No nerves to get on

The tape holding my wounds together was finally, permanently, taken off last week.

Underneath lay fully healed, quite red, scars. Some small, some long, some lumpy. Some hidden under new flesh. Each scar has its own character. The two circular nipple ones form the border between my old breast skin and new replacement tummy skin. There’s a drop off shelf between the two, like the indent in a saucer where the cup sits. Instead of my new breasts moving outwards to a point, they give the reverse effect. My new boobs look inward.

Scarface body

They are a work in progress of course. The surgeons expect me to have new nipples made by pulling the inside flesh, out. Then a tattoo would be added to create the effect of an areola. The thought of such things makes me shiver right now. But maybe my brain will do the childbirth trick and make me forget that surgery means pain. Not that I’ve forgotten childbirth pain, so I don’t rate the chances.

There’s a straight line scar down from both ‘nipples’ to the under-boob, like the dead body outline of murdered lollipops. These connect to the hidden scars. The second largest ones on my body. They run the length of the underside of both breasts, almost meeting in the middle where they form lumpy ends. When I’m upright, they disappear.

Moving downwards, my newly cut belly button is encircled by hard, red flesh. The belly button is basically made of scar tissue, a product of birth. So scar tissue upon scar tissue means a wiry, unyielding piece of flesh. When they moved my belly button further up, they chopped off the forest of hairy skin that it was nestled in. My ‘garden path’ to more fun areas. But yesterday I spotted a small black hair growing back. It made me smile. My hairy genes overcoming the perceived perfections that surgery imposed on my body.

Then we reach the longest scar. It runs from just above my pubic area, all the way across my body. From hip to hip. For better or worse my tummy is flat but oddly so. Not the flat of the healthy body with a curve here or an indent where a muscle lies. A constricted flat with discomfort as though the organs inside are groping outwards to search for more room.

My body is an unrecognisable configuration marked by an angry map.

This was accomplished in one day.

While I was asleep.

Of course I’m grateful. I made an informed decision to reconstruct my breasts. Time normally allows us to become used to our changing bodies. The very speed of this change brings its own unique challenges. It exists as a duality. A trauma done to my body to save my life.

And as the tape came off new opportunities to heal that trauma became possible. Now I can touch and massage my new, scarred flesh. The surgeons suggest massage as a way to break down the lumpiness you feel in new scars. You can rub away the necrotic (dead) fat cells that were left behind. There’s not that much evidence this works but it does force you to touch your new skin, to reconnect with the painful and the numb.

When I first did the massage, I felt repulsed. All the sensations were being felt through my fingers and my digits didn’t recognise my new breasts as mine. Or as breasts at all. The neural pathways laid down in my brain for ‘breasts’ still expected to find old, huge, floppy boobs. Not these muscle-firm, small, numb things with no nipples. And all my brain was thinking about was that word “necrosis“. Dead. There was no positive spin on this from my sensation-less boobs.

There is one form of sensation still real to my poor befuddled brain. It occasionally thinks I DO have nipples. At random moments I get the feeling that my non-existent nipples and areolae are contracting, fast and hard as if it’s freezing out or someone is flicking them playfully. Except there are no nipples to flick or freeze. This is a common thing. Phantom nipple affects a third of women after surgery.

So I have phantom nipples on breasts that don’t exist.

When the surgeons took the breast tissue, they removed the network of nerves that run through it. I do have a better chance of that sensation returning because my own flesh was used in the reconstruction. But with the return of nerve function could be the arrival of new pain. So it’s a mixed blessing. The breasts as a source of pleasure is most likely gone forever and the way my brain was aware of my body is a hump it’s struggling to get over.

Quality of life surveys find that women who have reconstructions are happier. It’s hard to know how happy you are when you haven’t experienced what might make you unhappy. I predicted I would struggle with going flat and I hedged against that by opting for a reconstruction. But when I read how happy I was supposed to be from reading those surveys, I felt ungrateful and dissatisfied.

Until I found this study. It broadened the definition of ‘happy’ to include; the cosmetic body, the sensed and touched body, the body in action, the sexual body, awareness and sense of self. Standard surveys only explore vaguer notions of satisfaction, quality of life and then focus in on pathological responses such as depression or anxiety. An all or nothing approach to new boobs.

What I found in this study was the acknowledgement that women will have a varied and wide set of responses to the same surgery. Especially so for those who have their own flesh used to reconstruct their bodies. Quotes from the women range from “I feel complete again” to “A breast without a nipple just isn’t a breast I guess..” The individuality of experience as unique to us as our own personalities.

When I read the survey, I let out tension I wasn’t aware I’d been holding. Like stepping into a hot bath after a bad, cold day. It’s an unknowable relief to find I’m not the only one. Not alone in my mixed feelings, my confused neurons, my struggle to accept.

