Month: September 2013

Honest appreciation

One adjective I hear a lot in relation to this blog is ‘honest’. I clearly have a limited concept of shame as I don’t really see it that way. My view is, since I’ve made the decision to share something so intensely personal it makes no sense at all to then be coy about it.

Which is just as well as there is plenty about this (cliche klaxon!) journey which is deeply sensorily unpleasant, as I discovered this week.

On Monday whilst in my office, I caught an unpleasant smell. I searched the room for a discarded milk beaker or a scrap of food… no luck. On Tuesday I visited the plastic surgeon for my penultimate expansion. When the nurse peeled back the dressing I realised the smell was coming from me. There’s a 3mm split in the stitching on the left AFKA breast and it had leaked a small amount of clear fluid called serous. Are you pulling a face of disgust? I hope so, because I did, and then I started… can you guess? Crying!

With a tenderness that made me cry more, the surgeon cleaned it up then wrote me a script for antibiotics in case I get an infection. I’ve been instructed to lay off the yoga as I’m pretty sure some vigorous arm movement is what caused it.  I pushed myself on the mat when I should have respected my limitations. I obviously had something to prove, but all I managed to prove was that I’m a twat.

Some encouraging news later in the week, though, when Ted and I went to another cancer surgeon for a second opinion as to whether I need radiotherapy. Picture a surgeon, and Dr. Simon will fit the bill. From a more traditional mould than my (amazing!) female specialists, he is bald, clean shaven and kindly. His slightly untidy room was full of tomes with titles like The anatomy of the breast along with a few thank you cards from patients.

He read the notes then jotted down my answers to questions which I’d anticipated and rehearsed. I felt calm, coherent and together until I uttered “I’ve got three young kids and I’ve got to do everything I can. Everything!” The words came out in a sort of asthmatic honk. Not for the first time, I was offered a tissue by the doctor who didn’t even need to look for the box. This obviously happens a lot.

“I can understand why you want the treatment and would be  happy to recommend it.” he said, to my relief. He’s the first expert who hasn’t dismissed me off the bat. “But.” The but. “I want to take your case to panel review to see what my colleagues think.”

I’ve decided ‘take your case to panel review’ is code for ‘no-one really knows what the fuck’s going on’. This’ll be the third time my case has been panel reviewed and the outcome is anyone’s guess, but I’m heartened this doctor will support my inclination to have radiotherapy.

He offered up some more information. “I am influenced by what I’ve seen. I’ve operated on a woman with a cancer very much like yours. Twice.” i.e. he’s seen a post mastectomy recurrence. I asked “And how is she doing?”

A pause. “May I examine you?” Hmm. I use this evasion technique on my kids. “Can you feel this?” he asked, tweaking my (lone surviving) nipple. “No.” Another moment so bizarre it brought on an out of body experience. He remarked the plastic surgeon has done an excellent job. “The best I’ve seen.” Which was kind of a compliment but also a reminder of what’ll be compromised if radiotherapy proceeds.

Earlier in the week, I read C : Because cowards get cancer too by John Diamond who died in his mid 40s. I nodded a lot. An extract from the final chapter has been in my mind all week.

I said to Nigella “It’s strange how in the last year, I’ve never appreciated you so much. Or the children.” … For the first time I found myself capable of talking like a 50s women’s magazine article without blushing…I still don’t believe that there is any sense in which the cancer has been a good thing, but, well, it is strange, isn’t it?”

A silver lining that is something of a paradox is that while I’m sure my kids’ behaviour hasn’t altered, I’m much more easy going around them now, almost like I’m their granny rather than their mum. Most of their transgressions seem so minor. Also, it suits me and Ted to be more laissez-faire right now. Yeah, stick the telly on. Hot dogs for dinner? Why not.

They are not the centre of my attention right now but at the same time I’m listening to them more. Laughing with them more. And appreciating them more?


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
Just a regular night round our way. Image from this article

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.

There is a light (and it never goes out)

I had my first meeting with the psychologist and it was remarkable. Before going, I was open minded but cynical too. But he got the measure of me very quickly. He was genuinely engaging and interested and hooked me in by saying we’d analyse my situation together using critical reasoning. Well played, sir. Well played.

I was able to converse coherently although broke down when talking about Ted and his myriad kindnesses. He remarked “90% of people cry when they’re in here and I worry about the 10% who don’t.”

At the end he gave a summary of his impressions, that I was smart and psychologically switched on (preen, preen – he has correctly pegged me as a Narcissist) and that he thinks in our future sessions he’ll be able to help me chart my way through this major life challenge.

“Shovel the shit, you mean?”


When saying goodbye I asked “Did I cry the right amount?” and I knew for sure he was the psych for me when he laughed out loud in response.

Given its dominance within my mental landscape we talked at length about the radiotherapy quandary. He observed that my head needs to be engaged as much as the heart in a decision like this and perhaps switching off for a while may help.

Funnily enough, the night before a friend responded to my last post’s crystal ball plea with the idea that I should, if possible, allow some time to pass before deciding.

I see synchronicities like this all the time, particularly nowadays.

