Category: Pessimistic

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…

The Wall

At the start of my course of radiotherapy I made myself a promise. Each day, I would avoid the lift and instead climb the three flights of stairs to get to the facility.

So far I’ve kept that promise. Even if I’m running late, which I do a lot, or if I have to return to the car for something, I use the stairs.

I just can’t articulate why it matters so much that I do this. I suppose it’s a small act of defiance in the face of being told time and again that I can expect to feel tired and sore, especially towards the end of the course of 25 sessions. Surely as long as I can manage the climb, I can manage the etc, etc.

And so far it’s encouraging news. My skin is holding up well. I’m not too wiped out although this morning, each of Amy’s requests for porridge were like an Inception-knock back to consciousness. Still I’m up to do the 90 minute round trip drive alone (my preference) and have been going to the hospital with a kind of head-down resignation. I have been doing alright.

But two days ago, when heading in for treatment 16, something strange happened. I arrived just in time for my appointment, but got stuck at the foot of the stairs. I had this ridiculous conversation with the voice in my head.

‘No. I can’t. I just can’t. And I won’t! I’ve had enough. I want out.’

‘But you have to do it, Sambo. Come on.’

‘No way!’

For several minutes this terrifying dialogue took a hold and left me immobilised.

Once I’d finally hauled my sorry, demotivated arse up there, I found the unhelpful chatter continue whilst having the treatment. Much of the 20-minute appointment  is spent setting me up. A team of two move the gurney, shift me here and there, mark me with pen. Then they check one another’s work, which reminds me of a cabin crew disarming the doors and crosschecking. Actually the team’s disengagement with the job is also reminiscent of a flight crew’s. Normally I go into shutdown mode during this tedious process but on that day, I found that impossible. I felt like a piece of meat on butcher’s block and had to set my jaw to fight tears.

On the way home, normally a neutral affair, I found myself raging at the bullshittedness of everything. This is just bullshit. It sucks! I’m seriously over this and so on.

By the time I got back home I was a tinderbox ready to explode in the face of the next person who dared to crossed me. Fortunately, everyone was in good cheer, which gave me a chance to come down from the stratosphere and calm the fuck down.

Later I was reflecting with Ted that maybe I’m feeling it because I’m not quite at the brow of the hill. I’m past half way, but it’s not over. I emailed my friend Jodie, a marathon runner, to ask at what stage in the race she really felt the pinch. She responded:

There were two times when I really hit it and both were when I got an unbearable stitch (on a 38km training run and in the actual 42km race, both at about the 30km mark). I hated it. In the race I remember telling myself I was above the pain and all that, and that got me through for a bit, but I also remember having the distinct thought: Remember this feeling: it’s not fun. This is not fun and I don’t want to be here.

Both times it was a matter of “just get to the next lamp post and see how you feel”, then “just get to the next corner and see how you feel”. I don’t know what the “see how you feel” part was about – maybe tricking myself into thinking there was a possibility of stopping when I got there. But of course, when you do, the next corner’s not that far away. And so you keep going.

Today’s treatment was hard but better and tomorrow’s will be too, I hope.

I hope.

Under reconstruction

The first stage of the rebuilding effort is nearly complete. Every week for the last seven weeks, my plastic surgeon has injected saline into the tissue expanders she placed under my muscles during the operation. Each expander now contains 275ml of fluid, and I’m the equivalent of a 36C. Normally the second surgery, whereby the expanders are removed and replaced with the real implant, would occur about six weeks later. But because radiotherapy is on the cards, stage two is going to have to wait for the skin to recover. Which could be a long time.

Friends are starting to ask how I feel about them. My response is “I’m pleased I can wear my normal clothes.” This is a real benefit, I know, as is the fact they’re technically excellent. But in truth, at best I feel ambivalent and at worst I am disappointed by all they bring to mind.

The relationship with my real breasts started to die on that ordinary Monday afternoon when I learnt of their treachery. Things took a turn for the worse when I held a fake breast in my hand, and joined a discussion with the surgeon about the Turkish delight consistency while a large part of my consciousness drifted out of my body. Then it suffered a further blow when I Googled “post mastectomy reconstruction” and couldn’t click on the image tab for three days. Of course, the relationship perished entirely when the nerves and flesh got scooped out on another otherwise ordinary Monday.

Any sort of relationship with the reconstructed area was bound to be complex. For a start, and this is obvious by now, I’m not at all comfortable calling them breasts, because they are so vastly different to what breasts are or should be. They are high and hard and get in the way when I reach my armpits in the shower. There is a three finger-wide gap between them and no amount of forcing together can close this gap.

The scars are located under the right (preventatively removed) breast and along the middle of the nipple-less left breast. Day and night, these unnatural creations are contained in a matronly post mastectomy bra, which does up at the front via eight hooks and eyes.