Time may heal all.

For now, I’ll keep touching the nerve that isn’t there.

Move like a mollusc

snail

Almost every day I try to go for a walk. I say walk, but it mostly resembles a cross between a distracted toddler and a snail who’s lost its slime. I shuffle along, overtaken by the most elderly of human beings. Because I look pretty hale and hearty, passersby don’t quite know what to make of me. I often get looks of confused pity mixed with impatient skepticism. As though my youthful shuffling gait and non-rattling deep breathing is an affront to their box of visible disabilities.

On these ‘walks’ the thing I dread most is the kind motorist.

I have to cross at least five roads on my challenge to get to the next cafe in my mobility challenge. As I approach the borders of the pedestrian lands and enter vehicular territory, my control over the pace I can handle shifts. The car slows down and an anonymous hand waves, flicks or sometimes merely a finger gestures me to cross.

My heart sinks with the stranger’s kindness.

The unwritten rule of allowing a pedestrian to cross in front of an approaching car is that said walking human will not inconvenience the motorist further and will speed across the road in as little time as possible. This part of the deal I cannot honour.

I sigh deeply, looking like an ungrateful wretch before we’ve even begun. And I’m far too British to wave the car away. I’m too afraid of us getting stuck in some kind of waving loop, each person trapped in competitiveness politeness. So I obey the flicking hand and move into the road.

Except I don’t speed up. I can’t. I break my part of the bargain. Instead I keep my eyes firmly rooted on the road ahead, each slow motion step make me hyper-aware of the rising impatience of the driver. As though they were standing right behind me, puffing irritated air into my ear.

Meanwhile other pedestrians have taken advantage of the situation and sprinted past me, highlighting the sluggish pace of my own body even more. I act as a kind of slow motion lollipop lady.

I know if I speed up, if I push myself, there will be a price to pay. Much as I’d like to give the gift of ten extra seconds to those charitable drivers, I can’t afford the cost to myself. If I push myself it has to be on my own terms and for my own benefit. Because nothing else is worth the ramifications. Too long or fast a walk could mean two days motionless and gloomy on the sofa. That I can not bear and it’s those kinds of days that challenge my mental health most deeply.

My life is all about balancing energy. Conserving it, spending it, generating it, paying for it.

Tiredness is normal after surgery. The anaesthetic has a profound effect on your body function and a hospital stay can disrupt circadian rhythms. Being less mobile can affect your muscle mass. Opiate-based pain medication can make you drowsy and slow your breathing. If you’re not breathing so well, then oxygen isn’t getting to your cells and they’re not doing their job fantastically well.

Your wounds are also a problem. Not only has your body got extra work to do to heal, meaning even while you’re sitting very still you’re actually working a full time job internally. But your wounds are continually evaporating away precious water, like steaming cracks in the Earth’s crust. During my pre-assessment appointment, the anaesthetist educated me that skin holds water inside our bodies. Seems kind of obvious but when our skin is cut, water literally evaporates out of the tissue that’s exposed. This is why the nurses kept filling my water jug over and over and over. Dehydration shrivels your brain and your cells need water for just about everything.

So there’s lots of reasons to be tired, even fatigued. I oscillate between the two but tiredness is the set on which my life is performed. Fatigue means the show cannot go on. Then only sleep or withdrawal will renew me. It’s tricky to know when I’m tired but can regroup and when I’m fatigued and must stop. Sometimes there’s a long delay before I actually feel the effects of whatever I’ve been doing. I have to be a kind of tarot reader for energy levels.

If I’m really unlucky I could become chronically fatigued, meaning the condition will be ongoing and long lasting. Luckily I don’t have the predictors for that possibility. I wasn’t depressed or had anxiety before surgery. My levels of general health and fitness, aside from the deadly disease, have set me in good stead.

For now I work with what I have on any given day and try to strive for more. Or accept less.

One slime-less snail move at a time.

What could be

Remember that last mammogram, the one that was going to take eight weeks to get the results back from? Remember how I complained and chased and phoned and whined until they told me it was clear. Turns out it wasn’t.

Turns out the second radiologist to check it found something suspicious. There are teeny tiny spots of calcium in the bad boob. There are only three that I could see. They showed me on the scan. Three tiny specks that you need to zoom in very close to see. I can understand how the first radiologist missed it.

Three microscopic white specks that are suspicious. Could be scar tissue. Could be from radiotherapy. Could be nothing.

Could be the sign of precancerous activity.

Could be everything.

