decision.”

That it is. I want to look normal from the outside whilst living with the no-nipple deformity (horrible but accurate word). I can completely understand how some people would hate to look down and be reminded every day of What Happened. I, however, feel need to acknowledge it.

Plus I can’t be fucked with the extra surgery, choosing an areola colour and all that shit, no thank you.

Anyhoo, I take the well-trodden path from the surgeon’s office into that of the account manager’s, where I sign the paperwork and pay the (less eye-watering, but still significant) bill. I got presented with the admission forms for the hospital, and the foil-wrapped surgical soap I’m to use pre-surgery. Then the fasting rules. So far, so familiar.

Next a new twist: I need to sign the breast register. There is, ladies and gents, a centralised database with all the world’s falsies registered on it, presumably so should they explode at altitude, spontaneously combust or melt, they can do a recall. Here’s another ‘did you know’- a hallmark of any boob job (post mastectomy or not) is a lack of cleavage –  there will always be a gap between the two implants. This fact ranks about 18th in the Why This Sucks charts, but hey.

Later, I say to the man I love over his birthday cake “We’ve gone teardrop, Ted. That’s okay isn’t it?”

“Yeah, natural over porno.” cheeky half smile “I suppose that’s a good thing.”

It is indeed.

As is the fact that the surgical journey will be over in a week. That, my friends, is a very, very, very good thing.

It ain’t over til the flat lady sings

To start, a summary of the story so far. Late July – early stage breast cancer (DCIS) diagnosis received. August – double mastectomy and the start of reconstruction. September – reconstruction continues with weekly injections of saline into the implants. Pathology results reveal good and bad news: good is there’s no cancer in my lymph nodes which means it has not spread (in fact this is spectacular news), bad is that cancer was 95mm long, fast-growing and just 0.02mm from the chest wall (an ‘extremely close margin’). October – consultation with numerous specialists to discuss if radiotherapy, which reduces the risk cancer will recur in by about two-thirds, should proceed. While it is not normally recommended for post-mastectomy DCIS patients, if they are young (!!) and had a cancer that was long, fast-growing and with close margins, it can be considered worthwhile as these are markers of more a resilient disease. November – decision to go ahead with radiotherapy to the entire left chest. Necessitates deflation of right falsie to about half its size, as inflated it was getting in the way of the radiowaves reaching the treatment area which covers about 6″ square extending from the centre breastbone to the left armpit and down to the lower bra line. Skin gradually reddens over the course of treatment and ends up looking like There’s Something About Mary‘s flatmate.

On Tuesday 10 December, the radiotherapy I’d attended each week day for five weeks finally ended. I took about 35 selfies, finally uploading this one to Facebook with the message ‘it’s over’.

But as the ‘likes’ poured in and the declarations of ‘great news!’ mounted, I sorely regretted saying it’s over because it isn’t! I have many, many rivers to cross. While it’s a huge milestone to have finished radiotherapy – I have officially done all that is medically possible to rid myself of cancer and am genuinely pleased that I don’t have to undergo treatment every day anymore – the celebratory Verve and vol-au-vents tasted bittersweet to me.

My mind has turned to the numerous appointments with my plastic surgeon that lay ahead. Once my skin has recovered, there’ll be another surgery to exchange the saline bags with the ‘real’ fake boobs. Down the track, the irradiated tissue is likely to seize up around the implant and require yet more surgery. Also, I’ll have follow up consults with the cancer surgeon every six months.

If the practical hoo-haa was all there was to it, that’d be fine. But it’s bleaker than that and emotionally right now, I’m a dog’s breakfast. With radiotherapy requiring daily to-ing and fro-ing, I haven’t had room in my head for cancer anxiety, but it’s creeping back. What if I’ve gone through all that and it’s not enough? What if it comes back? My body’s proven it can betray me. Can I trust it again?

