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.

Nowhere to run

SkyI read the news yesterday and I wanted to run.

Run as far and as long as it took to protect myself and my family.

When Trump promoted the hate of the far right group Britain First, and my own Prime Minister responded weakly, she made me feel scared. Unsafe. She made me feel unprotected from those who would do me harm and who didn’t recognise my right to exist.

I am a child of British colonialism. My mother is Irish, an economic migrant. My biological father Iranian, a foreign Naval officer trained by the British military for their own purposes.

Parents

If Britain First had their racially pure way, I would not even have been possible. Never mind my marriage to an Israeli Jew and my child of the world, my wonderful daughter.

So yesterday I panicked. I spent a long evening curled on the sofa, a deer in headlights shedding fast tears while my husband who has severe depression, tried to cheer ME up. It worked enough to bring me precious sleep until 4am when my mind awoke just enough to let the fear creep in again. So I decided to write it out.

I’ve always felt different in my own nation. The place I was supposed to belong was constantly questioned. “But WHERE are you from?” was a necessary question to be settled to people’s satisfaction upon meeting me. My Irish-ness wasn’t the thing that gave me away. It was always my Iranian-ness that called my status into doubt. My skin colour. Not my accent, not my cultural difference. Just the darkness of my skin compared to others. Occasionally out of frustration I would make people guess.

“French..?”

“Spanish..?”

“Greek..?”

They would never guess right. The only people that ever did were Iranian themselves. Even my features influenced by my Irish genes wasn’t enough to trick their highly attuned Iran-dar.

That my fellow Brits could judge me and find me lacking because of something so basic to my being is tough to take. But it became so ordinary, so normal that I couldn’t even separate it out from who I was. I’d laugh along with my doubters and make jokes about being a double terrorist whammy. “AND I’m from Brixton!” I’d add just for the extra nervous giggle. A joke at my own expense, especially because I actually grew up in the neighbouring Camberwell. But to anyone who lived outside southeast London, it was all one big mystical ghetto.

But the jokes and the questions did their damage and shook my sense of rootedness, made me feel like an exotic plant in the wrong kind of soil. Eventually that feeling drove me to seek out a wider sense of belonging. It taught me the superficiality of the bonds of the national tribe. It gave me the clarity of being on the outside looking in and gifted me an awareness of the dangers of hitching your wagon to one culture or identity. My empathy for others blossomed.

When I got cancer I could have raged at the injustice of it. But I didn’t, not for long anyway. I think that’s partly because I never felt entitled to justice. Racism had prepared me for that. It laid the first bricks of an unfeeling universe as a porous foundation to build my identity on. Cancer found an open doorway to walk into my life. It didn’t care if I was a kind person or a mean person. It didn’t care what I had suffered or if I’d inflicted suffering. Cancer, like racism, didn’t care if I was loved. Or who I am.

Ultimately the universe doesn’t give a shit about any of us and we will all suffer, rage, love and die. Our pain and our existence will go mostly unknown and unheard. It’s an unimaginably hurtful thing to face when you’re the main character in your own story.

I have tried to transform both things into strengths, into ways to empathise with others. But it’s never guaranteed that these kinds of life experiences always end in resilience and empathy. I was lucky.

When I was facing death from cancer, when I consciously stare death in the face now. In a dark room at 4am, when you’re alone and a threat feels existential. When there’s no comfort. The touch of one human to another is all there is. One human voice, singing or speaking when you have little strength to summon your own sounds to fill the void. When I let the unfeeling, uncaring universe into my awareness, I hunt for love. I seek it out and it brings comfort and focus. Because actually that’s the only thing that holds any meaning. When you’re stripped of all your skills, when you’re laid bare of all the parts of yourself. When you’re a body, just flesh in this world without respect for your struggles, in a universe that doesn’t care about your pain.

I think the people who would do me harm suffer from that same existential terror. Everyone on this planet is walking around holding that awareness of a unjust universe in their guts. For some, it’s a tickling darkness at the edge of their vision. For others, a vortex of chaos inside their very being.

We all feel it.

Sometimes it produces hatred and anger and rage. Sometimes the urge to hit out at anyone who comes close, anyone in the immediate vicinity. Or shut down, protect, keep insulated. Some have been swallowed whole by despondency and despair. I feel those things too and last night I wanted to run as far away as possible. To drag up those ill-fitting roots and plant them anew in more hospitable soil.