They wanted to do a second mammogram. Sometimes if the scan is really clear, they can tell from the shape and spread of the calcifications what they actually are. So they hooked me up to the machine again in that cold, cold room, but couldn’t be certain.

They did an ultrasound to check for lumps and bumps. Nothing. Good.

But they weren’t happy still so they hooked me back up to the mammogram machine. This time on my side lying down with a whole nurse purely to be kind, to keep me distracted. They anaethistised the boob, a sharp scratch.

Then the mammogram tells them exactly how deep to dig with their giant needle. They take five biopsies and are very happy to capture those tiny calcified cells. They’re very pleased, I can hear it in their voices. I’m just relieved I don’t have to have the giant needle punched in my body again.

The nurse presses on the wound for ten minutes to prevent bruising and stop the bleeding. I’m grateful for her and for the anaesthetic that is still working while she pushes down on me.

Now I’m very tired. The wound is healing but my body is so very tired. Two weeks until the results come back.

Two weeks.

I know this terrain. Scanxiety. I know how to cope. Oh but I’m tired of just coping. I was beginning to take time for granted a little. I didn’t plan ahead far. A year I thought, maybe three? I could start this sewing business. I could figure out how to get my family a secure home to live in. I could..

But we’re in different ‘could’ territory now. It could be nothing. It could be everything.

Two weeks.

 

Hope and despair

I’ve been struggling of late. I’ve had whole days of tears, hours of anger and precious few minutes of laughter. I haven’t been taking care of myself. I missed many weeks of exercise class. I didn’t do the pilates I learned. I haven’t been eating as well or drinking as much water.

I forgot to be mindful, so I didn’t spot the creep of despair. It took hold of me inch by inch, like the air bubbles that gathered on my neglected glasses of water.

Each failure of self-care led to another, and another.

I blame Brexit.

I stayed up all night watching as the UK voted to leave the European Union six weeks ago. I was transfixed by coverage as what felt akin to a natural disaster played out on the screen. Almost immediately the hate crimes began. Still sleep deprived and dazed, an abstract but powerful sense of threat invaded. Where my Iranian-ness had previously been intriguing or exoticised by other Brits, (“Oh you have lovely skin, bet you tan well.”) suddenly I started to feel like little targets were painted all over my face.

I went into full fight or flight mode.

The great thing about fight or flight is that it’s really rather handy when you need to run or punch. For longer, more sustained levels of threat it’s not so great. The cortisol and adrenalin released by your brain to prepare your body are really bad for you over time. This was something I experienced just after my cancer diagnosis.

Then ding, ping or whatever realisation sound works for you, happened. I had felt like this after diagnosis. Cancer was Brexit. Brexit was cancer.

Brexit, as with cancer, represented an existential threat that felt quite abstract at the point of diagnosis (or referendum night). I never felt sick from cancer itself. It would eventually have made me sick, mostly from growing into organs and obstructing their function rather than inherently being a problem itself.

As with Brexit, it was the effect of emboldening racist ideas and behaviour that was the primary source of pain for me. The visceral threat of violence done to me, my family, my friends or any other human.

When I received my cancer diagnosis, after the shock settled, fight or flight pushed itself forward as an option. I welcomed it at first. People told me that I could ‘beat it’, newspaper articles shouted when a celebrity died after a ‘battle with cancer.’ Many of the voices around me were saying fight. Please fight. And my hormonal messengers were reflecting that back. The adrenalin kicked in, the cortisol was flowing. Exactly the same way I felt inside and out the days after Brexit.

Pretty quickly I realised that fight or flight was not going to be my friend for the long, relentless treatments I was facing for cancer. Chemotherapy is a marathon requiring pacing, stamina and humility. And lots and lots of help. In fact it requires the very opposite of fight or flight. So I switched to ‘positive thinking’. There was lots of evidence to show this kind of approach worked well for reducing stress and improving outcomes.

But it switched me off from the world. I had to stop listening to the news, to stop engaging with people’s problems. Shamefully it stopped me connecting with people with secondary breast cancer because their reality didn’t fit with my visualisations for survival. I wasn’t in fight mode but I was deep on the flip side. I was immersed in flight.

The process with Brexit went the same way. I eventually switched off the news and tuned into French radio stations where I could only understand one in five words. ‘Brexit’ sounds kinder with a French accent. I unfollowed all the political facebook groups I’d frantically joined in the days after the vote. I started sewing furiously, determined to create something beautiful or useful in this world. I filled in my Irish passport application. Deep, deep in the comforts of flight.

Then I splashed myself with hot oil. Yanking my arm away reflexively, I nearly vomited from the pain when the tiny movement did a grand impersonation of a dislocation of my shoulder. It was the side of my body operated on, where parts had been removed. This was a warning I’d been ignoring for weeks. The lack of exercise, the neglected pilates, the stress and tension of muscles flooded with adrenalin. It all added up to pain. Here my life with cancer and Brexit collided and smashed in the blinding agony of my injured body.