Experiencing this against the backdrop of euphoria is a nightmare. It’s the old expectation versus reality thing, and it’s not the first time either – once back from hospital after my operation I was on the receiving end of a flurry of congratulations I. Just. Did. Not. Want. I remember, too, being surrounded by celebratory flowers whilst nursing Amy and feeling guilty that I wasn’t on cloud nine. I was in post-partum pain, blindsided and overwhelmed by the new responsibility just at the point people were ready to leave me to it.

I have that same feeling now. Those around me are desperate for closure. “How are you feeling?!” they ask, as if they’re an interviewer shoving the mike in the face of a winning sportsperson at the end of an epic match. “Oh, very relieved!” I say, not wanting to see the smile on their face dissipate.

Still, asking me how I feel is far, far preferable to telling me. Many have declared “You must feel delighted/relieved/like celebrating/so happy!” It’s delivered in such a well-meaning, positive way, I just don’t have the heart to be honest. “Yes, I do. And tired!” I say, hoping that explains the lack of enthusiasm in my response, plus I am tired, to the bone. Inside is a hatful of hollow. Later on in the day of unwanted congratulation, I’m relieved to receive an email from a friend, who unwittingly articulates everything I’m feeling (how ironic!):

My writing isn’t sufficient nor is it appropriate I think for me to say things like “you must be so [insert descriptive word]” but it isn’t my business how you ‘must be feeling’. I won’t ever tell you how to feel, or what to do, or what to think cos it’s none of my  business and if ever anyone ever dare do that to me, I would frown and tell them to fuck right off.

I was so grateful to read this. In his book C: Because cowards get cancer too the late John Diamond talks about friends who never come to terms with his illness and how he senses their impatience for him to recover so things can get back to normal. In the meantime, his reality is a thorn in their side.

I know there is true love behind the relief people feel on my behalf, but what use is this relief if I don’t feel it?

PS: Please don’t panic if you’ve offered your congratulations, or suspect we had a “You must…” interaction. I am a work-in-progress (aka big fat hypocrite) on this front, having only yesterday told my divorced friend that she ‘must’ be looking forward to Christmas with her son. She responded “No. He’s with his dad. I’ll be on my own on Christmas day.” Right then…

Back on the mat

A mental basket case I may be but physically these days, I’m in great shape. I am free of pain, the scars have all healed and I have full movement in my arms and shoulders. I’ve been so encouraged by this I decided to restart my online yoga classes.  I believe the daily yoga I’d practised in the weeks leading up to my diagnosis contributed to my strong recovery, but I had to lay off exercise in the weeks after surgery.

So tonight I decided to get back on the mat. With the kids in bed I went through the once familiar routine of rolling out the mat, loading up the class and asking Ted to put the kettle on in 25 minutes.

Just a regular night round our way. Taken from this article http://www.buzzfeed.com/lukelewis/the-most-pretentious-things-ever
Just a regular night round our way. Image from this article http://www.buzzfeed.com/lukelewis/the-most-pretentious-things-ever

I chose the easiest sequence to give me what I hoped would be a gentle reintroduction. However within 30 seconds, I was unexpectedly confronted by the new normal. I could not follow instruction 1: sit with your legs crossed. My right knee refused to go anywhere near the floor, and my hip creaked with pain when I tried. Could it be coaxed downwards with exhalations? Absolutely not.

What followed was 30 minutes of utter humiliation. Collapsing in balance poses, hamstrings juddering when attempts were made to straighten them, arms quivering in down dog and a right hip that revealed failing after failing. And feeling my fake boob pressed onto my thigh? Very, very strange.

I winced, I panicked, I wept and felt sorry for myself. None of this is very yogic, I know. But come on, is there any part of me that’s going to escape unscathed from this ordeal? Jesus.

Three months ago, on a visit to Faye’s, I went through a few poses whilst chatting with my oldest pal. I had the awareness to feel self-conscious and explained. “It’s just I’ve got good! And I want to get better. I only need to miss a couple of days and it feels difficult.” Clearly this was too much hubris for the Gods’ liking – perhaps that’s when they marked me out for such an extensive hobbling.