So I used that mental trick to cope with racism, with cancer, with death. I remember back to the stripping down, the physicality of flesh and the absence of identity. The trick to finding meaning and purpose in an uncaring world is to deeply feel, to exquisitely care.

Until the darkness does finally come for me. When division, hate, fear and belonging all fall away.

For good.

Until then I must hang tight to love, care both for self and others. Neither racism, nor cancer will strip me of that.

Shedding surgeons

I went to see my plastic surgeon for the first  time since a drug-blurred conversation the day after surgery. It wasn’t just the surgeon today though. It was a veritable smörgåsbord of medical types. The surgeon, the nurse, plus two insanely young looking medical students. I think it means I’m officially old when I say things like that.

So they all wanted to see my boobs. They are public property after all. Lots of humans have had a part to play in their existence. People I don’t even know and will never meet have had hands on them.

I departed for the room with the bed in and slowly peeled off each layer of compression clothing. I had taken the micropore tape off (fancy masking tape) earlier but I hadn’t got all the leftover glue so my compression knickers were a bit sticky in all the wrong places.

As usual I got the open mouthed gasp from the nurse as she supervised my undressing. For good reasons. They’re always super impressed with the surgeon’s skill and also my healing wounds. To them my belly button is especially lovely looking. To me it’s a Franken-button. I wasn’t exactly sure why they cut out my belly button and sewed it back on. Apparently they pulled out the whole stalk. Yes, belly buttons are on stalks, like really gross sunflowers.

Then they took my tummy flap and stretched the skin down and cut a new hole for my belly button. So that meant my tummy was big enough that they could pull it down far enough to remove the old belly button hole. Sorry, I’m not sure why I’m obsessing over this. There was so many other big things being done to my body that I hadn’t paid proper attention to the fate of my belly button. Felt right to give it some consideration now.

I was lying on the bed and four people were peering at my wounds and scars and new boobs. This didn’t phase the plastic surgeon though. He asked permission for every touch and focused on me and my questions. Not once did I feel like a mannequin displaying his work.

One part of my left boob is still not entirely healed and the skin is red. But it’s not hot, doesn’t hurt, isn’t tight. So probably not an infection. Both boobs have parts that are harder and he theorised that some fat had been left behind on the skin and had died. It’s called fat necrosis and with a bit of massage should break down.

Aside from that it’s all good.

Bonus is that today is the day I get to shed my compression skin. Off come the knickers. Off come the socks.

My next appointment with him is in March 2018. Another year, another calendar needed. For now it’s all about massaging my bits and definitely not thinking about top up surgery or adding nipples.

No more hospitals, no more surgeons.

For a while.

No tricks, just treats

Bar chartFinally some big, good news. The best news from my appointment with the oncologist today.

No chemo. No Herceptin.

Which means no death threats from a common cold, no heart attack, no bone ache, no red pee, no crushing nausea, no hair loss, no blackened nails, no bleeding gums, no neutropenia, no soul destroying fatigue.

None of it.

I went into my appointment with no awareness that this was even on the table. What I thought we were there to discuss was whether the cancer was HER-2 positive and if so I’d need to get the drug Herceptin as a result. As far as I had been told, if I got Herceptin I had to get chemo as they don’t work well separately and are only licensed together. At the last appointment, my oncologist told me I’d likely be on a chemo regime that could affect my heart function. Herceptin also affects the heart so I wouldn’t actually get them together. It didn’t register at the time because I was so stunned that she wanted to give me the full dose of chemo and carpet bomb my system, just in case.

While I was bored, alone and sat in the waiting room for an hour, a wonderful friend I made on this breast cancer ride reminded me that Herceptin must be given with chemo in order to be effective. I remembered then that was exactly the info given to me in other appointments. So when I finally got into the room with my oncologist and she started talking about chemo and Herceptin being separate, I questioned why if they weren’t effective in this way. Eventually after some backwards and forwards, she admitted it was less effective this way but was the only way to deliver them because of the risk to the heart.

This took ten whole minutes to clarify. But it did give her time to question herself and she took it further by deciding to consult the Computer Oracle.

Apparently after they cut out my cancer and analysed it in the lab, they found it was only in an area of 8mm. Rather different to the previous 20mm they predicted it was from the biopsy. They’re also sticking with it being a grade two cancer, less aggressive than my last cancer which was grade three. Tap, tap, tap onto the keyboard. Tick box here, select grade there.