The pain must have jolted something loose in my brain and I made the connection between cancer and Brexit. I would need urgently to return to my cancer coping strategies. It’d proven itself. It had done the job. Maybe it could help with life after cancer too.

What was it? In one word: acceptance. It’s a small set of letters for a very big thing. It’s a hard thing. Like radical generosity or self-care, it’s tough and difficult. It doesn’t come easy and it doesn’t come instinctively. It’s not ‘acquiescence’ though. It’s not giving up. In fact when I let go of positivity, of hope, of flight, I also let go of despair. Because those two things are flips of the same coin and it’s exhausting to lurch from one to the other. I needed to get off that track, board a different train.

When I was alone, just me, in reverse quarantine from the world of bugs and germs during chemo. Truly and deeply isolated, I faced my death. I stared it in the face and then looked back at myself. I stripped back the thin skin of positivity and went deep into the innards within, into the mess of terror and panic. I managed to untangle some of the guts of fear.

An unexpected side effect of that letting go was it freed me up to do the things that would, ironically, help me lower my risk of the cancer returning. With the clarity and energy that comes from not being terrified, I found room for solutions. I lost weight, ate healthier food, lowered stress, did exercise.

Shifting from fight or flight took me out of binaries and allowed me to see what was really there. The complexities, what exists, where the problems lie and what the solutions could be.

I don’t think I’ve mastered this fully. The warrior in me has been around for a long time and history is its ally. But I need to go deeper into the real, to see all that is there not just the information selected by hormones. I need to apply what I learned when I thought I might die.

So be it Brexit or cancer, the world is as it is. I strive to see it. All of it. Then maybe I can find the room to change it.

Chemo kit innit

A friend just asked me what was most useful during chemo because she wanted to send something helpful to a recently diagnosed friend. It’s a question that has come up too many times, sadly. Not trusting my brain to recall anything that long ago, I googled ‘Chemo Kit’. The results were a mixed bunch, perhaps compiled by office-bound medical staff or well intentioned religious folk. So I thought I’d get the coffee on and concentrate really hard and see what I could remember.

What works for one may not work for all, but some things might hit the slightly nauseous bullseye. The amount of information you get at the beginning is overwhelming but I know it was annoying to find out things that could have been helpful AFTER it was all over.

People may do chemo at the start or at the end, depending on their treatment plan. I have reliably forgotten some things so I’m making this a community operation. Please feel very free to add suggestions, especially my lovely ‘breasties’ out there who have had their own experiences and strategies.

Chemo Kit:

Warm bedsocks
Magicool (for chemo flushes)
Sucky sweets for nausea (sugar free)
Sleep hats
Pretty scarves for headwear (if the person is into doing that)
Sunglasses
Wide brimmed sunhat that’s not too scratchy on a baldy head
Sensitive skin suncream
Earplugs
Hat that covers ears and bottom of the head
Easy going books (not meaningless but not too emotional)
Cancer cookbook (sometimes the hospital will have their own but you have to hunt for them)
Unscented Hand sanitiser in lots of different forms (especially one that is automatic for home use)
Boxsets of comedy shows or Netflix subscription
Comfortable and safe/secure slippers
Warm and cosy wrap/cardigan
Little lap blanket
Super soft toothbrush
Corsodyl toothpaste/mouthwash (only use when gums are bleeding as prolonged use will turn your teeth grey!)
Pitrok (natural deodorant because you can’t use the chemical stuff)
Natural, scent free bar of soap
Lipsourcil Expert mascara (if you’re feeling flush, this MIGHT help with preventing eyebrow/lash loss)
Ice lollies (for nausea)
Pocket tissues (the hairs in your nose will fall out too and that means there’s nothing standing in the way of those drips)
Pillbox for medication
Soft neck scarf (to counter drafts)
Comfortable headphones
Tablet/iPad (if you have a ton of cash)

‘Surgery kit’, ‘Hospital stay kit’ and ‘Radiotherapy kit’ in the works..

Dear Doctor..

Dear Mr Consultant,

I came to see you the other day for my final appointment at the end of treatment for breast cancer. I waited an hour in a room filled with elderly patients who by necessity were filled with the War Spirit and happily geeing each other along. I looked around at them and realised that some were probably there for ‘Results’. Sitting there, laughing with strangers in this limbo-like space. Waiting for words that would change everything. The very worst thing you can do to someone with their emotional breath held, is make them wait. Thankfully that was not me, that day.