I’d become hooked, I told her, after recognising the bang for your buck yoga offers, making it excellent exercise for the essentially idle. It’s physical, spiritual and mental and after tonight I’m exhausted in all three departments

I just can’t shake the memory of how good I’d been, although at the time I was much more focused on my limitations, of course. I couldn’t make up a more accurate metaphor for my entire life right now.

Tomorrow I’ll go back and the day after too and I’ll make tiny steps towards flexibility and this will represent another opportunity to ‘grow’ on my ‘journey’. But sometimes I wish so damn hard that I could turn back the clock to the not-so-many days ago when I was limber and didn’t know it.  Nor did I know I was born.

Real time melancholy

A friend observed that my post-surgery posts have a more vulnerable tone to those I made pre-surgery. She’s right, of course, although this was hard to hear because like most people, I associate vulnerability with weakness/not coping. I think they were like that because I was in shock and denial. Since reality has crashed in, I’ve felt way more exposed. But another friend told me “you are a wonderful example of Brene Brown’s “power of vulnerability” in action!” This encouraged me to revisit Brown’s TED talk (nearly 1.5m views), after which I felt better about my vulnerability which is just as well because I’ve been feeling it to the nth degree.

One reason for this is that medically, I’m at an impasse and who likes residing there? Up until now, most decisions relating to treatment have been easy to make and I’ve not regretted any of them. Because of the non-invasive nature of my cancer, and complications relating to reconstructions on radiated skin, follow up treatment (namely radiotherapy) typically does not occur for women with DCIS who’ve had mastectomies. But I believe in my case there are a number of factors which increase the risk of a recurrence and so radiotherapy would be worthwhile. The quality of resources you can find online are amazing (and shit scary) and my reading of them is there’s a 50% chance if my cancer were to return, it would be invasive. I don’t feel comfortable waiting around for that to happen, so I’ve got a referral to see a radiation oncologist and am going to state my case. Emphatically. And, of course, listen to what they have to say. For more about the medical side, you can read my post, and a dizzying array of jargon, in the world’s largest breast cancer forum.

So that’s the short answer as to why I’m not great company at the moment, and the one I share when people ask (with their head cocked to the side) ‘how are you?’ I so don’t want to invite people to take a look at the emotional debris. That landscape is just scary crazy right now. I am mad as a bloody cut snake. I feel so very angry for all the reasons cited here and I am deeply ashamed to admit I’ve been resentful of other’s health, too. How come that fat man’s okay and I’m not? How has my neighbour managed to get to twice my age with only minor problems? I’ve even double dipped into my own misery banks with thoughts like: How come not only do most of my peers enjoy good health, their parents do too? What a revolting behaviour, but I’d be lying if I said I hadn’t felt it often lately.

What’s more I’m totally inaccessible to fixers at the moment, which makes me even more difficult to be around. I am surrounded by, and yet wholly unreceptive to positive talk about the future, because all I can see is rubble. I badly feel the need to stand amongst this, and respect the extent of the devastation rather than be encouraged to survey the architect’s new drawings. That will come, I am sure, but right here and now, I need to, and fucking well deserve to grieve. I had cancer. I was amputated. It is a real loss.

But my present, cynical view of our ‘get well soon’ culture is that bad times don’t get given any airtime or oxygen. They are regarded as anomalies. I feel myself being chivvied back to ‘normal’, where life is sunny and optimistic and uncomplicated, and I don’t care for it. I do have ears, though, for people who’ve had cancer. Or a long spell in Miseryland. But really, I need to stay in the dark and carry my weight alone, and just be sad until further notice. My friend Sue describes it like this:

People want the Julia Roberts movie version of things. The plucky young woman, facing illness with wit and bravery, inspiring others along the way, looking beautiful if a little wan in cashmere whilst they do it and going onto write a bestselling book along the way. They want things to come of bad things in the instant. And I hope that movie happens for you. And it likely will, or at least part of it. But no-one wants to really take on board the bit that the movie skims over that involves long-shots of Julia struggling as the seasons change before finally she is running along the beach. That is not a movie people want to watch unless they are Swedish.