Anyway together these suggestions had a profound effect on me. I was able to see the clear benefit of letting my emotions settle and allowing my head to get a look in before making any decision. There’s a three month window after surgery in which I can have extra treatment, so why not use the time?

On the way home, I gave myself the following lecture.

Here’s an idea. How about you exhale?
How about you stop acting as if there’s a loaded gun against your head that’ll go off at any second?
How about you honour the threat you’ve felt so keenly by being more present, instead of half listening to the kids because you are obsessed by stats?
But if you must think of stats, how about thinking about being in the 85% rather than the 15%?
How about calming down and letting go?
How about closing the tabs on
How about switching the station from Radio Pity to Absolute 80s?
How about having a beer with Ted, dancing to The Smiths and explaining what a double decker bus is to the kids?

So that’s what I did.

Treat yourself

Because radiotherapy is not typically given to women who’ve had DCIS and a mastectomy, I suspected the radiologist may struggle to make a recommendation on the spot. That’s why the week before my consultation, I emailed her a two paragraph summary of what I was hoping to discover during our consult, namely what are the pros and cons of radiotherapy in my case.

“Your doctors must love that you’re so proactive!” remarked a friend, kindly. My suspicion is they’re in despair that someone with a diagnosis and a computer can access studies and forums and within weeks can gain a little knowledge (= a dangerous thing) whereas they had to go to medical school for years and years to gain their expert status.

I went to the consult armed with my research (!!) which shows although general recurrence rates are quoted at 1-2% for DCIS mastectomy patients, there are a number of factors that raise my risk the cancer will return to about 15%, notably that cancer was found so close to the edge of the extracted tissue, less than 0.02mm away. In the ‘throw the book’ vein, I want to access radiotherapy to hopefully destroy any cancer cells that might be lingering inside me.

I worry that by seeking this, I’m being an overtreating nutter. And because I’ve not met an expert who thinks extra treatment is justified, no doubt that’s what they think too.

To her credit, the radiologist had done a bit of homework and printed out a study (that I’d already read) whose conclusions were inconclusive. And that was the tone of the whole consult. That and slight disdain. I knew I was in trouble when she said “You didn’t really have cancer” (*sigh*) and she couldn’t hide her incomprehension as to why I’d had the prophylactic mastectomy. “It’s a very personal decision.” she conceded.

Anyway I was all ready for a robust debate but instead met a wishy washy “There aren’t the studies to prove it’s worthwhile.” To which Ted, who’s not at all convinced the radiotherapy is the right thing for me to do, gave a swift, Twelve Angry Men- style response which included the phrase “But that also means you can’t prove it’s not worthwhile.” and lots of other supportive commentary I gamely nodded through but now can’t remember.

In the end, she took the case to a panel review of a dozen other radiologists and fed back “The consensus is there’s no reason you shouldn’t have the treatment.” which is both vague and reassuring. Vaguely reassuring.

But radiotherapy is no picnic. Here’s a summary of worst case scenarios:

  • Scenario 1: I have radiotherapy and feel more relaxed about a recurrence because my risk will reduced by about half to two thirds. But radiated skin is damaged inside and out, so is very hard for cosmetic surgeons to work with. Here are ways the implant could go pear shaped: it’s cosmetically not acceptable (skin can seize around the implant pushing it higher than your other fake book, or ‘foob’), your implant can burst through the skin (I read one woman’s story on a forum where she described this happening whilst at Disneyland, this made me laugh a lot), the scars inside and out can get all gnarly which can lead to chronic pain. This most common complication is called ‘capsular contracture’ and can range in severity from mild to unbearable. Nothing will necessarily occur immediately but is likely to sometime over the ‘life of the implant’ = the rest of my life. My surgeon said there’s a 9/10 chance further surgery would be required to upend pear at some point.*
  • Scenario 2: I do nothing, short term all will be cruisy physically but I’ll find this mentally tough. The implant will go in, I’ll move on but will definitely have a doubt that I should have had the extra treatment. If it’s my fate to be in the 15%, sometime over the next five years, a routine check up discovers a lump, or I find it myself in between check ups. There’s a 50% chance this is more DCIS (non invasive) in the remaining breast tissue. There’s a 50% chance it’s invasive. Treatment will be surgery to remove the lump, followed by radiotherapy then chemo if necessary. Back on cancer roller coaster.
  • Scenario 3: Worst worst case – do radiotherapy and cancer comes back. I can’t have radiotherapy again and will have to go straight to big, big guns of chemo (gulp). That is the principle reason JP is opposed to my getting the treatment now. But to my mind it’s currently treatable. Leave it to chance, and who knows?

* another alternative in this event, which I find intriguing, is to become a ‘flattie’ and remove the implant altogether. Some flatties get a massive tattoo done across the area….hmmm.

I shared these with Sue who summed up the last point very succinctly:

There’s a murderer coming towards  you, and you have a hammer, you could use the hammer to shatter the leg of the murderer which will likely incapacitate him. Isn’t that better than worrying that he may be able to crawl towards you so better to save the hammer to try and whack him on the head when his hands are round your throat?

I agree. I think. But it’s very hard. And I am very over all this.

Anyone out there got a crystal ball?

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.