Enter.

There appeared the most beautiful bar chart I will ever see. A huge purple rectangle full of life.

92% ten year survival rate from just getting the surgery.

2% added ten year survival rate from hormone treatment.

1% added ten year survival rate from chemotherapy and Herceptin.

She looked at me and said if it was her, she wouldn’t take the chemo and Herceptin. The brutality and damage done by them weren’t worth the 1% benefit.

Which is the question a lot of cancer patients must ask themselves at some point. Is the treatment worse than the disease?

Today that answer is yes. I’ll take my safe heart, my functioning immune system, my hair, my energy, my freedom, my recovery, my life.

Not for 1% will I risk it.

I left that room, surprised and shocked for good reasons instead of bad. Each day I feel stronger and fitter, it won’t be headed for something much worse. Each day of recovery is just for me. Just for my future. I can make plans again now that I’m free of the chemo prison.

Today I plan to celebrate. With pumpkins and treats and skeleton bunting.

Happy Halloween my friends. Life and death together in one day. As it was meant to be and always will.

 

 

 

 

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.

Let’s talk about pain

I went to have my wounds cleaned and redressed yesterday at the hospital. The waiting area was hot, crowded and noisy. Loud enough that I couldn’t hear the real life crime programme on the tv screen, meant to entertain us. After 15 minutes of waiting, in dashed a harrassed looking woman hunting for a seat. It took me a few seconds to look past the normal clothing and perfect make up and see the poorly patient I spent four days opposite on the ward.

We greeted each other like old friends who had been separated by years and miles. There was much squealing and gentle, affectionate touching of arms. Air kissing has become useful and meaningful for the first time in my life. It allows for intimacy without painful body contact.

She moved a chair to face me and we shared our week’s stories of devastated energy levels, small triumphs and frustrations, compared pharmacology and talked about poo a LOT. She also caught me up on what happened on the ward after I left. I was the first to escape out of our four inmates and carry the guilt of leaving them behind.

My neighbour, the one who rebelled in the wee hours of Day Four, got out the day after me. As did the patient diagonally opposite me. But the woman I was with now in the waiting room was the one with the most complications. I wasn’t expecting to see her so well so soon. I had left them with my cafetiere and they toasted me with a freshly brewed pot. Later that same day the cafetiere was confiscated by the nurses. They did bring them coffee from the pot but the freedom of making their own whenever they wanted had been snatched away.

After everyone else was discharged my friend was left alone on the ward, so they transferred her. To the men’s ward. She then contracted an infection but there was no scanner in the hospital so she was emergency transferred to another hospital.  Her surgeon came to visit her there and stood at the bottom of her bed and scolded that it was her fault she was so sick because she ‘accepted too much morphine’.

Pain is a tricky beast. It is individual. It has multiple sources. It is not well understood. Luckily we have made some progress but it wasn’t until the late sixties that pioneering nurse Margo McCaffery’s description was accepted that “Pain is whatever the experiencing person says it is, existing whenever he says it does.”

Pain is self reported and subjective. Every person experiences it differently and some drugs work better than others. My pain management plan stuck to the standard. Paracetamol, ibuprofen and codeine for breakthrough pain. I knew the value of keeping ahead of pain so I ignored the nurses and took all these drugs every six hours on the dot. I set my alarm now and time my sleep around it.

Best practice on pain management is still patchy. 17% of women who receive a single breast reconstruction experience severe pain the first week after surgery. The NHS target is 5%. Entangled in that reality studies have shown that women and ethnic groups are discriminated against when reporting pain and being prescribed medication.

I witnessed several incidents when my friend reported pain to nurses and doctors and waited an hour or more for medication. One morning she dropped one of her Tramadol tablets and asked the nurse to find it.  Nothing happened for more than an hour. I got out of bed and painfully shuffled to the reception desk and repeated the request before action was taken.

Meanwhile, my friend spiralled into pain. Once that happens, it’s much harder to bring them back. It’s more sensible to have regular doses and keep ahead of the pain. If it gets a grip, you need much stronger drugs and they come with their own problems.

So when she didn’t get her regular dose, she asked for morphine more often. A spiral that took her to infection, danger and then the surgeon’s accusation.