This brought a smile for many reasons, one of which was it brought to mind the Team America montage song:

Back in real time, I described how fearful I was of my emotional state to a friend who’s a counsellor. I am so worried that I’ll sink into a depressive state and drag my family with me and haven’t they been through enough? Catie assures me that grief is quite different to depression and I can expect my feelings to fade over time. In a message to thank her I said “I am still in the thick of it, but I can see a tiny light in the far off distance that I’m inching my way towards.”

That evening, serendipity struck when Sue’s quote of the day was:

There is light and there is darkness. There is always a bit of light. Stay with this light, just with that little bit. Don’t look for a bigger one. Stay with what you’ve got. It’ll grow. Stay with the small light. Very important. Stay with it. Don’t stay with what you haven’t got. Light is light.

For the first time in many days I felt encouraged and not irritated by this kind of talk. The non-miserable part of me bubbles up and takes a fancy to this quote’s quiet, determined tone.

I don’t want to be shoved towards the light. But I will get there.

Notes from a ward

Before the memory of the hospital experience fades entirely, I thought I’d make some notes on life inside the institution.

photo (6)

Clockwise from top right

Vanity Fair what a treat to read this uninterrupted! I had a subscription for ages up until five years ago. It made me all nostalgic for life pre-children.

The pink cushion – one of a pair – to protect my underarms for the first few days post op. They were a gift from the hospital’s women’s auxiliary and considering I threw away all the padded coathangers and knitted teddies they gave me when I had my babies, I’m relieved to actually get some use from one of their very thoughtful donations.

Bed goes up, bed goes down control. It wasn’t until the penultimate day that I found the legs go up, legs go down function which took comfort to a whole new level.

TV goes on, TV goes off control.

Compression socks to prevent DVT. They also prevented dignity, comfort and self confidence.  Just above them is the equally demeaning ID tag, one of two. For the purposes of the photo, I ripped this one from my ankle. A surprisingly difficult feat.

Tupperware containing PG Tips tea bags. In the lead up to my admission, the thought of several days without a nice cup of tea was a genuine source of anxiety. The lovely tea lady was very happy to oblige my quirky English ways.

Menu card. All the cliches about hospital food are so very true. Like airplane food from 20 years ago…incredibly uninspiring. I made my selection with a ‘tick’ and only realised on the last day there was an instruction on the card to ‘tick for a small portion’. How else are you meant to mark a box?! I lost 2kg that week.

Mini packet of biscuits – why are these always inedible?

Medication time!

Macbook Pro and wifi card = sanity saved.

Cancer Council’s leaflet. “I’ll leave this in the hospital, with the cancer.” thinks I. Hmm…

Home made trail mix, a gift, much appreciated in the absence of proper food.

Here are some more pictures of life on the inside and if you’ve a strong stomach you can check out this pic of the drains doing their thing.

Calling all stations

I vividly recall one of the first conversations I had about this experience. It was with my friend Suzanne, the day after my mammogram. It sounds daft but I already knew the news wasn’t going to be good. “I’m on the train now!” I said, weepily (note I was able to mangle a metaphor in spite of the tears) “And I don’t know where it’s going to end.”

Six weeks later, I still don’t know where it’s going to end, but here’s a summary of the journey so far.

17 July    
Mammogram & ultrasound, fine needle biopsy.

22 July
GP for pathology results, initial diagnosis which estimate a 3cm long DCIS tumour.

25 July
First meeting with breast cancer surgeon Dr. Leong to discuss treatment options.

1 August
MRI to get better quality imaging, which will help us decide on the best treatment.

6 August  
First meeting with plastic surgeon, Dr. Moko, to discuss reconstruction options (should I proceed with a mastectomy).

Want to get off the train yet? Me too.

7 August
Dr. Leong to discuss MRI results which estimate a DCIS tumour that’s 5cm long. Decide on double mastectomy. Arrange surgery date.

9 August    
Meet with the anaesthetist Dr. Crilly to discuss operation drugs and post op ‘pain management.’

12 August
Hospital admission. Surgery followed by daily consults with surgeons. On 14 August, I’m fitted with a corset-style bra with ten hooks and eyes. I am instructed that it needs to be worn ‘day and night’.*

17 August    
Hospital discharge.

20 August    
Dr. Moko for first ‘expansion’ namely saline injection to pump up my new boobs. This happens gradually to allow the skin to stretch.