When you finally came to get me, you barely glanced at my face. When you said my name, it was the last time I would hear it from your lips. You rushed ahead down a long, unfamiliar corridor and I started to feel like Alice down the rabbit hole. Once, you half turned your head to mumble an apology for the wait but I only caught part of it. I felt a pressure at the back of my head to start talking, to reassure you in the gaps, to fill the social holes that launched our interaction. I didn’t feel up to it. We had had a previous encounter once before when I didn’t feel heard, felt dismissed. So I’m already coming into this interaction with baggage. I don’t want to be nice to you. I’ve raised my defences and nothing so far is causing me to drop them.

I remain silent as we enter your office. Your space, your territory. You go straight to the computer and pull up my file. You scan read my life-saving treatments. You are thorough though and open up the report from an ECG I had 8 weeks ago that no-one has told me the results of yet. 60-65% heart function, that’s good you say. I’m relieved and happy you told me the details. I like the details. I like to know as much as I can about my body and how it’s doing. It helps me to feel at least a smidgen of control in an otherwise free-falling situation.

I got encouraged to be curious and asked what that meant, those percentages. You seemed flustered that I wanted to know and half laughed at my misunderstandings of biology. Maybe you were sharing a bonding moment with me. Perhaps you thought a bit of laughter would break the tension. Humour can do both those things. But laughter can also feel mocking and belittling when you feel an inequity in the relationship. Your response made me also question why you had told me the numbers in the first place. Was it to help me understand, to reassure me I was OK? Or was it a way to distance me from you.

Because this was how I was feeling. Distant. I wanted to hug you, to thank you. How could I ever show enough gratitude for the immense act of saving my life. I wanted to bring you cake and a card with all the words I couldn’t squeeze into my allotted time. But action by action, you pushed me away. One micro-detachment at a time.

You said you wanted to listen to my heart and lungs and asked me to take off my ‘top things’. You pulled the curtain and went to get a female nurse. She was supposed to be there to reassure me, to make me feel safe, to prevent any ‘misunderstandings’. I didn’t see her face or hear her voice until she asked me if I needed help getting my bra on after it was all finished. You didn’t ask permission to touch me or take care in that touch. You hurt me where I had been cut open. Your hands were cold, rough and fast. You didn’t ask if you could examine my ‘good’ boob. You just did it. I didn’t even know you were going to examine my scars, my hurt places. The places on my body that had just started to become private again.

When you finished, you washed your hands and I felt violated and a bit ashamed.

I can try to understand why you act this way. You see hundreds of patients, some of them are going to die. All of them are going to suffer. You must need to build up defences to protect your own human feelings. Maybe that’s how it starts. Then little by little, it turns into something meaner, nastier. It becomes self-fulfilling. I must have seemed by an ungrateful, cold person to you. I didn’t laugh at your jokes. I didn’t even say thank you. All your hard work and nothing back. If you’re already detached from me, this must send you a little further towards misanthropy.

It is a tricky thing to protect yourself emotionally while keeping engaged with people. We all struggle with it. The best doctors and nurses I’ve had seem to find that balance. Even if I’ve had to wait hours, they walk me slowly to their rooms. They ask me how I am and listen to the answers. They say my name many times. They look in my eyes and away from the computer screen. They tell me everything they want to do, every examination they want to make before they do it. They ask permission for every touch and apologise for any hurt they cause. They encourage my questions and answer them patiently and thoroughly. They even get energised by it and take me further into their own world of understanding.

They make me feel like the only patient in the world in a world of chaos and pain.

So dear consultant, I wish you that hug and I am grateful for your knowledge and expertise. You saved my body. Please find the strength and will to soothe my soul too.

Yours, in respect and peace.

The patient.

 

Trouble in paradise

I’m pleased to say that I am in no physical pain my friends. This last surgery has lived up to its reputation as being easy and quicker to recover from. My troubles for this week have not been caused by someone slicing me open with a very sharp knife. That was a walk in the park compared to some serious emotional distress I’ve been exposed to in the past few days. I was bullied online in a breast cancer support group. Sharp intake of breath. A place where I had opened myself up to strangers in a way I haven’t ever done, turned into a very unsafe space very quickly. I’m not going to go into details because it’s very long and tedious, she said this, she said that. The context was organising for a Christmas gathering for the region which I had helped out with. A disgruntled group wanted a different kind of event and were very vocal until the event changed to their liking. When others wanted to be included they rounded on them aggressively and then seemingly gloated of their victory with in jokes and ridiculing statements. Eventually the admins stepped in and sorted it all out but it got very ugly for 24 hours. Things move so fast on the internet.