Not all the medical staff behaved this way. The pain management team who visited made a plan for her. The medical doctor visited again and made a plan. He explicitly said that getting on top of the pain was preferable than giving it on request. But the plan didn’t always get through. Either bad practice, lack of training, staff shortages, carelessness, prejudice and sometimes outright neglect, meant she didn’t get what she needed. And it ended in potential disaster. A disaster she was then blamed for.

She cried when he said that to her. Tears pricked my eyes when she retold it.

We commiserated, shared our fears, swapped phone numbers and my name was finally called after an hour of waiting in that hot, smelly room. For once I was grateful for the delay, grateful to hear her words and share mine.

I shuffled to the treatment room and the tape holding my wounds together was gently removed by the nurse. Even though the clinic was crazy busy, she went slow and carefully inspected each scar. She wiped away the ooze when it appeared, cleaned out my bruised and battered belly button. She redressed the many cuts in my skin and said it all looked fine.

I left the room feeling tender and exhausted. I looked eagerly for my friend in the waiting area but she was already having her own wounds cleaned. I hope the invisible damage to her mind, her confidence and her psyche repair soon too. Damage that could have been avoided, words from her caregiver that she should never have been burdened with.

It was not her fault.

She was not to blame for her pain nor for expressing it.

She should have been heard. She should have been cared for better. She deserved that. We all do.

My body, my machine

The cancer is gone. The cancer is gone. I focus on this mantra in the more challenging moments of post operative life. That’s what all this was for. It’s The Reason I Went Through All This. It’s surprisingly easy to forget that when you have a mastectomy. From my own experience with immediate reconstruction, the distraction intensifies.

I woke up at 4am on Day Four after surgery. Actually I was woken up. My neighbour on the ward, was upset because she had been woken up by the nurse for ‘obs’. This is when the nurse takes various different observations. It can be blood pressure, heart rate, etc. For us breast reconstruction folk, it means pressing down gently on our new boobs to make sure the blood was still flowing to them and listening to our heart beat where our nipples used to be, using an ultrasound. It’s akin to the ultrasound you get when you’re pregnant. The mirroring of pregnancy and breast reconstruction are undeniable.

These observations are done in decreasing blocks of time. So the first night it was every half hour, second night every hour, third every two hours and so on. By Day Four, it was every four hours. The day nurse had suggested when she handed over that the night nurse actually do it at 6am just to give us a decent night sleep. Night nurse wasn’t up for it.

My neighbour on the ward was older than me, probably in her early sixties. I’m generally always the youngest kid on the breast cancer block. For the first two days we weakly greeted each other through blue medical curtains, not being able to get beyond our bedside to glimpse one other. I knew her voice intimately before I saw her face.

She had cancer before, when she was 49. She got it removed, refused the chemo, left her home and job and went travelling. She didn’t regret a thing. She eventually went to live in Portugal and looked after her mother until she died. Then it came back two years ago and she had her breast removed, again refused the chemo, got a new boyfriend and now was getting her boob reconstructed.

She was delighted with the result. Women who have breast reconstruction delayed are shown to be happier with their new ones than women who have it immediately after mastectomy. Maybe it’s because their baseline is different, maybe it’s because they’ve had time to consider all their options and make an informed choice. Lots of women (40% of my surgeons patients) go flat. It’s such a personal choice. Each body, each mind will find what’s right for them.

My ward neighbour was a changed woman after cancer. Freer, more focused on self care but also willing to care deeply for others. When I eventually saw her face, she had smiley eyes, laughter lines aplenty. She was soft voiced, but precise and powerful in her words. I liked her immediately.

Over the days that followed she shifted and changed. As we all did. Until that 4am awakening, when the nurse did one too many obs. She got out of her bed, with the stuff she could carry, took her blankets, her pillow and squatted in the day room in protest. It wasn’t just the obs. It was the broken bed she had complained about many times and it had never been replaced. It was the terrible food she had for dinner that she only managed two bites of. It was the pain. The helplessness. The lack of control.

So she took back control. She left the ward and threatened to leave the hospital. I know how she felt. Maybe we were on the same schedule of despair. I awoke to her muttered rebellion as she walked past my bed and then I immediately needed to pee. Getting to the toilet after a mastectomy and reconstruction is no small feat. There are so many steps to complete. We have to sleep in a kind of upright foetal position because our stomachs are too tight to lie flat. I have to locate the bed’s remote control, lower the feet end, higher the head end. Except there isn’t one button for that because the head and feet rise and fall at the same time. So you have to do both and then lower the feet on a separate button. It took me a day and half to figure that one out.