22 August
Dr. Leong to discuss pathology results, which were all clear, but… The DCIS tumour revealed itself to be 9.5cm.

27 August
Dr. Moko, second expansion.

28 August  
GP for referral to psychologist and radiation oncologist. This happens:FB GP gaffe
Coming up:

3 September
Dr. Moko, third expansion.

9 September
Dr. Tulasi, radiation oncologist to discuss whether further treatment is recommended.

11 September    
Dr. Grice, psychologist.

Date not known
Second surgery with Dr. Moko where she will remove the saline-filled expanders and insert permanent implants.

I’ve also got a referral for, but can’t yet be arsed to make an appointment with a genetic counsellor to discuss BRCA gene testing, which, if positive, could make me a candidate for a preventative oopherectomy (ovary removal.)

Moral of the story: don’t get cancer if you’ve got lots on.

* The bra was initially very tight and uncomfortable, so I was looking forward to half a day without it while it went through the wash. Little did I know that braless, my ‘breasts’ would drift apart on an orbit towards my armpits! Felt like the edges of grapefruits were brushing up against my inner biceps. V. disturbing. It went back on the second it was dry.

A hair’s breadth

A couple of times on this long and bumpy road I’ve encountered severe loneliness. This has coincided with times the general mood has conflicted with my own. For example there was an assumption that “It must be lovely for you to be home from hospital!” Well actually, it was difficult. I was brutally exposed to my limitations. I couldn’t hold my son. I had to surrender to help (that I know I’m lucky to have) and recognise that life was going to be different now.

A week later and I am physically healing well, sleeping fine and am able to make a number of small contributions to the household. I am adapting to the new normal.

Still, yesterday this onslaught of loneliness happened again when I got the “all clear, but.” While there were whoops of joy around me for the all clear, my mind kept snagging on the ‘but’. I loathe how this disease has given my optimism, which I have worked so hard for, a roughing up. Plus if flashes of irritation were to appear from those around me that I can’t get with the celebratory program, that would be understandable. I wish I could, I really do. However, I don’t feel as if I’m out of the woods.

[youtube=http://www.youtube.com/watch?v=SfkvPnjb9hs]

I was looking for the all clear, then I got the all clear, and heaven knows….

In brief the ‘but’ is that while all the cancer was removed from my body, the ‘margins’ namely the gaps between the edges of the breast tissue that got taken from me during my mastectomy and subsequently pathologised, and the cancer were less than 0.1mm, in fact in one measurement it was 0.02mm. This implies that while all the tissue it is possible to take in a mastectomy was taken, there may be remnants in my body that could grow again in years to come. It would not be breast cancer then, but may appear on the chest wall for instance and my (albeit layman’s) understanding is prognostically, this type means you’re pretty much d-e-a-d. The cancer recurrence rate post mastectomy is meant to be 0.03% but for those, like me, with low margins, it’s more like 5%.

This is still pretty low, I realise, but if it could be reduced further by a course of radiotherapy, for instance, that is something I would consider (although there would be implications for my breast reconstruction should that occur.) Say having a mastectomy means I’ve paid a ‘price’ of $1,000,000, I don’t want to get cancer again because I should have paid $1,001,000.

Anyway I’ll be taking advice and will not take any drastic action, it’s just… it’s not over yet.

Another reason the saga continues is I’ve decided to see a psychologist to help me get my head around the epicness of the last six weeks. I think I’m ready now. After all when you have appointments to go to, an operation to prepare for and a big logistical banquet to organise you can keep your mind focused on that. Now that’s finished. It’s the beginning of the end (or at least the end of the beginning). Time for the genuine processing to start.

Plus I’d be lying if a tiny part of me didn’t want to see a shrink because I think it’d make for entertaining blogging fodder.

In my head (or the movie script) I’d drafted a ‘thank you’ post acknowledging everyone who has helped me along the way. And another ‘silver linings’ style post.  These may still come but not for a while.