I decided to leave the group. Recovering from surgery and being terrified to check my phone were becoming mutually exclusive. I chose my health. But it has not left my mind for long which is why my friends, I find myself writing this out because my coping strategies aren’t cutting it so far. I’ve moved through lots of different reactions and emotions: fear, anger, guilt, rage, sadness, despair. I’ve tried thinking my way through it, could it have gone down differently? Could I have intervened earlier and with more skill? Was I the bad guy? So far none of this has stuck. I haven’t moved forward much at all.

Today I began to think well perhaps this is just the product of standing up to bullies. An unpleasant side effect for defending yourself or others. Something to be endured. I felt better for a little while, confident in my self righteousness. But it didn’t fit, like socks that slip down into your shoes and make you feel slightly uncomfortable all day. It has forced me to come at this in a very different way. What does Heidi the social scientist think of all this? I think the bullies felt like the oppressed group. At first they probably were. They weren’t getting what they wanted and they were fighting for it. They perceived themselves as powerless. They quickly formed an in-group of similarly perceived powerless people. Once there was an in-group, favouritism was inevitable. People in an in-group will see more similarities between the members of their in-group than the people they perceive to be outside the group. After that the dynamics were fixed and it would have been almost impossible to steer it differently. We became the out-group, other. Their self-identity as a group was also imbued with justice and righteousness so any criticism or attempt to include more people was treated as a threat.

However once they had achieved their goal. See I’m even doing it as a write. Seeing them as a out-group, a ‘they’. In actual fact ‘they’ were a group of individual women coming to this conflict with an entire narrative of their own, loosely thrown together by a fast moving and random sense of togetherness. I also suffered from the oh-so tempting action of forming an in-group when threatened. Anyway, at some point the event was changed and at this moment, power shifted to their advantage. Their self-identity changed without them consciously realising or acknowledging it. Their statements and comments became more overtly and clearly bullying.

When I drew attention to this behaviour, the commenters were defensive of the bullies. They made excuses for them. They explained that it was my interpretation of the comments that was the problem, not their intention. The in-group was still in full effect and becoming entrenched. I find this very interesting how a self-identity formed so quickly and got made rigid by perceived challenges to the group. But it made me feel depressed that this could happen in such a normally supportive space. But then humans are humans, even if they have a deadly disease. The self-identity of us all as breast cancer sufferers got splintered. The larger in-group shattered.

I do think this all could have played out differently though. If we had remembered we are all special little butterflies and not formed an identity as a group, then it would have been much easier to resolve potential conflict. Conflict is normal. Conflict can be sorted through if people show empathy, compassion then listen and compromise. Sadly, forming groups is normal too. It is one of humanity’s strengths but can sometimes be one of our deepest failings. The original conflict can become fixed into a story of justification for bad behaviour, its ‘heroes’ defended and canonised. I’m not saying folk songs will be written of the Battle for the Breast Cancer Xmas Party but remembering we’re all human beings with differing needs and wants is a better way than ‘us’ against ‘them’. Because there’s one big thing that makes us all one big in-group. We’re all going to die, some sooner than others. But our time is limited and I for one don’t want to waste another moment of it fighting some fake enemy for imaginary power. There it is. There’s that feeling I’ve been striving for all week. Peace.

The second cut is the deepest..

Monday is the day. By 11:30am I shall be hungry, dehydrated and dressed in a thin unattractive hospital gown waiting to go under the knife once more. My re-excision surgery is imminent. Another centimetre of my flesh is going to be removed around the original site of the tumour. Apparently this kind of surgery is quite common and about 30-50% of people with my kind of breast cancer go through this. If that number seems very imprecise then that’s because there isn’t much data around and the variants are pretty big. I did find one small study that 23.8% of people who specifically had the kind of surgery I had, ended up having a re-excision. It’s also a pretty big must for me. Not to blind you with stats but it doubles my risk of the cancer returning if I don’t have clear margins.

It has been a rougher time emotionally lately and I’ve been contemplating why. I think chemo was so hard and gruelling that I hadn’t spent much time preparing for the impact of surgery. I was all la-la-la, nothing will be as bad as chemo. I can do this in my sleep. But surgery has brought its own challenges and they’re very different from chemo so my coping strategies didn’t help me. Walking on the beach and hanging out at the allotment were a no-go. I was too devastatingly tired and I couldn’t lift a shovel, no mind dig with one. Pain also makes meditating and mindfulness impossible. Being in the moment when they are overwhelmingly filled with agony is not somewhere you want to dwell. Body scans remind you that everything hurts. Pain also disconnects you from everyone around you. I was too scared to go out in case I got bumped. When your body is constantly stimulated internally (by pain), the sun seems too bright, the world too noisy. I had this feeling at the height of nausea but it passed quicker. Plus there’s no bear hugs. So the isolation gets intensely physical and emotional.