Then still I have to get my legs over the side of the bed which involves a sort of controlled fall. Then find slippers, get glasses on, make sure my drains aren’t tangled, ever so slowly stand upright. Never entirely so because the tightness doesn’t allow for full straight back. Then shuffle along, feet out to the sides like an elderly penguin.

Eventually I found myself sitting on the toilet successfully peeing, and a wave of despair passed over me. What was the point of this? Eventually I’ll get to this part of life again, whatever happens, where I’ll be this debilitated and then I’ll die. When I can’t pee. I can’t reach for something naturally and smoothly. I can’t drink without a straw. I can’t jump out of bed without a series of careful calculations. I can’t reach the call button, so lie crying until I shout for another patient who can to get help.

Despair.

I grew dizzy from it. From the intense awareness of my self as a machine. A being that will break down, malfunction and there will eventually be no more fixing. The wave continues for a while. Then I reach over to get toilet tissue. I’ve gone to the toilet cubicle that I know has a tissue dispenser I can manage. The other toilet’s dispenser is angled just behind you so it’s impossible for me to twist around to use.

I wipe, slowly stand, wash my hands, grab my drains bag and go back to bed. It takes me a full half hour to achieve this pee mission. In that time, my neighbour has been found by another nurse, apologised to, made comfortable in her broken bed, and is asleep and peacefully snoring. When I couldn’t find the point for all this pain, all this suffering, my body as machine put one foot in front of the other and got me into bed too.

I settled in for another little bit of precious sleep before the noise and chaos of breakfast time on the ward. But it’s not until I heard a few hours later that I was going home, I remembered my mantra.

The cancer is gone. The cancer is gone. That is what all this is for.

That is what all this is for.

For now, that’s enough.

Marked for not-death

Marked

I just got home from a long, long afternoon and evening at the hospital where I’ll be having surgery tomorrow. There were forms upon forms to fill in, repeat blood tests and endless repetition of what is going to be happening tomorrow.

I actually don’t mind the information part. ‘Bring on the information’ should be my middle name. If it wasn’t Ann. The part I could’ve done without was each person reminding me that it was a BIG operation. I know it is. Now you’re just scaring me when I wasn’t all that scared before. I guess it has the added layer of knowledge that I elected for this kind of operation so it’s on me if it goes wrong. There’s plenty that can go wrong. A blood clot (10% risk), the whole thing fails and I wake up with empty boobs (1-2%), embolism, thrombosis, necrosis, bleeding, seroma, infection…

As each box on the consent form gets ticked, my heart sinks.

At the end of the long list, the surgeon looks up and smilingly says “but none of that is going to happen to you.” It works. I’m reassured by his confidence. Apparently my CT scan revealed ‘very nice arteries and veins’ ripe for the picking. I think he would take it as a personal affront should my body reject his skilled work.

Then he used my body as a canvas to create his bloody art.

Belly

I haven’t shown you the intense parts of this Sharpie based body art. There are lines, dotted and straight, going across, up, down and through both my breasts. They are lines for cutting, for measuring symmetry and finding medians. They are lines that show me how most of my skin will be removed, folded over and reattached beneath to create new boobs.

I stood in front of him as he sat, boobs at eye level, and he drew on me. I couldn’t decide if it was the fumes from the pen or the total absurdity of my life that was making me dizzy.

The good part about going there today wasn’t that we got all the paperwork or that I’m marked and ready to go tomorrow. Those are things they care about most. The good part was seeing the environment I will be in for the coming difficult days.

Bed

This is my bed. It’s a relief to have a window. And a tree. And the sky. The ward was bright and not too hot. The nurses kind and friendly. There are three other beds and ok my neighbour is a bit racist. Yes, I got that message within two sentences of engaging with her. But I intend to be unconscious mostly for the next couple of days so hopefully she’ll be gone by then.

Generally I’m feeling calm and fine about it. Occasionally I get a flash of frustration that I have to go through this ordeal. Occasionally I get a wave of fear wash over me. But generally I feel ok. And now I have to drink four of these crazy pre-op drinks that are basically sugar in water. So imminently I imagine I’ll be feeling up, up, up.