When I lie on my side, they stay where the are. But when I stay on my side too long, I wake in the night with a cramp, the kind where I’m torn between staying still with known discomfort, or shifting and meeting brief but severe pain. I will also occasionally get a twinge in the spot where the cancer was, which is spooky, but if this is anything it’ll be met by freakin’ lasers in the very near future.

Otherwise they are inert. I cannot feel anything when I press them. They don’t react to the cold or the touch. I am happy to show them to curious friends, and don’t mind if they’re pressed or pressed against. Like an elbow, they have no association with the erotic and so are not something to be precious or private about. Still I’m stopping short of posting a picture because I appreciate these are my hang ups and others will feel differently.

Friends say “They look incredible!” and I agree. They are incredible. Not real. And of course, I don’t need Google to show me what they look like.

I hate Turkish delight.

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.

Because of you

I will regard my chest and see a dressmaker’s doll, with stitches I don’t care for and contours I don’t recognise.

I will second guess, odds assess, and throw the book.

I will lie on my back and have saline injected into me via a terrifying syringe. I will grip the nurse’s hand and fill my ears with tears. It’s because it doesn’t hurt, that it hurts.

I will regularly reach into my bag of fucks to give, and find it entirely empty.

I will look for strength in vulnerability and sometimes I’ll find it. More typically, I’ll find more vulnerability.

I will dig deep physically, emotionally, mentally and spiritually.

I will see my flexibility unravel, my biceps unsculpt. My toes can’t be touched and I can’t raise my arms.

I will spiral down from optimist to cynic, I will cheerlead and sneer.

I will feel bored and dismayed by the amount of real estate you occupy in my head.

I will make some people advance and others retreat. Some surprise hug me, others cross the street.

I will write and cry, write and cry.

I will survey mental rubble and face a mammoth rebuild effort.

I can do it all, and see a way out of it ALL. But I am broken forever and completely and surely beyond repair by this fact: every time I see my daughters’ tiny naked bodies, I will wonder.

MRI. WTF?

I don’t know what I was expecting, but it wasn’t a confronting, exposing and frightening experience at the hands of someone called Gavin.

Walking through the dim corridors was not a promising start. Nor was being the youngest person in the waiting room by a good 30 years. (As Bette Davis said, getting old is not for sissies.) The magazines were dog-eared and mostly about fishing and boating. Fortunately I didn’t have to wait long before I heard my name and looked up to see G man.

“Hello Samantha, I’m Gavin.”

“Hi Gavin.” My eyes strayed to his name badge, pinned to a reasonably priced shirt. The ‘n’ was a bit worn. “Don’t you work in accounts?” I wanted to ask, but of course I didn’t. Instead I was the model of complicity, stripping down as instructed and putting my possessions in the shopping basket before donning the surgical gown. I forgot to remove the gold chain I wear every day, so Gavin did the honours with his chilly, chubby fingers.

Next, a little bit of comedy as he attempted to insert the needle through which a dye gets injected half way through the thirty minute procedure. He had the serious shakes. Luckily he got in to the vein first go.

I was ready. In through the door with one of those scary yellow and black signs on the door. Gavin gives the instructions. I’m to lie on my stomach with my hands over my head and put my breasts in the holes provided. “Like I’m sunbathing.”

“Yes.” he said, not warmly. “Ladies tell me the pressure on the sternum is uncomfortable. Unfortunately, there’s not much we can do about that.”

“The most important thing is to stay very, very still. If you don’t..” he peers ominously over his thin-rimmed specs “You may have to come back.” He handed me a rubber bulb. “Now here’s what I call the panic button. Press it only if you really need to. ”

“Okay!” Suddenly he’s cheerful, just as my hand involuntarily puts pressure on the bulb. “Pop these on and I’ll come in half way through to administer the dye injection.”

Through the headphones, I heard a big door close. Fortunately (small mercies) because of my position (feet first, tummy down) I couldn’t see the machine but I was about to become sensorily unnerved in every other way.

“That’s noisy!” was my first thought. But the machine was just warming up. It was like a washing machine full of ball bearings and if I thought the agitating was bad, I needed to wait til the spin cycle.

I was breathing quite heavily, but trying trying trying not to so I didn’t have to come back. A cool breeze up my surgical gown. A mental picture of myself. Tears course down my nose  onto the putty coloured plastic. Panic surging and retreating as the machine roars and quietens.

After five or so minutes of Alex out of A Clockwork Orange‘s torture, I remembered to surrender. I let it go. Let it all go.

Still I was pathetically grateful when I heard Gavin’s encouragement through the speakers “You’re doing really well. I’m going to come and inject the dye now, then you just need to stay still for 12 more minutes.”

A slight pull. An icy sensation up my arm. Old-school internet squeals and pips.

And then it was over.

I was in shock when I came out, and think I still am.

I’ve just glanced at the back of my hand, with the plaster shakily administered by Gavin. I realise this is not the last indignity my hand, and the rest of me, is going to go through in the next month.

And now I’m crying again.