The medical aftercare was also poor and there didn’t seem a clear structure or point of contact for problems. During chemo I had the hospital, the cancer ward, my oncologist. This time it felt like all the carers couldn’t wait to hand me off to some other schmuck. Where the chemo care was careful and cautious, the surgical was quick, sharp and fast. Perhaps much like the treatments themselves. I’m sure there’s a PhD in there somewhere. The single biggest outside form of support I’ve had was from kind and generous internet strangers on the Facebook page for the Younger Breast Cancer Network (YBCN). User-led, all my fears and questions found an audience who could reassure me with their own experiences and make me feel less alone. I take solace in that.

I did have another Buffy-style fleeting moment. This time I was going through my nighttime routine of gingerly scooting my front-fastening bra off my shoulder. It’s a tricky business as it can be unpredictable at which angle my scars will start to protest. For instance, I was in a changing room today trying on a top that I had managed to squeeze into feet first but I realised getting it off was another matter. I stood there staring in the mirror, perplexed, shifting one shoulder one way and wriggling one arm another. I even considered leaving it on and simply going to the till, bending over the desk and asking them to scan it from there. Luckily I had the awesome Kat to come to the rescue and pull my arms out. Anyway, back to bedtime. As the strap dropped down and I sat there with boobs flopping, I felt this wave of irritation and wish for these sacks of flesh to just disappear. Poof, be gone. I wasn’t sad, I wasn’t scared. I didn’t feel emotionally attached to them. What I think this means is that I’m transitioning to a state where I see my boobs as the enemy. I’ve heard other women talk this way and I never got it. Until now. At the beginning of all this, my boobs were mine. They were fun, bouncy, part of my identity. They did cool things, they played a role in sex, in feeding my baby. They gave me lovely, beautiful cleavage that caught my food (I actually found a chip in there the other day, a whole chip).

But ever so gradually, those things have been replaced. My boobs have been on show to the public. They’ve been handled many times by strangers, stared at in a non-appreciative way, cut into. The surgery clinched it and pushed this forward more. My boobs are starting to take on new meanings that are eclipsing what they were before. They are bits of flesh, parts of my body with no purpose other than cosmetic. And they are trying to kill me. Maybe this is psychological prep work for any future mastectomy. Or maybe it’s a dangerous trick of my mind, disconnecting me from a part of my body that I need to reintegrate into my sense of self. I’m on the fence. Maybe both those things are true and I will exist in this state until the cancer decides for me. As usual, I live with uncertainty.

So now I am learning my lessons. I am preparing for what’s coming on Monday. Kat has cooked everything in sight and the freezer is full of frozen delights. My Brighton Buddy is coming over tomorrow and I will hand her the hoover as she walks in the door. Now I just have to pack my bag in case something goes awry and I end up in hospital overnight. There are many things I cannot control about all this. But some things I can. Here I go then, preparing as best I can.

 

 

Bursting the Bubble

stay positiveBreast cancer is in the news a lot lately. A famous British footballer’s wife just died from it last night. Her name was Rebecca Ellison. By strange and horrible coincidence, tomorrow night sees the premiere of a TV adaptation of the book ‘The C-Word”, the account of blogger Lisa Lynch‘s ultimately fatal experience of breast cancer. The forums were already ablaze yesterday with the impending airing of this show. Such a high profile death in the headlines and the forums are exploding in all sorts of directions.

In the discussions about the TV show, we were split fairly evenly into three camps.

The first was enthusiastic, excited to see breast cancer in the media. They were curious at how it would be represented, whether their own experiences would ring true with the moving images. The most powerful post I read was from a woman who was aware that she hadn’t really faced her diagnosis and was hoping the show would act as a catalyst for her to explore, process and talk over some of her feelings and thoughts. This is what art does best. It reflects ourselves back at us and helps us to see things we are too afraid or distracted to look at.

The second camp were interested but nervous. They weren’t sure they were emotionally stable enough to watch it. The general consensus for them was to record it and watch it later, or not at all.

The third, into which I fell, didn’t want to watch it all. Some because they knew for sure they couldn’t take on the emotions it would elicit. For a fair few of us though it was pure self preservation. I have bought wholly into the positive thinking approach which I’ve mentioned in other posts. I have firmly told myself that I am not going to die. I am going to be sick for a while and then I am going to be better. Like any other illness. The statistics back me up and positive thinking is proven to aid in my physical health. The C-Word might have been doable for me if the protagonist didn’t die. Her story ends the way I don’t want mine to end. My story has been carefully constructed. To challenge it is to break down some of the precious little action I can take to save my own life. Even researching this blog post was forcing myself to take a peek into the abyss that always lies in my peripheral vision. I had trouble even typing the search terms into google. Each keystroke felt like a betrayal.