Essentially I had hoped to be able to wrap up the little c and carry on blogging in a spin off  which focused on the reconstruction effort but I can’t, not yet. Not when the unwanted guest has demanded more airtime.

So here we are.

Woo! hoo?

So I got the results from the pathology today and heard lots of positive news. My lymphs are clear, which means nothing has spread, and there was no invasive cancer (‘microinvasions’) in the affected breast. There was no sign of anything troubling in my right breast.

But.

When they took the breast tissue and spread it out they discovered the ‘margins’ namely the space between the cancer and the sample were very narrow indeed, less than 0.1mm, which means I am at a higher risk of a recurrence on my chest wall, for instance. Dr. Leong doesn’t believe follow up radiotherapy is required, but is going to take my case to the review panel to check.

The DCIS was very long – 9.5cm. Given the mammogram & ultrasound estimated 3cm and the MRI 5cm, this goes to show how the best imaging can only tell you part of the picture.

A positive thing this demonstrates quite emphatically is that a mastectomy was definitely the best, in fact the only choice in my case. If I’d have gone for a lumpectomy, they would have had to reoperate. So that’s a relief.

There is masses to be grateful for. How much longer before it became invasive? How much more concerning would the lousy margins be if invasive cancer were detected? And some people’s results show no margins whatsoever.

Also, is the story as bad as all that? I agree with Robert that there could well be an element of arse covering:

I hate how specialists so often leave the ‘small chance’ language to linger. I sometimes wander if it’s a ‘cover my arse’ strategy due to fear of litigation. I think we’re all ‘ones to watch’ these days, there appear so many things out to get us! Like sharks in the harbour – make the water cleaner, have more pleasure cruisers and what do you get? More shark sightings. Not necessarily more sharks.

Am I disappointed that the all clear isn’t clearer? Yes. I had hoped such comprehensive treatment would make the likelihood of a recurrence miniscule. It is still pretty small, though.

Plus who amongst us can hope for a life free of worry? I know my worry list today is a good deal shorter than it was yesterday. When I feed Theo tonight, for example, will I contemplate whether I’ll still be there when he’s in secondary school, like I did last night? No. I am going to be there, for sure.

There is still plenty to celebrate. Plenty.

Cheers!

Nitty gritty

Having this condition gives you a whole body workout. It shoves you a million miles out of your mental, physical and spiritual comfort zones. You’ve all been great companions on the mental journey I’ve insisted on (over?) sharing. So for a change I thought I’d describe what’s occurred on a physical level.

At midday on Monday 12 August, my huge cloud of prayers, love and light and I were wheeled into theatre where two surgeons were waiting to do their work.

The first was the cancer surgeon, Dr. Leong.

For her opening trick, she performed two sentinel node biopsies, which will identify if any cancer has spread outside the breast (it better bloody not have.) Here’s my layman’s understanding of the process. On the morning of my op, in preparation for the biopsy I went through a complicated process to find out which of my lymph nodes was the first to take up the fluid – and potentially cancerous cells – from my breasts and into my body. So their unceremonious swan song was for each to receive three injections of radioactive dye. As the pathology unit had once again given Dr. Dreamy the day off, the needles were inserted by an old duffer with hairy nostrils who insisted on reiterating the fact it’d sting six times, and wincing each time he inserted one. If he was trying to reverse psychology me into making it not hurt, it worked. He then gave each breast a little massage to expedite the draining process (so weird I know! And I promised to give the ‘mental’ a rest.) Next I was to wait an hour before spending forty minutes having imaging taken by an exceptionally sophisticated and no doubt incredibly expensive camera. At the end of this process a technician took a thin-tipped magic marker and put an ‘x’ just inside the fold of each armpit, about 0.5cm away from where it gets tickly.

In theatre, Dr. Leong took a gamma machine to the armpit to help confirm the precise location of the first, ‘sentinel’ node. She then made the cut, found the node (good news, they don’t always make themselves known) biopsied it and prepared a sample for pathology. Twice. Performing this on the right side, where the breast has shown no signs of cancer and was removed prophylactically, is a sign of an extremely cautious surgeon. But there is no testing the nodes after a mastectomy so it was then or never.