Pre-op

***I go in at 7:15am tomorrow and out by 7/8pm. Adam will update on Facebook and the blog.

Breathing easy

Queen victoria gardens

This is the garden at Queen Victoria hospital in East Grinstead where I spent all day today at appointments. It pretty much sums up my experience. And it’s the first time I’ve felt moved enough in a medical setting to take a picture of something beautiful. There may have been other beautiful things in other places but I’ve never felt relaxed long enough to notice, nor been sob-free long enough to focus.

Today was different.

For the first time I felt unequivocally  listened to, treated like a whole human person and put firmly at the centre of everything that will happen in the coming weeks. It was such a new feeling that I got over-excited until I remembered that this is how it should feel. This is how it should be.

My first appointment was with the health care assistant who within two minutes had jollily told me she had just been diagnosed with diabetes. We spent most of the time together comparing notes on our various diseases.

She weighed me. My ridiculously unscientific plan to gain more fat in my belly by eating as much cake as possible seems to have paid off. I’m one and a half kilos heavier. No guarantee it’s gone where it’s needed though. But the nurse did commend me on my efforts and reinforced the idea that maybe I was on the right track.

She measured my height. To test for MRSA she got me to stick very elongated cotton buds in my nostrils and down the sides of my thighs. Yes alright, in my groin. I’m not sure why I don’t like that word. It’s a perfectly good word. Perhaps because I link it with the word ‘strain’ and imagine some parallel universe where I attempt to do the splits and it goes predictably wrong.

The MRSA results will be back in two days but even if I have it, they still go ahead with the surgery. I’ll just have to apply some anti-MRSA bodywash before I go in. The hospital has never had MRSA in there but they’re totally up for putting their perfect record at risk to make sure I get into surgery.

Next up was my ECG to measure my heart. All was well as was my blood pressure, heart rate and all my answers to the medical questionnaire were acceptable.

Then I got a break for lunch and that’s where I found this wonderful garden outside the cafe. The coffee was even good and at the randomly awesome price of £1.48, who can say no. Cherry on top, the WiFi was free.

NHS coffee

Last appointment was with the anaesthetist. Up to this point I was thinking maybe the nurses were different. Nurses are generally easier going and I’ve had less problems with them than the consultants. And the anaesthetist was not a nurse. Maybe this bit of the appointment would be tricker.

Nope. She was as awesome, if not more than the nurses before her. She told me in extreme detail what was going to happen before, during and after surgery. She even told me about procedures they’d do that would be invisible to me because I’d be asleep. That I wouldn’t have known about. That maybe I’d end up with bruising from but wouldn’t know where it’d come from. She told me everything.

When I told her the anti-emetics I had in chemo hadn’t worked at all and maybe I’d have problems with the same ones they give me during surgery. She didn’t blink. She didn’t sigh or fob me off. She carefully explained the difference between what chemo does to the nausea centre of the brain and how the anaesthia works. She was attentive and genuinely interested in the story I told of how vaping cannabis solved my nausea in minutes. She got passionate when we discussed the neurology of nausea and pain and the fine line between poison as medicine.

We spent most of the appointment discussing cutting edge research and exploring approaches to cancer and surgery that values good mental health and the benefits of informed patients who are in control of their treatment. She only saw these as positive things. Never once did she get defensive. Never once did she hurry me along or make me feel I was a problem. That my knowledge and need for control were annoyances.

Sun sculpture

I can see why this hospital is a centre of excellence. They take care of the whole person. They are passionate about their field so that when their patients ask questions, they get excited. They want to share their knowledge, not hoard it. They want to learn and are open to patients bringing them new knowledge. They do individualised medicine as much as they can with the tools they have.

Now I’m feeling confident and happy about the surgery next week. This experience is so hard and they just made it that bit easier.

And I had my boobs professionally photographed. In a properly lit studio and everything. What a day.

Decision

I just sent this email to my breast care nurse.

 

Hi Lisa.

Thanks so much for being wonderful yesterday. You were an enormous help and support. I’ve spent the day thinking intensely about what my decision is and this is it.

I’d like to have a bilateral mastectomy with immediate reconstruction both sides using DIEP flap. I realise that the reconstructed breasts will be significantly smaller but I’ve investigated how I feel about that and it’s ok. For me the symmetry and feel going forward into the future is the most important factor. I’ll be infinitely happier and more accepting of the results if we do it this way.

Thanks to the whole team for their patience and understanding. I hope things go smoothly now and looking forward to seeing you again soon.

Many thanks,

Heidi Bachram