What I’m also worried about is that people will start asking me about the TV show. Did I watch it, what did I think? I talked to hubby about this and he said it was similar to his feeling that as a Jewish person, everyone expected him to have seen Schindler’s List and have an opinion. He would like to reply, “That film is for you all, not for me.” That’s kind of how I feel about The C-Word. Not that everyone who doesn’t watch it is a Cancer Nazi. But maybe it’s an opportunity for those who don’t have breast cancer to get a glimpse into the world of someone who does. Another thing that art does brilliantly, lets us walk in another’s shoes.

Like the many and varied creatures we are as humans, the show and the headlines will effect people in different ways. Just as there are 200 different diseases classed as cancer and fourteen different breast cancers. On top of that there are a variety of gradings, locations and sizes. All adding up to a plethora of experiences as varied as the human reactions to them. So it’s not surprising that there is no one way of handling breast cancer in the media. If you want to watch, you’re right. If you don’t want to watch, you’re right. We must all listen to our gut and make that decision for ourselves. For me though, it’s time to switch off their stories and tune into my own.

 

 

Don’t Rage Against the Machine

sailboatI was surfing a breast cancer forum today and was a bit overwhelmed by the amount of people crying out in anger and frustration and not being able to express that to loved ones. It made me feel sad for them and a little confused. I guess I am pretty lucky  to have such awesome Bosomers like yourselves around to listen to my every rant but I also realised I haven’t felt those particular emotions that often. I remember clearly the day I got the diagnosis and coincidentally we had booked months before to go and visit our lovely friend Karen in Scotland. The flight left a few hours after I left the breast cancer clinic and the whole journey to the airport is a bit of a blur. Once we were on the plane though, the memories are sharper. There were two young women drinking champagne and giggling a few rows in front of me and I was shouting at them in my head “Don’t you know that stuff could KILL you?” On the other row of seats in front was an older man who dared to stretch his arms in a glib, bored fashion. Didn’t he know that serious and life-threatening things were afoot? How could he be so cavalier with his body movements? A week later on the flight home, Sleazyjet lined us all up in a very narrow corridor for 20 minutes before letting us on the plane. As the heat increased and my claustrophobia ratcheted up, I was a hair’s breath away from screaming at everyone, “GET ME OUT OF THIS CORRIDOR! I HAVE BREAST CANCER GODDAMMIT!”

So I’ve definitely felt that rage and sense of injustice, but it passed fairly quickly and I haven’t really seen a strong resurgence. Reflecting on why this is so and all I can think is that I accepted the diagnosis fairly early on. However, this is not a wisdom I gained from this particular life drama but from many others that have come before it. It was a lesson that was hard won. The psychological definition of acceptance “is a person’s assent to the reality of a situation, recognising a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest.” I would differentiate acceptance from acquiescence which implies a more passive state or sense of giving up. I’m not talking about throwing in the towel. I’m talking about letting things that you can’t change be what they are. I don’t have all the science to back this up as there is this grey area between psychological theory and clinical studies so forgive my very subjective take on this.

There are studies to show that the opposite of this state of acceptance which I will say completely unscientifically here is the fight or flight response. This evolved as a way to get us to run very quickly away from creatures with sharp, pointy teeth that wanted to eat us. It works really well for short term problems but is not so great in the long run and can lead to heart disease, weight gain, depression etc. A cancer diagnosis can produce this response but it’s not good to hang onto it. Cancer is a long term threat to life so you need a more sustainable coping strategy. Legging it or punching cancer in the face ain’t gonna cut it. On a side note, just for reference, this is why telling someone they can ‘fight’ cancer isn’t the best statement to hear. Being in cortisol-fuelled emergency mode will do more harm than good. Also the whole reason I got cancer is because I can’t ‘fight’ it. My immune system is being very silly and thinks cancer is its mate. Cancer is the ultimate frenemy.

Connected to this is getting a good nights sleep. Not an easy feat I accept. There is evidence to show that people with depression don’t experience vital parts of the sleep cycle and this interferes with their ability to process information from the day’s events and incorporate it into their sense of self. I feel that it’s vital to my mental health that I make cancer part of my identity. I will live with it for the rest of my life, whatever that looks like. The tricky bit is to accept cancer without letting it subsume the whole. Much as the physical manifestation of the disease is attempting an aggressive takeover of my body, it is trying to do the same to my mind. Ignoring it or yelling at it (or random strangers on planes) won’t make it go away. Just as I had to accept my lumpy boob, so do I let cancer become a part of my self. A small, but profound part.