She then went on to perform two kinds of mastectomy. On my right breast was the least invasive it is possible to have – known as ‘nipple sparing’. The incision occurred under the fold of my breast and the fat, tissue and nerves are scooped out, a bit like taking the flesh from a melon, leaving the skin and nipple attached.

On my left, I had a ‘skin sparing’ mastectomy, which is the second least worst type you can have. According to the MRI, which is the most accurate imaging tool available, there were signs of ‘abnormal activity’ right up to the nipple. You can attempt to ‘save’ the nipple in this instance but it’s risky. If you try when imaging suggests there’s cancer you are obliged to have the skin behind it pathologised during surgery to see if there are cancerous cells there. My surgeon told me the sample needs to be as close to the tip of the nipple as possible, as all you need is one bad cell to survive at the tip for post-mastectomy breast cancer to reoccur. But if you take the sample too close the nipple’s edge, you compromise its blood supply which means you could save the nipple during the mastectomy only to have it shrivel up and fall off down the track.

Can you believe this shit?

I will not know for certain whether the MRI was correct until this Thursday at 1.30pm, when I visit Dr. Leong for hopefully the last time to collect my pathology results and, I very sincerely hope, the all clear. Need more prayers and light and all that then, please people – having undergone the gold standard cancer treatment I have zero desire to go on a crash course in wigs and hats.

Anyway to be on the safe side my left nipple was removed during surgery. So on this breast the incision was made all the way across the middle with an almond shape cut either side of the nipple which was once again prepared for pathology.

Dr. Leong’s work was done.

Next up is Dr. Moko, my plastic surgeon. She inserts two expanders under my pectoral muscles. Each expander is a round plastic pouch about the size of a drinks coaster, and each will be injected with saline over the coming weeks as part of the reconstruction. She kicks the process off by inserting 100ml in each pouch, which explains how come when I wake up, my chest is not concave as I had expected it to be. It’s all kinds of wrong, but not concave. Anyway, back on the operating table four plastic tubes – attached to drains and surgical bags – are inserted a few centimetres south of each node biopsy site. Over the next four days they will collect a total of more than a litre of blood and fluid and will get in my way each time I try to use the loo or walk anywhere.

I am stitched up. At two sentinel node sites. Under my right area formerly known as breast. Across the middle of my left AFKA breast, pulling the almond shape closed on its way. The tubes on the drains are held in with a stitch. All of the stitches – read ouchies – are covered in masking tape and I’m brought out to recovery where I scoff an ice lolly. The whole process takes five hours.

Five days later, I finally leave hospital minus the drains. Because I am not allowed to get anywhere that is taped wet, I feel only semi clean and will remain that way for several weeks.

On day one back home, I was shocked to discover I could not manage even light duties and I’m to strip off the sackcloth and concentrate on recovering/getting over myself. As instructed, I take 4 x 2 Paracetomal daily to elevate my baseline pain threshold and control any further pain with a codeine tablet. The codeine works, but I use it sparingly because it extracts a price of nausea, dopiness and constipation.

I am able to take short walks, and know to turn back before I expect to need to. On Monday, I dialled in to my weekly directors’ meeting and enjoyed a long catch up of the happs both in the business and out, before excusing myself for a lie down.

I’ve been home five days now and while holding Theo is still impossible, I can feed him and play with him whilst he is in his high chair. The girls – having been reminded a dozen times – are respectful of my limitations and have adjusted pretty well, calling on me for stories and as a hair model. I’ve got about 60% motion in my arms. I can’t carry anything heavier than my phone or a cup of tea. I can reach forwards and partly to the side but crossing my arms in front or reaching high is a no go. I could do the Charleston and a robot dance, but not Saturday Night Fever.

Today, I went to see the plastic surgeon again for a further saline injection into the expander. I need a bit of a break before penning a post that will probably be called something like Needles, mirrors, tears and pain.